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Conceptualisation, assessment and
interventions to alleviate suffering in
the cancer context
A systematic literature review
September 2013
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context: a systematic literature
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© Cancer Australia 2013
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Cancer Australia. Conceptualisation, assessment and interventions to alleviate suffering in the
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Contents
Acknowledgements ..........................................................................................................................iv Executive summary ........................................................................................................................... v Background ................................................................................................................................. v Search methodology ................................................................................................................. v Results and discussion ............................................................................................................... vi Conclusion .................................................................................................................................viii 1 Background and rationale for the review........................................................................... 1 2 Research questions............................................................................................................... 2 3 Method................................................................................................................................... 3 4 5 6 3.1 Inclusion criteria ............................................................................................................. 5 3.2 Literature search............................................................................................................ 6 3.3 Data extraction (Step 4) .............................................................................................. 8 3.4 Synthesis (Step 5) ........................................................................................................... 9 Results of the conceptualisation of suffering .................................................................... 10 4.1 Background ................................................................................................................. 10 4.2 Included studies .......................................................................................................... 13 4.3 Definitions ..................................................................................................................... 14 4.4 A definition/conceptualisation of suffering ............................................................ 17 4.5 Some aphorisms/comments...................................................................................... 18 Results of the assessment of suffering ............................................................................... 24 5.1 Included studies .......................................................................................................... 24 5.2 Criteria for evaluating outcome measures ............................................................. 24 5.3 Measures ...................................................................................................................... 27 Results of interventions to alleviate suffering .................................................................. 104 6.1 Included studies ........................................................................................................ 104 6.2 Psycho-educational interventions .......................................................................... 104 6.3 Meaning-centred interventions .............................................................................. 119 6.4 Supportive-expressive interventions ....................................................................... 128 6.5 Stress-reduction interventions, including yoga, mindfulness,
meditation, and cognitive-behavioural ................................................................ 139 6.6 Spiritual interventions ................................................................................................ 155 Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
i
6.7 Hope-centred interventions .................................................................................... 165 6.8 Other interventions ................................................................................................... 172 7 Discussion........................................................................................................................... 181 8 Limitations .......................................................................................................................... 184 9 Conclusion ......................................................................................................................... 185 Appendix A Suffering, its synonyms and symptoms ............................................................. 186 Appendix B Summary of studies conceptualising suffering ................................................ 187 Appendix C List of ongoing studies ........................................................................................ 270 Appendix D Full list of included studies .................................................................................. 271 Abbreviations ................................................................................................................................. 285 References ...................................................................................................................................... 287 Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
ii
Tables
Table 1 PICO questions ..................................................................................................................... 2 Table 2 Search terms ......................................................................................................................... 7 Table 3 Questions that need to be addressed in relation to a patient-based
outcome measure being considered for a clinical trial .............................................. 25 Table 4 Psychometric properties of measures of suffering ........................................................ 29 Table 5 Psychometric properties of measures of hopelessness/demoralisation ................... 34 Table 6 Psychometric properties of measures of hope ............................................................. 42 Table 7 Psychometric properties of measures of meaning....................................................... 55 Table 8 Psychometric properties of measures of spiritual wellbeing ....................................... 80 Table 9 Psychometric properties of multi-dimensional measures of quality of life
that include a spiritual/existential dimension ................................................................ 90 Table 10 Psychometric properties of measures of spiritual pain, distress and
struggle ................................................................................................................................ 99 Table 11 Psychometric properties of measures of distress in palliative care.......................... 102 Table 12 Intervention characteristics – Psycho-educational interventions (n = 9) ................ 106 Table 13 Summary of results for psycho-educational interventions ........................................ 115 Table 14 Intervention characteristics – Meaning-centred interventions (n = 5) .................... 120 Table 15 Summary of results for meaning-centred interventions ............................................. 125 Table 16 Intervention characteristics – Supportive-expressive interventions (n = 5) ............. 130 Table 17 Summary of results for supportive-expressive interventions....................................... 135 Table 18 Intervention characteristics – Stress-reduction interventions (n = 10) ...................... 141 Table 19 Summary of results for stress-reduction interventions ................................................. 151 Table 20 Intervention characteristics – Spiritual interventions (n = 5) ...................................... 156 Table 21 Summary of results for spiritual interventions ............................................................... 161 Table 22 Intervention characteristics – Hope-centred (n = 3) .................................................. 166 Table 23 Summary of results for hope-centred intervention studies ........................................ 169 Table 24 Intervention characteristics – Other (n = 7) ................................................................. 173 Table 25 Summary of results for other interventions ................................................................... 180 Table 26 Summary of studies conceptualising suffering ............................................................ 187 Figures
Figure 1
Literature searches ............................................................................................................ 17
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
iii
Acknowledgements
Cancer Australia would like to acknowledge the work undertaken by the Psychooncology Co-operative Research Group (PoCoG) in carrying out the systematic review
on which this document is based. The contribution of the Cancer Suffering and Spiritual
Issues Working Group, which provided expert advice and feedback on the review, is also
acknowledged.
Cancer Suffering and Spiritual Issues Working Group:
A/Prof Jane Turner (Chair)
Mr Andrew Allsop
A/Prof Martin Borg
Dr Sue Burney
Prof Paul de Souza
Ms Kaye Duffy
A/Prof Mei Krishnasamy
Dr Peter Loder
Dr Lisa Miller
Prof Geoff Mitchell
Ms Connie Nikolovski
Dr Bruce Rumbold
Dr Addie Wootten
Psychiatrist
Social Worker
Radiation Oncologist
Psychologist
Medical Oncologist
Consumer
Cancer Nurse
Surgeon
Psychiatrist
General Practitioner
Consumer
Senior Academic in theology, spirituality & palliative care
Clinical Psychologist
Contributors
Cancer Australia also gratefully acknowledges the support of the many individuals and
groups who contributed to the development of this report. In particular, Cancer Australia
would like to acknowledge the input of the review team from PoCoG:
Ms Lynley Aldridge
Dr Megan Best
Prof Phyllis Butow
Dr Michelle Peate
Dr Melanie Price
Prof Ian Olver
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
iv
Executive summary
Background
Optimal care of people with cancer incorporates the effective management of physical,
psychological, social and existential/spiritual wellbeing, and strives to alleviate suffering.
Internationally, a number of researchers have been investigating the conceptualisation,
assessment and alleviation of suffering in the context of cancer. However, this information
is not easily accessible, nor have these different streams of literature been integrated.
During the period from May to August 2012, the Psycho-oncology Co-operative Research
Group (PoCoG) was commissioned by Cancer Australia to design and undertake a
systematic literature review aimed at answering the following research questions:
1. What are the current conceptualisations of suffering in people diagnosed with
cancer?
2. What instruments/tools are available to assess the suffering of people diagnosed with
cancer?
3. What interventions have been demonstrated to be effective in dealing with the
suffering of people diagnosed with cancer?
The results of the review will be used to inform the development of topic-specific
guidance on Cancer suffering and spiritual issues to complement the Clinical practice
guidelines for the psychosocial care of adults with cancer.
Search methodology
The review was conducted via the following methodology:
Step 1.
A systematic search of the literature to identify all English-language studies
published between 1992 and 2012 that focused on the conceptualisation
of suffering in cancer patients; the assessment of suffering in cancer
patients; or interventions aimed at relief of suffering in cancer patients.
Step 2.
Review against selection criteria of all retrieved articles.
Step 3.
Manual searches to identify any additional relevant articles not retrieved
by the systematic literature search.
Step 4.
Data extraction and quality assessment of selected articles.
Step 5.
Synthesis.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
v
Results and discussion
Research question 1 – What are the current conceptualisations of suffering
in people diagnosed with cancer?
The searches resulted in a final pool of 125 articles conceptualising suffering. Synthesis of
the definitions presented in these studies, together with the results of studies exploring the
experience of suffering in the context of cancer, resulted in the following
definition/conceptualisation:
Suffering is a multi-dimensional phenomenon, encompassing physical, spiritual,
psychological and existential aspects. It is a subjective experience which is unique
to each individual. It may be a response to a perceived threat, and/or a
breakdown of coping. It involves common elements such as loss of meaning, loss
of hope, loss of relationships (i.e. isolation), and other associated losses, although
these may be inflected and interpreted differently by each individual.
It should be emphasised that the focus of this review was on suffering as a multidimensional phenomenon, and not simply psychological or physical morbidity.
Synthesis of the themes of the included articles resulted in the following key findings:
1) Suffering can be difficult to articulate and to detect clinically
2) Suffering unacknowledged can be ‘doubled’ suffering
3) Suffering can be – but is not necessarily – transformative
4) Meaning can be – but is not necessarily – found in suffering, and this meaning may
contribute to its alleviation (or may help people to endure suffering), and
5) Culture and context influence the experience and expression of suffering.
Research question 2 – What instruments/tools are available to assess the
suffering of people diagnosed with cancer?
The searches resulted in a final pool of 90 articles reporting on the psychometric
properties of 58 instruments/tools available to assess suffering, its synonyms, and/or its
symptoms. These are summarised in Chapter 5 of this report.
Two eligible measures of suffering for which psychometric properties are available were
identified: the Mini-Suffering State Examination (MSSE) (physician completed) and the
Pictorial Representation of Illness and Self Measure (PRISM) (patient completed). The
latter appears to have more evidence of validity and reliability than the former, although
more definitional clarity is required.
Seven instruments measuring hopelessness/demoralisation were identified: the Beck
Hopelessness Scale (BHS); the Despair subscale of the Cancer Care Monitor (CCM);
Jacobsen et al’s Demoralisation Scale; Kissane et al’s Demoralisation Scale; the
Hopelessness Assessment in Illness (HAI) Questionnaire; a clinician-administered singleitem screening instrument for hopelessness; and the Subjective Incompetence Scale (SIS).
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
vi
The Hopelessness Assessment in Illness Questionnaire and Kissane et al’s Demoralisation
Scale appear to be the most promising for assessing hopelessness and demoralisation,
respectively, in the advanced cancer context. Both, however, require further exploration
of their psychometric properties, and other tools may be optimal depending on the
research question.
Five measures assessing hope were identified. These included the Adult Dispositional
Hope Scale (ADHS); the Herth Hope Scale (HHS)/Herth Hope Index (HHI); the Hope
Differential (HD)/Hope Differential-Short (HDS); Miller’s Hope Scale (MHS); and the
Nowotny Hope Scale (NHS). Based on its brevity, frequency of use, and the availability of
validation data in the cancer context, the Herth Hope Index may be optimal.
Twenty scales were identified which measured meaning: the Chinese Cancer
Coherence Scale (CCCS); the Constructed Meaning Scale; the meaning/peace
subscale of the Functional Assessment of Chronic Illness Therapy – Spiritual Wellbeing
Scale (FACIT-Sp); the Illness Cognitions Questionnaire (ICQ), the Internal Coherence Scale
(ICS); the Life Attitude Profile (LAP)/Life Attitude Profile – Revised (LAP-R); the Life
Evaluation Questionnaire (LEQ); the Meaning in Life questions (including the Benefit
Finding Scale, BFS) used by Tomich and Helgeson; the Meaning in Life Questionnaire
(MLQ); the Meaning in Life Scale (MILS); the Meaning in Suffering Test (MIST;, the
Perceived Meanings of Cancer Pain Inventory (PMCPI); the Personal Meaning Profile
(PMP); the Positive Meaning and Vulnerability Scale; the Purpose in Life Test (PIL); the
Purposelessness, Understimulation, and Boredom (PUB) Scale; the Schedule for Meaning
in Life Evaluation (SMiLE); the Sense of Coherence (SOC) Scale; the Sources of Meaning
Profile (SOMP); and the World Assumptions Scale. The optimal measure of meaning will
vary depending on the purpose and context of assessment. However, for assessing the
spiritual dimension of global meaning, the Functional Assessment of Chronic Illness
Therapy – Spiritual Wellbeing Scale is likely to be optimal, and the Life Attitude Profile –
Revised should be considered a strong candidate when exploring the relationship
between global meaning and other variables.
Eleven measures assessing spiritual wellbeing were identified. These included a short “Are
you at peace?” item; the Functional-Assessment of Chronic Illness Therapy – Spiritual
Wellbeing Scale (FACIT-Sp); the JAREL Spiritual Well-Being Scale; a Linear Analogue SelfAssessment (LASA) item for spiritual wellbeing; the Peace, Equanimity, and Acceptance
in the Cancer Experience (PEACE) scale; the Self Transcendence Scale (STS); the Spirit 8;
the Spiritual Health Inventory (SHI); the Spiritual Perspective Scale (SPS); the Spirituality
Transcendence Measure (STM) and the Spiritual Well-Being Scale (SWBS). The FunctionalAssessment of Chronic Illness Therapy – Spiritual Wellbeing Scale may also be optimal for
assessing spiritual wellbeing. The advantages of the FACIT-Sp include its development
and validation in a large cancer population, its brevity, the frequency with which it is
used in the context of cancer, and the substantive data available about its psychometric
properties and to facilitate interpretation.
Nine multi-dimensional measures of quality of life which included a spiritual/existential
dimension were identified. These included the Hospice Quality of Life Index (HQLI); the
Long-Term Quality of Life (LTQL) instrument; the McGill Quality of Life (MQOL)
Questionnaire; the Quality of Life at the End of Life – Cancer (QUAL-EC) scale; the Quality
of Life Concerns in the End of Life (QOLC-E) scale; the Quality of Life for Cancer Survivors
(QOL-CS) scale; the Quality of Life Index (QLI); the Skalen zur Erfassung von Lebens
Qualitat bei Tumorkranken-modified version (SELT-M); and the World Health
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
vii
Organization’s Quality of Life Measure (WHOQOL). For multi-dimensional quality of life
measurement incorporating an existential or spiritual domain, the McGill Quality of Life
questionnaire or Functional-Assessment of Chronic Illness Therapy – Spiritual Wellbeing
Scale appear optimal because substantive data are available about psychometric
properties and interpretation in the cancer context.
Two measures specifically assessing distress in the palliative care setting were identified: a
clinician-administered single-item screening instrument for assessing desire for death, and
the Schedule of Attitudes toward Hastened Death (SAHD). The latter questionnaire
appears promising for assessing desire for death in the context of advanced cancer,
although further validation in a larger sample may be recommended.
Two measures assessing pain, distress or struggle of a spiritual nature were identified: the
Existential Loneliness Questionnaire (ELQ) and the Spiritual Distress Scale (SDS). Further
research validating these measures in larger cancer samples appears necessary before
either of these measures can be recommended on the basis of currently available
information.
Research question 3 – What interventions have been demonstrated to be
effective in dealing with the suffering of people diagnosed with cancer?
The searches resulted in a final pool of 42 articles evaluating the effectiveness of
interventions to alleviate the suffering of people diagnosed with cancer. The studies were
sorted into seven categories depending on the intervention type. There was evidence
suggesting meaning-centred interventions were efficacious in improving meaning in
advanced cancer, and hope-centred interventions were efficacious in improving hope
in patients at various stages of the disease trajectory. Stress reduction interventions
appeared efficacious in improving benefit finding/meaning and spiritual wellbeing,
predominantly in women with breast cancer, but also in men with prostate cancer.
Evidence for the efficacy of both psycho-educational and spiritual interventions in
improving spiritual wellbeing was mixed. Supportive-expressive interventions – with the
exception of forgiveness therapy – did not generally appear to be efficacious in
improving hope, spiritual wellbeing, self-transcendence and purpose in life; indeed,
results for hope and spiritual wellbeing appeared to favour the control group in two
studies with women with newly diagnosed breast cancer. Finally, there was little or no
evidence for the efficacy of creative and healing arts and other assessed interventions
such as animal therapy and haptotherapy (touch therapy).
Conclusion
This report integrates research published between 1992 and 2012 to identify common
elements in the literature on suffering in the context of cancer, which informs the
conceptualisation of suffering presented. Interventions with promise for alleviating some
of the symptoms of suffering include meaning-centred, hope-centred and stressreduction interventions. There is mixed or substantially less evidence currently available to
demonstrate the efficacy of psycho-educational and spiritual interventions, and little
evidence currently available demonstrating the efficacy of supportive-expressive
interventions (with the exception of forgiveness therapy), creative and healing arts
therapies, and other miscellaneous interventions.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
viii
1
Background and rationale for the review
Spirituality and suffering in the context of life-limiting disease have featured in an
increasing number of publications over the last 10 years. A recent review of suffering in
palliative care observed that “Existential and spiritual suffering are among the most
debilitating conditions in dying patients and yet are a neglected area of palliative care
because of the confusion over definition, lack of conceptual understanding, few
documented interventions, and the absence of appropriate training for palliative care
providers”.1
Internationally, a number of researchers have been investigating the conceptualisation,
assessment and alleviation of suffering in recent years, but this information is not easily
accessible as research on suffering is found under many different topics and the different
streams of literature have not been integrated.
Cancer Australia undertakes projects to review clinical practice guidelines and provide
topic-specific updates. The Clinical practice guidelines for the psychosocial care of
adults with cancer (2003) were reviewed in 2012 and additional topics were identified for
further investigation to complement the existing information in the guidelines. As part of
this process, Cancer Australia engaged PoCoG to undertake systematic reviews of the
available evidence on the conceptualisation and assessment of suffering, and
interventions to alleviate suffering in the context of cancer.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
1
2
Research questions
The literature review seeks to answer three key questions regarding suffering in the
context of cancer:
1. What are the current conceptualisations of suffering in people diagnosed with
cancer?
2. What instruments/tools are available to assess the suffering of people diagnosed with
cancer?
3. What interventions have been demonstrated to be effective in dealing with the
suffering of people diagnosed with cancer?
PICO (Population, Intervention, Control, Outcome) questions were identified for each
component of the review as shown in Table 1 below.
Table 1
PICO questions
I
Intervention
N/A
C
Control,
Standard
N/A
2. Instruments/tools
P
Population
Adult cancer
patients
(diagnosis
through to
survivorship/
palliation)
As above
N/A
N/A
3. Interventions
As above
Specific
interventions
which
effectively
alleviate
suffering
Usual care,
no
intervention,
or other
control
Review Question
1. Conceptualisations
O
Outcome
Conceptualisation of
cancer suffering
Instruments/tools
assessing cancer
suffering
Alleviation of cancer
suffering
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
2
3
Method
Overview
During the period from May to August 2012, staff at PoCoG in collaboration with Cancer
Australia designed and undertook a systematic literature review, which was conducted
via the following methodology.
Step 1.
A systematic search of the literature to identify all English-language studies
published between 1992 and 2012 that focused on the conceptualisation
of suffering in cancer patients; the assessment of suffering in cancer
patients; or interventions aimed at relief of suffering in cancer patients.
Step 2.
Review against selection criteria of all retrieved articles.
Step 3.
Manual searches to identify any additional relevant articles not retrieved
by the systematic literature search.
Step 4.
Data extraction and quality assessment of selected articles.
Step 5.
Synthesis.
A flow diagram presenting the results of literature searches is presented in Figure 1 below.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
3
Figure 1
Literature searches
Records identified through
database searching
(n = 6,206)
Records after duplicates
removed (n = 4,777)
Title/abstract screened
(n = 4,777)
Full-text assessed
for eligibility
(n = 1,047)
Identified by
reference/author
checks (n = 52)
Full-text eligible for
data extraction
(n = 205)
Articles from which
data extracted (n = 257)
Conceptualisation (n = 125)
Assessment (n = 90)
Interventions (n = 42)
Records excluded
(n =3,730)
 Not adult cancer patients
(n = 1,167)
 Outcomes 1 (n = 2,495)
 Publication type (n = 68)
Records excluded
(n = 842)
 Not adult cancer patients
(n = 12)
 Outcomes 1 (n = 303)
 Publication type (n = 13)
 Language not English (n = 2)
 Use of measure only (n = 363)
 Review only (n = 48)
 Conceptualises spiritual or
existential ‘issues’ or
‘concerns’ only (n = 37)
 Intervention not CCT or RCT
(n = 35)
 Measure ineligible (n = 10)
 Foreign language validation
(n = 18)
 Duplicate content (n = 1)
Excluded on outcomes: focus of article was not conceptualisation of suffering;
assessment of suffering; or empirical evaluation of interventions aimed at relief of
suffering.
1.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
4
3.1
Inclusion criteria
In order to be included, reports had to:
1. Be published in a peer-reviewed journal
2. Be published between 1992 and 2012
3. Be written in English
4. Focus on people who had been diagnosed with cancer
Note: For the conceptualisation review, research conducted with healthcare
professionals and/or carers was also included, as long as the focus of the paper was
the conceptualisation of the suffering of adults with a cancer diagnosis. Seminal (i.e.
frequently cited) theoretical articles conceptualising suffering more generally were
also eligible for inclusion
5. Be about adults (aged 18 years and above)
6. Report on outcomes relevant to the three review questions outlined above (i.e.
conceptualisation of suffering in cancer patients; assessment of suffering in cancer
patients; or interventions aimed at relief of suffering in cancer patients)
7. Assess tools/instruments that measured either suffering or one of its synonyms or
symptoms (as listed in Appendix A) for the assessment review
8. Have a study design of either a controlled trial or a randomised controlled trial for
studies evaluating interventions, as these provide more rigorous evidence to
evaluate the effectiveness of an intervention, and
9. Include at least either suffering, or one of its synonyms or symptoms (as listed in
Appendix A) as one of the outcomes measured for the assessment of interventions.
3.1.1
Exclusion criteria
Reports were excluded if they:
1. Focused on children with cancer, parents of children with cancer, other carers of
patients with cancer, or adult survivors of childhood cancers
2. Focused on suffering in patient groups with and without cancer, unless the results
were reported separately for cancer patients, or unless the sample was
predominantly cancer patients (e.g. 95% or more)
3. Were books, book chapters, dissertation abstracts or conference abstracts. (Note:
recent conference abstracts are listed in Appendix B, which lists ongoing research of
interest)
4. Used or reviewed measures of interest without reporting psychometric properties of
the instrument. (Note: these articles were separately reviewed to generate a list of
additional measures for which instrument development/validation studies were
subsequently sought)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
5
5. Focused predominantly on spiritual or existential ‘issues’ or ‘concerns’. Articles fitting
within this category were closely reviewed to determine whether they simply
explored spiritual or existential aspects of life that might be impacted (positively or
negatively) by a cancer diagnosis, or whether they were in fact reporting on
‘distress’, ‘pain’, ‘crisis’, ‘anguish’ or another synonym of ‘suffering’. Such ‘issues’ or
‘concerns’ might give rise to ‘distress’, ‘pain’, crisis’, ‘anguish’ or ‘suffering’, but it has
been suggested by some researchers that this is not necessarily the case.2 There are
also a number of existing review papers that explore these topics.3-5 For these
reasons, only the second category of papers (i.e. those reporting on ‘issues’ and
‘concerns’ that were synonyms of suffering) were included in this review
6. Were not a controlled trial or a randomised controlled trial for studies focusing on the
assessment of interventions.
3.2
3.2.1
Literature search
Systematic search of the literature (Step 1)
The following databases were systematically searched:

MEDLINE

EMBASE

the Cochrane Library, and

PSYCINFO.
Search strategy
1. To ensure a sufficiently broad range of conceptualisations of suffering were covered
by this conceptual review, the search strategy was drafted using an iterative
process. Results from preliminary searches were used to develop a list of concepts
(see Appendix A) identified in the literature as synonymous with suffering, or
potentially measurable ‘symptoms’ of suffering. Search terms were added to the
search strategy as necessary to ensure appropriately broad coverage. For maximum
efficiency, an optimal balance between sensitivity and precision was sought, and
alternatives sought for terms yielding many irrelevant results.
2. The identified search terms (see Table 2) were searched for in each of the databases
listed above.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
6
Table 2
Search terms
Review topic
Search Terms
Conceptualisation
suffering, existentialism, meaning, purpose, transcendence, spirituality,
hope, hopelessness, faith, peace, sense of coherence, demoralisation,
dignity, total pain
Cancer, neoplasm
Instruments/tools
Articles for the assessment review were identified by manual review of
articles identified for the conceptualisations review.
Interventions
Articles for the interventions review were identified by manual review
of articles identified for the conceptualisations review.
3. In each database when applicable, for each term, the scope note was checked to
ensure its appropriateness, the ‘used for’ field was checked for synonyms which
could be included as free text terms, broader terms were viewed to assess whether a
broader heading would be more appropriate (subsuming all narrower terms,
including the current term), and narrower terms were explored to assess whether
they should also be included (the search term was exploded where this was the
case).
4. Where possible, both subject heading(s) and free text term(s) were used for each
concept. If a search term did not map well to a subject heading, a free text term
was used.
5. The final results were then limited to English language, year of publication 1992–2012,
and peer-reviewed journal articles.
6. Search results were then merged for all databases, and duplicates removed to
produce one set of results.
7. Eppi-Reviewer 4 software was used to organise and manage articles during the
review process.
3.2.2
Review of retrieved articles against selection criteria (Step 2)
Articles returned by the above searches were examined manually for relevance
according to the selection criteria.
3.2.3
Manual searches (Step 3)
Manual searches were conducted to identify any additional relevant articles not
retrieved by the systematic literature search. These involved:
1. Thorough examination of the reference lists of included papers and review articles
identified by the above searches to identify further relevant articles not picked up by
the database search
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
7
2. Author searches to identify recent publications by authors whose work had been
included in the review
3. Supplementary searches to identify articles reporting psychometric information for
tools or measures identified in Steps 1 and 2 above, and
4. Supplementary searches of conference abstracts to inform a list of recent and
ongoing research studies of relevance (see Appendix B).
3.3
Data extraction (Step 4)
Information was extracted from articles meeting the inclusion criteria for each of the
research questions. Where results were reported from the same study in more than one
publication, articles were reviewed in combination as necessary to extract the
information desired.
For conceptualisation, the following data was extracted:
1. Country/countries in which research was conducted; if not specified (e.g. for a
theoretical article or literature review) author affiliation(s) at time of publication
2. Aim/objective as reported by authors (this text was edited for brevity where
necessary to generate a comprehensive summary of the reported purpose of the
article)
3. Type of study, with quantitative studies assigned study types consistent with the
National Health and Medical Research Council (NHMRC) study design glossary6
4. Population: age; gender; % cancer diagnosis; cancer type, severity, timing and
treatment; ethnicity/religion; where any of these variables were not recorded, ‘not
specified’
5. Definitions presented by authors (original definitions presented in ‘definitional
language’) were extracted: e.g. “we posit that this is suffering”; seminal (i.e.
frequently cited) definitions were extracted as secondary quotations where the
original source was excluded from the above searches (e.g. book chapters and
work published prior to 1992); definitions that drew upon – but modified – the work of
other authors were also included, and where discussion was framed within the
context of another author’s definition, this was indicated in the extraction process,
and
6. Results as reported by authors – ideally from their summary of results; alternatively
headings used in reporting results, key themes highlighted in abstract, or summary of
main points from text.
For assessment, for each instrument/validation study the following data was extracted:
1. Properties of the measure: mode of administration; number of items; response scale;
scoring
2. Details of the initial and key validation samples
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
8
3. Details of the item development process
4. Information on any domains/subscales, and
5. Information on reliability, validity, and responsiveness to change.
For interventions, the following data was extracted:
1. Country/countries in which research was conducted; if not specified, author
affiliation(s)
2. Population: age; gender; % cancer diagnosis; cancer type, severity, timing and
treatment; where any of these variables were not recorded, ‘not specified’
3. Details of the intervention
4. Details of the method, including the type of study, based on the NHMRC study type
glossary,6 and
5. Details of results.
3.3.1
Quality assessment
Studies evaluating the efficacy of interventions were graded for quality using the
QualSyst quantitative checklist.7 The calculated scores were defined as strong (score of
> 80%), good (70–80%), adequate (50–70%) or limited (<50%).8
Double coding was performed for quality assessments. Where reviewers disagreed, the
article was discussed until consensus was reached.
3.4
Synthesis (Step 5)
For the conceptualisation review, papers were read line by line, and themes recurring
within the extracted definitions of suffering and/or the presentation of results for each
paper were identified using thematic synthesis.9
Results extracted at Step 4 were synthesised, with interventions grouped into a number of
distinct types to facilitate interpretation. The Evidence Base and Consistency criteria of
the NHMRC Evidence Statement was completed for each specific research question
identified for the interventions review, based on these groupings.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
9
4
Results of the conceptualisation of suffering
The topic of suffering has been overlooked by much of the literature exploring the
experiences and care of people following a diagnosis of cancer. The literature that does
exist is not well integrated. Preliminary literature searches suggested to the review team
that to synthesise what is known about suffering in the context of cancer, a number of
different strands of literature would need to be explored and integrated. The team
therefore adopted an iterative search strategy, with results from preliminary searches
used to develop and maintain a list of concepts identified in the literature as synonymous
with suffering, or potentially measurable ‘symptoms’ of suffering (see Appendix A). In this
section of the review the focus is only on definitions/conceptualisation of suffering and its
synonyms. In the subsequent assessment and interventions sections, a broader
perspective is adopted, focusing also on the ‘symptoms’ of suffering.
This chapter begins with a brief summary of the disparate bodies of work the review team
sought to integrate in order to conceptualise suffering in the cancer context, and an
argument in favour of their integration. A summary of definitions extracted from the
articles included in the review follows. Commonalities between these definitions are
explored, as well as dissenting opinions, and key elements of these definitions are
synthesised to generate a conceptualisation of suffering. Finally, a series of comments/
aphorisms (i.e. brief statements of a principle or truism) for understanding and alleviating
suffering are presented, based on a synthesis of the results of conceptual papers
included in this review.
4.1
Background
This section briefly summarises the strands of literature integrated within this review.
4.1.1
Suffering
Frankl
Victor Frankl was an Austrian psychiatrist who developed a theory of psychoanalysis
called ‘logotherapy’. It is based on the premise that the primary human drive is not
pleasure but the pursuit of meaning. He survived internment in Auschwitz during the
Second World War and described his own experiences and those of other prisoners to
explain his theory in his book ‘Man’s Search for Meaning’.
Frankl proposed “If there is a meaning in life at all, then there must be a meaning in
suffering. Suffering is an ineradicable part of life, even as fate and death. Without
suffering and death human life cannot be complete”.10, p. 67 He believed that man is free
to make a choice regarding how he accepts unavoidable suffering and it is this which
determines whether he will prevail. When we see meaning in life, we are able to endure
suffering. Such meaning can exist even in a hopeless situation (such as terminal disease)
“when we are no longer able to change a situation … we are challenged to change
ourselves”10, p. 112. He saw each individual person’s experience of suffering as unique, both
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
10
in terms of the opportunity for growth and the way that person bore this burden. He
described the process of discovery of the true meaning of one’s life, or connection to
that which is greater than oneself, as ‘self-transcendence’.
Frankl’s theories have greatly influenced contemporary psychotherapeutic approaches
to the management of suffering in cancer patients. Many therapies are based on his
meaning-centred approach and facilitation of self-transcendence.11, 12 His theories are
also used to explain the process of personal growth observed in cancer patients who
suffer.13
Saunders
Dame Cicely Saunders, widely acknowledged as the founder of the modern hospice
movement, used the term ‘total pain’ to describe the suffering of dying patients. Total
pain, according to Dame Saunders, includes physical, psychological, social, emotional
and spiritual elements. Her research focused on patient narratives and as a result she was
also concerned about the meaning of pain. “A cry just to be rid of pain is not worthy of
man … Man by his very nature finds that he has to question the pain he endures and
seek meaning in it”.14 She saw physical symptoms to be indivisible from both the body
and the personality of the patient, and therefore unable to be relieved solely through
medication. Her ideas were influenced by Frankl, the Book of Job, and Rene Leriche, a
surgeon who wrote in 1939 “Pain is the resultant of the conflict between the stimulus and
the whole person”.15 Saunders’ encouragement to consider the whole person when
practising palliative care is the basis on which some authors explore the multi-dimensional
aspects of suffering.16, 17
Cassell
Eric Cassell’s 1982 paper argued that suffering is experienced by persons, not merely by
bodies, and “has its source in challenges that threaten the intactness of the person as a
complex social and psychological entity”.18, p. 639 He noted that suffering can include pain
but is not limited to it, and stressed that the physician has an obligation to understand the
nature of suffering so as to avoid instituting treatment which, while technically adequate,
not only fails to relieve suffering but may become a source of suffering itself.
He describes the separation of mind and body which influences the current approach to
medical care and attributes it to Cartesian dualism. This philosophy was historically
influential in separating science from the church (allowing science to deal with ‘nonspiritual’ physical matters), but has developed into an unhelpful construct. He suggests
that by separating the mind and body, “the concept of the person ... has been
associated with that of mind, spirit, and the subjective” and therefore becomes less
‘real’. This means that suffering is either seen as subjective and not within medicine’s
domain, or identified exclusively with physical symptoms. He sees this separation as not
only misleading, but itself a source of suffering for the patient. He called for a rejection of
the mind/body dichotomy and a recognition that suffering persons need to be
recognised in their wholeness. He further described the possible causes of suffering and
the importance of its perceived meaning to the individual. Cassell’s model of suffering is
widely recognised as an accurate description of what is observed in clinical care and is
the definition used by many authors in the current review (e.g., 19, 20, 21).
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
11
Phenomenological explorations of suffering
Phenomenology is both a philosophical school of thought and an approach to research
which aims to describe and interpret people’s perspectives and perceptions, and
examine how they are related to their experience of the world around them.22, p. 31 Many
researchers studying suffering have applied a phenomenological approach, which gives
prominence to narratives of suffering and the ways in which individual patients make
sense of their suffering experience e.g. Arman, 2002 23; Chio, 2008 24; Chou, 2007 25;
Cohen, 2004 26; and Coward, 2004 27. This allows for the multi-faceted nature of the
suffering of embodied human beings interacting with their environment to be captured in
all its complexity.28
Suffering in the context of requests for euthanasia/palliative sedation
Another strand of literature which addresses the issue of suffering is the literature exploring
the place of euthanasia and physician-assisted suicide in clinical medicine. While these
practices have been legalised in some jurisdictions for the purpose of relieving ‘refractory
suffering’, very few papers define the term. In that sense this literature had limited
usefulness in this review. Some papers discussed the more recent practice of ‘palliative
sedation’ for existential distress (as opposed to physical distress)29-32 which is
controversial.33, 34 Furthermore, loss of meaning and purpose appeared to account for
more requests for hastened death than physical symptoms alone35 and the two were not
distinguished in all papers. This literature was initially included and then carefully reviewed
so that only those papers which addressed relevant issues remained.
Alleviation of suffering as the goal of palliative care
The dimension of spirituality has always been incorporated into the discipline of palliative
care as part of the commitment to holistic care.36 As such, palliative care aims to relieve
the suffering of the whole person, and may represent a therapeutic option to the
suffering patient. Many of the authors represented in this review come from a palliative
care background and are aware of the challenges in diagnosing and relieving suffering
in the clinical context. Nonetheless, referral to a palliative care service was noted by
some authors as an intervention for the cancer patient who is suffering. The World Health
Organization recommends application of palliative care principles “as early as possible in
the course of any chronic, ultimately fatal illness”.36
4.1.2
Demoralisation
Demoralisation was described by Frank as resulting from a persistent failure to cope with
stresses that people expect themselves – and are expected by those close to them – to
cope with. It is associated with feelings of impotence, isolation and despair, damaged
self-esteem, and hopelessness.37 In a narrative review of demoralisation and the related
concepts of hope, hopelessness and meaning,38 Clarke and Kissane found convergence
between this idea and the ideas of Cassell (above) and Engel.39 They described
demoralisation as a condition experienced by the medically or psychiatrically ill as
“existential despair, hopelessness, helplessness, and loss of meaning and purpose in life”.
They suggested that, although it shared symptoms of distress, “demoralisation is
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
12
distinguished from depression by subjective incompetence in the former and anhedonia
in the latter”. They identified it as an important construct with established descriptive and
predictive validity. A number of authors found the concept of demoralisation clinically
important.38, 40-43
In the current review, the authors found that the term ‘demoralisation’ was at times used
as a synonym of depression, but at other times used in the sense described by Clarke and
Kissane. A similar observation was made by other authors.42 In view of the parallels
between Clarke and Kissane’s definition of demoralisation and suffering as the focus of
this enquiry, it was decided to include the term in the search strategy for this review, with
the papers screened carefully to check which definition was operationalised.
4.1.3
Spiritual/existential pain or suffering
In reviewing the literature on suffering, it was obvious to the authors that several other
terms were used synonymously with ‘suffering’. One commentator directly equated
spiritual pain with suffering;44 others highlighted existential distress as an imperative
component of the concepts of suffering, spiritual pain, and demoralisation;45 and many
used the terms ‘spiritual/existential suffering’, ‘pain’ and/or ‘distress’ interchangeably. In
order to capture all papers which addressed the issue of suffering in cancer patients, the
authors compiled a list of synonyms of suffering to be used as keywords in the search
strategy, which are included in Appendix A.
A number of existing review papers explore the way in which a cancer diagnosis might
impact (positively or negatively) on existential and/or spiritual aspects of life,3-5 and
although such issues may give rise to ‘distress’, ‘pain’, ‘crisis’, ‘anguish’ or ‘suffering’, this is
not always necessarily the case 2. For the purposes of this review, therefore, papers
exploring existential and/or spiritual issues were included only to the extent that they also
described ‘distress’, ‘pain’, ‘crisis’, ‘anguish’, and/or ‘suffering’.
4.2
Included studies
Systematic searches identified 126 relevant articles. One of these, Moore, 2004a,46 was
excluded because of the extent to which it duplicated the content of another included
article, Moore, 2004b47. This left a total of 125 articles from which data was extracted.
These studies are summarised in Table 26 in Appendix B. Please note that in Table 26,
levels of evidence are not assigned to individual studies. The goal of this section of the
review was to distill definitions and concepts emerging from the literature, in studies of
any type, and levels of evidence were not considered relevant, given the nature of this
task.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
13
4.3
Definitions
This section synthesises key elements of the definitions for suffering and its synonyms extracted
from papers included in this review, highlighting commonalities (and occasional
divergences). It is interesting to note from Table 26 in Appendix B that a significant proportion
of the discussion of suffering took place in the absence of any explicit definition of the
phenomenon. A number of papers did not formally define suffering, but talked about it in a
way that inferred a definition, or assumed a common understanding. This is in keeping with
the results of one study which interviewed nurses about suffering, and found that they tended
to discuss reasons for suffering (the ‘why’ of suffering) more often than its characteristics (the
‘what’), concluding that the ‘what’ of suffering was ‘remote’ and ‘intangible’.48 Others,
however, have offered more tangible attempts to explore the ‘what’ of suffering, and
findings from these papers are synthesised below.
Suffering as multi-dimensional
Many researchers have followed in the footsteps of Cassell18 and Saunders49 and highlighted
the multi-dimensional nature of suffering. They emphasise that suffering not only relates to
pain and the physical dimension, but also has psychological, existential/spiritual/religious,
and social dimensions.50 Like Cassell, they emphasise that suffering is a threat to the integrity
of the whole person.18, 51, 52
Wilson et al53 found, for example, that psychological distress, existential concerns, and socialrelational worries were all associated with reports of suffering. Perrault reported that the
women in her qualitative study experienced suffering in “every human dimension: physical,
psychological, social/emotional and spiritual”.54 Other qualitative studies47, 55 – and a recent
review paper56 – have similarly found patients reported suffering in each of these dimensions.
Kahn and Steeves noted that the possible sources of suffering are countless.57
The spiritual and emotional dimensions of distress appear particularly difficult to disentangle
50, 58, 59, and several writers have highlighted the importance of acknowledging the often
overlooked spiritual/existential dimension.50, 54, 58, 60
Others go so far as to suggest that there are also socio-political and economic dimensions to
suffering.61, 62 They highlight that cancer diagnoses are disproportionately distributed such
that minority populations suffer a worse burden of illness, and that in the context of a history
of colonisation and oppression, such diagnoses can be seen as further contributions to a
series of conditions “that have robbed them of the opportunity to live full, coherent lives”.61
The absence of a strong correlation between the presence of physical pain and reports of
suffering has been highlighted by some writers.63-65 However, although Wilson et al53
acknowledge the association between other dimensions and suffering, they found that pain
was most strongly associated with suffering. Cohen and Mount describe the relationship
between pain and quality of life as bi-directional, suggesting that perception of pain is
influenced by multi-dimensional suffering.16 It was also noted that some patients may have
significant nociceptive pain (i.e. damage to body tissue or other physical assault) but little
pain expression, depending on the meaning they attributed to their symptoms.26 Chapman
and Gavrin66 examined the underlying physiology of pain and suffering and suggested that
physical pain leads to a stress response which, when prolonged, can lead to disequilibrium
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
14
affecting all dimensions of the person, therefore its control is significant for relieving suffering
from all causes.
Some writers imply that the physical dimension is primary,55, 67 suggesting that when the
physical dimension is dealt with, existential issues can be articulated and explored.59, 68, 69
However, others (e.g. Rosen) question this ‘linear, medical model’.31
Many highlight the danger of focusing on pain or symptoms in isolation, or reducing suffering
to single constituent elements,5, 70-74 rather than treating the ‘whole person’ who is suffering.
Acknowledging the holistic nature of pain – and in particular the spiritual dimension of
suffering – is argued to protect patients from misinterpretations and missed problems; avoid
exposing them to futile, inappropriate, and burdensome treatments; and ensure patients and
physicians are not denied opportunities for personal growth.69, 70
Ultimately, it is argued that assessment 31 must be multi-dimensional, as must care.34, 58, 75-80
Perhaps the best way of conceiving the multi-dimensional nature of suffering is to consider
the “well-known pie diagram” drawn upon by Wein:81
“There is a well-known pie diagram that places suffering at the centre of the pie with
different segments angling out – the segments include social, physical, spiritual, and
psychological factors. Each segment of the pie interacts with each other to flesh out
the whole-person experience of suffering. A good pain nurse or doctor, when
presented with a complaint of pain, works backward to see how the pieces of the pie
– physical pain, existential anxiety, financial problems, marital disquiet – fit back into
the whole in order to give a complete picture of the individual and their pain.”
Suffering as unique, personal/individual and subjective
Before outlining some of the elements frequently present in the experience of suffering, it is
important to emphasise the personal, individual and subjective nature of suffering,
highlighted by a number of authors21, 57, 72, 82-84
Body64 highlights, for example, that suffering is “the product of the symptoms themselves and
their interpretation and significance by their bearers”. Millspaugh emphasises that it is one’s
interpretation of an experience and/or a loss that gives rise to suffering.44 The personal,
individual and subjective nature of suffering can also be seen in the variety of case study
reports included in this literature review.
The authors of this review propose on these grounds that the elements comprising the
definition of suffering to be presented in the next section (section 4.4) of this review are
inflected and experienced differently for each individual, and that the unique, personal and
subjective nature of suffering should be included as part of any conceptualisation.
Suffering and meaning – the loss of meaning and/or the meaning of loss
Loss of meaning is frequently cited as a component of suffering.12, 21, 77, 85, 86 Qualitative studies
highlight its importance, 23, 73, 87-89 as do case studies65 and a recent review.56
Meaning appears integral/pivotal to the concept of suffering, and rather than separating this
as a separate category, some argue that loss of meaning is “contained in the basis of all
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
15
psycho-existential suffering”.90 This argument finds support in a factor analysis which found
expressions of loss of meaning loaded equally on three dimensions of psycho-existential
suffering: 'loss of autonomy', 'lowered self-esteem', and 'hopelessness'.91 A literature review
and concept analysis of suffering similarly found intensely negative meanings associated with
the loss of autonomy, loss of integrity, and/or loss of control82, suggesting that suffering might
not only be seen as “loss of meaning”, but also as the “meaning of loss”.
Meaning is related to identity, and challenges to meaning can thus be interpreted as threats
to personal integrity/loss of self.51, 90 Controllability and confidence have been identified as
important dimensions of meaning.44, 67 Loss of the future has also been related to loss of
meaning.58, 92 Loss of one’s sense of meaning and purpose can contribute to the loss of will to
live.24, 35, 77, 78, 93
Suffering as hopelessness
Hopelessness is similarly seen as a key element of suffering,21, 56, 86 particularly at the end of life,
and particularly when expressed in terms of concepts such as demoralisation.38, 42
Case studies highlight its importance, 42, 65, 94 as do qualitative studies of patients’
experiences,47, 95 and studies exploring the perceptions of healthcare staff about patients’
existential distress.96 Chochinov found that hopelessness, and not actual degree of physical
dependency, was predictive for burden to others, another source of distress.97
One qualitative study found women oscillated between hope and despair.54 Other writers
identify a similar struggle between the opposites of hope and despair, and suggest that
experiencing “utter hopelessness as a unipolar emotion” is a reflection of “unbearable
suffering”, which becomes bearable when experienced as a bipolar oscillation between
hope and despair.73, 88
Suffering as isolation
The alienating/isolating nature of suffering is emphasised by a number of writers, 21, 56, 85, 86, 98, 99
qualitative studies23, 27, 47, 54, 55, 58, 87, 100-103 and case reports.94, 104 This sense of isolation could be
accentuated by perceptions that “no-one understands”,72 and a lack of support from family
and/or professionals.54 Isolation could also encompass a sense of a lost relationship with
God.94, 104
Suffering as loss
A number of writers highlight the way in which the experience of suffering can also be
viewed as the experience of loss(es) both present and anticipated.21, 47, 56, 81, 85, 98, 100, 105, 106
Such losses include loss of meaning as described above.
The loss of self and/or identity is also highlighted as an element of suffering.44, 51, 72, 92, 105, 107 This
was sometimes related to physical changes such as the loss of a breast or other body
part, 23, 47, 54 which could serve as an ever-present reminder of other losses. Sometimes this
sense of the loss of self manifested as a discovery of a “false self”.44, 108 Sometimes it was
rather the combination of losses that broke down identity as one’s sense of wholeness.54
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
16
Other writers highlight the way in which suffering reflects loss of control,21, 47, 55, 90, 102, 109 or what
some writers acknowledge as the “illusion of control”.44 Accompanying this is a loss of a sense
of certainty/security.54
Losses associated with a sense of suffering in the context of cancer also included the
frequently co-occurring losses of self-esteem and autonomy/independence, and the
associated sense of being a burden on others.55, 88, 91, 92, 102, 109, 110 “The loss may be evident
only in the mind of the sufferer, but it nonetheless leaves a person diminished and with a
sense of brokenness”.21
Suffering as threat
Some definitions of suffering see its essence as being partly that of a perceived threat to
meaning and personal integrity,51, 52, 57, 66, 82, 83, 111 triggered by awareness of the threat of
death. 20, 21, 56, 88, 99, 112 A diagnosis of cancer can be perceived as a death sentence.24, 113
Chapman and Gavrin suggested that it is the response to threat that is a key component of
any definition of suffering, especially in the face of exhausted resources.66 Threat to one’s
aspirations for the future was also found to be a source of suffering.114 Kierkegaard made a
distinction between fear and anxiety (dread), the former being fear of something, the latter
being fear of nothing. By changing anxiety to fear, the patient is better able to cope,
knowledge diffusing anxiety.115
Suffering as a breakdown in coping
Other definitions of suffering emphasise its nature as being that of an inability to cope, and/or
a breakdown in coping,66 because of depletion of coping resources,51, 66, 102 for example, in
the case study of a patient who had experienced multiple diagnoses.94 Moore et al suggest
that hopelessness and suffering can be related to an inability to cope triggered by the many
losses head and neck cancer patients experienced in life prior to and subsequent to their
diagnosis.47 The concept of demoralisation is one expression of a breakdown in coping
associated with subjective incompetence.38, 40, 41
Suffering as negative affect, and enduring
An additional element of suffering emphasised in some of the definitions reviewed was its
negative affective quality,66, 84 which could encompass a range of intense emotions
including sadness, anguish, fear, abandonment, and despair.21, 107 Suffering was associated
with the concept of enduring in several papers.116, 117 In one, Handzo pointed out that the
word “suffer” can literally mean “to endure more”.117 In another, Duggleby defined enduring
as a process which encompassed the maintenance hope and adjusting.116
4.4
A definition/conceptualisation of suffering
The authors of this review propose, on the basis of the literature reviewed above, the
following conceptualisation of suffering in the context of cancer:
Suffering is a multi-dimensional phenomenon, encompassing physical, spiritual, psychological
and existential aspects. It is a subjective experience which is unique to each individual. It may
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
17
be a response to a perceived threat, and/or a breakdown of coping. It involves common
elements such as loss of meaning, loss of hope, loss of relationships (i.e. isolation), and other
associated losses, although these may be inflected and interpreted differently by each
individual.
4.5
Some aphorisms/comments
The authors of this review further propose, on the basis of the literature reviewed above, the
following aphorisms and/or comments about the conceptualisation, assessment and
treatment of suffering in the context of cancer. (Aphorisms are brief statements of a principle
or truism.)
4.5.1
Suffering is difficult to articulate and identify clinically
A number of authors have highlighted the difficulty of articulating the experience of
suffering;48, 53, 56, 58, 60, 69, 71-73, 88, 89, 96, 98, 101-103, 107, 118, 119 and even more so, the difficulty of
operationalising the concept in terms of a structured interview or symptom checklist.20, 38, 82, 86
The difficulty of identifying patient suffering, even by experienced staff, was noted.57
A range of phenomena have been cited in the literature as evidence of the difficulty
patients experienced with attempts to articulate their suffering. These include
contradictions;60, 115, 119 ambivalence;89 hesitations, silences, evasions and fumbling for
words;72, 101 frantic attempts to change attitudes and behaviours;71 repeated narrations of
care-related violations;101 and questions about trivial aspects of the illness because major
issues remain so much beyond desired level of control.72
Patients in one study reported feeling at a loss “for resources, words, time and space to
express and discuss complex social, psychological or existential problems with the
professionals”.102 Frank98 perhaps expresses the inarticulable nature of suffering most
evocatively:
“Suffering is the unspeakable, as opposed to what can be spoken; it is what remains
concealed, impossible to reveal; it remains in darkness, eluding illumination ...
Suffering resists definition because it is the reality of what is not. Anyone who suffers
knows the reality of suffering, but this reality is what you cannot ‘come to grips with’.”
It should be noted, however, that one study reported the opposite, suggesting that “an
overwhelming majority” of patients reported no difficulty expressing their feelings/fears.2
Barriers to the articulation and recognition of suffering
There are a number of reasons why patients find it difficult to articulate suffering and
clinicians find it difficult to recognise, and these are outlined below.
Anxiety and avoidance
Patients sometimes report sensing barriers that discourage them from exploring their
experiences of suffering with healthcare professionals. Patients sometimes perceived nurses
to be uncomfortable and frightened, and to distance themselves, when existential and/or
spiritual matters were raised.60, 115 Healthcare professionals were seen as lacking courage and
understanding, and patients were reluctant to approach them with such issues.102, 120 Patients
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
18
sometimes perceived both staff and significant others as discouraging conversations about
these issues, and sought to protect people from their negative emotions, thus avoiding such
discussions. 23, 121 Such avoidance was seen to contribute to increased suffering in patients.19
Healthcare professionals themselves acknowledged in a number of studies that they were
uncomfortable and afraid of doing or saying the wrong thing; worried that listening to
patients’ concerns would trigger their own existential anxiety; and/or kept a distance
because being too involved was experienced as draining.94, 96, 120
Patients themselves may also be frightened of saying what they feel,98 may fear breaking
down or losing control if they raise their concerns,102 may oscillate between awareness and
unawareness of these feelings,115 or employ defences such as denial, repression or false
joviality,122 and/or may lack energy to follow and contribute to conversations.102 Some writers
highlight that it is easier (i.e. more appropriate, less frightening and distressing) for patients
and practitioners to talk about more specific and/or objective concerns.71, 72, 101, 118 A patient
in one study acknowledged the difficulty of articulating her feelings of emptiness and
searching, and accepted anti-depressants from her physician, although stating she was not
really depressed.107
Training and work environment
Patients also perceived healthcare professionals as lacking the knowledge and time
necessary to assist them with such issues.102, 120 Healthcare professionals similarly
acknowledged that they lacked the knowledge and time to address such issues.94, 96, 120
Some medical professionals perceived the acknowledgement of progressive disease as
‘failure’ and therapeutic abandonment.123 This implicit denial of death in a setting of
budgetary cutbacks and understaffing further promotes a lack of willingness to address
suffering.19 Other factors associated with clinical blind spots around the concept of suffering
include a belief that offering good care means that suffering can be avoided,21 and
‘glossing over’ suffering by emphasising its role as part of a positive ‘transformation’
process.71 It has been suggested that training and workplace discussions do not necessarily
focus sufficiently on ways of dealing with non-physical suffering.65
Need for a ‘vocabulary’
The need to give patients a language other than the physical in which to express their
concerns and emotions is emphasised by a number of writers.51, 69, 111 Patients in one study
reported that they felt they did not have the words to express their social, psychological or
existential problems,102 while some nurses in one Swedish study reported that “they had never
reflected on this issue and therefore had no words to explain spiritual/existential needs”.120
Tamura et al, citing a Japanese language only publication by Morita et al, acknowledge
that the interests, understanding and language modelled by staff can influence patient
recognition and communication of pain.124 In one case study, a chaplain specifically
describes his/her role as having a language for exploration of issues of meaning.94 The lack of
a clear definition of existential and spiritual suffering was seen in one review as a barrier to the
development of effective interventions.50
The biomedical model
The biomedical model contributes to the difficulty of recognising suffering holistically, with its
focus on more specific and/or objective concerns.71, 72, 78, 101, 118 Related to this is the focus on
the physical domain, rather than the multi-dimensional nature of suffering, and difficulty
disentangling the different dimensions of distress.58 Indeed, patients who are very sick at the
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
19
end of life, and/or experiencing cognitive impairment, may use a physical language to
express all aspects of suffering.69, 125 Some would argue further that the different dimensions
cannot and/or should not be considered individually, but rather in terms of the ‘whole
person’ of the individual who is suffering.18,83 Frank suggests patients may fear that what they
are experiencing cannot be put into words, without being reduced to specific complaints
and concerns, missing the essence of the experience of suffering.72, 98 Furthermore, the
individualised and subjective nature of suffering82, 83 contributes to these difficulties in clinically
recognising suffering. Finally, the biomedical model focuses on concerns, symptoms and
problems, when a focus on what is going well and positive outcomes can facilitate spiritual
wellbeing.85
Facilitating the recognition of suffering
The evidence cited above to illustrate the difficulty patients have in articulating their suffering
also serves as a review of cues that might be indicative of suffering. Clinicians are advised to
listen to patients’ stories and observe their behaviour instead of questioning directly with
checklists;86 and are described as inferring the presence of suffering from observable cues.82
There have also been a number of creative suggestions of ways to measure suffering,
acknowledging these difficulties to its clinical identification.126, 127 Leung and Esplen suggest
that clinicians need to recognise their own mortality before they can effectively support a
‘good’ death for suffering patients.99
4.5.2 Suffering unacknowledged can be ‘doubled’ suffering
Qualitative research with patients suggests that suffering can be ‘doubled’ when it is not
acknowledged, as outlined by Arman et al:23
“The doubled suffering originates from an experience in which the suffering increases
(doubles) when it remains concealed or unspoken. Doubled suffering is to suffer and
be denied one’s own experiences of suffering.”
The papers reviewed included many examples of patients feeling alienated, invalidated,
rejected and abandoned when their suffering was denied, glossed over or not
acknowledged.19, 72, 87, 88, 96, 101, 102, 120, 121 Ferrell noted, for example, that a patient may feel
voiceless, not only when they do not have the vocabulary, but also when their ‘screams’ are
unheard by staff.21
This could leave patients doubting the validity of their feelings, perceptions, and
experiences,23, 72 and could result in misinterpretations, overlooked problems, unnecessary
treatment, and denial of opportunities for personal growth for both patients and physicians.69,
70 Such ‘doubled suffering’ is one example of suffering being aggravated by health care,19, 23,
87, 101 and is sometimes said to arise from the competing paradigms (i.e. biomedical and
emphasis on personal meaning) brought to the health care encounter.23
It has further been argued that failing to pay attention to the broader experience of illness
and what it means to the individual patient (i.e. failing to acknowledge the ‘whole person’)
can result in attempts to treat cancer that actually increase suffering.38
Finally, it has been suggested that research and measurement can be one of the ways in
which the healthcare system can aggravate suffering if it fails to acknowledge
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
20
simultaneously the unique/individual/personal/subjective experience of suffering and simply
imposes categories upon people’s subjective and individual perceptions.98
4.5.3 Suffering can be – but is not necessarily – transformative
Suffering opens a way for existential questions to be raised which required patients to
consider their lives from a new perspective. This was often seen to initiate growth and
personal development.71 Many of these papers emphasised the many ways in which
suffering and encountering darkness can be transformative, 25, 27, 54, 85, 88, 103, 128-131 drawing on
the concept of a “tree of life”,54 resolution of disequilibrium,27 and seasonal metaphors.95
However, a small number of papers raised some important caveats that should be
acknowledged in conceptualising suffering. Firstly, it has been argued that analyses of
‘suffering’ that focus on its transformative aspects risk bypassing, glossing over and/or
diminishing the experience of ‘suffering’ by privileging its potential positive consequences.71
It is important to understand the depths of suffering and despair reported by participants in
the studies reviewed here, and acknowledge them,129 before exploring ways in which such
suffering may be transformative. Otherwise, the risk is that suffering is merely romanticised,
rather than understood.89, 123
4.5.4 Meaning can be – but is not always – found in suffering, and meaning
can contribute to its alleviation
The experience of suffering and impending death was found to precipitate a search for
meaning in many patients.130 Finding meaning has been highlighted by many authors as a
way of enduring and/or alleviating suffering.12, 13, 24, 43, 61, 73, 80, 81, 85, 86, 88, 89, 94, 105, 131-133 This claim
more commonly relates to the general sense that one’s life has meaning and value, but can
also relate to the fostering of specific aspects of meaning (e.g. understanding and control of
one’s symptoms and/or emotions).85, 103, 120
Some authors suggest that it is the process of listening to and communing with patients that
helps them to find meaning and alleviate suffering.73, 78, 88, 107 Others highlight religion 24, 61
and/or spirituality 81, 132 as resources that help create meaning.
Suffering itself may be seen as meaningful,84, 131 but this is not necessarily the case for all
writers. Some express the belief that suffering may be arbitrary and meaningless,61 that bad
things do not necessarily happen for any explainable reason,85 that
sadness/hopelessness/futility and despair are inevitable, valuable and authentic123 and that
sometimes meaning is never found in suffering.134 These writers instead suggest that meaning
in life can be found even in the presence of arbitrary and meaningless suffering.
It has been noted in the broader literature on meaning and adjustment, however, that
adjustment is not necessarily associated with the search for meaning, and that clinicians
should facilitate but not impose the search for meaning.135 The need to progress at the
patient’s own pace has also been emphasised.89
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
21
4.5.5 Culture and context influence the experience and expression of
suffering
Another important point to emerge from this review of the literature is an understanding of
the ways in which culture and context influence the experience and expression of suffering.
Some writers emphasise the way in which the socio-economic context influences suffering in
the context of cancer.47, 61, 62 Barton-Burke outlines the way in which the context of
colonialism, colonisation, oppression, genocide and alienation can shape perceptions of
cancer for African-Americans and Latin Americans as “another oppressive condition ... a
deepening of conditions that have robbed them of the opportunity to live full, coherent
lives”.61 One of the participants in a study of head and neck cancer spoke in terms consistent
with Barton-Burke’s account of how his biggest fear was that his life would never be the same
again after cancer as a black man, emphasising that “As a black person, you have to be
much better, more industrious and harder working. You just don’t get a break”.47 Suffering
due to cancer was also seen as having a socio-economic dimension. 61, 62
There is also variation in the way in which different religions view suffering,61, 136 the religious
beliefs and symbols used to palliate suffering,81 and religious approaches to finding meaning
in death.94, 116 Cooper noted the role of healthcare chaplains in aiding suffering patients who
are out of touch with the practices of their faith tradition.104 Wein suggests that modern
Western culture, because of a receding religious heritage, is “creating a new culture to deal
with suffering and loss”.81 Nonetheless, religion remained an important source of strength and
hope for some patients.113, 130, 136
Furthermore, there is variation across cultures. Some writers suggest tempering ‘American’
concepts such as autonomy, equality and egalitarianism when dealing with patients from
other cultural contexts.94 Aspects of Chinese culture influencing the experience and
expression of pain and suffering are reviewed in a number of included studies.24, 131, 137, 138 For
example, one study outlined ways in which Chinese cultural values could make coping with
suffering easier, by viewing it as a life challenge, or harder, being associated with a sense of
guilt for those unable to fulfil cultural obligations.24 Tamura et al124 report on the difficulty of
translating the concept of spiritual pain – which originated in a Christian context – into the
Japanese context, in which many people report having no specific religion and religious
distress is rarely verbalised.91 Other Japanese researchers suggest that their results should not
be generalised to other contexts for similar reasons.30 Interestingly, one Japanese study
nevertheless reports that the existential concerns uncovered in their sample did appear to
relate to universal aspects of human suffering beyond cultural differences,109 a comment
echoed by a summary of the literature on existential issues.139
The very use of the terms ‘existential’ or ‘spiritual’ to describe the issues and concerns
experienced by patients also varies with context, and the appropriateness of each term in
different contexts has been debated in the literature.140-143 The increasing use of ‘spiritual’ in
reference to a universal phenomenon, for example, is a relatively recent trend.92 Nurses in
one Swedish study saw “existential issues” as something that mainly concerned “foreign
patients”.120
The nature of suffering may vary with the type of cancer experienced, and this has been
explored to some extent in the context of head and neck cancer 47 and brain cancer.115
Similarly, experiences of suffering may vary according to one’s point in the cancer
trajectory.58, 89, 121, 144 Age17 and family environment have also been suggested to be
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
22
associated with the experience of suffering, with the presence of a caring family associated
with increased suffering in one study,138 but reduced suffering in another.130
Finally, previous and concurrent personal experiences influence the experience and
expression of suffering, contributing to its subjective nature.57, 72, 82, 83 Experiences of early
abandonment,44 prior experiences of suffering,23, 101 and concurrent caring responsibilities,47
are all examples of individual factors found to influence suffering in the studies included in this
review.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
23
5
Results of the assessment of suffering
5.1
Included studies
Systematic searches of the literature resulted in the identification of 90 articles presenting
information about 58 measures, which appeared to assess either suffering or one of its
synonyms or symptoms as listed in Appendix A. These included:
a) Articles identified by initial searches as presenting information about the psychometric
properties of a relevant measure
b) Articles identified by reference checks on articles picked up by initial searches
because they used a relevant measure, but excluded from the review because they
did not themselves report on the psychometric properties of the measure
c) Articles identified by reference checks on review articles picked up by initial searches
because they reviewed relevant measures, but excluded from the review process
d) Articles identified by reference checks on included articles and/or supplementary
searches for articles reporting on psychometric properties of included measures.
The authors of this review sought as far as possible to include initial and key publications
pertaining to the psychometric properties of an instrument, and particularly any information
on the psychometric properties of each instrument in the cancer context. Papers
summarising psychometric properties for a measure across multiple studies were deemed
eligible for inclusion in this part of the review.
An additional 16 measures which initially appeared relevant were excluded, either because
inadequate information about their psychometric properties was presented, or because they
did not appear, upon closer inspection, to assess a relevant construct. These excluded
measures are mentioned under relevant subheadings in section 5.3.
In the following section, a definition is presented for each of the relevant psychometric
properties for which data about each measure is summarised below (in section 5.3).
5.2
Criteria for evaluating outcome measures
The following discussion is based on Fitzpatrick et al’s in-depth discussion of criteria that
should be evaluated when evaluating outcome measures for any specific clinical trial 145.
They propose eight questions (see Table 3), which they suggest need be addressed in relation
to the use of any specific measure.
Please note that in the summary tables in the following sections, levels of evidence are not
assigned to individual studies. Rather, data pertaining to the psychometric properties of
individual measures has been extracted, as this was deemed the best way of presenting
evidence about the appropriateness of each outcome measure.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
24
Table 3
Questions that need to be addressed in relation to a patient-based outcome
measure being considered for a clinical trial
Criteria
Question
Appropriateness
Is the content of the instrument appropriate to the questions
which the clinical trial is intended to address?
Reliability
Does the instrument produce results that are reproducible and
internally consistent?
Validity
Does the instrument measure what it claims to measure?
Responsiveness
Does the instrument detect changes over time that matter to
patients?
Precision
How precise are the scores of the instrument?
Interpretability
How interpretable are the scores of the instrument?
Acceptability
Is the instrument acceptable to patients?
Feasibility
Is the instrument easy to administer and process?
Note: Questions reproduced from Fitzpatrick et al, 1998.145
As suggested by Fitzpatrick et al,145 some of these questions are relatively simple and
available data are easy to interpret (e.g. response rates may be one way of assessing an
instrument’s acceptability). Others are more ambiguous, and the following section
elaborates upon the criteria of reliability, validity and responsiveness to change.
5.2.1
Reliability
Measures of an instrument’s reliability are concerned with assessing whether it produces
results that are internally consistent and reproducible, i.e. free from measurement error.
Internal consistency
Internal consistency reliability measures the extent to which multiple questionnaire items
measuring a dimension or construct are homogeneous. For a measure to be internally
consistent, individual items must highly correlate with each other and with the total (summed
score). Split-half reliability is one way of measuring the internal consistency of a scale, and
involves randomly dividing the items comprising the scale in half and assessing the extent to
which scores between the two halves correlate. Cronbach’s alpha () essentially reports the
average of all possible split-half tests.146 Internal consistency reliability can also be assessed by
examining the correlation of individual items to the scale total, omitting the individual item
from the total. Cronbach’s alpha(s) of at least .70 (and no more than .90) per
dimension/scale have been recommended in the literature.147, 148
Test-retest reliability
Test-retest reliability is a way of assessing the reproducibility of results obtained by the use of a
particular scale, i.e. evaluating whether the test yields results which are the same when
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
25
re-applied, in the absence of respondent changes in the construct being measured. It is
essentially the degree of agreement between scores assessed at two time points, commonly
reported as a Pearson product moment correlation co-efficient, although an intra-class
correlation co-efficient is advocated as more appropriate. Minimal standards for test-retest
reliability are commonly cited as .7, and the usual amount of time between assessments is
commonly 2–14 days.148
Alternate forms reliability
Alternate forms reliability assesses the relationship between a measure administered in
different formats (i.e. via tablet computer versus pen and paper). If scores achieved by the
same individuals completing different versions of the test are highly correlated, then the two
versions can be considered more or less equivalent.
Inter-rater reliability
Inter-rater reliability is the aspect of an instrument’s reliability that is concerned with
agreement between interviewers or observers. Kappa (κ) is one of the most frequently used
measurements of inter-rater reliability.149
5.2.2
Validity
Validity refers to the extent to which an instrument measures what it claims to measure. The
forms of validity most relevant for the purposes of this review are content and construct
validity, which are each briefly reviewed below. It should be noted that an instrument is
always validated in a particular population, or for a particular purpose, and context must
always be considered when assessing validity.
Content validity
The content or face validity of a measure relates to its content, and the extent to which the
intended subject matter is clearly and adequately covered. The item development process is
an important source of information for assessing an instrument’s content validity, as it reflects
the extent to which the perceptions of respondents themselves (as opposed to experts
alone) influence the development and choice of items making up the instrument.
Construct validity
Construct validity involves assessing the relationships of a given measure with a range of
other variables, to build up a picture of the way in which the underlying construct measured
by the instrument relates to these other variables. ‘Convergent and divergent validity’ refers
to attempts to assess the construct validity of an instrument by examining its correlations with
a suite of other constructs, with stronger correlations expected between constructs that are
postulated to be most closely related, and weaker correlations expected between
constructs that are postulated to be more distally related. Factor analysis exploring the
underlying relationships between the subscales of an instrument may also be considered an
aspect of its construct validity. As there is no agreed standard for establishing construct
validity, in assessing this criteria the authors of this review looked for evidence that patterns of
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
26
correlations with related variables had been explored and that at least a majority of
hypothesised relationships had been confirmed.
5.2.3
Responsiveness to change
Responsiveness to change assesses the extent to which an instrument is able to identify
changes that are important to patients over time (i.e. therapeutic effects). Responsiveness to
change can be evaluated in a number of ways outlined by Fitzpatrick et al,145 and/or by
testing pre-specified hypotheses about the relationship between change in the instrument
and corresponding changes in reference measurements.150 In assessing these criteria, the
authors of this review looked for evidence that statistically significant differences had been
found in accordance with hypotheses (e.g. when respondents were assessed at different
time points relative to the receipt of treatment).
5.3
5.3.1
Measures
Suffering
A total of six measures assessing suffering were identified. Inadequate psychometric
information was presented for the Spanish-language “Instrument to identify and alleviate
suffering”,151 the “Comfort Assessment” 152, the question “How long did yesterday seem to
you?”,126 and the clinician-administered single-item screening instrument for suffering.53
Further information on these measures is therefore not provided, although some of these do
appear promising avenues for further exploration.
This left a pool of two eligible measures for which psychometric properties are presented in
Table 4 below, the Mini-Suffering State Examination (MSSE),153 and the Pictorial
Representation of Illness and Self Measure (PRISM).154 A short summary of the strengths and
limitations of each of these measures follows.
A single “Are you at peace?” item155 was also identified as a measure of spiritual wellbeing,
and its validity assessed against other measures of spiritual wellbeing. It is reviewed in the
section on spiritual wellbeing. However, it should be noted that the authors referred to this
measure as not only a measure of spiritual wellbeing but also a way of identifying suffering,
and this measure should therefore also be considered in the context of measures of suffering.
Strengths and limitations
Mini-Suffering State Examination (MMSE)
The Mini-Suffering State Examination is a brief clinician-administered measure of suffering,
which may be particularly useful with end-stage cancer patients who may experience
difficulties communicating their needs and/or expressing their suffering.156 It was originally
developed in the context of dementia,153 but preliminary work has been done to explore its
psychometric properties in the context of cancer.156
Content validity is dependent on the clinical judgment of the scale’s designers, and there is
no indication of further work seeking confirmation of appropriateness and
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
27
comprehensiveness of items. The 10 items included on this scale do not necessarily
encompass the full range of, nor even the most pressing dimensions of, suffering in cancer
patients at the end of life, suggesting that this tool may be a useful starting point for
measuring some types of suffering, but further work exploring its content validity may be
required.
Reliability overall appears adequate, although some of the items are fairly subjective
(e.g. “suffering according to medical opinion” and “not calm”), and this was reflected by
lower levels of observer agreement (κ = .62 and .64) on ratings for these two items.153
Construct validity was assessed in the context of dementia through correlations with the
comfort assessment in dying with dementia, however information on validity in the context of
cancer is lacking at present. In the absence of a ‘gold standard’ measure of suffering,
considerable work is arguably required to establish satisfactorily the validity of any such
measure of suffering.127 The scale appears responsive to change in the context of cancer,
making it a potentially useful tool for monitoring patients and exploring the impact of
interventions over time.
Clinician administration is both a strength and a limitation of this measure. It allows consistent
assessment of all patients at the end of life, taking into account communication difficulties
and avoiding burdening patients. However, clinician administration may also result in biased
assessments, especially if clinicians responsible for the care of patients over time overestimate
the impact of such treatment.
Pictorial Representation of Illness and Self Measure (PRISM, PRISM-R1 and
PRISM-R2)
The PRISM was originally intended as a measure of adjustment to illness, but qualitative
analyses of content validity suggested its applicability as a measure of suffering.154 The
advantages of this measure include its brevity, simplicity, and ease of use.154 In addition, by
not specifying items and domains it allows for a more subjective assessment of suffering due
to illness regardless of how patients might individually define this.157, 158 Content validity has
been explored in a number of qualitative studies,127, 157 and there is evidence of reliability and
validity,127 although the lack of a gold standard measure of suffering means considerable
work is necessary to satisfactorily validate this measure.127
There are two revised versions of this measure, the PRISM-R1 and PRISM-R2,157 which provide
additional information about the perceived severity of illness, and incorporate a slightly
revised response format.
The PRISM-R2 has been used in the context of cancer survivorship, and evidence on the
validity of the measure in this context has been presented.158 The PRISM and its variants have
been administered both face-to-face 127, 154, 157 and via mail, 157, 158 although it has been
suggested that people with lower levels of education experienced some problems
completing this more abstract measure, and face-to-face administration may be
preferable.158 The scale’s developers also raise the possibility of administering this measure via
computer.154
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
28
Table 4
Psychometric properties of measures of suffering
Tool, Author, Year,
(Ref #)
Mini-Suffering
State Examination
(MSSE)
Description
Administration:
Clinician rated
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer
validation
sample(s)
Item development
103 bedridden end
stage dementia
patients
152 advanced
cancer patients
with <1 month
life expectancy
Developed by
authors based on
clinical
experience
Items: 10
Aminoff et al,
2004 153
Israel
Response scale:
Yes / no (1 / 0)
Scores:
Range 0-10
0-3 reflects low level
of suffering, 4-6
intermediate,
7-10 high
Domains
None
specified
Reliability
Physician 1,
Internal
consistency
α = 0.735 153
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 153
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 156
? 156
153
Israel
156
Physician 2,
Internal
consistency
α = 0.718 153
Interobserver
reliability
κ = 0.791153
Internal
consistency
α = 0.738 156
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
29
Tool, Author, Year,
(Ref #)
Pictorial
Representation of
Illness and Self
Measure (PRISM)
Büchi et al, 2002
Description
Administration:
Clinician
administered
and/or self-report
(by post with
stickers)
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer
validation
sample(s)
Item development
Over 700 patients
with a variety of
chronic physical
illnesses
1299 long-term
survivors of
prostate cancer,
endometrial
cancer, nonHodgkin’s and
Hodgkin’s
lymphoma
Originally
intended as a
measure of
adjustment to
illness, but
qualitative
comments
suggested that
this tool was
instead measuring
perceived burden
of suffering due to
illness (perceived
controllability and
symptom
intrusiveness)
UK, Switzerland 127
127
Items: 1
Response scale:
Placement of
‘illness’ disc on
board. Perceived
burden of suffering
due to illness is
distance in cm from
centre of ‘illness’
disc to centre of
‘self’ disc
The Netherlands
158
Domains
None
specified
Reliability
Test-retest
reliability
(2 hours)
r = 0.95 127
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 127, 154, 157, 158
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 127, 157
Inter-rater
reliability
(6 hours)
r = 0.79 127
Size of ‘illness’ disc
(PRISM-R2)
represents
perceived
severity of illness,
range 1-3 (for three
sizes of disc)
* Note: + Bulk of the available evidence supportive of construct validity/responsiveness to change of the instrument; – Bulk of the available evidence does not support this property;
? This property has not been assessed or shows contradictory results.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
30
5.3.2
Hopelessness and demoralisation
A total of eight measures assessing hopelessness/demoralisation were identified. The
helpless-hopelessness subscale of the Mental Adjustment to Cancer (MAC) 159 – and its
subsequent revision, the Mini-MAC 160 – was excluded, as this was considered a measure
of coping rather than a measure of the outcome of hopelessness itself. This left a pool of
seven eligible measures for which psychometric properties are presented in Table 5
below: the Beck Hopelessness Scale (BHS),161 the Despair subscale of the Cancer Care
Monitor (CCM),162 Jacobsen et al’s Demoralisation Scale,163 Kissane et al’s Demoralisation
Scale,164 the Hopelessness Assessment in Illness (HAI) Questionnaire,165 the clinicianadministered single-item screening instrument for hopelessness,166 and the Subjective
Incompetence Scale (SIS).167 A short summary of the strengths and limitations of each of
these measures follows.
Strengths and limitations
Beck Hopelessness Scale (BHS)
While the Beck Hopelessness Scale (BHS) has been used in a growing number of studies in
the cancer context, concerns about its appropriateness have been raised in recent
years.165, 168 In terms of content validity, it was developed in the context of psychiatric
illness, and certain items may seem confusing or inappropriate in the context of
advanced cancer.168 Abbey et al 168 present three alternate versions of this measure,
which omit the most problematic of the original items, and suggests that these versions of
the scale have satisfactory reliability and validity. Results of an intervention study finding
an effect on hopelessness as measured by the BHS in women with recurrent breast
cancer 169 also offer some evidence in support of the measure’s responsiveness to
change.
Nissim et al 170 warn, however, that their identification of an underlying two factor model
in a larger sample of 406 ambulatory cancer patients signals the need for caution in
adopting shorter versions of this measure, in particular, without further consideration of
their psychometric properties in the context of advanced cancer.
Cancer Care Monitor (CCM): Despair subscale
The Cancer Care Monitor (CCM) is a symptom-based scale developed for computer
administration, which includes a subscale assessing despair.162 Items were developed by
the scale’s authors but reviewed by healthcare professionals and 20 cancer patients,
which offers some support for the measure’s content validity. This appears to be the only
measure of hopelessness with psychometric properties assessed and reported for
computer administration, and when evaluating the scale as a whole patients expressed
a preference in favour of the computer-administered version, indicating good
acceptability for this mode of administration.162 The evidence presented is supportive of
the scale’s reliability and validity, and results of a one group pre/post intervention study
also provide some evidence of the scale’s responsiveness to change.171
Demoralisation Scale – Jacobsen et al
This seven-item demoralisation scale was developed through testing a number of items
identified through knowledge of the literature and existing scales.163 Jacobsen et al
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
31
review the different emphases of this scale, as compared to the scale developed by
Kissane et al,164 and suggest that these questions explicitly relate feelings of
anger/bitterness, hopelessness, and lack of meaning/emptiness to health status
(e.g. “I feel angry or bitter about my cancer diagnosis”). This may be a strength or a
limitation of the scale, depending on how this matches with the conceptualisation of
demoralisation associated with any proposed use of the tool. The data presented is
supportive of the scale’s reliability and validity, although further confirmatory work in a
sample in which item selection was not performed would be advisable. There does not
appear to be any evidence available assessing the scale’s responsiveness to change.
Demoralisation Scale – Kissane et al
Kissane et al 164 developed the demoralisation scale based on knowledge of the
literature, but involved 15 cancer patients in the review process, asking them to
comment particularly on the comprehensibility and acceptability of items. The scale is
more comprehensive than that of Jacobsen et al,163 comprising 24 items, and five
domains. This initial validation took place in a clinical setting, with patients referred to
tertiary psycho-oncology and palliative care services. In this population, evidence
supportive of the measure’s reliability and validity was presented, and exploration of the
measure’s psychometric properties (including its factor structure) in other settings is
ongoing.172 Kissane et al 164 report acceptable divergent validity, suggesting satisfactory
distinction between demoralisation and depression in their sample. However,
Mullane et al 172 questioned this analysis, and found convergence between the two
constructs in their own analysis. Evidence of the measure’s responsiveness to change
does not yet appear to have been established, although it appears in the protocol of a
current Australian study from which such data may be forthcoming.173
Hopelessness Assessment in Illness (HAI) Questionnaire
One of the strengths of the Hopelessness Assessment in Illness (HAI) Questionnaire is its
content validity, as the items comprising this measure were derived from interviews with
palliative care experts, and statements made in interviews with advanced cancer
patients purposely conducted to inform the development of this measure.165 The authors
of this scale intended this as a measure of hopelessness relatively distinct from prognostic
awareness (PA), so as to enable assessment of hopelessness without results being
confounded with prognosis itself, and reported that as expected, the association
between the BHS and PA was stronger than the association between the HAI and PA.165
Preliminary evidence (from two independent samples) is supportive of its reliability and
validity, and its brevity (eight items) is an important strength when considering use in a
palliative care population. No evidence yet appears to have been provided about the
responsiveness to change of this measure.
Single-item screening instrument for hopelessness
The single-item screening instrument for hopelessness is a clinician-administered measure
of hopelessness from the Screening Instrument for Symptoms and Concerns (SISC), a
13-item structured interview for assessing physical symptoms and psychosocial concerns
of patients in palliative care. 166 Items were developed and piloted in the palliative care
context. The information presented appears supportive of the item’s reliability and
validity, although as yet there does not appear to be evidence of its responsiveness to
change. Advantages of this measure include its relative brevity and minimal patient
burden, the consistent format in which to assess a range of clinically relevant end-of-life
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
32
symptoms and concerns, and its potential as a screening tool. However, the interview
protocol does not address a comprehensive list of symptoms and concerns, and
administration is restricted to those who are mentally competent.
Subjective Incompetence Scale (SIS)
This tool measures the specific concept of subjective incompetence, which is a narrower
concept than demoralisation.167 It should be noted when assessing content validity that
15 patients were involved in commenting on a draft of this measure, although the original
items were developed by the scale’s authors based on their theoretical understanding of
the concept of subjective incompetence and the existing literature. Preliminary evidence
presented here is supportive of its reliability and validity, although confirmatory evidence
from an independent sample is required.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
33
Table 5
Tool, Author,
Year, (Ref #)
Beck
Hopelessness
Scale (BHS)
Psychometric properties of measures of hopelessness/demoralisation
Description
Administration:
Self-report
Items: 20
Beck et al,
1974 161
Response scale:
True / false
(0 / 1)
Initial and
key
validation
sample(s)
(non
cancer)
438
psychiatric
patients
and
outpatients
USA 161
Initial and key
cancer
validation
sample(s)
Item development
200 hospice
inpatients with
a diagnosis of
cancer and a
life expectancy
of less than 6
months
Modification of a
test for attitudes
about the future,
plus a pool of
pessimistic
statements made
by psychiatric
patients adjudged
by clinicians to
appear hopeless
USA 168
Scores:
Range 0-20
Score of 8 or
more reflects
moderate to
severe levels of
hopelessness 174
406 ambulatory
patients with
advanced lung
or
gastrointestinal
cancer
Canada 170
Domains
Three factors
identified in
initial study:
feelings about
the future
(5 items); loss of
motivation
(8 items); future
expectations
(5 items) 161
Two factors
identified in
one cancer
validation
study:
negative
expectations
(10 items; α =
0.86); loss of
motivation (10
items; α = 0.83)
Reliability
Internal
consistency
α = 0.93 161
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 161, 168, 170
Responsiveness to
change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
? 161, 168, 170
+ 169
Internal
consistency
20-item:
α = 0.87 168
3-item:
α = 0.69 168
7-item:
α = 0.85 168
13-item:
α = 0.89 168
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
34
Tool, Author,
Year, (Ref #)
Cancer Care
Monitor (CCM)
– Despair
Subscale
Description
Administration:
Self-report
(paper or tablet)
Items: 7
Fortner et al,
2003 162
Response scale:
10-point Likert
scales (0=not a
problem; 10=as
bad as possible)
Initial and
key
validation
sample(s)
(non
cancer)
Initial and key
cancer
validation
sample(s)
Item development
Three adult
cancer
outpatient
samples
(n = 449)
Developed by
authors, reviewed
by healthcare
professionals and
20 cancer patients
Domains
None specified
Reliability
Internal
consistency
(for all 3
samples
combined)
α = 0.89
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness to
change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
? 162
+ 171
USA
Alternate
forms pen
and paper
and tablet
r = .87
Scores:
Raw scores are
converted to
normalised t
scores with
mean of 50 and
SD of 10
Demoralisation
Scale
Administration:
Self-report
Jacobsen et al,
2006 163
Items: 7
242 advanced
cancer
patients
USA
Developed by
authors based on
knowledge of
literature and
existing scales
None specified
Internal
consistency
α = 0.78
+
?
Response
options and
scoring not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
35
Tool, Author,
Year, (Ref #)
Description
Demoralisation
Scale
Administration:
Self-report
Kissane et al,
2004 164
Items: 24
Initial and
key
validation
sample(s)
(non
cancer)
Initial and key
cancer
validation
sample(s)
Item development
100 patients
with advanced
cancer
Developed by
authors based on
knowledge of
literature,
reviewed by 15
cancer patients
Australia
Response scale:
5-point
(0=never,
1=seldom,
2=sometimes,
3=often, 4=all
the time)
164
100 Irish
inpatients with
advanced
cancer
Ireland 172
Scores:
Range 0-96
Domains
Loss of
meaning
(5 items)
α = 0.87
Reliability
Internal
consistency
α = 0.94
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 164
? 172
Responsiveness to
change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Dysphoria
(5 items)
α = 0.85
Disheartenment
(6 items)
α = 0.89
Helplessness
(4 items)
α = 0.84
Sense of failure
(4 items)
α = 0.71
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
36
Tool, Author,
Year, (Ref #)
Hopelessness
Assessment in
Illness
Questionnaire
(HAI)
Rosenfeld et al,
2011 165
Description
Administration:
Self-report
Items: 8
Response scale:
Anchored
statements
each with three
response options
(0-2)
Scores:
Range 0-16
Initial and
key
validation
sample(s)
(non
cancer)
Initial and key
cancer
validation
sample(s)
Item development
Two advanced
cancer
samples
(n = 583)
Developed in
consultation with
palliative care
experts, drawing
on interviews with
30 advanced
cancer patients;
20-item draft
piloted in first
sample and
refined using
classical test
theory and item
response analysis
before being
validated in
second sample
Domains
Factor analysis
supported a
one factor
model
Reliability
Internal
consistency
α = 0.87
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness to
change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Average
inter-item
correlation
r = 0.48
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
37
Tool, Author,
Year, (Ref #)
Single-item
screening tool
for
hopelessness
(Structured
Interview for
Symptoms and
Concerns, SISC)
Wilson et al,
2004 166
Description
Administration:
Clinicianadministered
Items: 1
Response scale:
7-point scale (0
= none, 1 =
minimal, 2 =
mild, 3 =
moderate, 4 =
strong, 5 =
severe, 6 =
extreme)
1 or 2 indicates
the experience
of the symptom
or concern is
relatively low.
3 corresponds to
an issue that is
generally a
significant
problem. Higher
scores are
associated with
clear presence
of a symptom or
concern at a
clinically
important level
with varying
degrees of
severity.
Initial and
key
validation
sample(s)
(non
cancer)
Initial and key
cancer
validation
sample(s)
Item development
69 palliative
care
(advanced)
cancer
patients
Items selected
from literature
regarding end-oflife concerns and
mental disorders in
primary or
palliative care,
approach
adopted similar to
Schedule for
Affective Disorders
and
Schizophrenia,
and rating
descriptors taken
from Memorial
Pain Assessment
Card. Draft items
circulated to
palliative care
physicians and
nurses and pilot
tested with 10
palliative care
inpatients.
Domains
Single item
Reliability
Inter-rater
reliability
r = .98
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness to
change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
Not specified
Test-retest
(1-3 days)
r = .80
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
38
Tool, Author,
Year, (Ref #)
Subjective
Incompetence
Scale (SIS)
Description
Administration:
Self-report
Items: 12
Cockram et al,
2009 167
Response scale:
4-point (0=none
of the time,
3=most or all of
the time)
Initial and
key
validation
sample(s)
(non
cancer)
Initial and key
cancer
validation
sample(s)
Item development
112 outpatients
with a
diagnosis
of colorectal or
gastrointestinal
cancer
Developed on the
authors based on
concept of
subjective
incompetence
and literature, and
reviewed by 15
patients
Basic SI score
(no. of items
scored >0):
Range 0-12
Domains
Not specified
Reliability
Internal
consistency:
α = 0.90
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness to
change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Test-retest
reliability:
r = 0.84
(separate
sample of
psychiatric
outpatients,
timeframe
not
specified)
Severity score
(sum of scores):
Range 0-48
* Note: + Bulk of the available evidence supportive of construct validity/responsiveness to change of the instrument; – Bulk of the available evidence does not support this property;
? This property has not been assessed or shows contradictory results.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
39
5.3.3
Hope
A total of five measures assessing hope were identified. These included the Adult
Dispositional Hope Scale (ADHS),175 the Herth Hope Scale (HHS)176/ Herth Hope Index
(HHI),177 the Hope Differential178/ Hope Differential-Short (HDS),179 Miller’s Hope Scale
(MHS),180 and the Nowotny Hope Scale (NHS).181 Psychometric properties for these
measures are presented in Table 6 below, and a short summary of the strengths and
limitations of each of these measures follows.
Strengths and limitations
Adult Dispositional Hope Scale (ADHS)
The Adult Dispositional Hope Scale175 is supported by a relatively large body of evidence
establishing its reliability and exploring its construct validity, in large samples. It is a short
12-item scale, with distinguishable subscales. It was developed based on the
hypothesised content of hope, and validated in a population of university students and
people in psychological treatment. Although it has been used in the cancer context,182
and shows some responsiveness to change in this setting,183 no validation data in the
context of cancer appears to be available for this scale.
Herth Hope Scale (HHS) and Herth Hope Index (HHI)
The 30-item Herth Hope Scale (HHS)176 was not validated in a cancer population, but a
total of 180 cancer patients were involved in pilot and pre-testing, offering some support
for the measure’s content validity. Items were developed based on Dufault and
Martocchio’s multi-dimensional model of hope (informed by research with 82 seriously ill
adults), and attempted to capture both the time-specific and the global dimensions of
hope in both well and ill populations.176 One of the drawbacks of this scale may be its
length, and information about an abbreviated version of the scale is presented below.
Preliminary results are supportive of the scale’s reliability and validity, although there does
not appear to be evidence of its responsiveness to change, and the scale’s developer
suggests that further assessment of its construct validity, factor composition and
predictive validity is required. A recent review suggests that it has been used in a number
of studies in the cancer context to date.182
The Herth Hope Index (HHI),177 an abbreviated 12-item short version, was subsequently
created by selecting and refining items from the larger scale, and validated in a clinical
population of adults with varying degrees of illness severity. These preliminary results seem
supportive of the scale’s reliability and validity, and the factor structure was reproduced
in the study validating the shorter version of the scale. Taken together, these results
suggest that the 12-item version of the scale is as powerful as the 30-item version,
although the scale’s authors acknowledge that further evidence of its construct validity
and generalisability to other populations is required. The measure’s psychometric
properties have also been explored in a population of adolescents and young adults
with cancer and appeared satisfactory, although it was noted that a single factor
solution seemed to fit the data best in this population.184 A recent review suggests that
this version of the scale has also been used in a number of studies in the cancer context
to date.182 Results of an intervention study finding an effect on hope as measured by the
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
40
Herth Hope Index in people with a first recurrence of cancer 185 offer some evidence in
support of the measure’s responsiveness to change.
Hope Differential (HD) and Hope Differential-Short (HDS)
The Hope Differential 178 scale was developed based on a semantic differential
technique, an exploratory approach that is often used to quantify personal or
connotative meaning. A strength of this approach is its appropriateness for conceptual
work, and the purpose of this paper was to describe a model that could capture
individual variation in hope within a common framework. This measure may therefore
reflect more subjective, individual variation in the experience of hope than other more
conventional measures.
Limitations of the Hope Differential scale include its length and the absence of any
information about its use or validity in the context of cancer. However, a nine-item
version, the Hope Differential – Short,179 has more recently been validated in an
advanced cancer population. Although the sample size of 96 is relatively small, and the
average age of 64.6 years may have some implications for generalisability, preliminary
information reported was suggestive of adequate reliability and validity. The scale’s
authors suggest more information is needed on its construct validity.
Miller Hope Scale (MHS)
The Miller Hope Scale (MHS)180 was developed and validated in a sample of university
students. Items were developed based on a review of the literature and research with
individuals who survived a critical illness, which potentially restricts the applicability of
these items for individuals with different prognoses and wider populations. At 40 items, it is
a relatively lengthy measure, and the high internal consistency reliability is suggestive of
potential redundancy in some of these items. Preliminary information presented is
supportive of reliability and validity. More information about its psychometric properties in
the context of cancer is required, although it has been used in a small number of studies
with cancer patients.182 No information was found on its responsiveness to change.
Nowotny Hope Scale (NHS)
The Nowotny Hope Scale (NHS)181 was developed based on a multi-dimensional
approach to the concept of hope, and a literature review identifying its critical attributes.
Purposive sampling was used to identify a validation sample varying in terms of age, and
including both cancer patients and healthy adults. The scale has subsequently been
used in several studies in the context of cancer.182 With 29 items, this is a somewhat
lengthy scale, although it does consist of six different subscales. Preliminary information
presented is supportive of the measure’s reliability and validity, and results of an
intervention study finding an effect on hope as measured by this scale186 offer some
evidence in support of the measure’s responsiveness to change.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
41
Table 6
Psychometric properties of measures of hope
Tool, Author, Year,
(Ref #)
Adult
Dispositional
Hope Scale
(ADHS)
Snyder et al,
1991 175
Description
Administration:
self-report
Items:
8 hope items +
4 filler items
Response scale:
4-point scale (1=
definitely false, 2 =
mostly false, 3 =
mostly true, 4 =
definitely true)
Scores:
Range 12–48
Higher score
indicates higher
hope
Initial and key
validation
sample(s)
(non cancer)
3920 university
students (6
samples) and
206 people in
psychological
treatment
(2 samples)
USA
Initial and key
cancer
validation
sample(s)
Item development
45 items
developed and
administered to
187 male and 197
female university
psychology
students. Items
that did not have
a high itemremainder
coefficient were
discarded –
resulting in a
reduced pool of
14 items. The 4
items that most
clearly reflected
the agency
component and
the 4 items that
most clearly
tapped the
pathways
component were
selected for this
scale.
Domains
Reliability
Agency
a = 0.71 0.76
Internal
consistency:
a = 0.74 - 0.84
Pathways
a = 0.630.80
Test-retest
reliability
(3-week)
r = 0.85
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 183
(8-week)
r = 0.73
(10-week )
r = 0.76
r = 0.82
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
42
Tool, Author, Year,
(Ref #)
Description
Herth Hope Scale
(HHS)
Administration:
Self-report
Herth, 1991 176
Items: 30
Response scale: 4point rating scale
(0–3, where 0
indicates that the
statement never
applies)
Scores:
Range 0–90
Higher scores
denote greater
hope
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer
validation
sample(s)
Item development
300 adults from
three groups
(185 well adults,
40 well elderly,
and 75 elderly
widow(er)s)
180 cancer
patients (NB: this
group was used
for pretesting
and pilot testing
– not the final
validation)
Items developed
based on
dimensions of
Dufault and
Martocchio’s
(1985) model of
hope. Initially 40
dichotomous
response items.
Reduced to 32
items by judges.
Pretested with 20
adults with
cancer, 5 items
replaced. Pilot
tested amongst 40
adult cancer
patients. Revised
after assessment
with convenience
sample of 120
adult cancer
patients. Final
scale contains 30
items, each
scored from 0-3.
Validated in 300
adults.
USA
USA
Domains
Temporality
and future
(cognitivetemporal)
α = 0.91
Positive
readiness
and
expectanc
y (affectivebehavioural
)
α = 0.90
Interconnectedness
(affiliativecontextual)
α = 0.87
Reliability
Internal
consistency
(population):
Well Adults
α = 0.92
Well Elderly
α =0.94
Elderly
Widow(er)s
α = 0.95
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Test-retest
reliability
(3-week):
Well Adults
r =0.90
Well Elderly
r =0.89
Elderly
Widow(er)s
r =0.91
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
43
Tool, Author, Year,
(Ref #)
Herth Hope Index
(HHI)
Herth, 1992
177
Description
Administration:
Self-report
Items: 12
Response scale:
1 (strongly
disagree) to 4
(strongly agree)
Scores:
Range 12-48
Higher scores
indicate a higher
level of hope
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer
validation
sample(s)
Item development
172 adults,
grouped by
severity of illness
into four groups
Two groups of
adolescents and
young adults
with cancer (127
at various stages
of treatment
and 74 newly
diagnosed)
Adapted from the
HHS. Empirical
validation (face
and content) by a
review panel. Pilot
tested with
convenience
sample of 20
acutely ill adults.
Psychometric
evaluation on 70
acutely ill, 71
chronically ill, 31
terminally ill adults.
USA
177
USA, Canada 184
177
Domains
Temporality
and future
(cognitivetemporal)
Positive
readiness
and
expectanc
y (affectivebehavioural
)
Interconnectedness
(affiliativecontextual)
Reliability
Internal
consistency:
Acute
α = 0.98
Chronic
α = 0.96
Terminal
α = 0.94
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 177
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 185
+ 184
Entire sample
α = 0.97
Domains:
α = 0.78 - 0.86
177
Test-Retest
reliability
(2-week)
r = 0.91177
Internal
consistency:
Various
stages
a = 0.84
Newly
diagnosed
a = 0.78
184
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
44
Tool, Author, Year,
(Ref #)
Description
Hope Differential
(HD)
Administration:
self-report
Nekolaichuk et al,
1999 178
Items: 24
Response scale:
7-point
(1=extremely,
2=quite, 3=
slightly, 4=both or
neither, 5= slightly,
6=quite,
7=extremely –
where 1 was the
negative response
and 7 the positive)
Scores:
Range 7 – 168
Higher scores
indicate an
enhanced hope
experience
Initial and key
validation
sample(s)
(non cancer)
550 volunteers
consisting of 146
healthy adults,
159 suffering
from a chronic
and lifethreatening
illness, 206
nurses, and 39
not classified
Initial and key
cancer
validation
sample(s)
Item development
50 bipolar pairs of
adjectives
developed based
on semantic
differential
techniques and
models of hope.
Respondents
rated 6 hoperelated items
(‘hope, a hopeful
person, a person
without hope’;
two vignettes; and
‘a personal story
of hope’) on each
pair to develop a
semantic
differential
research tool.
Principal
components
analysis of
correlations
between pairs
resulted in the
extraction of 10
factors, 3
considered
significant using
the scree test. The
factor structure
was refined to 24
items.
Domains
Personal
spirit
(personal
dimensions)
Reliability
Construct validity
Not specified
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Risk
(situational
dimensions)
Authentic
caring
(interperson
al
dimension)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
45
Tool, Author, Year,
(Ref #)
Description
Hope DifferentialShort (HDS)
Administration:
self-report
Nekolaichuk et al,
2004 179
Items: 9
Response scale: 1
to 7 (1=extremely,
2=quite, 3=
slightly, 4=both or
neither, 5= slightly,
6=quite,
7=extremely –
where 1 was the
negative response
and 7 the positive)
Scores:
Range 7 - 63
Higher scores
indicate an
enhanced hope
experience.
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer
validation
sample(s)
Item development
96 advanced
(palliative)
cancer patients
Based on HD
model 178, where
24 bipolar
adjective pairs
are used to rate
different concepts
relevant to hope,
within 3 subscales.
9 items selected
based on factor
loadings and
representation.
Pilot-tested in 35
advanced cancer
patients who
completed an inperson survey
interview, and a
follow-up semistructured
interview (n= 8).
Both the 24 item
scale (HD) and
the 9 item scale
(HDS) were
administered. 96
patients were
recruited for the
validation of the
HDS.
Domains
Authentic
spirit
a = 0.83
Reliability
Internal
consistency:
a=0.83
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Comfort
a = 0.69
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
46
Tool, Author, Year,
(Ref #)
Description
Miller Hope Scale
(MHS)
Administration:
Self-report
Miller et al,
1988 180
Items: 40
Response scale:
5-point Likert
format from 5
(strongly agree) to
1 (strongly
disagree)
Scores:
Range 40 - 200
Initial and key
validation
sample(s)
(non cancer)
597 university
students for
pretesting and
psychometric
evaluation
USA
Initial and key
cancer
validation
sample(s)
Item development
Originally 47 items,
content
evaluated by 4
judges and
reduced to 40
items. Critiques by
6 experts.
Pretesting with 75
university students.
Psychometric
evaluation in 522
philosophy, fine
arts and nursing
students.
Domains
Satisfaction
with self,
others and
life
Avoidance
of hope
threats
Reliability
Internal
consistency :
α = 0.93
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Test-retest
reliability
(2-week)
r = 0.82
Anticipatio
n of a
future
High score
indicates high
hope
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
47
Tool, Author, Year,
(Ref #)
Description
Nowotny Hope
Scale (NHS)
Administration:
self-report
Nowotny, 1989 181
Items: 29
Initial and key
validation
sample(s)
(non cancer)
Response scale:
4-point Likert
(strongly agree,
agree, disagree,
and strongly
agree)
Scores:
Range 29-119
High scores
indicate high
hope
Initial and key
cancer
validation
sample(s)
Item development
306 adults, (150
with and 156
without cancer),
who had
experienced a
stressful event
Framework drawn
from a review of
the literature
consisting of 6
attributes. A panel
of 6 experts
reviewed the
items and
determined
degree of fit
between items
and subscales
using itemobjective
congruence. A
total of 47 items
were retained.
Purposive
sampling of 306
individuals. After
principal
components
analysis 29 items
were retained.
USA
Domains
Confidence
Relates to
others
Future is
possible
Reliability
Internal
consistency:
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 186
Overall
α = 0.90
Subscales
a = 0.6 to 0.9
Spiritual
beliefs
Active
involvemen
t
Comes
from within
* Note: + Bulk of the available evidence supportive of construct validity/responsiveness to change of the instrument; – Bulk of the available evidence does not support this property;
? This property has not been assessed or shows contradictory results.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
48
5.3.4
Meaning
A total of 21 measures assessing meaning were identified. The Life Orientation Test
(LOT)187 and subsequent Life Orientation Test – Revised (LOT-R)188 was excluded, as the
concept of optimism was seen as distinct from that of meaning itself.
This left a pool of 20 eligible measures for which psychometric properties are presented in
Table 7 below: the Chinese Cancer Coherence Scale (CCCS),135 the Constructed
Meaning Scale,189 the meaning/peace subscale of the Functional Assessment of Chronic
Illness Therapy - Spiritual Well Being Scale (FACIT-Sp),190 the Illness Cognitions
Questionnaire (ICQ),191 the Internal Coherence Scale (ICS),192 the Life Attitude Profile
(LAP)193/ Life Attitude Profile – Revised (LAP-R), the Life Evaluation Questionnaire (LEQ),194
the Meaning in Life questions (including the Benefit Finding Scale, BFS) used by Tomich
and Helgeson,195 the Meaning in Life Questionnaire,196 the Meaning in Life Scale (MILS),197
the Meaning in Suffering Test (MIST),198 the Perceived Meanings of Cancer Pain Inventory
(PMCPI),199 the Personal Meaning Profile200 [cited in Jaarsma et al201], the Positive
Meaning and Vulnerability Scale,202 the Purpose in Life (PIL) Test,203 the Purposelessness,
Understimulation, and Boredom (PUB) Scale,204 the Schedule for Meaning in Life
Evaluation (SMiLE),205 the Sense of Coherence Scale,206 the Sources of Meaning
Profile/Sources of Meaning Profile – Revised (SOMP-R),207 and the World Assumptions
Scale.208
A short summary of the strengths and limitations of each of these measures follows.
Strengths and limitations
Chinese Cancer Coherence Scale (CCCS)
The Chinese Cancer Coherence Scale was developed in the cancer setting in Hong
Kong, suggesting that the specific strengths of this measure are both its relevance to the
cancer setting, and its relevance to Chinese populations, who may differ in terms of
religion and spirituality from the predominantly Christian populations used to validate
many other measures.135 It assesses situational rather than global meaning. An additional
strength may be its bipolar nature, in that it assesses coherence-enlightenment and
incoherence-embitterment as two separate constructs, rather than end-points on a
single unipolar continuum. However, it should be noted that this measure was piloted
only with female breast cancer patients, and further validation research would be
needed to explore its psychometric properties in men and those diagnosed with other
types of cancers. The scales’ authors also regret the lack of inclusion of the FACIT-Sp in
the set of measures administered concurrently with the CCCS, as this would provide
important further information on its convergent validity.135
Constructed Meaning Scale
The Constructed Meaning Scale was developed based on Fife’s theoretical
understanding of meaning, and interviews with people undergoing treatment for cancer.
It focuses on the “meaning that is formulated by individuals as they strive to adapt to lifethreatening illness”, and the impact of illness on perceptions of identity, relationships and
the future.189 Preliminary information is supportive of the measure’s reliability and validity,
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
49
although there is no information on its responsiveness to change, and White reports that it
has not been used in the cancer context since its initial validation.209
Functional Assessment of Chronic Illness Therapy - Spiritual Well Being Scale
(FACIT-Sp): Meaning/Peace subscale
The Functional Assessment of Chronic Illness Therapy – Spiritual Well Being Scale was
developed in a comprehensive process involving interviews with cancer patients,
psychotherapists, and religious experts.190 It was, however, developed and validated in a
predominantly Christian context, and may not reflect very well the experience of people
from other backgrounds.135 The advantage of this measure is that it is part of the large
FACIT measurement suite, which has well-published and rigorous standards of
measurement development.
The eight-item Meaning/Peace subscale assesses a sense of meaning, peace, and
purpose in life.190 The focus is global rather than specific meaning, with cancer not
specifically linked with the concepts of any of the included items.209 None of the
correlations between the Meaning/Peace subscale and other measures of spirituality
and religion assessed in one validation study met the criteria established by the authors
of that study for a significant degree of shared variability.190 They suggest that this scale
measures a concept distinct from those assessed by other measures (i.e. the sense of
meaning and purpose provided by spirituality, as well as a sense of connection to
something bigger than one’s self that is associated with feelings of harmony and peace).
However, they base this conclusion on the face validity of the scale, and suggest that
further research into the construct validity of the scale is required. It has been argued by
others that the Meaning/Peace subscale represents existential wellbeing, while the faith
subscale represents religious wellbeing, a construct more closely related to individual
religiosity.210 Confirmatory factor analysis has subsequently been used to support a
hypothesised three-factor model for the FACIT-Sp, comprising cognitive (i.e. meaning)
and affective (i.e. peace) aspects of spirituality as well as faith.211, 212
Evidence supportive of the responsiveness to change of the Meaning/Peace subscale
has been found in a number of intervention studies e.g. Ando, 2010;213 Breitbart, 2012;214
Breitbart, 2010;215 and Henry, 2010 216.
Illness Cognition Questionnaire (ICQ)
The Illness Cognition Questionnaire was developed to assess both favourable and
unfavourable ways of adjusting to an uncontrollable long-term stressor such as a chronic
disease.191 It measures three illness cognitions which the authors propose as ways of reevaluating such a condition: helplessness (emphasising aversive meaning), acceptance
(diminishing aversive meaning), and perceived benefits (adding a positive meaning). The
questionnaire was developed in a sample of rheumatoid arthritis patients, and crossvalidated in a sample of multiple sclerosis patients. Although it does not appear to have
been used or validated in the cancer context, White nevertheless commends the
thorough and comprehensive attention given to establishing the validity of this measure
and suggests this might be the gold-standard measure of situational meaning for those
examining the impact of cancer on individual experiences.209
Internal Coherence Scale (ICS)
The authors of this scale comment that the original Sense of Coherence scale was
designed and has been used predominantly in psychiatric and psychosomatic
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
50
populations.192 They therefore developed this scale, based on symptoms described in
interviews with cancer patients, and multidisciplinary expert review. Preliminary reliability
and validity data appears adequate, with some evidence in support of the scale’s
responsiveness to change. However, further work exploring the measure’s validity is
required.
Life Attitude Profile (LAP) and Life Attitude Profile – Revised (LAP-R)
The Life Attitude Profile (LAP) is a multi-dimensional measure of meaning, developed “to
assess the degree of existential meaning and purpose in life and the strength of
motivation to find meaning and purpose”.193 It was validated initially in a sample of
university students. The LAP-R is a revised version of this measure, with six subscales and
two composite scores.217 One strength of this measure is the availability of normative
data from non-clinical samples.209 The personal meaning index has been used by
Johnson Vickberg in the cancer context. 218, 219 Its psychometric properties are good, and
White considers this the measure of choice for researchers seeking to explore the link
between global meaning and other variables in the context of cancer.209
Life Evaluation Questionnaire (LEQ)
The Life Evaluation Questionnaire was developed to address a perceived gap in existing
quality of life measurement, and to address “factors which become important when
confronted by fatal illness, such as the meaning of life and the degree to which life has
been enriched by the illness”.194 The context of “fatal illness” was important to the
developers, although items do not presume or refer specifically to serious illness or
impending death. Some evidence supportive of the measure’s reliability and validity is
presented. A strength of this measure is its development and validation in the context of
cancer, however these advantages are offset to an extent by its length, and the
absence of subsequent research using this tool in the cancer setting.
Meaning in Life questions
The Meaning in Life questions developed by Tomich and Helgeson195 assess search for
meaning, perceptions of harm, perceptions of benefit, and positive growth post-cancer.
Some evidence of reliability and validity is provided, and the items measuring positive
growth (derived from the Positive Contributions Scale) have since been used in a number
of studies as a measure of ‘meaning-making’ – often termed the ‘Benefit Finding Scale’ –
which has shown responsiveness to change in several subsequent intervention
studies.220-222 Factor analysis on the original set of items suggested a two factor model,
with items assessing personal growth and acceptance.
Meaning in Life Questionnaire (MLQ)
The Meaning in Life Questionnaire (MLQ) is a brief 10-item measure assessing the
presence of and search for meaning.196 Preliminary data is supportive of its reliability and
validity, with one of the advantages of the scale being the lack of overlap with measures
of distress. A disadvantage is the fact that it was developed and validated in a student
sample, although it has been used in the cancer setting, and evidence supportive of the
responsiveness to change of the MLQ-Search subscale has been found in one
intervention study.223
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
51
Meaning in Life Scale (MiLS)
The creators of the Meaning in Life Scale (MiLS) sought to synthesise diverse
conceptualisations of meaning found in existing scales, and to create a scale
appropriate for use in survivor samples, for whom they assumed enough time would have
passed for the situational meaning of cancer to be integrated into survivors’ global
meaning.197 In contrast to the FACIT-Sp Meaning/Peace subscale, items are administered
with an explicitly cancer relevant stem, “As a result of my cancer diagnosis and
treatment...”. Preliminary data is supportive of the measure’s reliability and validity, and it
has been validated in a mixed sample of cancer patients.
Meaning in Suffering Test (MIST)
The Meaning in Suffering Test (MIST) explores respondents’ perceptions about suffering
and, in particular, the extent to which they found meaning in the experience of
suffering.198 It was initially piloted in a sample of 99 people hospitalised for physical or
psychiatric illness, and is described as assessing subjective characteristics of suffering,
personal responses to suffering, and the meaning of suffering. Some evidence supportive
of the measure’s reliability and validity has been presented,224 although it has not been
used widely, and especially not in the clinical context.209
Perceived Meanings of Cancer Pain Inventory (PMCPI)
This scale was developed based on a small number of qualitative interviews with
Taiwanese cancer patients, informed by Lazarus’s cognitive theory of emotion.199 It has
potential as a measure of the extent to which patients endorse potentially threatening
meanings which may be associated with cancer pain (i.e. the cognitive component of
the experience of cancer pain). However, the authors point out that reliability and
validity for the blame-other and blame-self scales were unsatisfactory, potentially due to
social desirability biases.199
Personal Meaning Profile (PMP)
The Personal Meaning Profile was developed by asking lay people to describe their
ideally meaningful lives and their actual experiences of meaning, and observing that
these actual experiences were significantly and strongly related to ideal statements.200 Its
seven domains include religion, achievement, relationship, self-transcendence, selfacceptance, intimacy, and fair treatment. This measure is one of only a small number to
explore the sources of meaning, although developed and validated in a healthy adult
(student) sample. A Dutch translation has been validated in a cancer population.201 Not
surprisingly, the factor structure was different in this population, suggesting further
exploration of the measure’s psychometric properties in the cancer setting is necessary.
Positive Meaning and Vulnerability scale
The Positive Meaning and Vulnerability scale was developed based on a review of the
literature, focus groups with cancer survivors, and the clinical experience of the
investigators to assess common changes in outlook following breast cancer.202 It should
be noted that this measure was developed and used in the breast cancer survivorship
setting, thus it is unclear how applicable this scale would be in the context of men,
people diagnosed with other types of cancer, and those in active treatment or palliative
care. It should also be noted that items on the ‘positive meaning’ scale were not
explicitly positively worded (e.g. “having breast cancer has changed my outlook on life”)
and could therefore be difficult to interpret due to their possible ambiguity.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
52
Purpose in Life (PIL) Test
The Purpose in Life (PIL) test was developed based on a knowledge of the literature in
existentialism and logotherapy, as a way of measuring the degree to which an individual
experienced ‘purpose in life’.203 Items were validated in a mixed population hypothesised
to have varying levels of purpose in life (e.g. including Junior League females and
Harvard summer school graduate students, as well as hospitalised psychiatric and
alcoholism patients). Evidence supportive of the measure’s reliability and validity is
presented, although there are few studies using this measure in the cancer setting.209
Purposelessness, Understimulation, and Boredom (PUB) Scale
The Purposelessness, Understimulation and Boredom (PUB) scale was developed as a
novel attempt to explore the relevance of meaninglessness and boredom in the cancer
setting and was based on qualitative interviews with cancer patients and health
professionals.204 Results from a mixed sample of 100 patients offer preliminary evidence in
support of its reliability and validity.
Schedule for Meaning in Life Evaluation (SMiLE)
The Schedule for Meaning in Life Evaluation (SMiLE) was developed as a response to
concerns that standardised models of meaning and pre-selected domains might not
adequately represent the highly individualised construct of meaning.205, 225 Its design
allows respondents to list 3–7 areas providing meaning to their lives in their current
situation, and then to rate the importance of each area, and their current level of
satisfaction with each. Given the extent to which many existing meaning in life
questionnaires are based on the theoretical background of the researchers,226 the nontheoretically driven nature of the SMiLE should be considered one of its strengths.225 Data
are also available from a randomly selected representative sample of the German
population (n = 1,004).225 It should be noted, however, that respondent perceptions of
the adequateness and helpfulness of the measure were somewhat ambivalent,205 and
that these results were also obtained during acceptability testing in a cancer setting.227
Sense of Coherence (SOC) Scale
The Sense of Coherence (SOC) Scale is based on the author’s theoretical model about
factors predictive of maintenance or improvement of one’s location on a continuum
between health ease/dis-ease.206 Antonovsky defines sense of coherence as a global
orientation that facilitates coping with stressors through seeing one’s environment as
comprehensible, manageable and meaningful. He notes as a strength of the measure
the diversity of populations in which the measure has been used, as opposed to many
measures of meaning that have been developed and used primarily in student
populations.206 However other authors highlight that its use has predominantly been in
psychiatric and psychosomatic populations, and that its items are ‘backward looking’
and lack face validity in the context of cancer.192 The measure has been used in a
number of studies in the cancer context, and has shown some evidence of
responsiveness to change in intervention studies.228, 229
Antonovsky comments that the scale was developed to measure sense of coherence as
a global orientation, rather than specific individual components and reports on factor
analyses which are supportive of a single factor solution, and suggests that individual
subscale scores should not be calculated on technical grounds.206
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
53
Sources of Meaning Profile (SOMP) and Sources of Meaning Profile –
Revised (SOMP-R)
The Sources of Meaning Profile (SOMP) and Sources of Meaning Profile – Revised (SOMPR) measure the sources providing a sense of meaning and purpose in life to an individual,
with higher scores reflecting the presence of a larger number of sources of meaning.207
Internal consistency of the individual factor scores is one potential limitation of this
measure. It does not appear to have been used in the context of cancer, although
White suggests that if psychometric evaluation in this context was favourable, the links
between sources of meaning and distress could be explored, and this might assist the
development of interventions facilitating patient exploration of underdeveloped sources
of meaning.209
World Assumptions Scale
The World Assumptions Scale was designed by Janoff-Bulman based on her theory of the
impact of traumatic events on people’s assumptions about the world.208 The subscales
identified were subsequently combined to assess three higher order concepts,
‘Benevolence of the World’, ‘Meaningfulness of the World’, and ‘Self Worth’.209 In a
cancer setting, this scale has been used to explore the relationship between assumptive
beliefs about the world and post-traumatic growth following a cancer diagnosis.230
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
54
Table 7
Psychometric properties of measures of meaning
Tool, Author, Year,
(Ref #)
Chinese Cancer
Coherence Scale
(CCCS)
Chan et al,
2007 135
Description
Administration:
Self-report
Items: 11
(from original 24)
Response options
and scoring not
specified
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
190 women with
breast cancer
(newly diagnosed
and survivors) (a)
200 women with
breast cancer
(within 2 years of
diagnosis without
metastasis) (b)
Hong Kong
Item
development
A panel of
eight veteran
social
workers and
psychologists
generated
statements
pertaining to
the cancer
experience
Domains
Two factor
structure (a):
incoherentembittered
(6 items)
α = 0.86
coherentenlightened
(5 items)
α = 0.89
Reliability
Test-retest
reliability
(n = 17; 4
months):
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
coherentenlightened:
r = 0.87
incoherent–
embittered:
r = 0.89
Confirmatory
factor analysis (b)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
55
Tool, Author, Year,
(Ref #)
Description
Constructed
Meaning Scale
Administration:
Self-report
Fife, 1995 189
Items: 8
Response scale:
4-point (1-4:
strongly
disagree;
disagree; agree;
strongly agree)
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
422 persons with a
variety of types of
cancer, at
specified points in
the illness
trajectory
USA
Item
development
Author’s
theoretical
framework and
interviews with
individuals
undergoing
treatment for
cancer
Domains
None specified
Reliability
Internal
consistency
α = 0.81
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Scores:
Range 8-32
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
56
Tool, Author, Year,
(Ref #)
Functional
Assessment of
Chronic Illness
Therapy – Spiritual
Well Being
(FACIT-Sp)
Meaning/Peace
Subscale
Peterman et al,
2002 190
Description
Administration:
Self-report
Items: 12
Response scale:
5-point (0 =‘not at
all’, 1=‘a little bit’,
2=‘somewhat’, 3=
‘quite a bit’,
4=’very much’)
Scores:
Range 0-48
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
1,617 respondents,
predominantly
with cancer
diagnoses (a)
131 cancer
patients with
mixed early stage
and metastatic
diagnoses (b)
USA/
Puerto Rico
Item
development
Interviews with
cancer
patients,
psychotherapists, and
religious
experts
Domains
Meaning/Peace
(8 items)
α = .81 (a)
α = .81 (b)
Range 0-32
Faith
(4 items)
α = .88 (a)
α = .86 (b)
Range 0-16
Reliability
Internal
consistency
α = .87 (a)
α = .86 (b)
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+/?
[Note
authors
comment
more work
needs to be
done to
establish
validity of
Meaning/
Peace
subscale,
but
absence of
correlations
between
subscale
and
measures of
spirituality is
in some
ways a
strength,
showing
divergent
validity.]
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
Evidence of
responsiveness
to change from
a number of
intervention
studies e.g., 213,
214-216
57
Tool, Author, Year,
(Ref #)
Illness Cognition
Questionnaire
(ICQ)
Evers et al,
2001 191
Description
Administration:
Self-report
Items: 18
Response scale:
4-point (0 =‘not at
all’ to
4=’completely)
Scores:
Range for each 6item scale 0-24
Initial and key
validation
sample(s)
(non cancer)
263 outpatients
with rheumatoid
arthritis and 167
patients with
multiple sclerosis
The Netherlands
Initial and key
cancer validation
sample(s)
Item
development
Authors
concept of
illness
cognitions
informed
construction of
new items and
revision of
items from
existing
measures,
assessed by
researchers or
healthcare
professionals;
45 items
administered
to RA sample
Domains
Helplessness
(6 items)
α = .88
Acceptance
(6 items)
α = .90-.91
Reliability
Test-retest
reliability (1
year, n = 81 RA,
n = 67 MS)
r = .68 to .79
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Perceived
benefits
(6 items)
α = .84-.85
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
58
Tool, Author, Year,
(Ref #)
Internal
Coherence Scale
(ICS)
Kröz et al,
2009
192
Description
Administration:
Self-report
Items: 10
Response scale:
5-point (1-5)
Scores:
Range 10-50
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
57 cancer
patients; 57
matching controls
(a)
17 patients with
breast cancer
and 25 with
colorectal cancer
receiving chemo
(b)
Item
development
Developed by
authors based
symptoms
described in
interviews with
cancer
patients and
multidisciplinar
y expert review
panel
Domains
Inner Resilience &
Coherence
(8 items)
α = .91
Range 8-40
Thermocoherence
(2 items)
α = .85
Range 2-10
Reliability
Internal
consistency
α = .91
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
+
Test-retest
(n = 65; median
4 weeks)
r = .80 (a)
Germany
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
59
Tool, Author, Year,
(Ref #)
Description
Initial and key
validation
sample(s)
(non cancer)
Life Attitude
Profile (LAP)
Administration:
Self-report
219 psychology
students
Reker et al,
1981193
Items: 56
USA
Response scale:
7 point (1=strongly
disagree to
7=strongly agree)
Scores:
Range unclear
Initial and key
cancer validation
sample(s)
Item
development
Existing scales,
with additional
original items
Domains
Life purpose
(9 items)
α = .83
Reliability
Subscales
α = .55-.83
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Existential vacuum
(7 items)
α = .75
Life control
(6 items)
α = .78
Death
Acceptance
(6 items)
α = .70
Will to Meaning
(6 items)
α = .57
Goal seeking
(5 items)
α = .66
Future Meaning to
Fulfill (5 items)
α = .55
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
60
Tool, Author, Year,
(Ref #)
The Life Attitude
Profile – Revised
(LAP-R)
Reker, 1992 217 [as
cited in White,
2004 209 and
Reker, 2003 226]
Description
Administration:
Self-report
Initial and key
validation
sample(s)
(non cancer)
Various
Initial and key
cancer validation
sample(s)
Item
development
As above
Domains
Life purpose
Coherence
Items: 48
Response scale:
7 point (1=strongly
disagree to
7=strongly agree)
Scores:
Personal Meaning
Index (16 items)
range 16-112
Choice/
responsibleness
Death
acceptance
Reliability
Internal
consistency
α = .77 to .91
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Test-retest
reliability
(4-6 weeks)
r = .77 to .90
Existential vacuum
Goal seeking
Composite scores:
Personal Meaning
Index
Existential
transcendence
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
61
Tool, Author, Year,
(Ref #)
Life Evaluation
Questionnaire
(LEQ)
Salmon et al,
1996 194
Description
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Administration:
Self-report
201 patients with
incurable cancer
Items: 61
UK
Response scale:
7 point scale with
opposing items at
end of each scale
(0-6)
Scoring not
specified
Item
development
Interviews with
patients with
incurable
cancer and
their
caregivers;
responses
reviewed by a
panel of
patients,
clinicians and
carers and
formed into an
inventory;
piloted with 20
patients
Domains
Freedom
α = .70
Range 0-60
Appreciation of
life
α = .76
Range 0-48
Reliability
Test-retest
reliability
(n = 40; 48-72
hrs)
r = 0.77 to 0.92
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
?
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Contentment
α = .76
Range 0-54
Resentment
α = .85
Range 0-78
Social integration
α = .78
Range 0-48
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
62
Tool, Author, Year,
(Ref #)
Description
Meaning in Life
questions
Administration:
Self-report
Tomich et al,
2002 195
Items: 20
Response scale:
4 point (1=none,
4=a lot) for first 3
domains;
5 point ((1=not at
all; 5=very much)
for remaining 2
domain
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
164 breast cancer
survivors and 164
age-matched
controls
USA
Item
development
Modified from
Behr’s positive
contributions
scale
[perceptions of
benefit finding
for parents of
children with
special needs]
Domains
Search for
meaning
(2 items)
Benefit
(1 item)
Harm
(1 item)
Personal growth
(9 items)
Reliability
Internal
consistency
α = .86 to .89
for personal
growth and
acceptance
(used in
subsequent
research as the
‘Benefit Finding
Scale’)
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
?
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
+ 220-222
Acceptance
(7 items)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
63
Tool, Author, Year,
(Ref #)
Meaning in Life
Questionnaire
(MLQ)
Steger et al,
2006 196
Description
Administration:
Self-report
Items: 10
Response scale: 7
point
(1=absolutely
untrue to
7=absolutely true)
Initial and key
validation
sample(s)
(non cancer)
Four separate
samples of 151,
154, 400, 70
students, plus
252 informants
USA
Initial and key
cancer validation
sample(s)
Item
development
Review of
theories of
meaning in life
and the search
for meaning
and existing
measures;
preliminary
factor analysis
of 44-item
scale;
confirmatory
factor analysis
of 17-item
scale
Domains
Presence
(5 items)
α = .86
Range 7-35
Search
(5 items)
α = .87
Range 7-35
Reliability
See individual
scale scores
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Target selfreports
α = .81 - .84
Test-retest
reliability
(n = 70; 1
month)
r = .70 - .73
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Some evidence
for
responsiveness
to change of
MLQ-Search
subscale 223
64
Tool, Author, Year,
(Ref #)
Description
Meaning in Life
Scale (MiLS)
Administration:
Self-report
Jim et al, 2006 197
Items: 21
Response scale:
6-pt (14 items)
(1=strongly
disagree to
6=strongly agree)
5-pt (7 items)
(0=not at all to
4=very much)
Scores:
Each scale scored
to have a range
of 1-6
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
167 survivors of
breast cancer at
least 2 yrs postdiagnosis (a); 384
survivors of mixed
cancers recruited
via the internet (b)
Item
development
Review of
literature and
existing
measures; 39
items tested
exploratory
factor analysis
in first sample
(a); 21 items
retained for
confirmatory
factor analysis
(b)
Domains
Reliability
Harmony and
peace (4 items)
α = .87
Internal
consistency
α = .93
Life perspective,
purpose and
goals (7 items)
α = .90
Test-retest
(n = 43, 2
weeks)
r = .80
(.67 to .81 for
subscales)
Confusion and
lessened meaning
(7 items)
α = .84
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Benefits of
spirituality
(3 items)
α = .91
Total calculated
as scores for 3
positive scales
minus score for
‘confusion and
lessened
meaning’;
possible range of 3 to 17
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
65
Tool, Author, Year,
(Ref #)
Meaning in
Suffering Test
(MIST)
Starck, 1983 198
Description
Administration:
Self-report
Items: 20
Response scale:
7-pt (1=never to
7=constantly)
Scores:
20-140
Initial and key
validation
sample(s)
(non cancer)
99 hospitalised
patients
(psychiatric and
somatic)
USA
Initial and key
cancer validation
sample(s)
Item
development
Not specified,
based on
Frankl’s
description of
unavoidable
suffering
Domains
Subjective
characteristics of
suffering
(6 items)
Personal
responses to
suffering (8 items)
Meaning of
suffering
(6 items)
Reliability
Internal
consistency:
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+ 224
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Total:
α = .81 to .83
Subscales:
α = .52 to .74
Split half:
r = .82
224
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
66
Tool, Author, Year,
(Ref #)
Description
Perceived
Meanings of
Cancer Pain
Inventory (PMCPI)
Administration:
Self-report
Chen , 1999 199
Response scale:
5-pt (1=this is not
like my thought at
all to 5=this is
exactly my
thought)
Items: 27
Scoring not
specified
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
200 cancer
patients who were
experiencing pain
Taiwan
Item
development
Based on
Lazarus’s
cognitive
theory of
emotion and
findings from 4
qualitative
interviews with
cancer pain
patients
Domains
Loss (5 items)
α = .72 - .80
Reliability
Subscales
varied from
α = .55 - .81
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
?
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Threat (5 items)
α = .76 - .81
Challenge
(4 items)
α = .66 - .75
Blame-others
(4 items)
α = .55 - .56
Blame-self
(4 items)
α = .57 - .67
Spiritual
awareness
(5 items)
α = .75 - .76
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
67
Tool, Author, Year,
(Ref #)
Description
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
294 mixed cancer
patients, all at
least 1 year postdiagnosis
Personal Meaning
Profile
Administration:
Self-report
160 university
students
Wong, 1998 200
cited in Jaarsma,
2007 201
Items: 57
Canada
Response scale:
7-pt (1=not at all
to 7=a great deal)
The Netherlands
201
Item
development
Lay people
asked to
describe
ideally
meaningful life
and actual
experiences of
meaning,
which were
significantly
and strongly
related to
ideal
statements
Domains
Religion
(9 items)
Reliability
Test-retest
reliability
r = .85
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Achievement
(16 items)
Relationship
(9 items)
Selftranscendence
(8 items)
Self-acceptance
(6 items)
Intimacy
(5 items)
Fair treatment
(4 items)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
68
Tool, Author, Year,
(Ref #)
Positive Meaning
and Vulnerability
Scale
Bower et al,
2005 202
Description
Administration:
Self-report
Items: 11
Response scale:
5-pt (0=not at all
to 4=very much)
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Initial factor
analysis on T1
scores of 826
disease-free
breast cancer
survivors;
confirmatory
factor analysis on
T1 scores of 1088
disease-free
breast cancer
survivors;
763 disease-free
breast cancer
survivors
completed
questionnaires at
both T1 and T2 (on
average 2.8 years
later)
Item
development
Based on a
review of
the literature,
focus groups
with cancer
survivors, and
the clinical
experience of
the
investigators to
assess
common
changes in
outlook
following
breast cancer
Domains
Positive meaning
(6 items)
α = .84
Reliability
See individual
scale scores
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
+
Vulnerability
(5 items)
α =.81 to .83
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
69
Tool, Author, Year,
(Ref #)
Description
Purpose in Life
Test (PIL)
Administration:
Self-report
Crumbaugh et al,
1964 203
Items: 20
Response scale:
7-pt
Range:
20-140
Initial and key
validation
sample(s)
(non cancer)
Five samples of
225 subjects:
Junior League
females;
Harvard summer
school
graduates;
students;
psychiatric and
alcoholism
patients
USA
Initial and key
cancer validation
sample(s)
Item
development
Background in
literature of
existentialism
and
particularly
logotherapy
Domains
None specified
Reliability
Internal
consistency:
odd-even
method
r = .81
(SpearmanBrown
corrected to
.90)
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
α = .86 to .97 224
Split-half
reliabilities:
r = .77 to .85
(SpearmanBrown
corrected to
.87 and .92,
respectively) 224
Test-retest
reliabilities:
from .66 to .83
(1, 6, 8, and 12
week intervals)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
70
Tool, Author, Year,
(Ref #)
Description
Purposelessness
Boredom and
Understimulation
scale (PUB)
Administration:
Self-report
Passik et al,
2003 204
Response scale:
4 pt (1=“none of
the time” to 4=”all
of the time”)
Items: 14
Range:
14-56
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
100 cancer
patients with
mixed cancer
types
Item
development
Interviews with
cancer
patients and
professionals to
elicit
perceptions of
the incidence,
causes, scope
and outcomes
of boredom;
45 items
developed
and piloted
Domains
Reliability
Overt boredom
(8 items)
α = .93
Internal
consistency
α = .84
Boredom related
to meaning and
spirituality
(6 items)
α = .85
Test-retest
reliability (n =
20, 7 days):
r = .80
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
71
Tool, Author, Year,
(Ref #)
Schedule for
Meaning in Life
Evaluation (SMiLE)
Fegg et al,
2008 205
Description
Administration:
Self-report
Items: 3-7 selfnominated areas
providing
meaning to life
rated for current
importance and
satisfaction
Response scale:
7 pt; satisfaction
(-3=very
unsatisfied to
3=very satisfied);
importance
(0=not important
to 7=extremely
important)
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
599 students in
Munich and
Dublin and 75
palliative care
patients in Munich
(majority cancer)
Germany, Ireland
Item
development
Developed
analogously to
SWIQoL-DW
methodology
231 as an
attempt to
provide an
individualised
assessment of
Meaning in Life
Domains
Respondentnominated
Satisfaction
α = .71
Importance
α = .49
Reliability
Test-retest
(7 days):
IoW 0.60
IoS 0.71
IoWS 0.72
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
85.6% of items
listed at T1
were listed
again at T2
Scores: Indices of
total weighting
(IoW, 20-100), total
satisfaction (IoS, 0100); total
weighted
satisfaction (IoWS,
0-100)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
72
Tool, Author, Year,
(Ref #)
Sense of
Coherence Scale
(Orientation to
Life
Questionnaire)
Antonovsky,
1993 206
Description
Administration:
Self-report
Items: 29
(13-item version
also available)
Response scale:
7 pt semantic
differential
(different anchors
for each question)
Initial and key
validation
sample(s)
(non cancer)
National sample
of Israeli Jewish
adults
Initial and key
cancer validation
sample(s)
Item
development
Developed
based on
authors’
theoretical
framework and
review from
colleagues
Domains
Reliability
Comprehensibility
(11 items)
Internal
consistency
Manageability
(10 items)
SOC-29
α = .82 - .95
Meaningfulness
(8 items)
SOC-13
α = .74 - .91
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Test-retest
r = .41 - .91
(2 wks - 2 yrs)
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Some evidence
of
responsiveness
to change from
studies
evaluating
interventions 228,
229
Range:
13-91 (SOC-13)
29-203 (SOC-29)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
73
Tool, Author, Year,
(Ref #)
Sources of
Meaning Profile
(SOMP) and
Sources of
Meaning Profile –
Revised (SOMP-R)
Reker, 1996 207
cited in White,
2004 209 and
Prager, 1996 232
Description
Administration:
Self-report
Items: 17
Response scale:
7 pt (not at all
meaningful to
extremely
meaningful)
Initial and key
validation
sample(s)
(non cancer)
298 communityresiding
Canadians of
varying ages
461 Australian
adults of varying
ages
232
Initial and key
cancer validation
sample(s)
Item
development
Author
developed
Domains
Selftranscendence
Collectivism
Individualism
Self
preoccupation
Reliability
Internal
consistency
α = .71 to .80
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Test-retest
reliability
(3 month)
r = .70
Range:
Total
‘Breadth’ score
(number of items
scored at greater
than or equal to
5)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
74
Tool, Author, Year,
(Ref #)
World
Assumptions
Scale
Janoff-Bulman,
1989 208
Description
Administration:
Self-report
Items: 32
Response scale:
8 pt (disagree
completely to
agree
completely)
Subsequent work
also done with 6
pt scale (strongly
agree to strongly
disagree)
Initial and key
validation
sample(s)
(non cancer)
Three samples:
254 subjects (no
details
specified); 356
subjects (no
details
specified); then
338 students
Range:
Scores totalled for
each subscale
Initial and key
cancer validation
sample(s)
Item
development
Items
developed
based on
authors’ theory
of impact of
traumatic
events on
assumptions
and 64-item
questionnaire
piloted in
sample of 254
subjects; final
32-item version
then
completed by
356 subjects;
then
administered
338 students
Domains
Justice
Controllability
Randomness
Reliability
Subscale
reliabilities
between .66
and .78
Construct
validity
(+
supportive /
? not
assessed or
contradicto
ry /
– not
supportive)*
?
Responsiveness
to change
(+ supportive /
? not assessed
or contradictory
/
– not
supportive)*
?
Self-worth
Self-controllability
Luck
Benevolence of
people and
benevolence of
the impersonal
world
(emerged as one
factor rather than
two)
* Note: + Bulk of the available evidence supportive of construct validity/responsiveness to change of the instrument; – Bulk of the available evidence does not support this property;
? This property has not been assessed or shows contradictory results.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
75
5.3.5
Spiritual wellbeing
A total of 11 measures assessing spiritual wellbeing were identified. These included a short
“Are you at peace?” item,155 the Functional Assessment of Chronic Illness Therapy –
Spiritual Well-Being Scale (FACIT-Sp),190 the JAREL Spiritual Well-Being Scale,233 a Linear
Analogue Self-Assessment (LASA) item for Spiritual Well-Being (SWB), 234, 235 the Peace,
Equanimity, and Acceptance in the Cancer Experience (PEACE) scale,236 the Self
Transcendence Scale,237 the Spirit 8,238 the Spiritual Health Inventory,239 the Spiritual
Perspective Scale,240 the Spirituality Transcendence Measure (STM),241 and the Spiritual
Well-Being Scale (SWBS).242, 243 Psychometric properties for these measures are presented
in Table 8 below, and a short summary of the strengths and limitations of each of these
measures follows.
Strengths and limitations
“Are you at peace?”
The “Are you at peace?” item is a brief clinician-administered measure,155 which may be
particularly useful with end-stage cancer patients who may experience difficulties
communicating.156 The importance of this concept of being at peace emerged from
interviews with bereaved family members and healthcare providers about what
differentiates good and bad deaths, with further analysis showing that resolution within
the biomedical, psychosocial or spiritual domains of patients’ experiences often
preceded the subjective experience of being at peace.
Construct validity was supported by strong correlations between responses to this single
item, and indices of emotional and spiritual wellbeing (FACIT-Sp), with equally strong
correlations with faith and purpose subscales, indicating applicability to religions and
non-religious concepts of spirituality. Test-retest reliability for this measure has not been
established.
The advantage of this very short measure is that it appears to map well onto different
forms of spirituality, and can be used as a screening tool to identify patients who may
need more detailed assessment. Furthermore, this question allows patients to frame their
response in accordance with the dimensions of distress and terminology most
appropriate to them, opening a doorway to conversations about concerns most pressing
to patients. Further work to establish the reliability of this measure is needed.
This item is reviewed here as a measure of spiritual wellbeing, as its construct validity was
assessed on these terms, however in their discussion the authors allude to the way in
which this question may facilitate discussions with patients that reveal suffering in the
physical, psychological, social and/or spiritual dimensions, and this measure might also
be considered a tool with the potential for measuring suffering.
Functional Assessment of Chronic Illness Therapy – Spiritual Wellbeing Scale
(FACIT-Sp)
The Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being Scale (FACITSp) was developed as a measure of spiritual wellbeing in cancer patients, on the basis of
interviews with cancer patients, psychotherapists, and religious/spiritual experts (e.g.
hospital chaplains).190 The advantage of this measure, is that it is part of the large FACIT
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
76
measurement suite, which has well-published and rigorous standards of measurement
development.
This measure is relatively brief (12 items), simple, and easy to use. A manual and scoring
instructions for the measure are available. It was validated in a very large sample of
patients (n=1,167, 83% of whom were diagnosed with cancer), and has good internal
consistency (Cronbach’s alpha=0.87). The FACIT-Sp showed moderate correlations with
other measures of spiritual wellbeing and high correlations with quality of life. Some have
suggested that this measure may be measuring emotional wellbeing, rather than spiritual
wellbeing,244 but other studies provide evidence that it is measuring something distinct
from emotional wellbeing.245
It is comprised of two subscales, the 8-item Meaning/Peace subscale assessing a sense of
meaning, peace, and purpose in life, and the four-item Faith subscale measuring several
aspects of the relation between illness and one’s faith and spiritual beliefs. Evidence
supportive of the responsiveness to change of the total score and Meaning/Peace
subscales has been found in a number of intervention studies e.g., 213, 214-216.
JAREL Spiritual Well-Being Scale
The Jarel Spiritual Well-Being Scale was developed as a measure of spiritual wellbeing in
older adults, on the basis of interviews with older adults whose health status ranged from
good to terminal illness, recruited from a variety of settings including hospitals, private
residences and nursing homes.233 Psychometric data are available only from older
people, some of whom had unspecified illnesses, so it is unclear how valid the measure is
in a cancer population. However, the scale has good face validity, with three subscales
measuring a faith/belief dimension, life/self-responsibility and life satisfaction/selfactualisation.
Spiritual Well-Being (SWB) Linear Analogue Scale Assessment (LASA)
The single item Linear Analogue Scale Assessment (LASA) item for Spiritual Well-Being
(SWB) was developed as a single-item screening measure of spiritual wellbeing in patients
with cancer.235 Its advantage is its extreme brevity, and the fact that it correlates well the
FACIT-Sp over time. Because the specific items of the FACIT-Sp which correlated highest
with the SWB LASA varied over time, the authors felt that while it provides valuable
information, more detailed inquiry using longer measures is needed to provide additional
information to guide interventions.
Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE)
The Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) scale236 was
developed to measure the extent to which patients with advanced cancer have a sense
of peaceful acceptance of their terminal illness. With two factors (struggle with illness and
peaceful acceptance), this measure is most relevant to those close to death. It is
relatively brief (12 items).
The measure has good internal consistency (Cronbach’s alpha of 0.81 for subscale 1 and
0.78 for subscale 2), and some evidence of validity, in that subscales were associated
with advanced care planning, use of a feeding tube at the end of life, and knowledge
of terminal illness. Further validation is required to establish its use as a measure of spiritual
wellbeing. The struggle with illness subscale has less face validity as a measure of spiritual
wellbeing, with items such as “To what extent do you feel ashamed of, or embarrassed
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
77
by, your current condition?” Further, correlations between this subscale and self-reported
peacefulness were only moderate.
Self Transcendence Scale (STS)
The Self Transcendence Scale (STS) was developed to describe a group’s ability to derive
a sense of wellbeing through cognitive, creative, social, spiritual and introspective
avenues.237 Relatively brief (12 items), the STS has been validated in a cancer sample,
with expected correlations with other measures, such as depression, and an ability to
discriminate groups known to be depressed from those known not to be depressed.
Cronbach’s alpha has been demonstrated from 0.8 to 0.9 in different samples. One
advantage of the STS is that it appears to be well grounded in a theory of selftranscendence, and has been applied in a variety of populations.
Spirit-8
The Spirit-8 was developed as a measure of spiritual wellbeing with cultural validity in the
African context.238 It was adapted from the Wellbeing and Transcendence subscales of
the Missoula Vitas Quality of Life Index (MVQOLI), which was originally developed in the
United States with a modified version validated in Ugandan advanced AIDS patients.
Thus it is one of the few measures available which has been developed for patients
outside of the Western white Anglo-Saxon context. The SPIRIT 8 was piloted in a sample of
285 palliative care patients primarily diagnosed with HIV, and subjected to a RASCH
analysis, demonstrating an optimal 1 factor structure with adequate reliability
(Cronbach’s alpha of 0.73). To date, data on the validity of this measure is lacking.
Spiritual Health Inventory (SHI)
The Spiritual Health Inventory was developed as a measure of spiritual wellbeing with two
forms to elicit perspectives from the patient and nurse.239 Thus its advantage is that it
allows comparison of patient and nurse perspectives. This scale is relatively long, with 21
items, and has three subscales measuring self-acceptance, relationships and hope. It
was initially evaluated in a small sample of primarily lung cancer patients and the nurses
looking after them, in religiously affiliated hospitals. Thus it is not clear whether it would
generalise to a less religiously focused population. It demonstrated good reliability
(Cronbach’s alpha of 0.85), and higher levels of spiritual health were associated with
older age and having fewer distressing physical symptoms, which the authors argue is
consistent with theories of existential distress. However, more validity data is required, and
testing in other cancer types is also needed.
Spiritual Perspective Scale (SPS)
The Spiritual Perspective Scale was developed as a measure of the extent that spirituality
permeates patients’ lives and that they engage in spiritually related interactions, based
on their own perspective of what spirituality is.240 It is a relatively short scale (10 items) that
has been validated in healthy adults, terminally ill hospitalised cancer patients, and nonterminally ill hospitalised patients. Thus it has wide applicability. It has a single domain,
with high demonstrated internal consistency (Cronbach’s alpha of 0.93 to 0.95 across
different groups). Validity has been demonstrated in that women and those who
reported having a religious background scored higher on the SPS, while over time,
terminally ill patients demonstrated increased spirituality compared with non-terminally ill
patients. However, this scale is strongly based on religious faith (e.g. items include
closeness to God and frequency of prayer), and may not suit non-religious populations.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
78
Spirituality Transcendence Measure (STM)
The Spirituality Transcendence Measure (STM) was developed as a measure of spiritual
wellbeing in terminally ill patients, based on a published model of spiritual needs, thus
being one of the few measures to have a sound theoretical basis.241 It is a relatively long
measure with 22 items. It was developed and validated in Taiwan with 37 cancer patients
with terminal disease admitted to hospices. Thus it has the advantage of being
appropriate outside a US, Christian context. It includes items assessing situational, moral
and religious transcendence, although factor analysis yielded only a single factor with
high internal consistency (Cronbach’s alpha of 0.95). There is some evidence of validity
(higher scores were associated with being aware of terminal illness, greater acceptance
of death and greater likelihood of creating a dynamic will).
Spiritual Well-Being Scale (SWBS)
The Spiritual Well-Being Scale (SWBS) was developed as a measure of spiritual wellbeing
incorporating religious wellbeing (relationship with God) and existential wellbeing,
(focused on meaning, purpose and satisfaction in life).242, 243 It is a relatively long
instrument with 20 items, and has been validated in 38 patients with advanced cancer
and 39 caregivers.246 Thus its advantage is that it can be given to caregivers as well as
patients. Patients and caregivers gave similar responses in the Sherman et al study,246
suggesting a parallel experience of spirituality. Internal consistency of the subscales is
moderately high (0.96 in both patients and carers). This measure is also one of the very
few that report test-retest reliability (from a non-cancer sample: ranging from 0.78 to 0.96
for the various subscales). Further, it is also one of the few to have had longitudinal data
reported over 12 months (showing a dip at 6 months for carers, but otherwise little
change). Construct validity is somewhat supported by the finding that cancer patients
and their carers described significantly higher spiritual wellbeing compared to AIDS
patients and their carers, although more data are needed to support the validity of this
scale.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
79
Table 8
Psychometric properties of measures of spiritual wellbeing
Tool, Author, Year,
(Ref #)
Are you at
peace? Single
item
Description
Administration:
Self-report
Items: 1
Steinhauser et al,
2006 155
Functional
Assessment of
Chronic Illness
Therapy-Spiritual
Well-Being
(FACIT-Sp)
Peterman et al,
2002 190
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
248 patients with
advanced
serious illness
(56% cancer)
Response scale:
5-point
Administration:
Self-report
1,167 patients
(83% with cancer)
Items: 12
US
Response scale:
5-point (0=not at
all to 4=very)
Item development
Domains
Based on
qualitative
research with
patients,
bereaved family
members and
heath care
providers.
Single
question
Interviews with
religious/
spiritual experts
(e.g. chaplains),
patients and
psychotherapists
1. Sense of
meaning and
peace
2. Role of
faith in illness
Reliability
Cronbach’s
alpha n/a
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
No test-retest
reliability
reported
Cronbach’s
alpha=0.87
+
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
+
e.g., 213, 214-216.
80
Tool, Author, Year,
(Ref #)
Description
JAREL Spiritual
Well-Being Scale
Administration:
Self-report
Hungelmann et
al, 1996 233
Items: 21
Response scale:
6 point (strongly
agree to strongly
disagree)
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
294 people
aged 65+,
healthy to
terminally ill,
from nursing
home, acute
care facilities,
home/
apartments,
senior centres
Item development
Domains
Reliability
In-depth
interviews and
participant
observation of
older adults
1. Faith/belief
2. Life/selfresponsibility
3. Lifesatisfaction/
Self
actualisation
Cronbach’s
alpha=0.85
(a) not specified
Single item
Test-retest
not reported.
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
+
?
US
Spiritual WellBeing LASA item
Administration:
Self-report
Johnson et al,
2007 235 (a)
Items: 1
and Locke et al,
2007 234 (b)
Response scale:
100 mm line from
0=as bad as it
can be to 10=as
good as it can
be
(a) 103 patients
with advanced
cancer receiving
radiation therapy
US
(b) team of
multidisciplinary
experts
Cronbach
alpha n/a
(b) 205 patients
with newly
diagnosed highgrade glioma
US
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
81
Tool, Author, Year,
(Ref #)
Peace,
Equanimity, and
Acceptance in
the Cancer
Experience
(PEACE)
Mack et al, 2008
236
Description
Administration:
Self-report
Items: 12
Response scale:
4-point
(1=not at all to
4=to a large
extent)
Self
Transcendence
Scale
(STS)
Administration:
Self-report
(a) Reed, 1991 237
Response scale:
4-point (1=not at
all to 4=very
much)
(b) Thomas et al,
2010 247
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
Domains
160 patients with
advanced cancer
with failure of firstline
chemotherapy
from multiple
institutions
Based on
interviews with
terminally ill
patients, clinical
observation and
literature review
1. Struggle
will Illness
2. Peaceful
acceptance
Developed from
the
Developmental
Resources of Later
Adulthood scale
Single
domain
Based on the
Wellbeing and
Transcendence
subscales of the
MVQOLI
Single
domain
Reliability
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+?
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Cronbach’s
alpha = 0.8 to
0.93
+
?
Cronbach’s
alpha=0.73
?
?
Subscale 1
Cronbach’s
alpha=0.81
Construct validity
Subscale 2
Cronbach’s
alpha=0.78
US
(a) 55 older living
adult cancer
patients.
Items: 15
(b) 87 women
diagnosed with
breast cancer in
past 5 years.
US
Spirit 8
Selman et al, 2012
238
Administration:
Self-report
Items: 8
Response scale:
5-point (1=worst,
to 5=best)
285 African
palliative care
patients
recruited from 5
sites. Primary
diagnosis HIV
(81%) with 18%
cancer
Africa
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
82
Tool, Author, Year,
(Ref #)
Description
Spiritual Health
Inventory (SHI)
Pt form, Nurse
form
Administration:
Self-report form
Nurse-report
form
Highfield, 1992 239
Items: 31
Initial and key
validation
sample(s)
(non cancer)
Response scale:
5 point (1=never
to 5=all of the
time)
Spiritual
Perspective Scale
(SPS)
Reed, 1987 240
Administration:
Self-report
Items: 10
Response scale:
6-point
(response
options vary
between items)
Initial and key
cancer validation
sample(s)
Item development
23 patients with
primary lung
cancer and 27
registered nurses
caring for them in
2 religiously
affiliated hospitals.
Items developed
on basis of
literature review,
expert panel input
and factor
analysis
Domains
Spiritual needs
for:
1. selfacceptance
2. relationships
3. hope
Reliability
Cronbach’s
alpha
Pt form: 0.77
Nurse form:
0.89
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
+
?
US
100 nonterminally ill
hospitalised
patients
100 healthy nonhospitalised
persons.
100 terminally ill
hospitalised
cancer patients
US
Based on an
earlier scale
(Religious
Perspective Scale)
by the same
author, revised
Single
domain
Cronbach’s
alpha=0.930.95 across
groups
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
83
Tool, Author, Year,
(Ref #)
Spirituality
Transcendence
Measure (STM)
Description
Administration:
Self-report
Items: 22
Leung et al,
2006 241
Response scale:
5-point (5=highly
satisfied to
1=highly
unsatisfied)
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
37 terminal
cancer patients
admitted to
hospices
Based on
Kellehear’s model
of spiritual needs,
Literature review,
research team
experience
Taiwan
Domains
1. situational
transcenden
ce
2. moral
transcenden
ce
3. religious
transcenden
ce
Reliability
Cronbach’s
alpha=0.95
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
84
Tool, Author, Year,
(Ref #)
Spiritual WellBeing Scale
(SWBS)
Description
Administration:
Self-report
Items: 20
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
(a) 206 students
at 3 religiously
oriented
colleges
(b) 38 patients
with advanced
cancer and 38
caregivers
Based on
theoretical and
philosophical
position of the
author
(a)100 University
student
volunteers
Also in this sample
were 63 patients
with advanced
AIDS patients and
43 of their carers,
reported
separately
(a) Ellison, 1983 242
(b) Sherman et al,
2005 246
Response scale:
6-point (strongly
agree to strongly
disagree)
US
Domains
1. Religious
wellbeing
2. Existential
wellbeing
Reliability
(a)
Cronbach’s
alpha =0.89
(SWB) and
0.87 (EWB).
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
(a) Test-retest
reliability
=0.93 (RWB)
and 0.86
(EWB)
(b)
Cronbach’s
alpha
patients
=0.96 (RWB)
and 0.78
(EWB)
carers = 0.96
(RWB) and
0.81 (EWB).
* Note: + Bulk of the available evidence supportive of construct validity/responsiveness to change of the instrument; – Bulk of the available evidence does not support this property;
? This property has not been assessed or shows contradictory results.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
85
5.3.6 Multi-dimensional measures of quality of life including a spiritual/
existential dimension
In addition, a total of 13 multi-dimensional measures of quality of life which included a
spiritual/existential dimension were identified.
Upon closer examination, four of these measures were excluded. The Assessment of
Quality of life at the End of Life instrument (AQEL) 248, 249 was excluded as there is
inadequate evidence for the validity and reliability of a discrete existential subscale. The
Missoula-VITAS Quality Of Life Index (MVQOLI) 250 was excluded as, despite being a multidimensional quality of life scale, there is no psychometric data available for the
‘transcendent’ subscale identified by the scale developers, and Selman et al 251 could
not replicate the original subscale. The Quality of Life in Bone Marrow Transplantation
survivors (QOL-BMT) multi-dimensional measure developed by Grant et al 1992 252
intended to include the concept of spirituality but this domain was not clearly identified
by factor analysis. The City of Hope Quality of Life-(COH-QOL-) Ostomy questionnaire
reported by Grant et al 2004 253 includes a spiritual domain but is without sufficient
psychometric data to support it.
The remaining nine measures included the Hospice Quality of Life Index (HQLI),254 the
Long-Term Quality of Life (LTQL) instrument,255 the McGill Quality of Life (MQOL)
questionnaire,256 the Quality of Life at the End of Life – Cancer (QUAL-EC) scale,257 the
Quality of Life Concerns in the End of Life (QOLC-E) scale,258 the Quality of Life for Cancer
Survivors (QOL-CS), 259 the Quality of Life Index (QLI),260, 261 the Skalen zur Erfassung von
Lebens Qualitat bei Tumorkranken-modified version (SELT-M), 262 and the World Health
Organization’s Quality of Life Measure (WHOQOL).263 Psychometric properties for these
measures are presented in Table 9 below, and a short summary of the strengths and
limitations of each of these measures follows.
Note that the Life Evaluation Questionnaire (LEQ) 194 reviewed above under meaning
might also be considered a measure of spiritual wellbeing.
Hospice Quality of Life Index (HQLI)
The Hospice Quality of Life Index (HQOLI) was developed specifically for hospice patients
and has four subscales, including the social/spiritual subscale.254 Both the whole scale
(n=28 items) and the subscale (eight items) are relatively short. It was validated in a large
sample of hospice patients, and demonstrated good reliability (Cronbach’s alpha =
0.82), and evidence of validity, as demonstrated by expected correlations with other
measures.
Long-Term Quality of Life (LTQL) instrument
The Long-Term Quality of Life (LTQL) instrument 255 is one of the few measures in this area
developed for long-term survivors, rather than those nearing the end of life. Further, it has
a theoretical foundation in the Ferrell model of survivorship. The LTQL was adapted from
an earlier measure to focus on female cancer survivorship and expand the spiritual
component. It is relatively short, with 34 items assessing four domains, including the eightitem spiritual/philosophical subscale. The spiritual/philosophical subscale demonstrated
good reliability (Cronbach’s alpha = 0.87) and validity through expected correlations
with other measures in a sample of long term female cancer survivors. One issue with this
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
86
measure is that it has primarily been developed with women, and its application to men
is not clear.
McGill Quality of Life (MQOL) Questionnaire
The McGill Quality of Life (MQOL) questionnaire 256 was developed specifically to assess
multiple quality of life domains in patients facing life-threatening illness covering four
holistic domains: physical, psychological, spiritual/existential and social as well as global
QOL. These subscales, established via principal component analyses in multiple samples,
have sound psychometric properties, including convergent and divergent validity and
internal consistency demonstrated in oncology outpatients 264 and palliative care
patients.256, 265 Test-retest reliability and responsiveness to change have also been clearly
demonstrated, with scores changeable between good and bad days in palliative care
patients.266 The strength of this measure is that it is a brief 17 items that can be selfreported or completed with assistance, it was developed simultaneously in the English
and French languages, and has been validated in other languages.
Quality of Life at the End of Life – Cancer (QUAL-EC)
The Quality of Life at the End of Life – Cancer (QUAL-EC) was developed for populations
near to the end of life, with advanced, chronic disease 257 and was based on qualitative
research regarding what constitutes a “good death”. Thus it is most useful for patients
near to the end of life. The measure is short (only 17 items in total) and has two relevant
subscales: preparation for end of life (five items) and completion (seven items). The
factor structure is sound, and the subscales have adequate reliability (Cronbach’s alphas
= 0.73 and 0.83) and some evidence of validity, with expected correlations between
related measures. It might be argued that these concepts (preparation for death and
completion) are not strictly speaking assessing spirituality, although clearly related to
being at peace, so the measure’s relevance and utility will depend on the individual
researcher’s conception and interests.
Quality of Life Concerns in the End of Life (QOLC-E)
The Quality of Life Concerns in the End of Life (QOLC-E) measure 258 was developed for
Hong Kong Chinese patients with advanced chronic diseases at the end of life. It was
adapted for the Chinese population from a US measure. Thus it will be particularly
valuable for research with Chinese patients. The measure is relatively short (28 items), as
are the two relevant subscales: value of life (six items), and existential distress (three
items). Both subscales have demonstrated reliability (Cronbach’s alpha = 0.83 and 0.79
respectively) and evidence of validity through expected correlations with related
measures.
Quality of Life for Cancer Survivors (QOL-CS)
The Quality of Life for Cancer Survivors (QOL-CS)259 was developed specifically to assess
the challenges and issues important in patients who have moved beyond the initial
period of diagnosis and active treatment, focusing more on the longer term concerns.
The development of this measure was based on a theoretical model of quality of life
including physical, psychological, social and spiritual wellbeing as core dimensions,
previous instruments developed by the City of Hope National Medical Centre
researchers, in-depth interviews with long term cancer survivors and a wealth of clinical
experience with survivors. Of particular importance is the specific focus on understanding
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
87
of the spiritual and existential concerns of those patients surviving a life-threatening illness,
including the positive benefits of surviving as well of the negative impact.
Reliability of the QOL-CS has been demonstrated for the whole scale as well as the four
subscales, with test-retest reliability of 0.89 for the total score over a two-week period,
and 0.9 for the spirituality subscale, and internal consistency of 0.93 overall and 0.89 for
the spiritual subscale. Content validity was established by combining a number of quality
of life research experts, experienced clinical oncology nurses as well as in-depth
interviews with long-term cancer survivors. Predictive validity was demonstrated with
14 items on the whole scale accounting for 91% of variance in total QOL score, and
moderate correlations for three of the four subscales with the FACT-G scale and
subscales. However, the spirituality subscale would benefit from further refinement to
ensure the uniqueness of this domain reflects the broader issues that are specific to
survivors.
Quality of Life Index (QLI) and Quality of Life Index – Cancer Version (QLICV)
The Quality of Life Index (QLI) is a multi-dimensional self-report questionnaire designed to
measure quality of life in terms of satisfaction with life, accounting for satisfaction and
importance regarding various aspects of life as determined by the individual.260 Originally
designed for use in both the general population and specific groups of patients, this
widely used measure has core items as well as numerous illness specific additional items.
The QLI provides an overall quality of life score, as well as four domains: health and
functioning, psychological/spiritual, social and economic, and family. Scores are
calculated by weighting each item with its matched importance response. This weighting
procedure results in the highest scores for combinations of high satisfaction/high
importance and the lowest scores for high dissatisfaction/high importance. There are a
number of versions for use in the general population as well as various illnesses including
cancer. The Quality-of-Life Index-Cancer Version (QLI-CV), modified from the original
index used for the general population, includes physical discomfort or pain, control over
one's own life, and influence of government 261 Validity has been established with the
correlation between the QLI-CV and the assessment of life satisfaction (r=.80) and higher
QLI-CV scores with less depression (P=.0001), less pain (P=.002), and better coping with
stress (P=.0001).
Skalen zur Erfassung von Lebens Qualitat bei Tumorkranken-modified
version (SELT-M)
The Skalen zur Erfassung von Lebens Qualitat bei Tumorkranken-modified version (SELT-M)
(translated as Scale to record quality of life in those suffering from cancer) was adapted
from an earlier measure of quality of life to incorporate more of a spiritual dimension
through its cognitive/spiritual subscale.262 It was validated in patients with metastatic,
locally advanced or non-resectable breast and gastro-intestinal cancers (thus with a
variety of prognoses). The measure is short (23 items, of which eight are from the
cognitive/spiritual subscale). Both the total scale and the cognitive/spiritual subscale
have adequate reliability (both with Cronbach’s alphas of 0.73). The measure can be
completed by patients who are not formally religious, and captures elements of peace
and meaning-making. Some evidence of validity has been reported, in terms of
correlations with interview assessments and with other measures, although further work is
needed to demonstrate its application in wider populations.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
88
World Health Organization’s Quality of Life Measure (WHOQOL)
The WHOQOL-100 Spirituality/Religion/Personal beliefs (SRPB) subscale was created to
supplement the WHOQOL 100.263 The WHOQOL-100 was developed to provide a generic,
cross-culturally valid measure of quality of life covering 25 domains, including four items
addressing meaning of life and personal beliefs. The SRPB was expanded to provide
greater focus on spirituality, and is comprised of eight factors with four items in each:
spiritual connection, meaning in life, wholeness and integration, spiritual strength, inner
peace, hope and optimism and faith. The advantages of this measure is that it was
developed in multiple cultures and multiple religions and so is broadly applicable. It is a
little longer than many other measures (32 items). Further, if the subscale is included as
part of the WHOQOL-100 as intended, it is very long, with 132 items. The SRPB subscale
has excellent reliability (Cronbach’s alpha of 0.91). However, while the WHOQOL-100 as
a whole has a growing body of evidence for its construct validity, the SRPB subscale has
only emerging evidence. It was related to demographic variables such as gender and
education, but has not been directly compared with other measures.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
89
Table 9
Psychometric properties of multi-dimensional measures of quality of life that include a spiritual/existential dimension
Tool, Author, Year,
(Ref #)
Hospice Quality
of Life Index
(HQLI)
McMillan, 1998 254
Description
The HQLI was
developed
specifically for
hospice patients
to measure
quality of life. It
has a combined
social/spiritual
wellbeing
subscale.
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
294 patients with
cancer in
hospices
Author designed.
Revised via
qualitative
interviews with
hospice patients
and health
professionals.
32 healthy adults
USA
Domains
Single domain
(8 items)
Reliability
Cronbach’s
alpha 0.82
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Administration:
Self report
Items: 8 items in
subscale
Response
options: 0-10
scale
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
90
Tool, Author, Year,
(Ref #)
Long-Term Quality
of Life (LTQL)
instrument
Wyatt et al,
1996 255
Description
Developed to
measure QOL in
long-term
female cancer
survivors. The
LTQL has a
spiritual/
philosophical
subscale
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
187 female
cancer survivors
recruited through
the tumour registry
Based on focus
groups with 11
women cancer
survivors, and the
Ferrell model of
breast cancer
survivorship
USA
Domains
Single domain:
Spiritual/
Philosophical
Reliability
Cronbach’s
alpha =0.87
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Administration:
Self report
Items: 8 items in
subscale
Response scale:
5 point Likert
scale (0=not at
all, 4=very
much)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
91
Tool, Author, Year,
(Ref #)
McGill Quality of
Life Questionnaire
(MQOL)
Cohen et al,
1996 264
Cohen et al,
1997 265
Description
Initial and key
cancer validation
sample(s)
Item development
Administration:
Self-report
247 oncology day
centre patients
Total: 16 items
plus 1 global
item
Canada 264
Based on patient
data and
interviews as well
as items
conceptually
based on existing
questionnaires
Existential
wellbeing
subscale:
6 items
Initial and key
validation
sample(s)
(non cancer)
143 in and
outpatients from
palliative care
services
Canada 265
Response scale:
0 ‘not at all’ to
10 ‘extremely’
Domains
Four domains:
1) physical
symptoms
2)
psychological
symptoms
3) existential
wellbeing
4) support
Reliability
Internal
consistency
:
Total:
a = .83-.89
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 264, 265
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 266
264, 265
Existential:
a = .79-.87
264, 265
Test-retest
reliability:
Total:
r = .75 266
Existential :
r = .76 266
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
92
Tool, Author, Year,
(Ref #)
Description
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
Based on
qualitative
research on what
constitutes a
good death
Two domains:
Preparation for
End of Life and
Completion
Cronbach’s
alpha=0.73
Preparation
for end of
life, 0.83 Life
Completion
Based on
ethnographic
study of 20
advanced COPD
patients and 20
metastatic cancer
patients in the last
months of life
Two domains:
Value of life, (6
items) and
Existential
distress (3
items)
Cronbach’s
alpha =
0.83 for
Value of
life, and
0.79 for
Existential
distress
Quality of Life at
the End of Life –
Cancer (QUALEC)
Developed to
measure QOL in
populations near
to the end of life
464 patients with
advanced cancer
from 24 outpatient
oncology clinics
Lo et al, 2011 257
Administration:
Self report
Canada
Domains
Reliability
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
+
?
Items:
Prep for EOL = 5
items
Completion=7
items
Response scale:
5 item Likert
scale
Quality of Life
Concerns in the
End of Life
(QOLC-E)
Pang et al,
2005 258
Developed as a
measure of QOL
of Hong Kong
Chinese patients
with advanced
chronic disease
108 advanced
COPD patients
41 metastatic
cancer patients
Hong Kong
Hong Kong
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
93
Tool, Author, Year,
(Ref #)
Quality of Life –
Cancer Survivors
(QOL-CS)
Description
Administration:
Self-report
Total: 41 items
Ferrell et al,
1995 259
Spiritual
subscale: 7 items
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
686 members of
the National
Coalition for
cancer
Survivorship
(NCCS)
Based on
interviews with
cancer survivors
identifying spiritual
aspects and
positive benefits of
surviving cancer
USA
Domains
Four domains:
1) physical
2)
psychological
3) social
4) spiritual
Reliability
Internal
consistency
:
Total: a =
.93
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Spiritual:
a = .71
Response scale:
Ordinal scale
Test-retest
reliability
(two
weeks):
Total:
r = 0.89
Spiritual:
r = 0.90
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Tool, Author, Year,
(Ref #)
Quality of Life
Index (QLI) –
Generic version
Description
Administration:
Self-report
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
88 healthy
graduate
students 260
111 breast cancer
patients 261
Literature review
of quality of life to
identify common
dimensions of
quality of life
USA
Total: 32 items
Ferrans et al, 1985
260
Psychological/
spiritual: 7 items
Ferrans et al, 1992
267
Quality of Life
Index -Cancer
Version (QLI – CV)
Ferrans et al,
1990 261
Response scale:
6 points
Part I: (1 = very
dissatisfied 6 =
very satisfied)
Part II: (1 = very
unimportant 6 =
very important)
37 dialysis
patients 260
349 in-unit
haemodialysis
patients 267
USA
Domains
Four domains:
1) health and
functioning
2) socioeconomic
3)
psychological/
spiritual
4) family
Psychological/
spiritual
domain
Internal
consistency
(a =.90- .93)
Reliability
Internal
consistency
:
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 261, 267
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Total QLI
a= .90-.95
260, 261, 267
Test-retest
reliability
(2 weeks):
Total QLI
r = 0.81-0.87
260
261, 267
Psychological/
spiritual
domain
test-retest
reliability
not
specified 267
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95
Tool, Author, Year,
(Ref #)
Skalen zur
Erfassung von
Lebens Qualitat
bei
Tumorkrankenmodified version
(SELT-M)
van Wegberg et
al, 1998 262
Description
Developed to
add a spiritual
dimension to an
existing quality
of life measure.
Administration:
Self report
Items: 8 items in
subscale
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
89 patients with
metastatic, locally
advanced or non
resectable breast
(n=49) or gastrointestinal (n=40)
cancer
Developed by
two anthroposophically trained
physicians on the
basis of their
clinical
experience and
theoretical
background
Switzerland
Domains
Single domain
Reliability
Cronbach’s
alpha= 0.73
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Response scale:
5 point (0=not at
all to 4=entirely
so)
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Tool, Author, Year,
(Ref #)
WHOQOL-100
Spirituality/
Religion/Personal
Beliefs (SRPB)
subscale
(a) The WHOQOL
SRPB Group,
2006 263
(b) Den Oudsten
et al, 2009 268
Description
Developed as
an over-arching
measure of
quality of life,
the WHOQOL100 covers 24
facets of quality
of life, The SPRB
scale was
developed to
fully measure
spiritual issues.
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
(a) 5087
community
participants in
18 countries
(b) 356 women
with breast
abnormality
Based on
WHOQOL-100,
expert
consultation,
reviewed by 92
focus groups in 15
countries across 4
religions
(b) 140 breast
cancer survivors
Holland
Domains
Eight factors
with 4 items in
each: spiritual
connection,
meaning in life,
wholeness and
integration,
spiritual
strength, inner
peace, hope
and optimism
and faith.
Reliability
Cronbach
alpha =0.91
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+?
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Administration:
Self-report
Items: 32
Response scale:
5-point Likert
Scale
* Note: + Bulk of the available evidence supportive of construct validity/responsiveness to change of the instrument; – Bulk of the available evidence does not support this property;
? This property has not been assessed or shows contradictory results.
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5.3.7
Spiritual pain, distress or struggle
A total of seven measures assessing pain, distress or struggle of a spiritual nature were
identified. The spiritual pain assessment sheet,124 a single item measure of spiritual pain,269
and the Spiritual Strain Scale 270 were excluded as insufficient evidence of psychometric
properties was presented. The Religious Coping Scale 271 and a measure of Positive and
Negative Religious Coping 272 were also excluded, as these were seen as measures of
coping rather than measures of distress or suffering. These instruments might, however,
potentially be considered for future evaluation and use as measures of ‘spiritual
struggles’. 273 This left two eligible measures for which psychometric properties are
presented in Table 10 below: the Existential Loneliness Questionnaire (ELQ) 274 and the
Spiritual Distress Scale (SDS). 275 A short summary of the strengths and limitations of each of
these measures follows.
Strengths and limitations
Existential Loneliness Questionnaire (ELQ)
The Existential Loneliness Questionnaire was generated in an attempt to measure the
concept of loneliness as encountered in the clinical work of the first author with an
HIV/AIDS population, based on this clinical experience and relevant literature. 274
Preliminary evidence offers some support for the measure’s reliability and validity,
however the small sample size and lack of validation data in the cancer context suggest
further work exploring the psychometric properties of this measure would be advisable
before use in this setting.
Spiritual Distress Scale (SDS)
The Spiritual Distress Scale 275 was developed in the cancer context in Taiwan as part of a
qualitative study in which 20 cancer patients were interviewed about spiritual needs, and
validated in a purposive sample of 85 cancer patients. It has four factors, relationship with
self, relationship with others, relationship with God, and facing death. Internal consistency
reliability is high, suggesting perhaps some redundancy in the content of items.
Insufficient information has been presented to assess the measure’s validity.
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98
Table 10
Psychometric properties of measures of spiritual pain, distress and struggle
Tool, Author, Year,
(Ref #)
Description
Initial and key
validation
sample(s)
(non cancer)
Existential
Loneliness
Questionnaire
(ELQ)
Administration:
self-report
47 HIV-infected
women
Items: 22
Canada
Mayers et al,
2002 274
Response scale:
6-point scale
(1= not at all true
of me, 3=
sometimes true of
me, 6 = very much
true of me)
Scores:
Range 22-132
Initial and key
cancer validation
sample(s)
Item development
40 items
generated by first
author, were
reviewed with
colleagues (8
were excluded).
32 remaining
items (called ELQP) were
empirically tested.
22 items were
reasonably
compatible with
the Rasch model
and were found
to be internally
consistent.
Domains
Reliability
Internal
consistency
a = 0.90
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
99
Tool, Author, Year,
(Ref #)
Spiritual Distress
Scale (SDS)
[Taiwan]
Description
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
Administration:
Self-report
85 cancer
patients
Items: 30
Taiwan
Scale developed
as part of a
qualitative study
in which 20
cancer patients
were interviewed.
Measurement
study with 85
cancer patients
during
hospitalisation.
Ku et al 2010 275
Response scale:
4-point scale (1-4)
Scores:
Range 30-120
Higher scores
indicative of a
higher level of
spiritual distress
Domains
Relations
with self
Relations
with others
Relations
with God
Attitude
towards
death
Reliability
Internal
consistency
: Total
scale
α = 0.95
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Relations
with self
α = 0.93
Relations
with others
α = 0.92
Relations
with God
α = 0.90
Attitude
towards
death
α = 0.95
* Note: + Bulk of the available evidence supportive of construct validity/responsiveness to change of the instrument; – Bulk of the available evidence does not support this property;
? This property has not been assessed or shows contradictory results.
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5.3.8
Distress in palliative care
A total of 3 measures assessing distress specifically in a palliative care setting were
identified. A Will To Live (WTL) visual analogue scale 276 was excluded, as insufficient
psychometric properties were reported for this item. Measures included in this review
were the Schedule of Attitudes toward Hastened Death (SAHD),277, 278 and the clinicianadministered single-item screening instrument for assessing desire for death.166
Psychometric properties for these measures are presented in Table 11 below, and a short
summary of the strengths and limitations of each of these measures follows.
Strengths and limitations
Schedule of Attitudes toward Hastened Death (SAHD)
The Schedule of Attitudes toward Hastened Death (SAHD) was developed to assess
medically ill patients’ desire for hastened death, and has been validated in both an
HIV/AIDS and a cancer population, with similar results obtained in each. 277, 278 Results
suggest that the desire for death is not merely a proxy for psychological distress, but is
likely influenced by depression and distress. The scale allows for potential comparisons to
be made between low, moderate and high levels of desire for death.
Single-item screening instrument for desire for death
The single-item screening instrument for desire for death is a clinician-administered
measure of desire for death from the Screening Instrument for Symptoms and Concerns
(SISC), a 13-item structured interview for assessing physical symptoms and psychosocial
concerns of patients in palliative care.166 Items were developed and piloted in the
palliative care context. The information presented appears supportive of the item’s
reliability and validity, although as yet there does not appear to be evidence of its
responsiveness to change. Advantages of this measure include its relative brevity and
minimal patient burden, the consistent format in which to assess a range of clinically
relevant end–of-life symptoms and concerns, and its potential as a screening tool.
However, the interview protocol does not address a comprehensive list of symptoms and
concerns, and administration is restricted to those who are mentally competent.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
101
Table 11
Psychometric properties of measures of distress in palliative care
Tool, Author, Year,
(Ref #)
Description
Schedule of
Attitudes toward
Hastened Death
(SAHD)
Administration:
Self-report
Rosenfeld et al,
1999 278
Response scale:
True/False
Rosenfeld et al ,
2000 277
Scores:
Range 0 - 20
Items: 20
Higher scores
indicative of
higher level of
desire for death
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
195 patients
with HIV/Aids
(148 ambulatory
and 47 admitted
to end-of-life
care)
92 Terminally ill
cancer patients
(life expectancy
<6 months)
A pool of
questions was
developed and
revised based on
expert feedback
to yield 30 items.
This was
administered to 55
AIDs patients and
based on
acceptance 5
items were
removed and 1
rewritten. Another
6 items were
removed, leaving
a total of 20 items.
This was validated
in 195 patients.
USA 278
USA 277
Domains
Reliability
Internal
consistency
a = 0.89 278
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+ 277, 278
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
?
Internal
consistency
a = 0.88 277
Split-half
reliability
0.89
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102
Tool, Author, Year,
(Ref #)
Single-item
screening tool for
desire for death
(Structured
Interview for
Symptoms and
Concerns, SISC)
Wilson et al,
2004 166
Description
Initial and key
validation
sample(s)
(non cancer)
Initial and key
cancer validation
sample(s)
Item development
Administration:
Clinician
administered
69 palliative care
(advanced)
cancer patients
Items: 1
Canada
Items selected
from literature
regarding end-oflife concerns and
mental disorders in
primary or
palliative care,
approach
adopted similar to
Schedule for
Affective Disorders
and
Schizophrenia,
and rating
descriptors taken
from Memorial
Pain Assessment
Card. Draft items
circulated to
palliative care
physicians and
nurses and pilot
tested with 10
palliative care
inpatients.
Response scale:
7-point
(0 = none to
6 = extreme)
1 or 2 indicates
the experience of
the symptom or
concern is
relatively low.
3 corresponds to
an issue that is
generally a
significant
problem. Higher
scores associated
with clear
presence of
symptom/
concern at
clinically
important level varying degrees
of severity.
Domains
Single
item
Reliability
Inter-rater
reliability
r = .99
Construct validity
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
+
Responsiveness
to change
(+ supportive /
? not assessed or
contradictory /
– not supportive)*
Not specified
Test-retest
(1-3 days)
r = .90
* Note: + Bulk of the available evidence supportive of construct validity/responsiveness to change of the instrument; – Bulk of the available evidence does not support this property;
? This property has not been assessed or shows contradictory results.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
103
6
Results of interventions to alleviate suffering
6.1
Included studies
Systematic searches identified 42 relevant studies in which interventions to alleviate
suffering were evaluated in a randomised controlled trial or controlled trial. Only two
studies addressed suffering directly as a target of the intervention, while the majority
(n = 40) targeted its symptoms. (For a list of synonyms and symptoms of suffering
developed for the purposes of this review, see Appendix A.) The 42 studies were sorted
into seven categories, depending on the intervention type. Two studies with more than
one intervention arm have been included in all relevant categories; an * is used to
denote these studies in the tables that follow.
1) Psycho-educational (n=9)
2) Meaning-centred (n=5)
3) Supportive-expressive (n = 5)
4) Stress reduction, including yoga, mindfulness, meditation, cognitive-behavioural
stress management (n=10)
5) Spiritual (n = 5)
6) Hope-centred (n=3)
7) Other (n=7)
The full reference list of included articles is shown in Appendix C.
6.2
Psycho-educational interventions
Nine studies evaluating psycho-educational interventions met the review criteria.
Interventions included health education programs, a structured nursing intervention to
facilitate self-care, and cognitive-behavioural educational interventions. Key
characteristics of study methodology and of the psycho-educational interventions are
shown in Table 12 below.
6.2.1 Summary of psycho-educational intervention study characteristics
Study sample
Of the nine identified studies in which psycho-educational interventions were evaluated
(see Table 12), seven were from the USA, one was from Israel, and one was from Sweden.
The study sample sizes were generally moderate, ranging from as small as 40 to the
largest study which included 441 dyads. Five studies included breast cancer patients only
(one targeting both women with breast cancer and their partners and/or carers), two
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
104
studies included prostate cancer patients (one targeting both men with prostate cancer
and their partners and/or carers), and two studies included patients with a variety of
cancer types.
Three studies included patients with a mix of both early and advanced stage cancers,
three included patients with early stage disease only, and two included patients with
advanced cancer only.
Intervention
The aims of the intervention studies varied. Six of the interventions were health education
programs, two were cognitive-behavioural educational interventions, and one was a
structured nursing intervention to facilitate self-care and patient empowerment. One of
the cognitive-behaviour interventions focused on problem-solving, the other on selfmanagement and coping with cognitive failures of everyday life.
Duration of the interventions lasted from between one month to six months, and
interventions were delivered face-to-face in eight studies, and via telephone in one
study. Six of the interventions were nurse-delivered, while delivery of the other
interventions was reported less specifically, and comprised (each one study only):
clinicians – not further specified, health educators, and research assistants. All but one of
the interventions appeared highly structured, with manuals and training provided to
those who delivered the intervention. The remaining program was a lecture program,
followed by group discussion.
Four of the interventions targeted both patients and their partners or caregivers, while the
remaining five studies targeted only individuals with a cancer diagnosis.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
105
Table 12
Intervention characteristics – Psycho-educational interventions (n = 9)
Title Intervention Studies with significant findings Badger Intervention1
279
(2011) * Telephone interpersonal
counselling - TIP-C
USA Intervention2
Health education - HEAC
Frequency and duration
Duration of each session
Approx 1 hr assessment, 30
mins thereafter
Number of sessions
8 (weekly) for survivors; 4
(fortnightly) for partners
Total duration
8 weeks
Delivery
Nurse or social worker
TIP-C
Research assistants
HEAC
Population Methods Results Level of Evidence Cancer types
Measures
Summary of results
Study type
Prostate
No significant changes over time for TIPC condition (b = -1.52, n.s.)
Randomised
controlled trial
Mixed
Majority did not
know
Quality of Life - Breast
Cancer
(QOL-BC) spiritual
wellbeing scale, items
deemed applicable
across cancer types
T0=43.64
Level of evidence
T1=42.76
Level II
T2=42.09
Quality
Timing
Follow-up
Baseline [T0]
Significant improvement over time in
spiritual wellbeing for HEAC (b = 2.6, p <
0.05)
Strong Time since
diagnosis
Severity
Mean 187 weeks
(3.6 yrs)
Treatment status
Mixed
Post – 16 weeks [T2]
Sample Size N (Int1, T0)
36
Unclear how
many were on
treatment during
intervention
N (Int1, T1)
36
Mean age
N (Int2, T0)
35
Group or individual
67
Couple (separate calls)
Gender
Mode
Men only
Telephone Post – 8 weeks [T1]
T0=44.17
T1=46.45
T2=47.83
Slopes of regression lines significantly
different; F(1,69) = 10.34, p < 0.01
Reviewer comments
Unclear what materials (if any) provided
that may account for improvement in
spiritual wellbeing. N (Int2, T1)
34
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106
Title Delbar 228
(2001) Israel Intervention Intervention1
Structured nursing
intervention involving case
management and patient
empowerment (to facilitate
self-care)
Comparison condition(s)
Matched control group
Frequency and duration
Duration of each session
1-2 hours
Number of sessions
10
Total duration
3 months
Delivery
Nurse
Group or individual
Individual
Met with 1-2 patients at
their homes
Mode
Face-to-face
Population Cancer types
Methods Measures
Results Summary of results
Level of Evidence Study type
Mixed
60% breast
Sense of Coherence
(SOC)
Pseudorandomised
controlled trial
Severity
Follow-up
Mixed
82% early; 17%
advanced; 1%
unknown
Baseline [T0]
Timing
N (T0)
103
Significant difference between groups
before intervention shown by ANOVA,
with higher total score and
manageability sub-score in cont. group,
both p < 0.02. Baseline means total cont.
149.15, int. 138.58, manageability 52.75,
48.27. Significant difference postintervention on general score and all
subscores found by ANCOVA using pretest scores as covariates, reported as p <
.000. Post-intervention total cont. 139.04,
t = -2.31, p < .05; int 153.08, t = 3.53, p <
.001. Post-intervention manageability
cont. 49.94, t = -1.64, n.s., int. 53.88, t =
3.24, p < .001.
Time since
diagnosis
At least 3 months
before the study
began
Treatment status
On treatment
Mean age
50
Gender
77% female
Post – 3 months [T1]
Sample size
N (Int1, T1)
48
N (Cont1, T1)
46
Level of evidence
Level III-1
Quality
Strong
No significant differences
meaningfulness and comprehensibility
for cont group. Meaningfulness int. pretest 41.46, post-test 45.41, t = 2.72, p <
.01; comprehensibility int. pre-test 48.85,
post-test 53.79, t = 2.46, p < .01.
Reviewers comments
Note presence of significant baseline
differences; also that intervention overall
was successful in decreasing symptom
intensity etc.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
107
Title Ferguson 280
(2012) USA Intervention Intervention1
Brief cognitive-behavioural
therapy aimed at
enhancing cancer survivor
skills for self-managing and
coping with cognitive
failures of daily life
Population Cancer types
Methods Measures
Breast
Quality of Life - Cancer
Survivors (QOL-CS)
Comparison condition(s)
Waitlist control
Time since
diagnosis
At least 18 months
post
chemotherapy
according to
eligibility criteria.
Not otherwise
specified.
Frequency and duration
Duration of each session
30-50 minutes
Number of sessions
4 (fortnightly) plus phone
calls between visits
Total duration
8 weeks
Delivery
Clinician (not further
specified)
Group or individual
Severity
Early
Timing
Follow-up
Baseline [T0]
Post – 8 weeks [T1]
Post – 4 months [T2]
Sample size
N (Int1, T0)
19
N (Int1, T1)
18
Treatment status
Off treatment
Mean age
50
Gender
N (Cont1, T0)
21
Results Summary of results
Significant group x time interaction
effect (with education and IQ as
covariates) on spiritual wellbeing scale,
F(2, 76) = 3.44, p < .05. Planned
comparisons identified significant
differences at T1 and T2 assessment for
int., T0 5.91, T1 6.57, d = -.35; T2 6.14,
d = -.11, p = .03. Differences for cont. n.s.,
T0 6.31, T1 6.02, T2 6.02. Difference in
effect size (i.e. cont. effect size
subtracted from int. effect size) = -.49 T1,
-.26 T2.
Level of Evidence Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
Reviewers comments
QOL-CS spiritual wellbeing involves being
positive, hopeful, having purpose in life
and certainty about future. May be
reflective, according to authors, of more
optimistic/positive outlook in int. group
post-treatment.
N (Cont1, T1)
19
Women only
Individual
Mode
Face-to-face
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
108
Title Koinberg 281
(2006) Sweden Intervention Intervention1
Multidisciplinary
educational program
Comparison condition(s)
Traditional follow-up to a
physician (twice yearly
examinations)
Frequency and duration
Duration of each session
1 hr lecture followed by
support discussion
Number of sessions
4 (weekly)
Total duration
4 weeks
Delivery
Nurse
Collaborating with
physiotherapist, social
worker, physician, and
member of local breast
cancer patients' advocacy
group
Population Cancer types
Methods Measures
Breast
Sense of Coherence
(SOC)
Severity
Early
Timing
Time since
diagnosis
Newly diagnosed
women who had
undergone breast
cancer surgery
Treatment status
Follow-up
Baseline [T0]
Post – 12 months [T1]
Sample size
N (Int1, T0)
50
N (Int1, T1)
50
Mixed
Mean age
61
Gender
Results Summary of results
There were no statistically significant
differences between groups in sense of
coherence at baseline or 1-year followup.
Level of Evidence Study type
Statistically significant worsening of SOC
(p < .001) in cont. group between
baseline (74.4) and follow-up (67.7),
magnitude of 8.4% (6.7 points), int. group
did not change significantly, T0 69.8, T1
70.9.
Level III-2
Non-randomised,
experimental trial
Level of evidence
Quality
Good
Reviewers comments
Note that int. group rated physical
wellbeing lower than cont. group at
baseline.
N (Cont1, T0)
47
N (Cont1, T1)
46
Women only
Group or individual
Group
Mode
Face-to-face
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
109
Title Northouse 169
(2005) USA Intervention Intervention1
Population Cancer types
Methods Supportive, educative
intervention for cancer
patients and caregivers
Breast
Severity
Beck Hopelessness
Scale
Advanced
Follow-up
Timing
Baseline [T0]
Diagnosis of
recurrence or
progression within
the previous
month
Post – 3 months [T1]
Treatment status
94 dyads
Mixed
Approx 66%
receiving chemo
or combination of
therapies
N (Int1, T1)
Comparison condition(s)
Standard care
Frequency and duration
Duration of each session
90-minute home visits; 30minute phone calls
Number of sessions
3 home visits (initial phase);
2 phone calls (booster
phase)
Total duration
3 months (initial phase)+ 3
months (booster phase)
Delivery
Nurse
Mean age
54
Gender
Women only
Measures
Post – 6 months [T2]
Sample size
N (Int1, T0)
69 dyads
Results Summary of results
Level of Evidence Study type
Control patients had significantly less
hopelessness at baseline than
intervention patients, t (132) = -2.11,
p < .05. This difference was controlled for
in subsequent analyses.
Randomised
controlled trial
A significant group by time effect was
found on patient hopelessness from
baseline to 3 months, F (1,131) = 9.48,
p = 0.002. Patients receiving the
intervention showed a significant
decrease in hopelessness (p = .03),
whereas patients in the control group
reported a significant increase in
hopelessness (p = .03). The difference
found at 3 months was not sustained
from baseline to 6 months.
Quality
Int
N (Cont1, T0)
Level of evidence
Level II
Strong
T0 4.52, T1 3.56, T2 4.20
Cont T0 2.98, T1 3.96, T2 3.46
88 dyads
N (Cont1, T1)
65 dyads
Group or individual
Patient-carer dyad
(conjoint)
Mode
Face-to-face
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Title Intervention Studies with no significant findings Meneses Intervention1
(2007) 282 Psycho-educational
USA support intervention
Comparison condition(s)
Attention control (face-toface and phone calls)
Frequency and duration
Duration of each session
60-90 minutes
Number of sessions
3 (plus 5 follow-up – 3 by
phone, 2 face-to-face)
Total duration
6 months (1 month for first 3
sessions; follow-up once a
month for the next 5
months)
Population Cancer types
Methods Measures
Results Summary of results
Level of Evidence Study type
Breast
Severity
Quality of Life - Cancer
Survivors (QOL-CS)
No differences in QOL were reported at
baseline between groups.
Randomised
controlled trial
Early
Follow-up
Level of evidence
Timing
Baseline [T0]
No significant differences in spiritual
wellbeing between groups.
Time since
diagnosis
All within 1 year of
diagnosis
Post – 3 months [T1]
Treatment status
N (Int1, T0)
Post-treatment All
had received
chemo and/or
radio
129
Mean age
N (Cont1, T0)
132
54.5
Delivery
Gender
Nurse
Women only
Post – 6 months [T2]
Reviewers comments
Note improvements overall and in
psychological and social wellbeing.
Level II
Quality
Strong
Sample size
N(Int1, T1)
125
N (Cont1, T1)
131
Group or individual
Individual
Mode
Face-to-face
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Title Meneses 283
(2009) Intervention Intervention1
Population Cancer types
Methods Psycho-educational
support intervention
Breast
USA Severity
Quality of Life – Breast
Cancer (QOL-BC)
Comparison condition(s)
Early
Follow-up
Timing
Baseline [T0]
Time since
diagnosis
All within 1 year of
diagnosis
Post – 3 months [T1]
Treatment status
N (Int1, T0)
Post-treatment At
least 1 month post
treatment
27
Attention control (face-toface and phone calls)
Frequency and duration
Duration of each session
60-90 minutes
Number of sessions
3 (plus 5 follow-up – 3 by
phone, 2 face-to-face)
Total duration
6 months (1 month for first 3
sessions; follow-up once a
month for the next 5
months)
Delivery
Nurse
Mean age
54
Gender
Women only
Measures
Post – 6 months [T2]
Sample size
N (Cont1, T0)
26
Results Summary of results
Level of Evidence Study type
Experimental group reported better
overall and domain QOL scores at
baseline, included as covariates in
analysis.
Randomised
controlled trial
Differences in spiritual QOL over time did
not differ between groups, controlling for
baseline values and other covariates
(i.e. stage of disease and radiation
therapy).
Level of evidence
Level II
Quality
Strong
Reviewers comments
Note session 3 in this intervention
program appeared to focus more
explicitly on spiritual wellbeing then in
the original Meneses (2007)
implementation of this intervention.
Note that there was no drop out
between T0 and T2.
Note significant improvements for the
intervention group overall and in
psychological wellbeing.
Group or individual
Individual
Mode
Face-to-face
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Title Meyers 284
(2011) USA Intervention Intervention1
Population Cancer types
Methods Cognitive-behavioural
problem-solving
educational intervention
Mixed
28% gastroint, 27%
genito-urinary
City of Hope - QOL
Comparison condition(s)
Severity
Baseline [T0]
Usual care
Advanced
Frequency and duration
Duration of each session
Not specified
Number of sessions
3
Total duration
1 month
Delivery
Health educators
Group or individual
Patient-carer dyad
(conjoint)
Results Summary of results
Level of Evidence Study type
Randomised
controlled trial
Post – 30 days [T1]
Patient QOL showed no significant
difference in the rate of change
between the intervention and usual care
arms (p = 0.70). Subscale analyses
showed no differences between the
intervention and usual care arms.
Timing
Post – 60 days [T2]
Reviewers comments
Time since
diagnosis not
specified
Post – 90 days [T3]
Note caregiver QOL declined less in
intervention group.
Treatment status
Participating in
Phase 1, 2, or 3
therapeutic
clinical trial for
refractory,
recurrent or
metastatic
disease
Mean age
Mode
61.5
Face-to-face
Gender
55% female
Measures
Follow-up
Post – 120 days [T4]
Post – 180 days [T5]
Sample size
Level of evidence
Level II
Quality
Strong
Note that by T5 only 104 dyads remained
in the intervention group and 32 in the
control group.
N (Int1, T0)
348 dyads
N (Int1, T1)
324 dyads
N (Cont1, T0)
128 dyads
N (Cont1, T1)
117 dyads
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Title Northouse 285
(2007) USA Intervention Intervention1
Population Cancer types
Methods Supportive, educative
intervention for cancer
patients and caregivers
Prostate
Severity
Beck Hopelessness
Scale
Mixed
Follow-up
Timing
Baseline [T0]
Time since
diagnosis
65% newly
diagnosed; 15%
recurrence; 21%
advanced
Comparison condition(s)
Standard care
Frequency and duration
Duration of each session
90-minute home visits; 30minute phone calls
Number of sessions
3 home visits; 2 phone calls
Total duration
Within 4 months
Delivery
Nurse
Treatment status
Mixed
Mean age
63
Gender
Men only
Results Summary of results
Level of Evidence Study type
Randomised
controlled trial
Post – 4 months [T1]
No differences between intervention
and control patients on hopelessness
(although there was arguably a trend for
significance for hopelessness at 4
months, with control group reporting
higher hopelessness, controlling for
baseline values, F=3.22, p = .07, d = -.17).
Post – 8 months [T2]
Reviewers comments
Strong
Post – 12 months [T3]
Note benefits to hopelessness for spouses
in intervention group.
Measures
Sample size
Level of evidence
Level II
Quality
N (Int1, T0)
129
N (Int1, T1)
112
N (Cont1, T0)
Group or individual
134
Couples (conjoint)
N (Cont1, T1)
Mode
123
Face-to-face
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6.2.2
Results of psycho-educational interventions studies
Seven of the nine studies were Level II randomised controlled trials, one was a pseudorandomised controlled trial (Level III-1), and the other a non-randomised experimental
trial where participants at one hospital received the intervention and participants at
another hospital served as the control group (Level III-2). The Level III-2 study received a
‘good’ quality rating, while the remaining studies were considered ‘strong’. Eight out of
the nine studies conducted statistical analyses comparing group outcomes (between
group analyses), while the other study reported within groups changes over time.
Of the studies comparing the effect of psycho-educational studies between groups, four
studies found a significant effect on three separate measures. The remaining four studies
reported non-significant differences between the intervention and control groups. The
study examining within groups changes found significant improvements over time in a
sense of coherence measure in the intervention group, and a significant decrease over
time in the control group. However, the intervention and control groups were not directly
compared, and baseline scores differed significantly. While it is difficult to draw
conclusions about the effectiveness of the intervention over the control group, the
efficacy of the intervention is worthy of further investigation. See results summarised in
Table 13 below.
Table 13
Author,
year
Badger
(2011) 279
Summary of results for psycho-educational interventions
Significant intervention
changes as compared to
control group
- QoL-BC Spiritual WellBeing (post-intervention [8
weeks], 4 months)
Non-significant changes
- SOC total and
subscales (postintervention [3 months]
Delbar
(2001) 228
Ferguson
(2012) 280
Koinberg
(2006) 281
Meneses
(2007) 282
- QOL-CS Spiritual WellBeing (post-intervention [8
weeks], 4 months)
- SOC total (12 months)
Meneses
(2009) 283
Meyers
(2011) 284
Northouse
(2005) 169
Northouse
(2007) 285
Changes unable to be
identified as between
groups interactions not
reported
- Beck Hopelessness Scale
(post-intervention [3
months])
- QOL-CS Spiritual Well-Being
(post-intervention [3 months],
6 months)
- QOL-BC Spiritual Well-Being
(post-intervention [3 months],
6 months)
- COH QOL Spiritual WellBeing (post-intervention [30
days], 60, 90, 120, 180 days)
- Beck Hopelessness Scale (6
months)
- Beck Hopelessness Scale
(post-intervention [4 months],
8 and 12 months)
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Of the eight studies which compared groups:



Two studies found significant effects for spiritual wellbeing (using the QOL-BC and
QOL-CS spiritual wellbeing subscales, which are identical);279, 280 however, three
other studies using the same subscale (QOL-BC, QOL-CS and COH-QOL) found no
significant effect 282-284
One study found significant effects for sense of coherence (SOC)281
One study found a significant effect for hopelessness (BHS);169 one study failed to
find an effect for hopelessness (BHS) for patients,285 although there was a trend for
significance, and a significant effect was found for carers.
Overall, results of these studies are inconsistent, particularly as regards to spiritual
wellbeing. A patient-caregiver cognitive-behavioural problem-solving educational
intervention did not appear to impact spiritual wellbeing among patients with advanced
cancer,284 nor did a face-to-face and telephone psycho-educational support
intervention show an impact on spiritual wellbeing among newly diagnosed women with
early stage breast cancer transitioning from active treatment to survivorship care (in two
separate studies).282, 283 Interestingly, however, a cognitive-behavioural intervention for
women reporting cognitive impairments at least 18 months subsequent to chemotherapy
for early stage breast cancer did appear to have a significant impact on spiritual
wellbeing 280, as did a telephone- and couples-based health education intervention for
men with prostate cancer and their partners and/or carers.279
Further research is needed to more clearly understand the impact of psycho-educational
interventions on spiritual wellbeing. At this stage, the included studies vary too greatly in
their aims, modality (i.e. couples vs. individual interventions), techniques, and cancer
stage/type to effectively draw conclusions. Of note, spiritual wellbeing was not a primary
outcome measure in any of these studies. It is therefore perhaps unsurprising that
significant changes on these measures were not identified in three of these studies, which
did in fact find that the interventions had an impact on primary outcomes (e.g. overall
quality of life in two studies; and caregiver quality of life in another). It is also possible that
differences in coping styles between study populations might account for the differential
impact of interventions and further research might also explore this possibility.
The significant results found by two studies for spiritual wellbeing in this context are
noteworthy, and it is perhaps instructive to explore which components of these
interventions might be associated with such improvements. Firstly, it is unclear precisely
what components of the telephone-based health education intervention for men with
prostate cancer and their partners addressed spiritual wellbeing. Some of the
interventions reviewed in section 6.6 below (spiritual interventions) incorporate a more
explicitly articulated spiritual component, and therefore form a more rigorous base from
which to explore the impact of interventions on spiritual wellbeing. Secondly, the authors
of the study exploring the impact of a cognitive behavioural educational intervention for
self-reported cognitive deficits post-chemotherapy suggest that the significant impact on
spiritual wellbeing that they identified was perhaps due to a general improvement in
outlook attributable to the intervention. It might be hypothesised that interventions which
educate patients about the control and management of bothersome symptoms
promote a sense of coherence, and improvements in outlook such as those potentially
measured by this spiritual wellbeing scale. Future research might further explore this
hypothesis, and explore subsets of patients who might particularly benefit from such
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
116
interventions (e.g. patients reporting that they are experiencing difficulties in a particular
area, such as cognitive functioning).
A multidisciplinary educational program for women with newly diagnosed breast cancer
appeared to maintain sense of coherence for the intervention group in one study, in
contrast to decreased levels of sense of coherence reported by participants receiving
traditional follow-up care.281 This might be a promising target for future research.
Finally, a family-based intervention for men with prostate cancer and their
partners/carers did not appear to significantly impact hopelessness,285 although there
appeared to be a trend for significance, and there was a significant effect for spouses’
hopelessness scores. Interestingly, the same family-based intervention for women with
breast cancer and their partners/carers did significantly impact patient hopelessness at
three months,169 suggesting that such interventions may show promise for addressing
feelings of hopelessness.
On the basis of the studies eligible for inclusion in this review, the NHMRC levels of
evidence statement (below) has been completed to summarise the evidence pertaining
to the impact of psycho-educational interventions on levels of spiritual wellbeing in
cancer patients. Further research appears necessary to evaluate the impact of such
interventions on sense of coherence and hopelessness, and the statement has therefore
not been completed for these variables.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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6.2.3
NHMRC Evidence Statement
(If rating is not completely clear, use the space next to each criteria to note how the group came to a judgment. Part B of this document will
assist with the critical appraisal of individual studies included in the body of evidence)
Key question: What is the impact of psycho-educational interventions on spiritual wellbeing in cancer patients?
Evidence table ref:
1. Evidence base (number of studies, level of evidence and risk of bias in the included studies)
A – Five level II studies
All ‘strong’ quality
A
One or more level I studies with a low risk of bias or several level II studies with a low
B
One or two Level II studies with a low risk of bias or SR/several Level III studies with a
C
One or two Level III studies with a low risk of bias or Level I or II studies with a moderate
D
Level IV studies or Level I to III studies/SRs with a high risk of bias
2. Consistency (if only one study was available, rank this component as ‘not applicable’)
C – These studies should not be relied upon to assess the impact of
psycho-educational interventions on spiritual wellbeing, as this was
not their intent, but they suggest that psycho-educational
interventions may nevertheless impact spiritual wellbeing (two
studies found an impact; three did not) and further research is
A
All studies consistent
B
Most studies consistent and inconsistency can be explained
C
Some inconsistency, reflecting genuine uncertainty around question
D
Evidence is inconsistent
NA Not applicable (one study only)
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6.3
Meaning-centred interventions
Five studies evaluating meaning-centred interventions met the review criteria.
Interventions included life review, dignity therapy and meaning-centred psychotherapy
delivered both individually and in groups. Key characteristics of study methodology and
of the meaning-centred interventions are shown in Table 14 below.
6.3.1
Summary of meaning-centred interventions study characteristics
Study sample
Of the five identified studies in which meaning-centred interventions were evaluated (see
Table 14), two were from the USA, one was from Canada, one was from Japan, and one
was a multi-national study conducted in Australia, Canada and the USA.
The study sample sizes varied from as small as 24 to the largest study which included 326
participants. One study included only women with ovarian cancer, three studies included
patients with a variety of cancer types, and one study included individuals with mixed
diagnoses (with 95% of participants having been diagnosed with cancer, again with a
variety of cancer types). All patients had advanced disease.
Intervention
Two of the intervention studies involved therapist guided life review (i.e. life review and
dignity therapy), two involved individual psychotherapy focusing on meaning, and one
involved meaning-centred group psychotherapy.
Duration of the interventions varied from one week to three months.
All interventions were delivered face-to-face, predominantly by mental health
professionals (e.g. clinical psychologists, psychiatrists, psychologists, and/or psychology
doctoral students), although dignity therapy was sometimes also delivered by
experienced palliative care nurses. All interventions were manualised, with therapists
receiving training and ongoing supervision.
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Table 14
Intervention characteristics – Meaning-centred interventions (n = 5)
Title
Intervention
Studies with significant findings
Ando Intervention1
(2010) 213 Short-term life review
Japan Comparison condition(s)
Population
Methods
Results
Level of Evidence
Cancer types
Measures
Study type
Mixed
FACIT-Sp
Summary of results
Significant group x time interaction
effect for FACIT-Sp meaning subscale
(baseline mean cont 16.7, mean int
17.2; mean cont 13.8, mean int 25.5;
effect size 1.57). Significant increase int;
significant decrease cont.
18% lung; 13%
General support
stomach
Frequency and duration
Severity
Duration of each session
30-60 minutes
Number of sessions
2
SISC single-item
screening instrument
for suffering (0-6)
Advanced
Follow-up
Timing
Baseline [T0]
Patients lived
Post-intervention [T1]
about 28 days
Significant group x time interaction for
suffering (baseline mean cont 3.6,
mean int 3.4; mean cont 3.7, mean int
1.8). Significant decrease int; cont
change n.s.
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
Sample size
Total duration
after the short-
1 week
term life review
Delivery
Treatment status
Clinical psychologist
Palliative care
Group or individual
Mean age
Individual
65/64 (int/cont)
39
Mode
Gender
N (Cont1, T1)
Face-to-face
53% female
N (Int1, T0)
38
N (Int1, T1)
34
N (Cont1, T0)
34
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Title
Breitbart 215
(2010) Intervention
Population
Methods
Intervention1
Cancer types
Measures
USA psychotherapy
Mixed
Beck Hopelessness
19% prostate; 16%
Scale
Meaning-centred group
Comparison condition(s)
breast; 13%
Supportive psychotherapy
colorectal; 13%
Frequency and duration
Duration of each session
lung
Severity
90 minutes
Advanced
Number of sessions
Timing
8 (weekly)
Total duration
8 weeks
Delivery
Psychologist
Psychiatrist
Clinical psychologist
Group or individual
Not specified
Treatment status
Not specified
Mean age
FACIT-Sp
Schedule of Attitudes
toward Hastened
Death (SAHD)
Follow-up
Baseline [T0]
Post – 8 weeks [T1]
Post – 4 months [T2]
Sample size
N (Int1, T0)
60
49 began treatment
Gender
N (Int1, T1)
51% female
37
N (Cont1, T0)
Group
41 began treatment
Mode
N (Cont1, T1)
Face-to-face
18
Results
Summary of results
Repeated measures ANOVA found
significant group x time interaction for
spiritual wellbeing (p = 0.009),
Meaning/Peace (p = 0.03), and Faith
(p = 0.02). Matched t-test showed
significant increase int. for SWB, d = .72,
T0 2.06, T1 2.53, p = 0.0001; cont n.s., T0
2.07, T1 2.15; Meaning/Peace, d = .74,
T0 2.28, T1 2.79, p = 0.0001; cont n.s., T0
2.35, T1 2.53; and Faith, d = .4, T0 1.6, T1
1.99, p = 0.02; cont n.s., T0 1.51, T1 1.37.
Effect sizes larger at T2 for int group; n.s.
for control group.
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
Repeated measures ANOVA n.s., but
matched t-test approached
significance for hopelessness for int,
d = .31, T0 6.76, T1 5.81, p = 0.07; cont
n.s., T0 8.28, T1 7.72; also desire for
death, d = .29, T0 4.59, T1 3.70, p = 0.09;
cont n.s., T0 4.33, T1 4.5. Effect size at T2
significant for desire for death, d = .63,
T0 4.59, T2 3.64, p = 0.04.
Reviewers comments
Note attrition.
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Title
Breitbart 214
(2012) Intervention
Population
Methods
Intervention1
Cancer types
Measures
USA psychotherapy
Mixed
Beck Hopelessness
Individual meaning-centred
Comparison condition(s)
Therapeutic massage
Frequency and duration
Duration of each session
1 hour
26% breast; 16%
colon
FACIT-Sp
Severity
Follow-up
Advanced
Baseline [T0]
Timing
Post – 7 weeks [T1]
7 (weekly)
Time since
diagnosis
not specified
Total duration
Treatment status
7 weeks
Not specified
Delivery
Mean age
Number of sessions
Clinical psychologist or
54.4
psychology doctoral
Gender
students
60.5% female
Post – 4 months [T2]
Linear regression models with follow-up
score as the dependent variable,
treatment group as the predictor, and
baseline score as a covariate (i.e. an
analysis of covariance [ANCOVA]
model).
At the post-treatment assessment,
IMCP participants demonstrated
significantly greater improvement than
the control condition for the primary
outcomes of spiritual wellbeing
(b
= 0.39; P < .001, including both
components of spiritual wellbeing
(sense of meaning: b = 0.34; P = .003
and faith: b = 0.42; P < .03).
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong Participants in the IMCP arm improved
on the SWB total score (d=0.60)and the
Meaning(d=.68) and Faith subscales
(0.35).
Improvements no longer significantly
greater at T2.
No significant effect for hopelessness. Group or individual
Individual
Scale
Results
Summary of results
Mode
Face-to-face
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Title
Henry 216
(2010) Intervention
Population
Methods
Intervention1
Cancer types
Measures
Canada intervention
Ovarian
FACIT-Sp
Severity
McGill QoL
Usual care
Advanced
Follow-up
Frequency and duration
Timing
Baseline [T0]
Duration of each session
Mean of 45 days
Post – approx 3 months
Median 90 min
post diagnosis
[T1]
(range 75–120 min)
Treatment status
Post – approx 5 months
Number of sessions
Unclear
Meaning-Making
Comparison condition(s)
3-4
Total duration
Median two months (range
1–3 months)
All received
[T2]
Sample size
chemotherapy
N (Int1, T0)
subsequent to
15
diagnosis
N (Int1, T1)
Delivery
Mean age
12
Psychologist
55
N (Cont1, T0)
Group or individual
Gender
Individual
Women only
Mode
Results
Summary of results
A repeated measures ANCOVA was
conducted with baseline scores as
covariates.
Level of Evidence
Significant group effect for FACIT-Sp-12
meaning subscale (effect size at T1 .42,
mean cont 22.2, mean int 25.3; effect
size at T2 .41, mean cont 22.3, mean int
25.3; baseline mean cont 23.3, mean
int 23.3).
Level of evidence
Study type
Randomised
controlled trial
Level II
Quality
Strong
Trend for significance for time x group
interaction on MQOL existential
wellbeing subscale [F(1,21)=3.5, p=0.08]
- trend for higher int score at T2 [post
hoc F(1,21)=7.0, p=0.02] (effect size .56,
mean cont 7.2, mean int 8.2; baseline
mean cont 7.0, mean int 7.2).
Both significant when individual
counselling received at T2 entered as
covariate.
13
N (Cont1, T1)
12
Face-to-face
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123
Title
Intervention
Studies with no significant findings
Chochinov Intervention1
(2011) 276 Dignity therapy
Australia Comparison condition(s)
Canada Std palliative care (c1);
USA client-centred care (c2)
Frequency and duration
Population
Methods
Results
Level of Evidence
Diagnosis
Measures
Study type
95% cancer
FACIT-Sp
Cancer types
SISC single-item
Summary of results
Compared mean change scores
between pre- and post- measures
between group. No significant
differences were noted between the
three groups on SISC items, will to live
VAS, FACIT-Sp total or subscales.
Mixed
33% Gastroint.;
15% Lung; 9%
Duration of each session
Breast; 9%
30 min introductory session;
Genitourinary
60 min therapy session; 30
min review
Number of sessions
Severity
Terminal
3 (within 7-10 days)
Timing
Total duration
41% within 1 yr of-
7-10 days
diagnosis; 32% 1-3
Delivery
Psychologist
Psychiatrist
Palliative care nurse
Group or individual
Individual
Mode
years; median
survival 110 days
Treatment status
Palliative care
Mean age
65
Gender
screening instrument
for desire for death,
hopelessness and
suffering (0-6)
Visual analogue scale
- will to live
Follow-up
Baseline [T0]
According to post-intervention selfreport questionnaire, dignity therapy
was significantly better than clientcentred care at improving spiritual
wellbeing (int 3.27, cont 2.56, p = .006),
but differences in lessening suffering
and making life feel more meaningful
n.s. (alpha = 0.01 because of multiple
comparisons).
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
Post-intervention [T1]
Sample size
N (Int1, T0): 165
N (Int1, T1): 108
N (Cont1, T0): 140
N (Cont1, T1): 111
N (Cont2, T0): 136
N (Cont2, T1): 107
51% female
Face-to-face
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124
6.3.2
Results of meaning-centred interventions studies
All five studies were Level II randomised controlled trials, and conducted statistical
analyses comparing group outcomes (between group analyses). All five received a
rating of ‘strong’ for their quality. Of these studies, four found significant effects on at least
one outcome measure. The remaining study reported non-significant differences in mean
change scores in all relevant outcome measures between the intervention and control
groups. See results summarised in Table 15 below.
Table 15
Summary of results for meaning-centred interventions
Author,
year
Ando
(2010) 213
Breitbart
(2010) 215
Breitbart
(2012) 214
Significant intervention changes as
compared to control group
-FACIT-Sp Meaning/Peace (postintervention)
-Suffering (post-intervention)
- FACIT-Sp Meaning/Peace (postintervention [8 weeks], 4 months)
- FACIT-Sp total (post-intervention [8
weeks], 4 months)
- FACIT-Sp Faith (post-intervention [8
weeks], 4 months)
- FACIT-Sp Meaning/Peace (postintervention [7 weeks])
- FACIT-Sp total (post-intervention [7
weeks])
- FACIT-Sp Faith (post-intervention [7
weeks])
Chochinov
(2011) 276
Henry
(2010) 216
-FACIT-Sp Meaning/Peace (1 month postintervention [approx 3 months], 5 months)
- MQOL Existential wellbeing (5-month)
[trend for significance; significant when
counselling received at 5-months included
as covariate]
Non-significant changes
- Beck Hopelessness Scale
- Schedule of Attitudes Towards
Hastened Death
- FACIT-Sp Meaning/Peace (4
months)
- FACIT-Sp total (4 months)
- FACIT-Sp Faith (4 months)
- Beck Hopelessness Scale
- FACIT-Sp Meaning/Peace (postintervention)
- FACIT-Sp total (post-intervention)
- FACIT-Sp Faith (post-intervention)
- SISC desire for death
- SISC hopelessness
- SISC suffering
- Visual analogue scale - will to live
- MQOL Existential wellbeing (1month post-intervention [approx 3
months])
Of the five studies:

Four studies found significant effects for meaning/peace (FACIT-Sp)
post-intervention;213-216 two of these studies also found significant effects for overall
spiritual wellbeing (FACIT-Sp), and the faith subscale (FACIT-Sp) postintervention,214, 215 while the other two studies used only the meaning/peace
items; one study failed to find an effect for overall spiritual wellbeing, or the
meaning/peace and faith subscales (FACIT-Sp)276
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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



One study found significant effects for suffering (SISC item),213 although another
study failed to find an effect 276
Three studies measuring hopelessness failed to find an effect (two used the
BHS,214, 215 one the SISC item 276), although there was a trend for significance in
one study 215
Two studies measuring desire for death failed to find an effect (one used the
SAHD,215 one the SISC item 276)
One study measuring will to live (VAS) failed to find an effect.276
Of the three studies exploring the impact of the intervention over time:


One study found post-intervention improvements in spiritual wellbeing,
meaning/peace and faith were maintained at four months from baseline,215 while
one study did not 214
One study found improvements in meaning/peace at both one month and three
months post-intervention (i.e. approx three months and five months from
baseline);216 this study also found a trend for significance for the time by group
interaction for existential wellbeing (MQOL), such that the intervention group
scored higher than the control group on this measure at five month (but not
three-month) follow-up.
Overall, four of these five Level II studies 213-216 provide evidence suggesting that
meaning-centred interventions can significantly and positively impact meaning in
advanced cancer patients. It appears that such improvements can be obtained even
with relatively short-term interventions, and regardless of whether the intervention is
delivered individually or in groups. One of these studies additionally found evidence that
such interventions could alleviate suffering.213 There is less evidence exploring the extent
to which these gains are maintained over time, and so far results appear inconsistent,
with attrition in the context of palliative care research making this a difficult question to
answer rigorously.
The authors of the dignity therapy intervention – which did not find significant effects on
meaning and suffering – suggest floor effects (i.e. low baseline levels of distress in their
sample) were one possible explanation for their results,276 and it is possible that future
research targeting participants exhibiting higher levels of need/distress might find an
effect consistent with that found in other studies. It is also possible that the choice of
outcome measure influenced results in this study, and a measure with more sensitivity and
responsiveness to change is required. It is interesting to note that participants in the
intervention group did report on post-intervention questionnaires that the intervention
was better at improving their spiritual wellbeing than participants in the control group
receiving client-centred care, indicating that patients did find the intervention beneficial.
It does not appear that meaning-centred interventions had an impact on hopelessness,
desire for death, or will to live.
On the basis of the included studies, the NHMRC levels of evidence statement (below)
has been completed to summarise the evidence pertaining to the impact of meaningcentred interventions on levels of meaning/peace in advanced cancer patients.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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6.3.3
NHMRC Evidence Statement
(If rating is not completely clear, use the space next to each criteria to note how the group came to a judgment. Part B of this document will
assist with the critical appraisal of individual studies included in the body of evidence)
Key question: What is the impact of meaning-centred interventions on meaning/peace in advanced cancer patients?
Evidence table ref:
1. Evidence base (number of studies, level of evidence and risk of bias in the included studies)
A – Five level II studies
All ‘strong’ quality.
A
One or more level I studies with a low risk of bias or several level II studies with a low
B
One or two Level II studies with a low risk of bias or SR/several Level III studies with a
C
One or two Level III studies with a low risk of bias or Level I or II studies with a moderate
D
Level IV studies or Level I to III studies/SRs with a high risk of bias
2. Consistency (if only one study was available, rank this component as ‘not applicable’)
B – Four of five RCTs reported significant effects of meaning-centred
interventions on meaning/peace as measured by the FACIT-Sp. The
single study reporting no impact of Dignity Therapy on
meaning/peace is possibly due to a floor effect at baseline.
A
All studies consistent
B
Most studies consistent and inconsistency can be explained
C
Some inconsistency, reflecting genuine uncertainty around question
D
Evidence is inconsistent
NA Not applicable (one study only)
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6.4
Supportive-expressive interventions
Five studies evaluating supportive-expressive interventions met the review criteria.
Interventions included individually-delivered telephone therapy, individually delivered
forgiveness therapy, face-to-face and telephone delivered support groups, and an
internet-based peer support group. Key characteristics of study methodology and of the
supportive-expressive interventions are shown in Table 16 below.
6.4.1 Summary of supportive-expressive intervention study characteristics
Study sample
All five of the identified studies in which supportive-expressive interventions were
evaluated (see Table 16) were from the USA.
The study sample sizes for these studies were generally small, varying from as small as 20
to the largest study which included 78 participants.
Three of the studies included only women with breast cancer, one included men with
prostate cancer and their partners and/or carers, and one included individuals with
mixed diagnoses (not further specified). Patients in two breast cancer studies had early
stage disease, one study included only individuals with advanced disease, one included
mixed stages, and one did not specify. Patients in three studies were newly diagnosed,
patients in one study were on average more than three years post diagnosis, and time
since diagnosis was unspecified in one study.
Intervention
The intervention studies were varied in nature and modality. Three studies involved
support groups. One of these was conducted face-to-face, one by telephone, and one
involved peer-to-peer interactions over the internet. One study involved individually
delivered forgiveness therapy, and the last study involved individually-delivered
telephone therapy for couples (who received individual phone calls).
Duration of the interventions lasted from between one month to two months in four
studies, and was unspecified in the internet study. One of the interventions targeted both
patients and their partners or caregivers, while the remaining four studies targeted only
individuals with a cancer diagnosis.
Three of the interventions were delivered by nurses and/or social workers (one also
involving a psychotherapist and cancer survivor as co-facilitators), one by a group
therapist, and one was a peer-to-peer only internet intervention. Three interventions were
manualised, one did not specify manualisation status, and the internet peer-to-peer
support group by its nature could not be manualised.
Control groups included a waitlist control, an internet-based educational intervention,
those who elected not to participate in the support group, and usual psychosocial care.
For one study, however, interpersonal telephone counselling was compared to an a
health education control group (for men with prostate cancer and their partners/carers),
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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and a significant effect was found for the health education group, relative to the
interpersonal telephone counselling. It should thus be noted in interpretation of results
that this intervention is not evaluated relative to standard care.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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Table 16
Intervention characteristics – Supportive-expressive interventions (n = 5)
Title
Intervention
Population
Methods
Studies with significant findings in favour of the intervention group
Hansen Cancer types
Intervention1
Measures
(2009) 286 Forgiveness therapy
Mixed
Herth Hope Index
USA Comparison condition(s)
Waitlist control (weekly 15
min supportive phone calls),
Not specified
Severity
who subsequently
Advanced
underwent intervention and
Timing
4-week follow-up
Frequency and duration
Duration of each session
Not specified
Treatment status
Follow-up
Baseline [T0]
Post – 1 month [T1]
Post – 2 months [T2]
Sample size
N (Int1, T0)
60 minutes
Palliative care
10
Number of sessions
Mean age
N (Cont1, T0)
4 (weekly)
73
Total duration
Gender
4 weeks
Delivery
Social worker
Group or individual
90% female
10
Results
Level of Evidence
Summary of results
Comparing change scores from T0 to
T1 showed int. group significantly
greater changes in hope, int. 7.00,
cont. -0.2, t = 4.63, p < .001, d = 1.71.
Comparing cont. gp change scores
from T1 to T2 [after cont. group
received intervention] with their own
change scores from T0 to T1 showed
significantly greater changes in hope
T1 to T2, T1 to T2 11.7, T0 to T1 -0.2, t =
5.62, p < .001, d = 1.68. No significant
differences found when comparing
change score for int. group from T0 to
T1 with cont. group change score from
T1 to T2, or int. group change from T0 to
T2 with cont. group change score from
T1 to T2.
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Good
Int. T0 31.7, T1 38.7, T2 38.4
Cont. T0 27.9, T1 27.7, T2 39.40
Reviewers comments
Note inappropriate use of one-tailed ttests; McGill QOL used, but subscale
results not reported.
Individual
Mode
Face-to-face
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Title
Intervention
Studies with no significant findings
Badger Intervention1
(2011) 279* Telephone interpersonal
counselling (TIP-C)
USA Intervention2
Health education attention
condition (HEAC)
Frequency and duration
Duration of each session
Approx 1 hr assessment, 30
mins thereafter
Population
Methods
Results
Level of Evidence
Cancer types
Measures
Summary of results
Study type
Prostate
Quality of Life - Breast
Cancer
(QOL-BC), items
deemed applicable
across cancer types
No significant changes over time for
TIP-C condition.
Randomised
controlled trial
Significant improvement over time in
spiritual wellbeing for HEAC
[as reported under ‘psychoeducational interventions].
Level of evidence
Strong Severity
Mixed
Majority did not
know
Timing
Time since
diagnosis
Number of sessions
8 (weekly) for survivors; 4
(fortnightly) for partners
Mean 187 weeks
(i.e. 3.6 years)
post-diagnosis
Total duration
8 weeks
Treatment status
Delivery
Nurse or social worker
TIP-C
Research assistants
HEAC
Mixed
Unclear how
many were on
treatment at time
of intervention
Mean age
Group or individual
67
Couple (separate calls)
Gender
Mode
Men only
Telephone Follow-up
Baseline [T0]
Level II
Quality
Post – 8 weeks [T1]
Post – 16 weeks [T2]
Sample Size N (Int1, T0)
36
N (Int1, T1)
36
N (Int2, T0)
35
N (Int2, T1)
34 Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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Title
Coward 287
(2003) Intervention
Population
Methods
Intervention1
Cancer types
Measures
USA self-transcendence
Breast
Purpose in Life (PIL)
perspectives and
Severity
Self Transcendence
behaviours
Not specified
Comparison condition(s)
Timing
Support group promoting
Non participants
Frequency and duration
Mean 2.9 months
/ 3.7 months post-
Scale (STS)
Follow-up
Baseline [T0]
Post – 2-3 months [T1]
Duration of each session
diagnosis
90 minutes
(int/cont)
Number of sessions
Treatment status
8 (weekly)
Mixed
Total duration
Majority (65-73%)
8 weeks
chemo; some (27-
N (Int1, T1)
35%) radio
22
Mean age
N (Cont1, T0)
46.1 / 51.8
17
int/cont
N (Cont1, T1)
Gender
17
Delivery
Oncology clinical nurse
specialist
Psychotherapist
Breast cancer survivor
Post – 14 months [T2]
Sample size
N (Int1, T0)
24
Results
Summary of results
No significant group by time
interactions.
t-tests show cont gp had significantly
higher self-transcendence at baseline
(cont 83.1, int 73.9, p = 0.03), but
difference was n.s. T1 (cont 82.5, int
80.6). Cont group also had significantly
higher self-transcendence T2 (cont
87.6, int 80.9, p = 0.04).
Level of Evidence
Study type
Non-randomised,
experimental trial
Level of evidence
Level III-2
Quality
Good
Differences between groups for
purpose in life were n.s. at baseline
(cont 115.2, int 107.4) and T1, but cont
group had significantly higher purpose
in life T2(cont 118.1, int 109.7, p = 0.04).
Reviewers comments
Nonparticipants expressed a
preference not to take part in a
support group; significant
improvements over time in STS in both
groups.
Women only
Group or individual
Group
Mode
Face-to-face
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Title
Salzer 288
(2010) Intervention
Population
Methods
Intervention1
Cancer types
Measures
USA condition
Breast
Herth Hope Index
Severity
Follow-up
Internet-based educational
Early
Baseline [T0]
control
Timing
4 months [T1]
Frequency and duration
Within 12 months
12 months [T2]
Not specified
of diagnosis
Internet peer support
Comparison condition(s)
Delivery
Peer to peer
Group or individual
Group
Mode
Internet
Treatment status
Unclear what
proportion of
participants were
on treatment
during
intervention
Age
Sample size
N (Int1, T0)
Results
Summary of results
No significant differences on HHI at
baseline, and no significant
Time*Condition interaction. However,
both the control and experimental
groups deteriorated between baseline
and 12-months (d=1.93; p=0.02; t=2.39;
df=76; es=0.43 and d=3.45; p<0.0001;
t=5.75; df=76; es=0.77, respectively),
with the control group having
marginally higher scores at 12 months
than the experimental group (d=1.95;
p=0.06; t=1.88; df=76; es=0.47).
51
Reviewer comments
N (Cont1, T0)
Note that there was a pattern of results
in the direction contrary to hypotheses,
including this result for hope; however
participants reported that they felt they
had benefited from the intervention.
27
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Good
40% under 50
Gender
Women only
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Title
Intervention
Population
Studies with significant findings in favour of the control group
Heiney
Intervention1
Cancer types
(2003) 289
Therapeutic group by
Breast
USA telephone conference call
Severity
Comparison condition(s)
Early
Usual psychosocial care
Methods
Results
Level of Evidence
Measures
Summary of results
Baseline differences physical wellbeing
and mood (overall, tension/anxiety,
and anger/hostility), such that int. gp
worse QoL and mood
Study type
When controlling for tension/anxiety,
there was a significant gp x time
interaction for spiritual wellbeing (F =
4.28, p = .02). Contrary to expectations,
this was higher for cont. gp.
Level of evidence
Quality of Life - Breast
Cancer (QOL-BC)
Follow-up
Baseline [T0]
Frequency and duration
Timing
Duration of each session
Mean 151 days
90 minutes
post-diagnosis
Post – 4 months [T2]
Number of sessions
Treatment status
Sample size
int.
6 (weekly)
Mixed
N (Int1, T0)
cont T0 7.4, T1 7.1, T2 7.9
Total duration
83% on treatment;
35
Reviewer comments
6 weeks
17% no adjunct
N (Int1, T1)
Note that T2 is sometimes defined in the
text as 4 months from baseline, and
sometimes as 6 months from baseline.
Delivery
Group therapist
Group or individual
Group
Mode
treatment
Mean age
Post – 6 weeks [T1]
33
controlled trial
Level II
Quality
Strong
T0 7.6, T1 7.7, T2 7.4
N (Cont1, T0)
50
33
Gender
N (Cont1, T1)
Women only
Spiritual wellbeing:
Randomised
33
Telephone
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134
6.4.2
Results of supportive-expressive interventions studies
Four of these 5 studies were Level II randomised controlled trials. The quality of two of
these studies was rated as ‘strong’, while the other two studies were rated as ‘good’. One
study was a non-randomised experimental trial where participants were allocated to
groups in accordance with their own expressed preferences, providing a lower level of
evidence (Level III-2). The quality of this study was assessed as ‘good’.
All five studies conducted statistical analyses comparing group outcomes (between
group analyses). Only one found a significant effect in favour of the intervention group.
Contrary to hypotheses, one study found a significant effect in favour of the control
group, and another found a trend to significance on the one measure in their study
relevant to this review, in the context of a pattern of other significant results that favoured
the control group. The remaining two studies did not find a significant between groups
effect of the intervention. See results summarised in Table 17 below. In considering the
study outcomes, it is important to note the overall small sample sizes.
Table 17
Author,
year
Badger
(2011)
Summary of results for supportive-expressive interventions
Significant intervention
changes as compared to
control group (in favour of
intervention group)
279
Coward
(2003)
287
Hansen
(2009)
286
Non-significant changes
- QoL-BC Spiritual WellBeing (post-intervention [8
weeks], 4 months)
Group by time interaction
not significant.
- Self Transcendence Scale
(post-intervention [2-3
months], 14 months)
- Purpose in Life (postintervention [2-3 months], 14
months)
[Note self-transcendence
pre-intervention and 1-year
post-intervention higher for
control group]
- Herth Hope Index (postintervention [1 month], 2
months)
Heiney
(2003)
- QoL-BC Spiritual WellBeing (post-intervention [6
weeks], 4 months)
[NB: Not consistently
reported within paper – 4
months or 6 months]
289
Salzer
(2010)
288
Significant intervention
changes as compared to
control group (in favour of
control group)
- Herth Hope Index (4
months and 12 months from
baseline)
But note trend for
significance in direction
contrary to hypotheses, as
part of a pattern of results in
favour of the control group
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135
Of the 5 studies:




One study found a significant effect on hope (HHI) immediately postintervention;286 however, another study using the same measure found a trend for
significance in favour of the control group, who reported higher hope scores 12
months from baseline 288
One study found a significant effect on spiritual wellbeing (QOL-BC) postintervention and at four months;289 note that, contrary to predictions, this effect
also favoured the control group
One study found no significant effect on spiritual wellbeing (QOL-BC) 279
One study found no significant effect on self-transcendence and purpose in life,
as assessed by the non-significant group * time interaction.287
At this stage, there is too much variation between the included studies in terms of their
aims, modalities (i.e. telephone vs. internet vs. face to face; professionally delivered vs.
peer support), and follow up assessment timeframes (i.e. immediately post-intervention
vs. one year post-intervention) to reliably draw any conclusions about the impact of
supportive-expressive therapies in terms of their impact on variables such as hope,
spiritual wellbeing, self-transcendence and purpose in life. It is also possible that
differences in coping styles between study populations might account for the differential
impact of interventions and further research might also explore this possibility.
The two studies with results favouring the control group (one significant, and one with a
trend towards significance in the context of a pattern of other significant results all
pointing in this unexpected direction 288, 289) raise the possibility that interventions
targeting early stage cancer patients might potentially have detrimental effects
(e.g. if sharing of negative emotions via peer support is not facilitator led, and potentially
magnifies rather than alleviates distress). Future research and clinical practice should be
alert to the possibility that such interventions may not be beneficial for particular
subgroups of patients and in particular contexts. Alternatively, the authors of one of these
studies suggest perhaps compensatory rivalry explains their unexpected results.288, 289 It
should be noted, however, that the participants in the internet support group study
themselves reported that they felt that they had benefited from the intervention,288, 289
and that the actual differences in scores were small to negligible in magnitude. Such
results should also be interpreted within the context of a large body of evidence for the
generally positive impact of supportive-expressive interventions on other outcomes.290
It is worthy of comment that the one supportive-expressive study that did find an effect
(i.e. the evaluation of forgiveness therapy286) targeted patients with advanced cancer,
while the studies that failed to find an effect or found negative effects were conducted
with newly diagnosed early stage patients, and/or groups of survivors. Furthermore, this
study targeted participants who could identify an issue that would require resolution as
part of the forgiveness therapy intervention, meaning that potentially there was more
room for improvement in outcomes than in, for example, the study targeting prostate
cancer survivors and their partners some time after diagnosis, when levels of distress were
relatively low at baseline.279
Forgiveness therapy also had a more explicitly spiritually based content, and was
theoretically expected to impact on the outcome variables measured in the study. The
support group intervention promoting self-transcendence perspectives and behaviours
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
136
similarly linked its content explicitly with the outcome variables chosen to evaluate the
intervention, and it is possible that the choice of design (i.e. a non-randomised
experimental trial where participant preferences influenced allocation) contributed to
the baseline differences in demographic and outcome measures between groups,
which may have confounded results.287
Results of both psycho-educational and supportive-expressive intervention studies
included in this review have yielded some surprising significant results on the City of Hope
spiritual wellbeing scales (QOL-BC, QOL-CS, and COH-QOL), and these results suggest
that perhaps further research might explore with qualitative research the meaning of
these items for patients, and the components of the intervention that may have
contributed to these effects.
The NHMRC Evidence Statement for this question has been completed in the table
below.
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137
6.4.3
NHMRC Evidence Statement
(If rating is not completely clear, use the space next to each criteria to note how the group came to a judgment. Part B of this document will
assist with the critical appraisal of individual studies included in the body of evidence)
Key question: What is the impact of supportive-expressive interventions on hope, self-transcendence, purpose in life, and spiritual wellbeing?
Evidence table ref:
1. Evidence base (number of studies, level of evidence and risk of bias in the included studies)
Hope - C - 2 Level II studies (small samples & therefore potential bias),
quality ‘good’
Self-transcendence & purpose in life - D - 1 Level III-2 study, quality
‘good’
Spiritual wellbeing - C - 2 Level II studies (small samples & therefore
A
One or more level I studies with a low risk of bias or several level II studies with a low
B
One or two Level II studies with a low risk of bias or SR/several Level III studies with a
C
One or two Level III studies with a low risk of bias or Level I or II studies with a moderate
D
Level IV studies or Level I to III studies/SRs with a high risk of bias
Hope – C. One study reported a significant increase in hope for the
supportive-expressive intervention group, while another reported a
trend in favour of the control group.
Self-transcendence & purpose in life – N/A
Spiritual wellbeing – C. One study reported a significant increase in
spiritual wellbeing in the control group, while another reported no
effect of the intervention on spiritual wellbeing.
A
All studies consistent
B
Most studies consistent and inconsistency can be explained
C
Some inconsistency, reflecting genuine uncertainty around question
D
Evidence is inconsistent
2. Consistency (if only one study was available, rank this component as ‘not applicable’)
NA Not applicable (one study only)
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6.5
Stress-reduction interventions, including yoga,
mindfulness, meditation, and cognitive-behavioural
Ten studies evaluating stress-reduction interventions met the review criteria. Interventions
included yoga, mindfulness-based stress reduction, cognitive-behavioural stress
management (including training in relaxation techniques), and transcendental
meditation. Key characteristics of study methodology and of the stress-reduction
interventions are shown in Table 18 below.
6.5.1
Summary of stress-reduction interventions study characteristics
Study sample
Nine of the 10 identified studies in which stress reduction interventions were evaluated
(see Table 18) were from the USA and one was from Canada.
The study sample sizes for these studies were generally moderate, varying from as small as
27 to the largest study which included 191 participants.
Eight of the studies included only women with breast cancer, one included a population
with mixed diagnoses, although over half of participants had been diagnosed with
breast cancer, and one included only men with prostate cancer. Participants in four
studies had early stage disease, while the other six studies recruited patients with mixed
disease severity. In all six cases, however, the majority of participants had early stage
disease.
Average time since diagnosis was not specified in one study, was one-two years in eight
studies, and was over five years in the final study.
Intervention
The intervention studies varied in nature and modality. Three studies involved yoga, three
studies used a cognitive-behavioural stress management intervention (incorporating
relaxation training), three studies involved mindfulness-based stress reduction
(incorporating a yoga component), and one study transcendental meditation. Eight of
the interventions were delivered in groups, one was delivered individually, and one used
both group and individual delivery.
Duration of the interventions lasted from between six weeks to 12 weeks, although one
study indicated only that seven sessions were conducted, without specifying the total
duration of the intervention. The three mindfulness-based stress reduction interventions
also incorporated a short intensive silent retreat into their program, and one study also
offered follow-up booster sessions to participants.
Interventions in four studies were delivered by yoga instructors (supplemented by a
clinical psychologist and a nurse in one mindfulness-based stress reduction program
incorporating a yoga component). In four studies, clinical psychologists and/or graduate
clinical psychology students delivered the intervention. In one study the mindfulness-
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
139
based stress reduction intervention was delivered by mental health clinicians who were
meditation practitioners, in one study the intervention was delivered by qualified
transcendental meditation instructors.
Six studies used waitlist controls, assessment only controls or usual care (supplemented in
one study with supportive phone calls), and the control group in one study was a healing
arts group, with participation in each program dependent on participant choice. No
significant impact of the healing arts intervention was found, in contrast with the
significant effect found for the mindfulness-based stress reduction program. The
remaining three studies compared the intervention to a condensed half-day stress
reduction seminar in which similar information was provided, but at a much lower dose,
and without the group support elements of the 10-week intervention.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
140
Table 18
Intervention characteristics – Stress-reduction interventions (n = 10)
Title
Intervention
Studies with significant findings
Antoni
Intervention1
(2001) 221
Cognitive-behavioural
USA
stress management
Population
Methods
Results
Level of Evidence
Cancer types
Measures
Study type
Breast
Benefit Finding Scale
intervention
Severity
Follow-up
Comparison condition(s)
Early
Baseline [T0]
Condensed 5-6 hr stress
Timing
Post – 3 months [T1]
Newly diagnosed
Post – 6 months [T2]
All had received
Post – 12 months [T3]
136
Summary of results
Reports of benefits from having had
breast cancer did not differ at T0. A
significant interaction was found
between condition and repeated
measurement, F(3, 294) = 5.53, p < .002,
η2 = .05. In the intervention condition,
reports of benefit increased between
T0 and T1, F(1,46) = 31.79, p < .001, η2 =
.41, and remained significantly higher
at T2 (η2 = .31) and T3 (η2 = .28). Cont.
gp reports of benefits did not differ
significantly. Intervention participants
had higher benefit than controls T1,
p<.04, η2 = .05, marginally higher T2,
p=.07, η2 = .03, but difference had
faded by T3.
N (Int1, T1)
Int.
47
Con. T0 3.13, T1 3.18, T2 3.13, T3 3.21
N (Cont1, T1)
Reviewers comments
A subsample underwent physiological
assessments, and significant
associations between benefit finding
and physiological measures are
reported in linked publications.
reduction seminar
Frequency and duration
Duration of each session
2 hours
Number of sessions
10 (weekly)
Total duration
surgery within the
last 8 weeks
Treatment status
Mixed
10 wks
Majority received
Delivery
radiotherapy
Postdoctoral fellows and
clin. psych grad students
Group or individual
Group
Mode
chemo and/or
Mean age
50
Sample size
N (T0)
53
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
T0 3.08, T1 3.59, T2 3.49, T3 3.47
Gender
Women only
Face-to-face
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Title
Antoni
(2006) 291
Intervention
Population
Methods
Intervention1
Cancer types
Measures
USA
stress management
Breast
Benefit Finding Scale
intervention
Severity
Follow-up
Comparison condition(s)
Non-metastatic
Baseline [T0]
Condensed stress reduction
Majority early
seminar (5-6 hours)
stage
Frequency and duration
Timing
Duration of each session
Newly diagnosed
2 hours
All had received
Number of sessions
surgery within the
10 (weekly)
last 8 weeks
Total duration
Treatment status
10 wks
Mixed
Delivery
Majority received
Postdoctoral fellows and
chemo and/or
advanced grad students in
radiotherapy
clinical psychology
Mean age
Group or individual
50-51
Group
Gender
Cognitive-behavioural
Mode
Post – 6 months [T1]
Post – 12 months [T2]
Sample size
N (Int1, T0)
92
N (Int1, T1)
Results
Summary of results
Latent growth curve modelling showed
that – when the last time point was
allowed to be freely estimated –
condition had a significant relation to
slope, indicating differential change.
Int.
T0 3.16, T1 3.51, T2 3.59
Cont. T0 3.32, T1 3.40, T2 3.42
Group effect on slope z = 3.31, p = .001,
d = 0.82.
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
Reviewers comments
Note that this sample were reportedly
more distressed at baseline than Antoni
(2001)
74
N (Cont1, T0)
107
N (Cont1, T1)
85
Women only
Face-to-face
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Title
Chandwani
(2010) 220
USA
Intervention
Population
Methods
Intervention1
Cancer types
Measures
Breast
Benefit Finding Scale
Severity
Follow-up
Mixed
Baseline [T1]
Yoga
Comparison condition(s)
Waitlist control
Frequency and duration
Duration of each session
60 minutes
Number of sessions
Maximum of 12
74% early; 26%
advanced
Timing
Not specified
Post – 7 weeks [T2]
Post – 10 weeks [T3]
Post – 4.5 months [T4]
Sample size
(1-2 each week)
Treatment status
Total duration
On treatment
6 weeks
Radiotherapy
Delivery
Mean age
30
Yoga instructor
51/54 (int/cont)
N (Int1, T1)
Group or individual
Gender
Individual
Women only
Sometimes groups of 2
Mode
Face-to-face
N
71
N (Int1, T0)
Results
Summary of results
GLM to examine group differences at
each assessment point with covariates
including age, stage, time since
diagnosis, type of surgery, prior
chemotherapy, and baseline score.
Significant differences in benefit finding
found T4 (int 52.8, cont 47.3, d = .51, p =
.01; change from baseline: int 8.6; cont
2.3), but no significant difference at T2
or T3.
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
Reviewers comments
Note that the int group also reported
more intrusive thoughts than the cont
group at T3, and there was a significant
positive correlation between intrusive
thoughts at T3 and benefit finding at T4
(r = .36, p = .011)
27
N (Cont1, T0)
31
N (Cont1, T1)
31
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Title
Danhauer
(2009) 292
USA
Intervention
Population
Methods
Intervention1
Cancer types
Measures
Breast
FACIT-Sp
Severity
Follow-up
Mixed
Baseline [T0]
80% early; 20%
Post – 10 weeks [T1]
Restorative yoga
Comparison condition(s)
Waitlist control
Frequency and duration
Duration of each session
75 minutes
Number of sessions
10 (weekly)
Total duration
10 weeks
Delivery
Yoga instructor
Group or individual
Group
Mode
Face-to-face
advanced
Timing
Mean 24.4 months
/ 22.8 months
post-diagnosis
Treatment status
Mixed
34%
chemotherapy
and/or
Sample size
N (Int1, T0)
22
Results
Summary of results
Significant group effect for the FACITSp peace/meaning subscale (p =
0.0009) favouring the int gp versus cont
(T1 int. 26, cont. 21.5; T0 int. 23.3,
cont. 23.2).
"All p-values are based on analyses
adjusted for baseline value of each
variable."
However, baseline by group interaction
for FACIT-SP peace/meaning subscale
was not significant.
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Good
N (Int1, T1)
13
N (Cont1, T0)
22
N (Cont1, T1)
14
radiotherapy
Mean age
55.8
Gender
Women only
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Title
Garland *
(2007) 293
Canada
Intervention
Population
Methods
Intervention1
Cancer types
Measures
Mixed
FACIT-Sp
Healing arts (HA)
Intervention2
Over half breast
Mindfulness-based stress
cancer
reduction (MBSR)
Frequency and duration
Duration of each session
90 mins (MBSR), 2 hrs (HA)
Number of sessions
8 + 3 hr retreat (MBSR)
Severity
Mixed
Follow-up
Baseline [T0]
Post – 6-8 weeks [T1]
Median II (I - IV)
Sample size
Timing
N (Int1, T0)
Mean 2.5 / 1.5
51 (HA)
years post-
N (Int1, T1)
diagnosis
44 (HA)
(HA / MBSR)
N (Int2, T0)
8 wks (MBSR), 6 wks (HA)
Treatment status
79 (MBSR)
Delivery
Outpatients, not
N (Int2, T1)
further specified
60 (MBSR)
6 (HA)
Total duration
Yoga instructor, nurse,
clinical psychologist (MBSR)
Mean age
Clinical psychologist, social
53 / 52
worker, creative artists ( HA)
(HA / MSBR)
Group or individual
Gender
Group
91% female
Results
Summary of results
There was a group by time interaction
on the FACIT-SP, F=4.881, p = 0.029),
such that scores in MBSR group
increased, but those in HA remained
relatively stable.
MBSR pre 28.43, post 32.10
HA pre 29.7, post 30.52
Reviewers comments
Age, gender, marital status, education
and duration of illness, as well as
psychological measures, were not
significantly different at pre-test,
despite lack of randomisation.
Level of Evidence
Study type
Non-randomised,
experimental trial
Level of evidence
Level III-2
Quality
Good
Mode
Face-to-face
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Title
Henderson
(2012) 229
Intervention
Population
Methods
Intervention1
Cancer types
Measures
USA
reduction
Breast
FACIT-Sp
Severity
Sense of Coherence
Mindfulness-based stress
Comparison condition(s)
Usual care with monthly
Early
supportive phone calls
Timing
(UC); gp nutrition
education (NEP)
55% 0-12 months
Frequency and duration
40% > 12 months;
post-diagnosis;
Duration of each session
5% unknown
2.5 - 3.5 hours
Treatment status
Number of sessions
Mixed
7 plus 7.5 hour retreat; and
3 booster sessions
Total duration
8 weeks plus 3 monthly
Follow-up
Baseline [T0]
Post – 4 months [T1]
Post – 12 months [T2]
Post – 24 months [T3]
Sample size
Majority off
N
treatment
180
Mean age
N (Int1, T1)
follow-up sessions
50
Delivery
Gender
Mental health clinician
Women only
meditation practitioners
(SOC)
53
N (Cont1, T1)
Results
Summary of results
Linear regression analyses including
covariates (not specified). Reports
adjusted means, all p ≤ .05. At 4months, int. sig greater overall
improvement on FACIT-SP, T0 7.8, T1 8.9,
change from baseline differs from 0, T1
value significantly different to UC and
NEP values; UC T0 7.7, T1 7.6, NEP T0 8.0,
T1 7.3. Change from baseline remained
sig different from 0 for int. gp T2 & T3, T2
8.8, T3 8.6). T2 value sig different from
NEP value, 7.6, but not UC, 7.9. T3 value
not sig different from NEP value or UC
value, both 8.1. Meaningfulness
subscale of SOC significantly higher
than UC and NEP at T1, int. 46.8, UC
43.7, NEP 43.5. Note UC and NEP
declined significantly from baseline
values, but not int. group, T0 int. 45.4,
UC 45.5, NEP 45.2. At T2, int. group
scored significantly lower than UC on
SOC comprehensibility scale, int. 51.2,
UC 55.5. No other sig differences on this
subscale.
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
58
N (Cont2, T1)
52
Group or individual
Group
Mode
Face-to-face
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Title
Moadel
(2007) 294
USA
Intervention
Population
Methods
Intervention1
Cancer types
Measures
Breast
FACIT-Sp
Severity
Follow-up
Mixed
Baseline [T0]
63% early
During – 1 month [T1]
90 mins
Timing
Post – 3 months [T2]
Number of sessions
Mean 1.09 years
Post – 6 months [T3]
12 (weekly) – plus daily
post- diagnosis
practice
Treatment status
Total duration
Mixed
108
29% on treatment
N (Int1, T1)
at baseline
84
Certified yoga instructor
Mean age
N (Cont1, T0)
Group or individual
54.8
Group
Gender
Hatha yoga classes
Comparison condition(s)
Waitlist controls
Frequency and duration
Duration of each session
12 wks
Delivery
Mode
Sample size
N (Int1, T0)
Results
Summary of results
Primary analyses based on entire
sample found study arm did not
predict T2 spiritual wellbeing, after
controlling for baseline values and
covariates (i.e. education and antioestrogen therapy).
Secondary regression analyses were
conducted on a subsample (n = 71) of
patients not on chemotherapy. In this
sample, study arm was predictive of T2
spiritual wellbeing (t = -2.67; P<.009).
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
Reviewers comments
Note that although data were
collected at four time points, only data
from T0 and T2 are presented.
56
N (Cont1, T1)
44
Women only
Face-to-face
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Title
Penedo
(2006) 222
Intervention
Population
Methods
Intervention1
Cancer types
Measures
USA
stress management
Prostate
Benefit Finding Scale
intervention
Severity
Follow-up
Comparison condition(s)
Early
Baseline [T0]
Half-day educational
Timing
Post – 12-13 wks [T1]
Mean 15 months
Sample size
Cognitive-behavioural
seminar
Frequency and duration
Duration of each session
2 hrs
Number of sessions
Treatment status
133
Post hoc analyses showed intervention
participants experienced significant
increases in benefit finding (t = 2.65,
p< .01), while participants in the control
condition did not change significantly.
Not specified
N (Int1, T1)
Int.
107
Cont. T0 90.52, T1 89.56
post- diagnosis
N (Int1, T0)
10 (weekly)
On average 10.1
Total duration
months post-
N (Cont1, T0)
treatment
100
Mean age
N (Cont1, T1)
10 wks
Delivery
Master’s level clinical
Results
Summary of results
Experimental condition was a
significant predictor of postintervention benefit-finding in linear
regression analyses controlling for
income, ethnicity, years of education
and baseline values (F for ΔR2 =5.52,
p < .05).
65.1
health psych students or
Gender
doctoral-level licensed
Men only
84
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
T0 94.14, T1 99.05
Reviewers comments
Note the Benefit Finding Scale is here
described as the ‘Positive Contributions
Scale’, and a 29-item version of the
scale was used, as opposed to the 17item version used by Antoni (2001,
2006).
clinical psychologists
Group or individual
Group
Mode
Face-to-face
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Title
WitekJanusek
(2008) 295
USA
Intervention
Population
Methods
Intervention1
Cancer types
Measures
Breast
Quality of Life Index –
Mindfulness based stress
reduction
Comparison condition(s)
Severity
Assessment only control
Early
group
Timing
Frequency and duration
Newly diagnosed
Duration of each session
Treatment status
2.5 hours
Number of sessions
8 (weekly) + one full day
Mixed
83% received
Cancer Version III
Follow-up
Baseline [T0]
During – 1 month [T1]
Post – 2 months [T2]
Post – 3 months [T3]
N (Int1, T0)
following surgery
44
8 wks
Mean age
N (Int1, T1)
Delivery
54-55
Clinical psychologist
Gender
Group or individual
Women only
Total duration
Group
One-way ANOVA showed significant
group differences at T2 (immediately
post-intervention, p = 0.004; 98% CI =
3.43-4.57) and T3 (p = 0.001; 98% CI =
2.99 – 4.01).
Level of Evidence
Study type
Non-randomised,
experimental trial
Level of evidence
Level III-2
Quality
Strong
Sample size
radiation therapy
session
Results
Summary of results
Significant interaction of treatment by
time such that women in the MBSR
group reported more satisfaction over
time in psychological-spiritual QOL
than non-MBSR women, F(2,88)=4.955,
p = 0.009.
38
N (Cont1, T0)
31
N (Cont1, T1)
28
Mode
Face-to-face
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Title
Intervention
Studies with no significant findings
Nidich
Intervention1
(2009) 296
Transcendental meditation
(USA)
Comparison condition(s)
Population
Methods
Results
Level of Evidence
Cancer types
Measures
Summary of results
Study type
Repeated-measures ANCOVA
(covarying for baseline score and ER
status). Results for FACIT-Sp not
significant.
Breast
FACIT-Sp
Severity
Follow-up
Mixed
Baseline [T0]
Reviewer comments
72% early
Post – 6 months [T1]
1 - 1.5 hours
Timing
Post – 12 months [T2]
Note that significant results were found,
in favour of the intervention group, for
overall, emotional and social QoL.
Number of sessions
Mean of more
Post – 18 months [T3]
7 (plus practice twice a day
than 5 years post-
for 20 mins), plus optional
diagnosis
monthly follow-up sessions
Treatment status
Total duration
Not specified
Standard care
Frequency and duration
Duration of each session
Not specified
Delivery
Qualified instructor
Group or individual
Both
Mean age
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
Sample size
N (Int1, T0)
64
N (Cont1, T0)
66
64
Gender
Women only
Mode
Face-to-face
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6.5.2
Results of stress-reduction interventions studies
Eight of the 10 studies were Level II randomised controlled trials, while two studies were
non-randomised experimental trials where participants were allocated to groups in
accordance with their own expressed preferences, providing a lower level of evidence
(Level III-two). The quality of one of the RCTs and one of the non-randomised
experimental trials was adjudged to be ‘good’, the remaining eight studies were
deemed to be of ‘strong’ quality. All 10 studies conducted statistical analyses comparing
group outcomes (between group analyses). Of these studies, nine found significant
effects on at least one outcome measure. (In one of these studies, significant results only
emerged in a secondary analysis conducted on a subgroup of women not receiving
chemotherapy.) The remaining study failed to find a significant effect for the outcome
measure of relevance to this review. See results summarised in Table 19 below.
Table 19
Summary of results for stress-reduction interventions
Author, year
Antoni
(2001) 221
Antoni
(2006) 291
Chandwani
(2010) 220
Danhauer
(2009) 292
Garland
(2007) 293
Henderson
(2012) 229
Significant intervention changes as
compared to control group
Benefit Finding Scale (post-intervention [3
months], 6 months – marginal)
Benefit Finding Scale (6 months, 12 months –
differential slope)
Benefit Finding Scale (4.5 months)
Non-significant changes
Benefit Finding Scale (12 months)
Benefit Finding Scale (1 week
post-intervention [7 weeks], 10
weeks)
FACIT-Sp Meaning/Peace (post-intervention
[10 weeks])
FACIT-Sp total (post-intervention [8 weeks])
FACIT-Sp total (post-intervention [4 months],
12 months)
SOC Meaningfulness (post-intervention [4
months])
SOC Comprehensibility (12 months)
FACIT-Sp total (24 months)
SOC Meaningfulness (12 months,
24 months)
SOC Comprehensibility (postintervention [4 months], 24
months)
Moadel
(2007) 294
Nidich (2009)
FACIT-Sp total (post-intervention [3 months])
FACIT-Sp total (6 months, 12
months, 18 months)
296
Penedo
(2006) 222
WitekJanusek
(2008) 295
Benefit Finding Scale (post-intervention [1213 weeks])
Quality of Life Index – Cancer Version III
(post-intervention [2 months], 3 months)
Quality of Life Index – Cancer
Version III (during intervention [1
month])
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Of the 10 studies, overall:




Four studies found significant effects for spiritual wellbeing (three using the FACITSp total,229, 293, 294 and one the Quality of Life Index – Cancer Version III
psychological-spiritual subscale 295); while one study failed to find an effect using
the FACIT-Sp 296
One study found a significant effect for meaning/peace (FACIT-Sp) 292
Four studies found a significant effect for benefit finding 220-222, 291
One study found a significant effect for meaningfulness and comprehensibility
(SOC).229
Exploring the impact of the intervention over time:

Three studies conducted assessments post-intervention only, and found a positive
impact for spiritual wellbeing (FACIT-Sp),293 meaning/peace (FACIT-Sp),292 and
benefit finding 222 (one study each)

One study reported only on a post-intervention assessment (six-month follow-up
data were collected but not reported), and found a positive impact for spiritual
wellbeing (FACIT-Sp) in secondary analyses on a sub-group of women not
undergoing chemotherapy 294

One study found a positive effect for spiritual wellbeing (FACIT-Sp) postintervention (i.e. four months from baseline) and at 12 months, but not at 24
months 229

One study found a positive effect for psychological-spiritual wellbeing (QLI-CV III)
post-intervention (i.e. two months from baseline) and at three months from
baseline, but not during the intervention (i.e. one month from baseline) 295

One study found a positive effect for meaningfulness (SOC) post-intervention (i.e.
four months from baseline) but not at 12 months and 24 months; and a positive
effect for comprehensibility (SOC) at 12 months but not 4 months or 24 months 229

One study found no effect for spiritual wellbeing (FACIT-Sp total) at six months, 12
months, and 18 months from baseline 296

One study found no effect for benefit finding at one week or one month postintervention (i.e. seven weeks or 10 weeks from baseline), but an effect at three
months (4.5 months from baseline) 220

Two studies found an effect for benefit finding that was to maintained over time:
one found changes post-intervention (i.e. three months from baseline) that were
marginally statistically significantly higher than control group scores at six months,
but not at 12 months;221 in the other there was differential change between
groups over a one-year period (with assessments at baseline, six months and 12
months).291
Overall, seven of eight Level II studies 220-222, 229, 291, 292, 294 and two Level III-two studies 293, 295
provide evidence suggesting that stress reduction interventions can significantly and
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
152
positively impact outcomes of meaning and spiritual wellbeing in cancer patients,
predominantly women with breast cancer. Four of these studies found an impact for
overall spiritual wellbeing or meaning/peace as measured by the FACIT-Sp.229, 292-294 One
study found an impact on meaningfulness and comprehensibility as measured by the
SOC.229 The remaining four studies in which a positive impact of the intervention was
found used the benefit finding scale.220-222, 291 One of these studies found that patients in
the intervention group reported higher levels of benefit finding at 4.5 months.220
Interestingly, they also reported higher levels of intrusive thoughts at the 10-week
assessment, and levels of intrusive thoughts at 10 weeks were correlated with the degree
of benefit finding reported at 4.5 months. This suggests that although the intervention has
a positive effect at 4.5 months, at 10 weeks the intervention may have had a more
negative effect, emphasising the need for follow up assessments to explore the pattern
of gains and/or losses over time.
Eight of these 10 studies involved only women with breast cancer, 220, 221, 229, 291, 292, 294-296
and breast cancer patients comprised over half of the sample in another study.293
However, the remaining study provides some evidence in support of the suggestion that
these results might generalise to mixed gender samples with a range of different
diagnoses, as this study found a significant effect of the intervention on benefit finding in
a group of men with early stage prostate cancer.222
It is noteworthy that the study which failed to find a significant effect of the intervention
on spiritual wellbeing 296 recruited a population of older women who were further from
diagnosis (a mean of over five years) than the remaining samples, and used
transcendental meditation rather than yoga, mindfulness-based or cognitive behavioural
stress reduction. This study, however, also found a significant effect of the intervention in
measures not of relevance for the purposes of this review (i.e. emotional wellbeing and
mental health). It is also possible that differences in coping styles between study
populations might account for the differential impact of interventions and further
research might also explore this possibility.
On the basis of the included studies, the NHMRC levels of evidence statement (below)
has been completed to summarise the evidence pertaining to the impact of stress
reduction interventions on levels of meaning and spiritual wellbeing.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
153
6.5.3
NHMRC Evidence Statement
(If rating is not completely clear, use the space next to each criteria to note how the group came to a judgment. Part B of this document will
assist with the critical appraisal of individual studies included in the body of evidence)
Key question: What is the impact of stress reduction interventions on spiritual wellbeing and meaning in cancer patients?
Evidence table ref:
1. Evidence base (number of studies, level of evidence and risk of bias in the included studies)
A
A – Eight level II studies (1 ‘good’ and 7 ‘strong’) and 2 level III-2 studies B
(1 ‘good’ and 1 ‘strong’)
One or more level I studies with a low risk of bias or several level II studies with a low
One or two Level II studies with a low risk of bias or SR/several Level III studies with a
C
One or two Level III studies with a low risk of bias or Level I or II studies with a moderate
D
Level IV studies or Level I to III studies/SRs with a high risk of bias
2. Consistency (if only one study was available, rank this component as ‘not applicable’)
B
A
All studies consistent
B
Most studies consistent and inconsistency can be explained
C
Some inconsistency, reflecting genuine uncertainty around question
D
Evidence is inconsistent
NA Not applicable (one study only)
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6.6
Spiritual interventions
Five studies evaluating interventions incorporating an explicitly spiritual component met
the review criteria. Interventions included a psycho-spiritual group from an Islamic
perspective, body mind spirit therapy, a structured multidisciplinary intervention focused
on specific strategies to improve quality of life in multiple dimensions (including spiritual),
spirituality counselling, and a brief semi-structured oncologist inquiry into religious/spiritual
concerns. Key characteristics of study methodology and of the spiritual interventions are
shown in Table 20 below.
6.6.1
Summary of spiritual interventions study characteristics
Study sample
Three of the five identified studies in which interventions incorporating an explicitly
spiritual component were evaluated (see Table 20) were from the USA. One study was
conducted in Taiwan, and 1 study in Iran.
The study sample sizes for these studies were generally small to moderate, varying from as
small as 22 to the largest study which included 118 participants.
Three of the studies included only women with breast cancer, all with mixed (but
predominantly early) stages. One included a mixed sample of advanced cancer
patients, and one a mixed sample of patients with mixed disease severity.
Patients in three studies were on average three or more years post-diagnosis and not
currently on treatment, one study included patients undergoing radiotherapy within 12
months of a diagnosis of advanced cancer, and one study included patients on
average three years post-diagnosis, but with a mixed treatment status.
Intervention
The intervention studies were varied in nature and modality. Two studies involved support
groups, one a structured multidisciplinary group education and support program
incorporating a spiritual component, one individual spiritual counselling, and one a brief
semi-structured oncologist inquiry into spiritual and religious concerns. Four of the five
interventions were conducted face-to-face, the spiritual counselling was delivered by
telephone.
Duration of the interventions lasted from between 5-7 minutes (for the oncologist inquiry)
to 6–12 months (for the spirituality counselling). The education program lasted three
weeks, and the two support groups were each of eight weeks’ duration.
The delivery of the intervention varied: the intervention was nurse led, in one study,
psychiatrist or psychologist led in one study, delivered by a spirituality counsellor in one
study, oncologist delivered in one study, and not specified in one study.
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Table 20
Intervention characteristics – Spiritual interventions (n = 5)
Title
Intervention
Studies with significant findings
Fallah
Intervention1
(2011) 183
Islamic perspective psychoIran
spiritual group
Comparison condition(s)
Population
Methods
Results
Level of Evidence
Cancer types
Measures
Study type
Breast
Adult Dispositional
Summary of results
Spiritual intervention was effective in
increasing hope, p = 0.001, int. pre-test
27.28, post-test 27.92 (cont. 26.92,
25.80). Covariance was used to
observe the effectiveness of spiritual
intervention and removal of pre-test
effect. Post-test corrected means: int.
29.82, cont. 26.09.
Control group, not further
Mixed
specified
72% early; 28%
Frequency and duration
Duration of each session
1.5 hours
Number of sessions
8 (weekly)
Total duration
8 weeks
Delivery
Not specified
Group or individual
Group
Mode
Hope Scale [Snyder]
Severity
Follow-up
Baseline [T0]
advanced
Post – 9 weeks [T1]
Timing
Sample size
Mean 47/ 33
(int
Level of evidence
Level III-2
Quality
Adequate
30
N (Int1, T1)
/ cont)
Treatment status
25
N (Cont1, T0)
Off treatment
30
Mean age
50 / 48
experimental trial
N (Int1, T0)
months postdiagnosis
Non-randomised,
N (Cont1, T1)
(int
25
/ cont)
Gender
Women only
Face-to-face
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Title
Hsiao
(2012) 223
Taiwan
Intervention
Population
Methods
Intervention1
Cancer types
Measures
Breast
Meaning in Life
Body mind spirit therapy
Comparison condition(s)
One session of person-to-
Questionnaire (MLQ)
Severity
Follow-up
person education on health
Mixed
behaviours, provision of
83% early; 15%
muscle relaxation tapes
advanced; 2%
and qi gong videos
unknown
Frequency and duration
Timing
Duration of each session
Mean of over 3
2 hours
years since
Sample size
completing
N (Int1, T0)
Number of sessions
8 (weekly)
Baseline [T0]
Post – 2 months [T1]
Post – 5 months [T2]
treatment; 15% of
int. group and 5%
Post – 8 months [T3]
26
N (Int1, T1)
Total duration
of cont. group
8 weeks
had had
18
recurrence
N (Cont1, T0)
Treatment status
22
Off treatment
N (Cont1, T1)
Delivery
Nurse
Group or individual
Group
Mode
Face-to-face
Mean age
46 / 47
Results
Summary of results
ANCOVA adjusting for baseline scores.
Significant group by time interaction
effects in MLQ-Search scores from T1 to
T2, F(1,33) = 9.37, p = .0044, etasquared = .221, but to T3 the
significance became marginal, F(2,66)
= 3.09, p = .05. Increased MLQ-search
scores in int. group with large effect
size, while decreased scores in cont.
group at T2. Results suggest that int.
subjects more likely to be searching for
meaning in their life after therapy, at
least through T2.
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
Int. T0 22.7, T1 24.6, T2 23.4, T3 22.6
Cont. T0 26.7, T1 24.4, T2 26.3, T3 25.2
No significant differences in MLQPresence over 3 follow-up times.
Reviewers comments
Int. group were more likely to be
searching for meaning in life after
therapy - is this necessarily a good
thing?
19
(int. /
cont.)
Gender
Women only
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Title
Rummans
(2006) 297
Intervention
Population
Methods
Results
Level of Evidence
Intervention1
Cancer types
Measures
Summary of results
Study type
Structured, multidisciplinary
USA
intervention focused on
Mixed
FACIT-Sp
Randomised
Post – 4 weeks [T1]
No differences between groups in QoL
at baseline. Overall spiritual wellbeing
(LASA) was statistically significantly
different between the intervention and
control groups at week 4 (92.9 v 83.9,
respectively; p = .003) Measurement of
spiritual wellbeing with the Functional
Assessment of Chronic Illness Therapy
scale did not reveal significant
differences between the two groups at
week 4. No significant differences at
week 8 or week 27.
Post – 8 weeks [T2]
Reviewers comments
specific strategies designed
to improve participants’
QOL (including spiritual)
Comparison condition(s)
38% colorectal;
17% primary head
and neck
Severity
Advanced
Standard care
Timing
Frequency and duration
Diagnosed within
last 12 months
Duration of each session
Treatment status
90 minutes
Number of sessions
8
Total duration
3 weeks
Delivery
On treatment
Linear analogue selfassessment (LASA)
item for spiritual
wellbeing
Follow-up
Baseline [T0]
Radiotherapy
Post – 27 weeks [T3]
Mean age
Sample size
59.5
N (Int1, T0)
Gender
55
36% female
N (Int1, T1)
Psychiatrist or psychologist
49 [or 46]
led, multidisciplinary input
N (Cont1, T0)
Group or individual
58
Group
N (Cont1, T1)
Mode
controlled trial
Level of evidence
Level II
Quality
Strong
Note recruitment rate of only 25%.
54
Face-to-face
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Title
Intervention
Studies with no significant findings
Djuric
Intervention1
(2009) 298
Spirituality counselling +
USA
dietician-led counselling
Population
Methods
Results
Level of Evidence
Cancer types
Measures
Study type
Breast
FACIT-Sp
Severity
Follow-up
Dietician-led counselling
Mixed
Baseline [T0]
only
79% early; 21%
Summary of results
Participants were randomised to
spirituality counselling at T0, and the
decrease in spiritual wellbeing from T0
to T2 was greater in the dietician-only
arm (cont. -3.3 points, int. -0.2 points,
p = .024). Note that this difference was
not deemed significant due to
adjustments for multiple comparisons.
No significant differences in either
subscale.
Comparison condition(s)
Frequency and duration
Duration of each session
Median 26 mins (17-45)
Number of sessions
Median 11 (2-26)
Total duration
advanced
dietician-led
counselling
Timing
Mean approx 5.5
years post-
Treatment status
Off treatment
months; fortnightly for next 3
Mean age
(flexibly based on need)
Delivery
Spirituality counsellor
Group or individual
Individual
56 / 55
/ int)
Gender
Women only
intervention
(randomisation for
spirituality counselling)
diagnosis
12 months – weekly for first 3
months; then monthly
6 months into
During – 6 months [T1]
Post – 12 months [T2]
Sample size
(cont
N: 31 enrolled in parent
Decrease in spiritual wellbeing in the
dietician-only arm (int. baseline 41,
T2 38) but not in the spirituality arm
(cont. baseline 42, T2 42).
Randomised controlled
trial
Level of evidence
Level II
Quality
Strong
Reviewers comments
Note that change in FACIT-Sp score
from T0-T2 in spirituality arm was
significantly and positively correlated
with total minutes of spirituality
counselling time (r = .7, p = .008).
study
N (Int1, T0): 12
N (Int1, T1): 11
N (Cont1, T0): 12
N (Cont1, T1): 11
Mode
Telephone
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Title
Kristeller
(2005) 299
Intervention
Population
Methods
Intervention1
Cancer types
Measures
USA
physician inquiry into
Mixed
FACIT-Sp
Brief, semi-structured
religious/spiritual concerns
22% Lymphoma;
16% Breast; 12%
Follow-up
Colorectal
Baseline [T0]
Severity
Post-intervention [T1]
Mixed
Post – 3 weeks [T2]
Duration of each session
46% remission,
5-7 minutes
24% active
Sample size
Comparison condition(s)
Usual care
Frequency and duration
Number of sessions
1
Total duration
5-7 minutes
Delivery
Oncologist
Group or individual
disease, 14%
N (Int1, T0)
relapse, 17% don't
54
know
N (Cont1, T0)
Timing
64
Results
Summary of results
No significant impact on spiritual
wellbeing, FACIT-Sp total score.
Level of Evidence
Reviewers comments
After controlling for baseline levels of
FACT-G QoL and spiritual wellbeing,
perception of cancer status, and
changes in patient satisfaction, impact
of intervention remained highly
significant for depressed mood and
total FACT-G. Additional analysis on
moderator effects suggested
treatment effect on functional
wellbeing was particularly evident for
those lower in spiritual wellbeing at
baseline (FACIT-Sp <1 SD below avg:
beta = .293, p < .001; FACIT-Sp >1 SD
above avg: beta = .02, ns).
controlled trial
Study type
Pseudorandomised
Level of evidence
Level III-1
Quality
Strong
Mean 38 months
post-diagnosis
Treatment status
Mixed
Individual
54% in ‘active
Mode
treatment’
Face-to-face
Mean age
60
Gender
55% female
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6.6.2
Results of spiritual interventions studies
Three of the five studies were Level II randomised controlled trials, one was a pseudorandomised controlled trial (Level III-1), and the other a non-randomised experimental
trial where participants were allocated to groups in accordance with their own
expressed preferences (Level III-2). The non-randomised experimental trial received an
‘adequate’ rating for quality, all other studies were considered’ strong’. All five studies
conducted statistical analyses comparing group outcomes (between group analyses).
Of these studies, three found significant effects on at least one outcome measure. The
remaining two studies failed to find a significant effect for the outcome measure of
relevance to this review, although a trend for significance was found in one study. See
results summarised in Table 21 below.
Table 21
Summary of results for spiritual interventions
Author,
year
Djuric
(2009) 298
Significant intervention changes
as compared to control group
Fallah
(2011) 183
Hsiao
(2012) 223
- Adult Dispositional Hope Scale
(post-intervention [9 weeks])
- Meaning in Life - Search (5
months, 8 months [marginal])
Kristeller
(2005) 299
Rummans
(2006) 297
- LASA spiritual wellbeing (postintervention [4 weeks])
Non-significant changes
- FACIT-Sp total, meaning/peace and faith (12
months from randomisation to spiritual
counselling intervention)
Arguably a trend for significance for the total
score
- Meaning in Life - Search (post-intervention [2
months])
- Meaning in Life - Presence (post-intervention
[2 months], 5 months, 8 months)
- FACIT-Sp total (post-intervention, 3 weeks)
- LASA spiritual wellbeing (8 weeks, 27 weeks)
- FACIT-Sp total (post-intervention [4 weeks], 8
weeks, 27 weeks)
Of the five studies, overall:




One study found significant effects for hope (ADHS)183
One study found significant effects for spiritual wellbeing on one of the measures
used (LASA), but not the other (FACIT-Sp total) 297
Two additional studies failed to find an effect for spiritual wellbeing (FACIT-Sp
total) 298, 299, and one of these studies also failed to find an effect for the
meaning/peace and faith subscales, although there was arguably a trend for
significance in the total score 298
One study found a significant effect for meaning in life – search (MLQ-Search),
but not meaning in life – presence.223
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Exploring the impact of the intervention over time:

One study conducted assessments post-intervention (i.e. 9 weeks from baseline)
only, and found a positive impact for hope 183

One study found a positive effect for spiritual wellbeing (LASA) post-intervention
(i.e. four weeks from baseline), but this effect was not maintained at eight weeks
or 27 weeks; the same study found no effect at all three time points using the
FACIT-Sp total score 297

One study found no effect on spiritual wellbeing, meaning/peace or faith at
12 months; however there was a trend for significance for mean change scores in
the total score 298

One study found no effect on spiritual wellbeing (FACIT-Sp) either immediately
post-intervention or at three weeks 299

One study found a positive effect for meaning in life – search at five months,
which was marginally significant at eight months, although there was no effect
immediately post-intervention (i.e. two months from baseline); there were no
effects for meaning in life – presence at any of the three time points.223
Overall, results of these studies are inconsistent, particularly as regards to spiritual
wellbeing.
A structured, multidisciplinary intervention focused on specific strategies designed to
improve participants’ QOL (with chaplain co-facilitation and manualised content
pertaining to the spiritual dimension) did appear to have a significant impact on spiritual
wellbeing for newly diagnosed advanced cancer patients undergoing radiotherapy,
immediately post intervention.297 A significant impact was found only when spiritual
wellbeing was measured using a LASA item, however, and there was no between groups
effect for the FACIT-Sp total score. Nor was the effect of the intervention maintained at
eight weeks and 27 weeks (LASA item).
A brief semi-structured oncologist inquiry into religious/spiritual concerns in a mixed
cancer setting 299 and a spirituality counselling arm in a study exploring the impact of
dietary counselling on weight loss in obese breast cancer patients 298 failed to find an
effect on spiritual wellbeing. There was a trend for significance, however, in the weight
loss study, and the oncologist intervention study did find significant improvements in levels
of depression, and a moderator effect such that treatment effect on functional
wellbeing was particularly evident for those lower in spiritual wellbeing at baseline. These
results suggest that further research into such interventions may be warranted, and might
particularly consider the use of more sensitive outcome measures, and/or intervening in
populations closer to diagnosis, or exploring particular subgroups of patients who might
benefit from such interventions. It is also possible that differences in coping styles
between study populations might account for the differential impact of interventions and
further research might also explore this possibility.
A holistic body-mind-spirit group program found elevated levels of search for meaning at
five months and eight months, with no impact on the presence of meaning.223
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It should be noted, however, that elevated levels of search for meaning, in the absence
of improvements in the presence of meaning, may not necessarily constitute a beneficial
effect of the intervention.
An eight-week psycho-spiritual group program incorporating an Islamic perspective also
found the intervention significantly impacted hope immediately post-intervention,
suggesting that such interventions do show promise, although this study was only rated
‘adequate’ for its quality.183
Further research is needed to more clearly understand the impact of interventions
incorporating an explicit spiritual component on spiritual wellbeing. At this stage, the
included studies vary too greatly in their aims, modality (e.g. oncologist inquiry vs. support
group vs. individual counselling), techniques, and population (e.g. time since diagnosis;
treatment status) to effectively draw conclusions. There is one Level III-2 study suggesting
that such interventions may positively impact hope.
On the basis of the studies eligible for inclusion in this review, the NHMRC levels of
evidence statement (below) has been completed to summarise the evidence pertaining
to the impact of interventions with explicitly spiritual content on levels of spiritual
wellbeing, hope and meaning in cancer patients.
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6.6.3
NHMRC Evidence Statement
(If rating is not completely clear, use the space next to each criteria to note how the group came to a judgment. Part B of this document will
assist with the critical appraisal of individual studies included in the body of evidence)
Key question: What is the impact of interventions with explicitly spiritual content on spiritual wellbeing, meaning and
Evidence table ref:
hope?
1. Evidence base (number of studies, level of evidence and risk of bias in the included studies)
D – Hope 1 Level III-2 study (quality ‘adequate’)
B – Spiritual wellbeing – 2 Level II and 1 Level III-1 studies (quality
‘strong’)
B – Meaning – I Level II study (quality ‘strong’)
A
One or more level I studies with a low risk of bias or several level II studies with a low
B
One or two Level II studies with a low risk of bias or SR/several Level III studies with a
C
One or two Level III studies with a low risk of bias or Level I or II studies with a moderate
D
Level IV studies or Level I to III studies/SRs with a high risk of bias
2. Consistency (if only one study was available, rank this component as ‘not applicable’)
C – spiritual wellbeing
N/A – hope and meaning
A
All studies consistent
B
Most studies consistent and inconsistency can be explained
C
Some inconsistency, reflecting genuine uncertainty around question
D
Evidence is inconsistent
NA Not applicable (one study only)
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6.7
Hope-centred interventions
Three studies evaluating hope-centred interventions met the review criteria. Interventions
included group and individually delivered programs designed to facilitate hope. Key
characteristics of study methodology and of the hope-centred interventions are shown in
Table 22 below.
6.7.1
Summary of hope-centred interventions study characteristics
Study sample
One of the three identified studies in which hope-centred interventions were evaluated
(see Table 22) was from the USA, one was from Canada, and one was from Norway.
The study sample sizes for these studies were generally small to moderate, varying from as
small as 40 to the largest study which included 115 participants.
All studies included patients with mixed cancer types. One study included newly
diagnosed patients, one study patients experiencing a recurrence, and one study
patients with terminal cancer.
Intervention
Two studies evaluated an eight-week face-to-face group delivered nursing intervention
designed to enhance hope, while one study evaluated a brief individual intervention
where participants watched a film with a nurse and then worked individually for a week
for however much time they chose on a hope activity.
Duration of the interventions thus lasted from one week to eight weeks, and all were
nurse-delivered.
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Table 22
Intervention characteristics – Hope-centred (n = 3)
Title
Intervention
Studies with significant findings
Duggleby
Intervention1
(2007) 300
Viewing "living with hope" &
Canada
hope activity
Comparison condition(s)
standard care
Frequency and duration
Duration of each session
Population
Methods
Results
Level of Evidence
Cancer types
Measures
Study type
Mixed
Herth Hope Index
Summary of results
Baseline total and subscale HHI and
MQOL scores did not differ significantly
between groups.
22% lung
Severity
Terminal
Timing
Watched film then
Mean 45 / 19
independent activity
months post-
McGill QoL
Follow-up
Baseline [T0]
Post – 1 week [T1]
Sample size
diagnosis
N (Int1, T0)
(cont / int )
30
independent activity
Treatment status
N (Int1, T1)
Total duration
Palliative care
1 week
Mean age
Delivery
75 (all over 60)
Nurse
Gender
Group or individual
53% female
Number of sessions
Watched film then
30
N (Cont1, T0)
At 1 week, int. group had significantly
higher scores on HHI, int. 38.32, cont.
36.40, p = .005, d = .34 (baseline 36.81,
36.68), HHI temporality and future
subscale, 13.28, 12.30, p = .01, MQOL
total, 7.09, 6.57, p = .027, d = .26
(baseline 6.47, 6.18), and MQOL
existential subscale, 7.96, 7.20, p = .02).
No other HHI subscales differed
significantly.
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
Reviewers comments
One-tailed test inappropriate.
Treatment group more females and
longer time since diagnosis than
control group.
31
N (Cont1, T1)
30
Individual
Mode
Face-to-face and individual
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Title
Herth
(2000) 185
Intervention
Population
Methods
Intervention1
Cancer types
Measures
USA
designed to enhance hope
Mixed
Herth Hope Index
Nursing intervention
Comparison condition(s)
Attention control
(information, cont1) or
47% breast, 18%
lung
Severity
Follow-up
Baseline [T0]
Post – 10 weeks [T1]
control (usual treatment,
Recurrent
cont2)
Timing
Frequency and duration
Mean 26 months
Duration of each session
post-diagnosis
Post – 9 months [T4]
2 hours
Treatment status
Sample size
Number of sessions
On treatment
N (Int1, T0)
Chemotherapy,
38
Total duration
radiation, or
biologic response
N (Cont1, T0)
8 weeks
8 (weekly)
Delivery
Nurse
Group or individual
Group
Mode
modifier therapy
Mean age
Post – 3 months [T2]
Post – 6 months [T3]
37
Results
Summary of results
Regression analysis showed that mean
score on hope for int. group was
improved significantly at T1 compared
with attention control (p = .028) and
control (p = .012).
Mean changes predominantly in the
'interconnectedness with self and
colleagues' (p = .036) and 'inner
positive readiness and expectancy'
subscales (p = .042).
Int.
Level of Evidence
Study type
Randomised
controlled trial
Level of evidence
Level II
Quality
Strong
T0 34.3, T1 43.1
Cont1. T0 35.1, T1 38.3
Cont2. T0 34.6, T1 35.2
Remained significantly higher at
subsequent follow-ups.
Reviewers comments
Note there were also improvements in
quality of life in the intervention group.
N (Cont2, T0)
40
54
Gender
52.5% female
Face-to-face
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Title
Rustoen
(1998) 186
Intervention
Population
Methods
Results
Level of Evidence
Intervention1
Cancer types
Measures
Summary of results
Study type
Norway
designed to enhance hope
Mixed
Nowotny Hope Scale
Randomised
43% breast
Follow-up
Attention control (“Learning
Severity
Baseline (x2) [T0]
to Live with Cancer” group)
Not specified
or control (usual treatment)
Post – 10 weeks [T1]
Life expectancy
of at least 1-2
years
Baseline scores did not differ
significantly by group. Regression
showed mean score on hope for the
participants in the hope group was
improved significantly 2 weeks after
intervention compared with the scores
on hope for the participants in the
attention control group (p = 0.036) and
the control group (p = 0.020). Mean
changes were found primarily in the
"future is possible" subscale (p = 0.044),
and in the "confidence" subscale (p =
0.055) of NHS.
Nursing intervention
Comparison condition(s)
Frequency and duration
Duration of each session
2 hours
Number of sessions
Timing
Newly diagnosed
Post – 8 months [T2]
Sample size
N (T0)
124
8 (weekly)
96% within 1 yr of
diagnosis
Total duration
Treatment status
32
8 weeks
Not specified
N (Cont1, T1)
Delivery
Mean age
23
52
N (Cont2, T1)
41 Nurse
Group or individual
Group
Mode
Face-to-face
Gender
N (Int1, T1)
controlled trial
Level of evidence
Level II
Quality
Strong Differences were not significant at T2.
Reviewer comments
Note recruitment rate of only 28% and
drop out of 23%. 71% female
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6.7.2
Results of hope-centred interventions studies
All three studies were Level II randomised controlled trials with ‘strong’ quality ratings, and
all three conducted statistical analyses comparing group outcomes (between group
analyses). Of these studies, all three found significant effects of the intervention on hope,
two using the Herth Hope Index,185, 300 and one using the Nowotny Hope Scale.186 One
study also found an effect on existential wellbeing (MQOL).300 See results summarised in
Table 23 below.
Table 23
Summary of results for hope-centred intervention studies
Author, year
Duggleby
(2007) 300
Herth (2000) 185
Rustoen
(1998) 186
Significant intervention changes as
compared to control group
- Herth Hope Index (post-intervention
[1 week])
- MQOL (post-intervention [1 week])
- Herth Hope Index (post-intervention
[10 weeks]), 3 months, 6 months and 9
months)
- Nowotny Hope Scale (post-intervention
[10 weeks])
Non-significant changes
- Nowotny Hope Scale (8 months)
Exploring the impact of the intervention over time:



One study found post-intervention (i.e. one week) improvements in hope (HHI)
and existential wellbeing (MQOL), but did not conduct follow-up assessments 300
One study using the HHI found an effect two weeks post-intervention (i.e. 10
weeks from baseline), which was maintained at three, six, and nine months 185
One study using the NHS found an effect two weeks post-intervention (i.e. 10
weeks from baseline), which was not maintained at eight months 186
The “future is possible” and “confidence” subscales of the NHS were impacted by the
intervention.186 One study using the HHI reported that the 'interconnectedness with self
and colleagues' and 'inner positive readiness and expectancy' subscales were
impacted,185 while the other study indicated that the ‘temporality and future” subscale
was impacted.300
Overall, all three of these Level II studies provide evidence suggesting that hope-centred
interventions can significantly and positively impact hope in cancer patients at different
stages of the disease trajectory, including not only newly diagnosed patients,186 but also
those experiencing recurrent disease,185 and those receiving palliative care.300 It appears
that such improvements can be obtained even with relatively short-term interventions,
and regardless of whether the intervention is delivered individually or in groups. There is
less evidence exploring the extent to which these gains are maintained over time, and so
far results appear inconsistent, with attrition making this a difficult question to answer
rigorously. It is also important to note low recruitment rates and reasonably high levels at
hope at study entry for those who agreed to participate in the study involving newly
diagnosed patients,186 suggesting that although such interventions may boost hope, it is
unclear whether they would have any impact on hopelessness in this population. (It is
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
169
also argued by some that hopelessness itself is a separate construct, and not the other
end of a continuum ranging from hopelessness to hope in a linear fashion e.g., see 165,
301). Baseline levels of hope, however, were lower in the study in which patients with
recurrent disease participated,185 and recruitment for this study was more successful,
suggesting that these concerns do not necessarily generalise across populations.
On the basis of the included studies, the NHMRC levels of evidence statement (below)
has been completed to summarise the evidence pertaining to the impact of hopecentred interventions on levels of hope – and existential wellbeing – in cancer patients.
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170
6.7.3
NHMRC Evidence Statement
(If rating is not completely clear, use the space next to each criteria to note how the group came to a judgment. Part B of this document will
assist with the critical appraisal of individual studies included in the body of evidence)
Key question: What is the impact of hope-centred interventions on levels of hope in cancer patients?
Evidence table ref:
1. Evidence base (number of studies, level of evidence and risk of bias in the included studies)
A (all studies rated ‘strong’)
A
One or more level I studies with a low risk of bias or several level II studies with a low
B
One or two Level II studies with a low risk of bias or SR/several Level III studies with a
C
One or two Level III studies with a low risk of bias or Level I or II studies with a moderate
D
Level IV studies or Level I to III studies/SRs with a high risk of bias
2. Consistency (if only one study was available, rank this component as ‘not applicable’)
A
A
All studies consistent
B
Most studies consistent and inconsistency can be explained
C
Some inconsistency, reflecting genuine uncertainty around question
D
Evidence is inconsistent
NA Not applicable (one study only)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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6.8
Other interventions
Seven studies evaluating ‘other’ interventions met the review criteria. Interventions varied
in content and included creative arts (e.g. music therapy; art therapy; and a mixture of
movement to music, writing and drawing), expressive writing, systematic assessment, dog
visits and haptotherapy (i.e. touch). Key characteristics of study methodology and of the
various interventions comprising this group are shown in Table 24 below.
6.8.1
Summary of other intervention study characteristics
Study sample
Five of the seven identified studies in which other interventions were evaluated (see Table
24) were from the USA, one was from Canada, and one was from the Netherlands.
The study sample sizes for these studies were generally small to moderate, varying from as
small as 30 to the largest study which included 709 patient-carer dyads.
Patient characteristics varied considerably between studies.
Intervention
Intervention types and modalities varied considerably. These included one music therapy
study; one art therapy study; one creative arts study involving a mixture of movement to
music, writing and drawing; one expressive writing study; one study assessing the impact
of systematic assessment of patients; one animal assisted activity study (e.g. dog visits);
and one haptotherapy (i.e. touch) study.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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Table 24
Intervention characteristics – Other (n = 7)
Title
Intervention
Studies with no significant findings
Garland *
Intervention1
(2007) 293
Healing arts (HA)
Canada
Intervention2
MBSR
Frequency and duration
Population
Methods
Results
Level of Evidence
Cancer types
Measures
Results
Study type
Mixed
FACIT-Sp
Summary of results
Non-randomised,
There was a group by time interaction
experimental trial
Over half breast
cancer
Severity
Follow-up
on the FACIT-Sp, F=4.881, p = 0.029),
such that scores in MBSR group
Post – 6-8 weeks [T1]
increased, but those in HA remained
Level III-2
relatively stable.
Quality
MBSR pre 28.43, post 32.10
Good
Duration of each session
Mixed
90 mins (MBSR), 2 hrs (HA)
Median II (I - IV)
Sample size
Number of sessions
Timing
N (Int1, T0)
51 (HA)
HA pre 29.7, post 30.52
years post-
N (Int1, T1)
Reviewers comments
Total duration
diagnosis
44 (HA)
Age, gender, marital status, education
8 wks (MBSR); 6 wks (HA)
(HA / MBSR)
N (Int2, T0)
Treatment status
79 (MBSR)
psychological measures, were not
Delivery
Yoga instructor, nurse, clin.
Outpatients, not
N (Int2, T1)
psychologist (MBSR);
further specified
60 (MBSR)
8 + silent retreat (MBSR); 6
(HA) [both weekly]
clinical psychologist, social
worker, artists ( HA)
Group or individual
Group
Mode
Mean 2.5 / 1.5
Level of evidence
Baseline [T0]
and duration of illness, as well as
significantly different at pre-test,
despite lack of randomisation.
Mean age
53 / 52
(HA / MSBR)
Gender
91% female
Face-to-face
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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Title
Hanser
(2006) 302
USA
Intervention
Population
Methods
Results
Level of Evidence
Intervention1
Cancer types
Measures
Summary of results
Study type
Breast
FACIT-Sp
Severity
Follow-up
baseline, and no significant differences
supportive care
Advanced
Baseline [T0]
in the patterns of change over time.
Level of evidence
Timing
Post – 6 weeks [T1]
Results were similar when baseline
Frequency and duration
status was included as a covariate in
Level II
Duration of each session
Table in current
Post – 3 months [T2]
the model.
Quality
45 minutes
copy of article
Sample size
Reviewers comments
Strong
Music therapy
Comparison condition(s)
Usual oncology and
Number of sessions
illegible
3
Treatment status
Total duration
Mixed
9-15 weeks
Most were
Delivery
undergoing
N (Int1, T0)
35
No significant differences in spiritual
wellbeing between conditions at
as problem with palliative care
research. Note that immediately postintervention there was a significant
20
improvement in relaxation, comfort,
N (Cont1, T0)
Music therapist
other therapy
35
Group or individual
Mean age
N (Cont1, T1)
Individual
51
Mode
Gender
Face-to-face
Women only
controlled trial
High attrition rates (28/70) highlighted
N (Int1, T1)
chemotherapy or
Randomised
and happiness as measured by 10cm
VAS.
22
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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Title
Johnson
(2008) 303
USA
Intervention
Population
Methods
Results
Level of Evidence
Intervention1
Cancer types
Measures
Summary of results
Study type
Mixed
Sense of Coherence
Comparison condition(s)
43% breast; 27%
(SOC)
Human visit or reading
head and neck
Dog visit
group
Frequency and duration
Severity
Newly diagnosed
Level II
Post-intervention [T1]
Quality
Good
metastases
Sample size
excluded
N (Int1, T0)
12 (3 times a week)
Timing
10
Total duration
Patients
N (Cont1, T0)
4 weeks
beginning
10
radiation therapy
N (Cont2, T0)
Dog handler
weeks following
Group or individual
initial diagnosis
Individual
Treatment status
Mode
On treatment
Face-to-face
Mean age
controlled trial
Baseline [T0]
15 minutes
for at least four
in mood or sense of coherence.
Randomised
Level of evidence
Those with
Delivery
were found within or between groups
Follow-up
Duration of each session
Number of sessions
No statistically significant differences
10
59
Gender
70% female
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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Title
McMillan
(2011) 304
Intervention
Population
Methods
Results
Level of Evidence
Intervention1
Cancer types
Measures
Summary of results
Study type
USA
assessments reported to
Mixed
Spiritual Needs
No significant group by time
Randomised
Inventory
interaction.
controlled trial
Note impact on depression levels.
Level of evidence
Data from standardised
hospice interdisciplinary
Severity
teams
Not specified
Follow-up
Comparison condition(s)
Timing
Baseline [T0]
Level II
Usual care
Post-intervention [T1]
Quality
(1 week after each of
Strong
admission, 2) the week
Time since
diagnosis not
specified –
patients were
approached
within 24-72 hours
of admission
following.
Treatment status
Sample size
Delivery
Not specified
Oral reports by RA
Mean age
Group or individual
72.7
Frequency and duration
Reports given to hospice
teams: 1) the week after
Individual
Mode
Gender
43.7% female
first two meetings at
which patient
discussed)
Patient-carer dyads
N (Int1, T0)
338 dyads
N (Cont1, T0)
371 dyads
Face-to-face between RA
and Hospice team
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
176
Title
Mosher
(2012) 305
USA
Intervention
Population
Methods
Results
Level of Evidence
Intervention1
Cancer types
Measures
Summary of results
Study type
Breast
Demoralisation scale
No significant group differences in
Randomised
Severity
FACIT-Sp
existential wellbeing (meaning/peace
controlled trial
Metastatic
(meaning/peace)
Timing
Follow-up
Baseline [T0]
participants who had clinically
Quality
Post – 8 weeks [T1]
elevated levels of distress.
Delivery
Time since
diagnosis
4.2 / 4.7 years (int
/ cont)
Strong
Post-doctoral psychology
Treatment status
research fellow
Mixed
Group or individual
Majority chemo
Individual
Mean age
Mode
57.4 / 58.5
Expressive writing
Comparison condition(s)
Neutral writing
Frequency and duration
Four writing sessions (of 20
mins) over 4-7 weeks
Telephone
(int / cont)
Gender
Women only
and demoralisation) with baseline
values included as covariates.
Note that the study recruited only
Level of evidence
Level II
Sample size
N (Int1, T0)
45
N (Int1, T1)
44
N (Cont1, T0)
42
N (Cont1, T1)
42
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Title
Puig (2006)
306
USA
Intervention
Population
Methods
Results
Level of Evidence
Intervention1
Cancer types
Measures
Summary of results
Study type
Breast
Expressions of
No effect spirituality (as measured by
Randomised
Spirituality Inventory –
overall ESI-R score; has existential
controlled trial
Revised
wellbeing subscale for which results not
Creative arts therapy
Comparison condition(s)
Delayed treatment
Frequency and duration
Weekly 60 minute sessions
over four weeks (last session
~ 90 minutes)
Severity
Early
Timing
Newly diagnosed
All within 1 year of
diagnosis
Delivery
Treatment status
Licensed mental health
Not specified
counsellors
Mean age
Group or individual
51.4
Individual
Gender
Mode
Women only
Face-to-face
Follow-up
Baseline [T0]
Post – 4 weeks [T1]
reported); but note impact
psychological wellbeing.
Level of evidence
Level II
Quality
Good
Sample size
N (Int1, T0)
20
N (Int1, T1)
20
N (Cont1, T0)
19
N (Cont1, T1)
19
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178
Title
van den
Berg (2006)
307
The
Netherlands
Intervention
Population
Methods
Results
Level of Evidence
Intervention1
Cancer types
Measures
Summary of results
Study type
Mixed
Meaning in Life [Helen
No significant differences, intervention
Non-randomised,
Comparison condition(s)
Majority breast
Dowling Institute]
did not predict differences in
experimental trial
Matched control group
cancer
Haptotherapy
[from 3 other hospitals in the
same region]
Frequency and duration
Five 45 minute sessions over
an mean of 11.5 weeks (336)
Delivery
Haptotherapists
Group or individual
Individual
Mode
Face-to-face
Severity
Mixed
57-61% metastatic
Timing
Time since
diagnosis not
specified
Treatment status
Follow-up
outcomes.
Level of evidence
Baseline [T0]
Level III-2
Post – approx 13 weeks
Quality
[T1]
Good
Sample size
N (Int1, T0)
55
On treatment
Chemotherapy
N (Int1, T1)
Mean age
N (Cont1, T0)
54 / 52.7
35
(int / cont)
N (Cont1, T1)
Gender
36
31
77% women
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
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6.8.2
Results of other interventions studies
Five of these seven studies were Level II randomised controlled trials, while the remaining
two studies were non-randomised experimental trials in which participants were either
allocated to groups in accordance with their own expressed preferences, or the results of
the intervention group recruited from one hospital were compared with results for a
matched control group from other treatment centres. These two studies therefore
provide a lower level of evidence (Level III-2). Three of the RCTs were rated as having
‘strong’ quality. Quality was rated as ‘good’ for two of the RCTs and both nonrandomised experimental trials.
All seven studies conducted statistical analyses comparing group outcomes (between
group analyses), however none of these studies found a significant effect of the
intervention. See results summarised in Table 25 below.
Table 25
Summary of results for other interventions
Author, year
Garland (2007) 293
Hanser (2006) 302
Johnson (2008) 303
McMillan (2011) 304
Significant intervention changes
as compared to control group
Non-significant changes
- FACIT-Sp total
- FACIT-Sp total
- SOC
- SNI
Mosher (2012) 305
Puig (2006) 306
- FACIT-Sp meaning/peace
- ESI-R
van den Berg
(2006) 307
- Meaning in Life [HDI]
Of the seven studies:


Two studies failed to find an effect on spiritual wellbeing (FACIT-Sp total),293, 302
one additional study failed to find an effect on peace/meaning (FACIT-Sp),305
and one study failed to find an effect on spirituality (ESI-R, including an existential
wellbeing dimension)306
One study each failed to find an effect on sense of coherence (SOC),303 meaning
in life (HDI),307 and spiritual needs (SNI).304
There is therefore no systematic evidence of a positive impact on outcome variables of
relevance to this review for any of these interventions, including music therapy; art
therapy; creative arts (involving a mixture of movement to music, writing and drawing);
expressive writing; systematic assessment of patients; animal assisted activity; and
haptotherapy.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
180
7
Discussion
A systematic review of the literature identified a total of 257 articles for inclusion in the
conceptualisation, assessment and interventions to alleviate suffering.
The evidence presented in this review recognises the importance of not only striving to
alleviate suffering as far as is possible, but also of allowing patients time and space to
express feelings of suffering. The evidence further identifies the value of inquiring about
suffering to create such opportunities, and of being prepared to acknowledge and
“sit with” suffering.
Studies suggest that a multi-dimensional approach to wellbeing and suffering in the
context of cancer is also important. Such an approach would include due emphasis on
the often neglected spiritual dimension of wellbeing, and a focus on the whole person
who is suffering rather than just on the collection of symptoms they may be experiencing.
Studies also suggest that the multi-dimensional and subjective nature of suffering,
variance depending on culture and context, and difficulty of explicitly articulating
suffering should be taken into account when considering its assessment.
Understanding of the religious, spiritual, cultural, clinical and individual factors that
impact the experience and expression of suffering is likely to inform clinical practice and
research. This extends beyond making presumptions solely on the basis of generalisations
about particular religions and cultures, but rather involves finding out what an individual’s
religious beliefs mean to them at a particular point in time. Support and training for
healthcare professionals is also likely to provide opportunities to explore their own
existential and spiritual values, offer supervision and debriefing, and review ways of
identifying and responding appropriately to both verbal and non-verbal expressions of
suffering.
A number of measures have been shown to have been found to be suitable to measure
the various analogues of suffering. Measures to assess suffering may be particularly useful
if they include subjective components (e.g. the PRISM, the SMiLE, the Hope DifferentialShort, and the single item “Are you at peace?”), and/or may need to be supplemented
by open questions and alertness to the non-verbal and verbal cues of the patient. Holistic
assessment rather than a narrow focus on individual symptoms, and the appropriateness
of any measure in the context in which it is intended to be used should be considered.
Information on the strengths, limitations and psychometric properties of available
measures is useful to consult when determining the appropriateness of measures of
suffering, its synonyms, and symptoms for use in any particular context. Such information
will enable users to make an informed decision about the appropriate measure for any
specific purpose, and/or may identify measures that might be further developed and
assessed for validity.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
181
Interpretation of results for psycho-educational interventions is difficult due to the small
amount of research conducted to date. It appears that spiritual wellbeing and
hopelessness may be impacted by psycho-educational interventions under some
circumstances, however findings were inconsistent, suggesting that further research
needs to be conducted before conclusions are drawn. Studies explicitly incorporating
and articulating a spiritual element to their interventions may yield more rigorous
conclusions about the impact of interventions specifically designed to improve spiritual
wellbeing and alleviate suffering. Sense of coherence may be a promising target for
interventions aimed at promoting meaning in the context of cancer, and future research
might further explore this possibility.
Meaning-centred interventions are a promising way to enhance meaning in advanced
cancer patients, although such interventions have not yet been shown to have a
significant impact on hopelessness, desire for death, and will to live. Further research and
clinical application should be alert to the danger of floor effects, and consider particular
subsets of patients who may benefit most from such interventions.
Interpretation of results for supportive-expressive interventions on outcomes assessing
suffering or its synonyms or symptoms is difficult due to the small amount of research with
these outcomes conducted to date. While interventions targeting advanced cancer
patients with some degree of ‘need’ (e.g. an experience of hurt that could be
addressed by forgiveness therapy) may be efficacious in enhancing hope, there was no
other evidence of an impact of other supportive-expressive interventions on selftranscendence, purpose in life, spiritual wellbeing, or hope.
Indeed, the evidence reviewed suggested that under some circumstances, supportiveexpressive interventions may actually have a negative impact on such outcomes,
relative to usual care. The large body of other evidence for the positive impact of
supportive-expressive interventions 290 suggests that it would be extreme to conclude that
supportive-expressive interventions are detrimental, although these studies highlight
particular circumstances in which their efficacy and potential for harm should be more
rigorously considered, particularly in the context of interventions with newly diagnosed
early stage breast cancer patients, delivered by alternate modalities (e.g. telephone or
internet), and/or reliant on peer support. Alternate explanations for these results (e.g.
compensatory rivalry) might also be explored in future research.
Stress-reduction interventions are a promising way of enhancing spiritual wellbeing and
meaning/benefit finding, particularly in women with early stage breast cancer, although
there is evidence that these findings may generalise to a wider population, with positive
results of such interventions also demonstrated in men with early stage prostate cancer.
Further research might further explore the issue of generalisability, and consider patient
characteristics (e.g. age, time since diagnosis, severity) that might be associated with
differential levels of benefit from such interventions.
Hope-centred interventions were found to be beneficial in enhancing hope in cancer
patients at different stages in the disease trajectory, and may also impact existential
wellbeing. Future research might focus on the extent to which such gains may be
maintained over time.
Further research appears to be required to evaluate the impact of such supportiveexpressive interventions on hope, spiritual wellbeing, self-transcendence and purpose in
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
182
life and psycho-educational interventions on sense of coherence and hopelessness.
Results exploring these outcomes are inconsistent, and this inconsistency appears to
reflect genuine uncertainty. The interpretation of results for spiritual interventions is difficult
due to the small amount of research conducted to date. It appears that spiritual
wellbeing may be impacted by interventions with explicitly spiritual content under some
circumstances, however findings were inconsistent, suggesting that further research
needs to be conducted before conclusions are drawn.
The results of this systematic review should be considered in the context of the included
patient populations, the statistical power of the studies and the identified limitations.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
183
8
Limitations
There are a number of limitations to the current review that should be acknowledged in
interpreting results.
First, the search strategy adopted for this review was designed so as to allow for the
synthesis of common elements across a number of concepts highlighted in the existing
literature as potentially synonymous with suffering. This allowed the review authors to
draw upon a wider range of relevant sources for the conceptualisation of suffering
presented in this review. Including existential and spiritual suffering/ distress allowed due
attention to be paid to an important and often overlooked dimension of suffering. The
review authors believe that this broad synthesis of the common elements of these
constructs enhances our understanding of the nature of suffering in the context of
cancer, however, these concepts should not always be seen as identical. Potentially
useful nuances of each individual concept have therefore not been fully explored in this
review.
Second, the search for measures and interventions focused on a list of ‘synonyms’ and
‘symptoms’ of suffering generated by an iterative review of the literature. This was
necessary due to the small number of interventions (n = 2) directly targeting suffering. This
strategy allowed for the consistent inclusion of any measure or intervention targeting
hope, meaning or spiritual wellbeing, and appeared the most reliable and parsimonious
of the possible search strategies identified. However, this strategy did mean that
interventions were excluded where they targeted more ‘conventional’ measures of
distress (e.g. anxiety, depression), and this review cannot offer any conclusions about
interventions targeting such outcomes. Outcomes such as self-efficacy and self-esteem
were also excluded, as although improvements in self-efficacy and self-esteem may be
associated with alleviation of suffering, its synonyms, and/or symptoms, these variables
themselves were not seen as synonymous or symptomatic of suffering.
Third, any qualitative synthesis contains an element of subjectivity. In the current review,
an initial list of themes was generated by one reviewer after reading a selection of
papers, and this was discussed and revised within the review working group. A second
reviewer then coded a selection of papers using this framework, and made further
modifications when new themes were identified. A different team of reviewers may have
reached different conclusions.
Fourth, holistic care in the cancer context involves not only the patient, but also the
family as the unit of care. The suffering of families and carers is deserving of attention,
however, feasibility constraints precluded addressing this important issue within the scope
of the current review.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
184
9
Conclusion
This report integrates research published between 1992 and 2012 to identify a number of
common elements found in the literature on suffering in the context of cancer, which
informed the conceptualisation of suffering as presented in this report. Interventions with
considerable promise for alleviating some of the symptoms of suffering include meaningcentred interventions, hope-centred interventions and stress-reduction interventions, with
mixed or substantially less evidence currently available to demonstrate the efficacy of
psycho-educational and spiritual interventions, and little evidence currently available
demonstrating the efficacy of supportive-expressive interventions (with the exception of
forgiveness therapy), creative and healing arts therapies, and other interventions.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
185
Appendix A
Suffering, its synonyms and symptoms
This list was formed through an iterative search process as outlined in section 3.1.2 above,
and was used to guide the development of the search strategy for the review.
Terms used synonymously with ‘suffering’
Concept
Suffering
Existential distress
Existential suffering
Existential pain
Spiritual distress
Spiritual suffering
Spiritual pain
Psycho-spiritual distress
Psycho-existential suffering
Total pain
Demoralisation
Potentially measurable ‘symptoms’ of suffering (and their ‘opposites’)
Concept
Hopelessness, despair
Loss of meaning
Sense of meaning/finding meaning
Sense of coherence
Purpose in life
Hope
Dignity
Transcendence
Spiritual wellbeing
Peace
Faith
Crisis of faith
Desire for [hastened] death
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
186
Appendix B
Table 26
Summary of studies conceptualising suffering
Summary of studies conceptualising suffering
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Abraham et al, 2006 308
Identify and
describe
characteristics of a
terminally ill
population that is
suffering without
acknowledging
significant distress
from physical
symptoms
48 hospice patients
with mixed
diagnoses and
physical symptoms
that were less than
“somewhat”
distressing
according to the
MSAS (71% cancer,
not further
specified)
Prospective
cohort study
Cites Cassel (1982) 18
Patients reporting lack of distress resulting from
physical symptoms did not necessarily report
lack of suffering because of physical
symptoms: symptom distress did not correlate
significantly with reported suffering because
of physical symptoms or overall suffering.
USA
46% female
Mean age 70
(range 33-91)
93% Non-Hispanic
White
Factors other than physical symptom distress,
such as diagnosis, age, and QOL appear to
affect the perception of suffering: compared
to patients reporting no–mild overall suffering,
patients reporting moderate–severe overall
suffering were more likely to have a noncancer diagnosis (83% vs. 57%, p = 0.05), be
younger (65 vs. 75 years, p = 0.02) and have
lower scores on the MQOL-psychological
subscale (6.4 vs. 8.0, p = 0.02) and overall QOL
scale (6.2 vs. 7.2, p = 0.04).
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
187
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Adelbratt et al, 2000 115
Explore whether
and to what extent
patients and their
next of kin
experience death
anxiety
20 patients with
malignant brain
tumours (grade IIIV); 15 next of kin
Qualitative
interviews
No explicit definition
presented
1) emotional reactions that could be related
to death anxiety and included general
anxiety, anguish, sadness, hope and despair
2) existential fear, existential anxiety and
existential pain
3) contradictions
4) trigger situations
5) coping strategies related to death anxiety
and
6) new values for life.
Qualitative
interviews
No explicit definition
presented
the field of force in cancer; subthemes:
1) ‘doubled’ suffering
2) an enduring surrounding and relief from the
suffering
3) suffering opens questions about life and
meaning
4) the suffering body
5) suffering related to healthcare received.
Sweden
Explore how these
experiences are
expressed
Mean age 44
(range 30-72)
40% female
Further details not
specified
Arman et al, 2002 23
Sweden/
Finland
Study the
experience of
suffering among
women with breast
cancer in different
care cultures as
described by those
women and their
significant others
17 women with
breast cancer (12
localised, 5
generalised); 16
significant others
Mean age 48
(range 35-69)
Mean 30 months
since diagnosis
(range 12-59)
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
188
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Arman et al, 2003 71
Review literature on
how the lived
experience of
breast cancer and
suffering was
described in
nursing/caring
literature between
1990 and 2000, and
to interpret and
discuss the result
from the
perspective of
suffering
N/A
Literature
review/
synthesis
No explicit definition
presented
1) having suffering
2) being suffering
3) becoming suffering.
Interpret and
understand the
meaning of
patients’
experiences of
suffering related to
health care from an
ethical, existential
and ontological
standpoint
16 women with
breast cancer (11
localised, 5
generalised)
Qualitative
interviews
No explicit definition
presented
1) ethical dimension: the caring relationship
that fails to materialise and the carer’s choice
2) existential dimension: not being regarded
as a whole human being with experiences
and needs
3) ontological dimension: an imperceptible
call for help in a disintegrating,
incomprehensible life.
Sweden/ Finland
Arman et al, 2004 87
Sweden/
Finland
Mean age 49
(range 35-69)
Note overlap
with 23
Mean 31 months
since diagnosis
(range 12-59)
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
189
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Barnes, 1994 13
Discuss V. E. Frankl's
(1965) 10 concept of
unavoidable
suffering and
illustrate (with case
studies) examples of
individuals
transcending their
suffering
A 34 year old
devoted family
man who
overcame the grief
of a bitter divorce
to fight for the
custody of his two
children
Case report(s)
No explicit definition
presented
Presents several case studies to illustrate
Frankl's concept of finding meaning in
unavoidable suffering.
Theoretical/
opinion piece
Suffering:
"... the existential dilemma
of what it is like to be
diagnosed with a lifethreatening illness and
what it is like to not have
the social, political, and
economic capital
available to deal with the
consequences of such a
diagnosis. The authors
posit that this is suffering"
1) suffering occurs disproportionately in
certain groups in our society
2) an individual’s experience of suffering is
historically, culturally, and socially located
3)spirituality and religion as resources that
help individuals cope.
USA
A wife with cancer
who comforted her
family
A 15 year old girl
with progeria who
chose to work with
small children in a
private nursery
Barton-Burke, 2008 61
USA
Highlight some of
the explicit and
implicit assumptions
that contribute to
suffering, focusing
on the sociopolitical and
economic
dimensions of the
problem and the
spiritual/ religious
dimension as one
solution
N/A
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
190
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Berlinger, 2007 65
Comment on case
studies presented
by Pautex & Zuilan,
2007 309, and Taylor
& McCann, 2005 310,
as well as guidelines
of American
College of
PhysiciansAmerican Society of
Internal Medicine
(ACP-ASIM) End-ofLife Care Consensus
Panel 311
An 84 year old
women diagnosed
with an aggressive
glioblastoma with
marked asthenia,
anorexia, anxiety,
and right-side
weakness
(Mrs D)
Theoretical/
opinion piece
Suffering:
“By the time Mrs. D.’s
clinical team convenes to
discuss the possibility of
palliative sedation,
it is clear that she is
suffering, although she is
not in physical pain and
can walk, eat, and
drink. She is anxious,
agitated, and unable to
communicate clearly. She
believes her life has been
drained of hope and
meaning. And she is rather
‘irritated’ about all this.”
There is uncertainty about what existential
suffering is and how it should be handled.
USA
Advocates that
'existential' suffering
be taken seriously
A 78 year old dying
women who,
although not in
pain, is suffering
from the
uncontrolled
growth of a facial
tumour
Professional chaplains should be involved in
all aspects of care at the end of life.
All healthcare professionals should be
involved in ongoing discussions about what
‘existential suffering’ is and what ought to be
done for the suffering person if palliative
sedation is not appropriate.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
191
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Blinderman, 2005 2
Qualitatively assess
existential distress in
an ethnically,
culturally and
religiously
heterogeneous
oncology
population in Israel
40 patients with
mixed cancer
diagnoses
(38% breast)
Qualitative
interviews
Draws upon Kissane’s
definition of
demoralisation syndrome
as a ‘psychiatric diagnosis
of existential distress’ 312
Determine the
extent to which
existential concerns
were present, how
they were
manifested and to
what degree they
caused distress
60% Secular Jews;
20% Orthodox Jews;
12.5% Muslim; 7.5%
Christian
Participants discussed existential concerns in
the following categories:
1) autonomy
2) dignity/body image
3) social isolation
4) coping mechanisms/support
5) guilt/past disappointments
6) spiritual health
7) meaning
8) hope
9) death/dying
Israel
63% female
Age range 41-88
55% born in
Palestine or Israel;
27.5% European
descent; 10% North
Africa; 7.5% Asia
Despite the prevalence of existential
concerns, manifest existential distress was
relatively uncommon in this patient group.
Majority 0-5 years
post-diagnosis
Majority receiving
palliative, adjuvant
or curative chemo
and/or radio
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
192
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Body, 2012 64
Explore some of the
assumptions that
are made in
defining and
addressing ‘pain’
N/A
Theoretical/
opinion piece
Suffering:
“Compared to ‘pain’,
‘suffering’ is a far broader
term, encompassing that
complex function of our
entire consciousness,
which depends on a
subjective experience (or
symptom, ‘painful’ or
otherwise) and its
interpretation by or
significance to the
bearer”
1) current approach to pain relies heavily on
addressing ‘nociception’ but does little to
address the ‘suffering’ that is undoubtedly the
key determinant of wellbeing in patients
2) the current naturalistic approach risks
neglecting many non-nociceptive’ sources of
suffering (e.g. nausea, vomiting)
3) calls for emergency physicians to take a
more holistic approach to meeting patient
needs.
N/A
Literature
review/
synthesis
No explicit definition
presented
Describes existing psychotherapeutic
interventions for spiritual suffering (e.g.
spirituality based interventions with a focus
typically on meaning and/or selftranscendence) and a novel meaningcentred group psychotherapy for advanced
cancer patients.
UK
Explore whether it is
truly ‘nociception’
or ‘suffering’ that
ought to be
addressed
Breitbart, 2002 11
USA
Review the topics of
spirituality and endof-life care
Review existing
psycho-therapeutic
interventions for
spiritual suffering
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
193
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Breitbart et al, 2004 12
Review the
foundations of
meaning and
spirituality at the
end of life,
existential issues
occurring in the
context of lifethreatening illness,
spirituality in terms
of patient suffering,
and interventions
integrating
meaning and
spirituality into endof-life care
N/A
Literature
review/
synthesis
No explicit definition
presented
Describes interventions for spiritual suffering in
the terminally ill that focus on increasing
patients’ sense of meaning and purpose in
life.
Clarify working
definitions of pain
and suffering and
to show how
negative emotion
and stress link these
two phenomena
N/A
USA/ Canada
Chapman et al, 1993 66
USA
Note overlap
with 11
Reviews meaning-centred group therapy as
one such novel modality that has successfully
integrated themes of meaning and spirituality
into end-of-life care.
Explores spiritual and existential themes
through this meaning-oriented approach that
encourages dying patients to find meaning
and purpose in living until their death.
Literature
review/
synthesis
Suffering:
“is a complex negative
affective and cognitive
state characterized by
perceived threat to the
integrity of self, perceived
helplessness in the face of
that threat, and
exhaustion of
psychosocial and
personal resources for
coping”
The underlying physiology of suffering and
pain indicates that mechanisms of negative
emotion and stress link these phenomena.
Clarifying the physiological basis of pain helps
clarify the physiological basis of suffering and
indicates that, although pain is not often the
only source of suffering, it leads to a stress
response which, when prolonged, can lead to
disequilibrium. Its control is significant for
relieving suffering from all causes.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
194
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Chapman et al, 1995 75
Address problem of
unrelieved suffering
at the end stages of
terminal illness
N/A
Literature
review/
synthesis
As per 1993 paper 66
Suffering in the dying patient derives from
immediate sources of physical distress,
perceived threats to the integrity of the self,
and the psychological make up (memory,
beliefs, expectations) of the individual at the
end of life. Identifying and meeting multidimensional patient needs can contribute
substantially to the comfort of the patient.
Discuss a clinically
relevant definition
of suffering and a
taxonomy of
suffering which can
serve as a
framework for
diagnosis,
therapeutic
interventions and
ongoing scientific
communication
N/A
Literature
review/
synthesis
Suffering:
“can be described as an
aversive emotional
experience characterized
by the perception of
personal distress that is
generated by adverse
factors undermining the
quality of life”
The defining characteristics of suffering
include:
1) the presence of perceptual capacity
(sentience)
2) that the factors undermining quality of life
are appraised as distressing
3) that the experience is aversive.
Apply 1994
framework to the
management of
patients who
request euthanasia
or physicianassisted suicide
N/A
Literature
review/
synthesis
As per 1994 paper 76
The request for euthanasia or assistance in
suicide usually derives from severe patient
distress and indicates significant suffering.
When other options to effectively relieve
suffering are available, euthanasia and
assisted suicide fall outside of the purview of
Hippocratic medicine. The current community
focus on the issue of inadequately relieved
suffering should be harnessed to work toward
the provision of care that would diminish the
impression that elective death is necessary to
ensure adequate relief.
USA
Cherny et al, 1994 76
USA
Cherny, 1996 34
Israel
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
195
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Cherny, 2006 33
Review indications
and applications for
sedation in
palliative care
N/A
Literature
review/
synthesis
No explicit definition
presented
The use of sedation as treatment for existential
distress is controversial because by nature of
the symptoms addressed it is difficult to
establish that they are truly refractory.
Address two areas
that were not
specifically noted in
Holland and Alici’s
(2010) 313 review of
distress
management in
cancer
N/A
Theoretical/
opinion piece
Demoralisation:
“results from an awareness
of being unable to cope
with a pressing problem or
from having failed to meet
one’s own expectations or
those of others. It is
characterised by feelings
of helplessness,
hopelessness, subjective
incompetence, and a loss
of control”
Losing one’s sense of meaning and purpose
and experiencing life as redundant or futile
are important sources of distress contributing
to the loss of the will to live.
Israel
Cherny, 2010 77
Israel
Important to be aware of additional sources
of distress (e.g. spiritual distress,
demoralisation), and therapeutic modalities
to address them.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
196
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Chio et al, 2008 24
Explore the lived
experiences of
spiritual suffering
and the change
mechanism in
healing processes
among Taiwanese
patients with
terminal cancer
21 patients with
terminal cancer
Qualitative
interviews
Spiritual suffering:
“cancer patients
experienced spiritual
suffering because their
perceptions of suffering
from cancer as a death
sentence threatened the
meanings and purposes of
their existence ...
manifestations of spiritual
suffering included
emotional aspects
(feelings of fear, sadness
and hopelessness) and
thought aspects
(pessimistic feelings of
wanting to die early and
negative thoughts about
self)”
Suffering:

Feeling distressed because of physical
pain

Pessimistic thoughts about wanting to die

Lack of support

Feeling a fear of death

Feeling sad and hopeless because of
disability problems/ lack of support from
some family members or friends

Sense of guilt for being the family’s
burden

Self-blame for doing wrong things.
Taiwan
Mixed cancer types
Mean age 55
(range 37-76)
63% female
Religion:
22.2% Buddhist
27.8% Taoism
5.6% Yit-Kuan Tao
22.2% folk religion
16.7% Christian
5.6% not religious
Further details not
specified
Healing:

Passive attitudes towards life meanings

Being empowered and having a better
feelings through encouragement from
family, friends and/or other cancer
patients

Sense of being protected through
practising religious Worship

Feeling released through patients
practising beliefs of letting go and living in
the moment

Gaining positive view of life meanings
through searching for religious and other
explanations

Being self-transcendent through helping
other cancer patients.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
197
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Chochinov, 2003 78
Introduce the
dignity model in the
terminally ill which
provides the
theoretical
foundation for
dignity
psychotherapy
Professional violist
diagnosed with
squamous cell
cancer at 72;
referred by headand-neck surgeon
for psychiatric
consultation 6
months after a base
tongue resection
and left neck
dissection, with
reference to
depressive
symptoms, sleep
disturbance, and a
general request for
further follow up
and treatment
Case report(s)
No explicit definition
presented
Helping patients to find a sense of purpose,
meaning, and dignity requires us to step
outside of the box and develop a model of
palliation that incorporates the patients’
experience in its entirety.
Introduce dignity
psychotherapy
A 67 year old man
with an end stage
gastrointestinal
malignancy who
had decided he no
longer wished to go
on living and gone
on a hunger strike
Case report(s)
No explicit definition
presented
Validation of patient concerns and ascribing
meaning to their experience by caregivers,
according to the dignity model, can bolster
hope in dying patients.
Canada
Chochinov, 2004 314
Canada
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
198
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Chochinov, 2007 97
Examine ‘‘burden
to others’’ and
clarify its
relationship with
various
psychosocial,
physical, and
existential issues
arising in patients
who are terminally ill
211 patients mixed
cancer:
26% lung
24% GIT
11% genitourinary
13% breast
7% haematological
19% solid tumours
Cross-sectional
study
No explicit definition
presented
Predictive for burden to others were
hopelessness, current quality of life,
depression, and level of fatigue.
There was no association between sense of
burden to others and actual degree of
physical dependency.
Feeling a sense of burden to others is
common among dying patients. Although
40% of the sample reported little in the way of
sense of burden to others, the remainder
endorsed higher degrees of burden-related
distress, with 23% scoring within the most
severe range. The lack of association
between ‘‘sense of burden to others’’ and
the degree of physical dependency suggests
this perception is largely mediated through
psychological and existential considerations.
Canada/ Australia
123 inpatients and
88 outpatients
Median length of
survival from the
time of study entry
to death was 52
days
Mean age 67
57% female
46% Protestant
26% Catholic
2% Jewish
15% Other
11% no religious
affiliation
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
199
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Chou, 2007 25
Look into the life
attitudes of patients
with
NPC and the
treatment-related
issues that influence
the suffering
experienced by
persons with cancer
10 cancer centre
patients who had
undergone
treatment for
nasopharyngeal
carcinoma
Qualitative
interviews
No explicit definition
presented
Nasopharyngeal carcinoma patients can:
1) build their confidence to survive and learn
to embrace life,
2) develop a new love for self and others,
3) reinterpret their attitudes toward suffering
and death, and
4) achieve life meaning by transcending their
ego.
Taiwan
Mean age 42.5
(range 24-64)
The real aim of human existence is essentially
self transcendence.
30% female
70% Buddhist
20% Christians
10% no stated
religion
Further details not
specified
Clarke et al, 2002 38
Australia
Examine the validity
of the construct of
demoralisation
N/A
Literature
review/
synthesis
Demoralisation:
“not simply a syndrome of
symptoms – of mixed
depression and anxiety –
but a personal experience
of not coping and not
knowing what to do; a
frightening experience
that attacks one’s selfefficacy and esteem”
Although sharing symptoms of distress,
demoralisation is distinguished from
depression by subjective incompetence in the
former and anhedonia in the latter.
Demoralisation can occur in cancer
patients who are not depressed.
Hopelessness, the hallmark of demoralisation,
is associated with poor outcomes in physical
and psychiatric illness, and Importantly, with
suicidal ideation and the wish to die.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
200
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Cockram et al, 2010 40
Evaluate the
relationship
between
depression and
subjective
incompetence at
different levels of
perceived stress
and social support
71 outpatients with
colorectal or
gastrointestinal
cancer
Cross-sectional
study
Demoralisation:
“has been described as
the state of mind of a
person deprived of spirit or
courage, disheartened,
bewildered, and thrown
into disorder or confusion”
Depression and subjective incompetence are
separate components of demoralisation.
Refers to Saunders’ (1967)
model of ‘total pain’ 49
Pain is a perception rather than a sensation.
(Melzack)
USA
Mean age 61.87
(range 28-85 )
Subjective incompetence is the clinical
hallmark of demoralisation.
38% female
94.4% while
2.8& black
2.8% Hispanic
Further details not
specified
Cohen et al, 2000 16
Canada
Describe how QOL
of people with lifethreatening illness is
affected by pain,
and how pain is
affected by all
aspects of QOL
N/A
Literature
review/
synthesis
Not only does pain affect all aspects of the
person, but all aspects of the person can
contribute to the perception of pain, i.e.
bidirectional influence.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
201
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Cohen et al, 2004 26
Describe the
meaning of
experiences for
patients that
masquerade pain
as other symptoms
10 patients with
advanced cancer
(mixed) in palliative
care service
Qualitative
interviews
No explicit definition
presented
Usefulness outlived.
Death awareness (actively fighting, anger
with, sadness with).
Unwilling to take medication (cancer as a
new experience – patient views self as
healthy, patients minimise pain,
distraction/limiting activity,
side-effects unacceptable, labelled
experience as other than pain).
USA
Mean age 62
(range 39-92)
50% female
2 Hispanic, 8
Caucasian
The meaning of symptoms
clearly altered patients’ reports
and limited treatments they found
acceptable.
Further details not
specified
Patients may have significant nociceptive
pain and little pain expression.
Cooper, 2011 104
USA
Describe an
oncology
chaplain’s pastoral
relationship with a
patient
A 64-year-old
woman who had
been diagnosed
with incurable
metastatic
breast cancer five
years previously
Case report(s)
No explicit definition
presented
Patient needs:

Spiritual struggle; i.e. fear of God=fear of
death

Loneliness in her spiritual struggle

Grief that her life was too short (i.e. ‘dying
before she was ready’)

Estrangement from the God of her
inherited faith tradition.
Oncology chaplains have a unique role in the
healthcare team as those whose primary role
is to provide care for the patient in spiritual
distress.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
202
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Coward et al, 2004 27
Describe the
experience of
restoring and
maintaining spiritual
equilibrium in
women newly
diagnosed with
breast cancer
10 women initially 15 months from
diagnosis with
breast cancer in
urban breast
cancer resource
centre
Qualitative
interviews
Spiritual disequilibrium:
“is characterized by fear
of dying and of other
unknowns associated with
cancer and a sense of
aloneness in a struggle to
maintain current selfidentity“
Disequilibrium triggered all participants to
reach outwardly for information and support
from other people and faith resources and to
reach inwardly to examine life values. Shortly
after diagnosis, and continuing throughout
the study period, most participants also
reached outwardly to support others and
conduct breast cancer advocacy work.
Resolving spiritual disequilibrium for women
with newly diagnosed breast cancer means
restoring a sense of connection to self, others,
and/or a higher power. Self-transcendence
views and behaviours evolving over time help
women to restore their sense of
connectedness, maintain hope for a future,
and find renewed purpose and meaning.
Theoretical/
opinion piece
No explicit definition
presented
Moment of awareness for most patients when
the reality and inevitability of one’s own
personal death sinks in – named by the author
as the ‘existential slap’. Mechanism of
revelation is not well understood. It
precipitates a crisis for the patient.
USA
All received chemo
and/or radio
Mean age 54.5
(range 40-71)
80% Caucasian
10% Asian American
10% African
American
Further details not
specified
Coyle, 2004 112
USA
Discuss death
awareness in
cancer patients
N/A
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
203
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Daneault et al, 2006 19
Explore terminally ill
patients’
perceptions of their
own suffering in
order to describe,
from
these patients’
perspective, some
elements of
healthcare
providers’ response
to suffering
26 patients
diagnosed with
terminal
cancer(mixed) 19%
breast
19% lung
Qualitative
interviews
No explicit definition
presented
Healthcare services are perceived as a
battlefield where physicians and patients are
engaged in a losing struggle to ward off illness
and death.
Both physicians and patients engage in
avoiding scepticism and muffling distress. The
unavoidable avowal of powerlessness in the
face of terminal disease is perceived as
capitulation and therapeutic abandonment.
Budgetary restraints and understaffing, along
with a pervasive culture that implicitly
denies death, produce an environment
conducive to the avoidance of suffering.
Suffering avoidance contributes to increased
suffering in patients.
Canada
Age range 33-91
61.5% female
2 weeks – 96
months between
diagnosis of
incurability and
interview
Themes relating to patients’ dealings
with healthcare services were summarised
into 5 main categories:
1) initial shock
2) battle against cancer
3) paradox of increased suffering
4) final abandonment
5) positive aspects of healthcare services.
Further details not
specified
Dettmore et al, 2011 119
USA
Describe how an
expert nurse
responded to
unrelieved suffering
and offer insight
into ways of being
present for patients
and families
A 54-year-old male
diagnosed with
pancreatic cancer
6 months earlier
who refused
conventional
medical treatment
Case report(s)
No explicit definition
presented
When faced with patients who suffer in ways
that staff cannot readily ‘fix’, or faced with
situations that make staff feel helpless, nurses
can respond best with stillness rather than
busyness and provide the space to hear what
patients and families cannot articulate. Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
204
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Duggleby, 2000 116
Identify, describe
and generate a
theoretical analysis
of the pain
experience of
elderly hospice
patients with
cancer
11 rural hospice
patients with
advanced cancer
and experiencing
pain
Qualitative
interviews
Suffering:
“is the basic social
problem of pain”
Dealing with suffering by enduring.
Enduring has two sub-processes:
1) maintaining hope (trusting in a higher being
and finding meaning)
2) adjusting (dealing with uncertainty,
accepting, and minimising pain).
USA
Mixed cancer
45% lung
18% rectal
9% each uterine,
breast, TCC and
brain
Mean age 73.2
(range 66-80)
55% female
91% Caucasian
9% African
American
91% Protestant
9% No preference
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
205
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Edwards et al, 2010 56
Synthesise
qualitative literature
on spirituality and
spiritual care at the
end of life using a
systematic (‘metastudy’) review
N/A
Literature
review/
synthesis
No explicit definition
presented
Spiritual distress:
1) was mixed with and impinged on physical,
psychological, social and financial distress, or
present as physical discomfort used to
legitimise increased health service utilisation
2) was hard to distinguish, even by
‘experienced palliative care providers’
3) was manifested as fear, especially fear of
death, which was often manifested at night;
or feelings of hopelessness with a lack of
meaning or purpose
4) could be caused by loss or expressed as
feelings of loss; relationship difficulties and
current or projected breaks in relationships
with significant others, or healthcare givers
caused distress; a break from normality or in
patients’ expectations; unmet spiritual needs
5) creating the environment for patients and
their informal caregivers to discuss spiritual
issues, providing openings for expression of
fears, doubts and anxieties, could help
prevent spiritual needs becoming spiritual
distress.
UK/ Hong Kong
Isolated symptomatic treatment, without care
for the underlying spiritual distress, would in
turn lead to disempowerment, reducing
patients’ sense of control, and further unmet
needs in a vicious circle.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
206
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Ekwall et al, 2007 100
Elucidate women’s
experiences
of living with
diagnosis of
recurrent ovarian
cancer
12 female ovarian
cancer patients
who were
undergoing or had
just completed
chemotherapy, 5 to
10 months (mean 7
months) after
learning of the
recurrence (stages
IC-IIIC)
Qualitative
interviews
No explicit definition
presented
Living in Limbo: a phase of a health-illness
transition characterised by loneliness and
existential struggle
1) being denied one’s future while
simultaneously hoping to be able to delay the
cancer’s advancement (preparing
themselves both for a continued life and for
death)
2) feeling alienated from both oneself and
one’s surroundings (unknown disease status)
3) being responsible (maintaining a mental
preparedness to receive bad news).
Theoretical/
opinion piece
Cites Cassel (1982) 18
1) the meaning of cancer and the human
experience of suffering (cancer is an allconsuming experience which alters the
meaning of life for pt and family)
2) the measurement of QOL (challenge of
capturing pt suffering)
3) QOL and the sanctity of life (struggle for
survival can overshadow the concern for
QOL)
4) the family perspective of QOL (family
should be included in assessment)
5) the nurse’s impact on QOL (can
contribute).
Sweden
Age range 50-74
Ferrell, 1993 20
USA
Explain five issues
related to quality of
life in cancer
patients
N/A
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
207
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Ferrell et al, 2008 21
Describe the nature
of suffering and the
goals of nursing
N/A
Literature
review/
synthesis
Cites Cassel (1982) 18
The 10 basic tenets of suffering:
1) suffering is a loss of control that creates
insecurity
2) in most instances, suffering is associated
with loss, which leaves a person diminished
and with a sense of brokenness
3) suffering is an intensely personal experience
4) suffering is accompanied by a range of
intense emotions
5) suffering can be linked deeply to
recognition of one’s own mortality
6) suffering often involves asking the question
“why?”
7) suffering often is associated with separation
from the world
8) suffering often is accompanied by spiritual
distress and a sense of hopelessness
9) suffering is not synonymous with pain but is
closely associated with it, pain that persists
without meaning becomes suffering
10) suffering occurs when an individual feels
voiceless.
USA
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
208
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Frank, 2001 98
Based on the work
of Dorothy Smith,
argue that the
rhetoric of social
science
inadvertently
increases suffering
because it attempts
to organise local
experience within
extralocal
categories
N/A
Theoretical/
opinion piece
Suffering:
“resists definition because
it is the reality of what is
not”
Suffering involves experiencing yourself on the
other side of life as it should be, and nothing –
no material resource – can bridge that
separation. Suffering is the unspeakable.
Suffering is loss, present or anticipated, and
loss is another instance of no thing, an
absence. At the core of suffering is the sense
that something is irreparably wrong with our
lives.
Sociological research of suffering risks
organising local experience into extra local
categories in which the subjects’ lives and
their suffering effectively disappear.
The author proposes that the task of research
is to specify the conditions that cause
suffering so that these conditions can be
changed to lessen suffering. It is not to
pretend to know the other’s suffering. It is not
explaining subjects’ behaviour to experts but
explaining social systems to subjects so they
can understand the powers in which their lives
are embedded.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
209
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Georges et al, 2006 35
Investigate the
background and
evolution of
requests to forgo
treatment and
hasten death in
terminally ill cancer
patients
85 medical
specialists,
describing 85
patients with a
diagnosis of cancer,
and a probable life
expectancy of
1-12 weeks
Qualitative
interviews
No explicit definition
presented
The prevalence of requests involving end-oflife decisions increased during the last 3
months of a patient’s life. The evolution of a
request was especially related to an increase
in the number of severe symptoms and
concerns. Requests to forgo treatment were
related to general weakness, whereas loss of
dignity was a major reason for requests to
hasten death. Physical suffering alone
appeared to lead to less drastic requests than
suffering blended by concerns and
psychological problems leading to requests
for hastened death.
Spiritual distress:
“disturbance in a person’s
ability to find meaning
and purpose in life”
[citing the Pocket Guide
to Nursing Diagnosis, 1984
316]
Defining characteristics of spiritual distress, as
found in nursing diagnosis, were present in all
cases, including actual or anticipatory grief.
The Netherlands
Follow-up
questionnaire
Mixed cancer
types: 32% gastroint;
29% respiratory
13% hematologic
12% breast
Age: 67% 45-75
46% female
Further details not
specified
Georgesen et al, 1996 315
USA
Outline how the
threat of cancer
and presence of
pain compound
suffering and lead
to spiritual distress
Present a nursing
strategy to deal
with the responses
of clients and
families in such
complex situations
A 42-year-old
woman newly
diagnosed with
stage IV lung
cancer
A 58-year-old
married man
Case report(s)
Interventions included grief and spiritual
counselling, crisis intervention, cognitive
reappraisal, reminiscence therapy, presence,
and active listening to promote integration of
the body, mind and spirit.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
210
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Grant et al, 2004 107
Ask patients with
life-limiting illness to
describe their
spiritual needs and
how these needs
may impinge on
their physical,
psychological, and
social wellbeing
20 patients in their
last year of life: 13
patients with
advanced cancer
(mixed) and 7 with
advanced nonmalignant illness;
each patient’s
general practitioner
Qualitative
interviews
No explicit definition
presented
Patients’ spiritual needs centred around their
loss of roles and self-identity and their fear of
dying. Many sought to make sense of life in
relation to a non-visible or sacred world. They
associated anxiety, sleeplessness, and despair
with such issues, which at times resulted in
them seeking support from health
professionals. Patients were best able to
engage their personal resources to meet
these needs when affirmed and valued by
health professionals.
UK
55% female
Age range 57-100
40% religious
contact
20% nominal
40% no religious
contact
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
211
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Handzo, 1996 117
Explain the role of
the chaplain in the
cancer context as
care for the human
spirit
N/A
Theoretical/
opinion piece
Suffering:
“pastoral counsellors view
spiritual or existential
suffering as the core of the
experience of suffering.
The focus from a
chaplain’s vantage point
is spiritual distress, a
deeper disease than
anxiety or depression,
which has roots in the soul
of the individual”
1) hope and suffering: role of chaplain is to
engender hope and guide patient through
exploration of meaning
2) spiritual assessment of the patient;
3) spiritual care of the patient.
USA
“The word ‘suffer’ literally means ‘to endure
more’.”
“Whether an experience qualifies as suffering
depends essentially on the meaning that a
person gives to it.”
Spiritual distress:
“disruption in the life
principle which pervades
a person’s entire being
and which integrates and
transcends one’s
biological and
psychosocial nature”
[citing the Pocket Guide
to Nursing Diagnosis, 1987
317]
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
212
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Hirai et al, 2003 79
With regard to
integrated care for
existential suffering
in palliative care:
1) explore the
underlying structure
of
psychosocial
interventions
recommended by
specialists;
2) identify the
professionally
perceived
effectiveness of
each intervention
for specific
existential distress;
3) examine the
effects of specialty
on their
recommendation
146 (21%)
psychiatrists, mean
age 46.7, 20%
female
45% Buddhist
8% Christian
3% Shinto
43% no religion
Cross-sectional
study
No explicit definition
presented
To effectively alleviate existential suffering in
terminally ill cancer patients, an integrated
care by an interdisciplinary team is necessary.
Japan
42 (36%)
psychologists, mean
age 46.1, 52%
female
43% Buddhist
12% Christian
2% Shinto,
36% no religion
268 (72%) palliative
care nurses, mean
age 34.8, 98%
female
26% Buddhist
16% Christian
0% Shinto
54% no religion
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
213
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Horgan et al, 2011 129
Regarding positive
change after
diagnosis of breast
cancer, explore:
when women first
notice positive
changes; what they
consist of; how they
emerge from which
aspects of the
experience of
breast cancer; and
what social and
individual factors
are likely to
influence their
development
20 breast cancer
patients
Qualitative
interviews
No explicit definition
presented
Most women experienced several positive
changes as a result of their breast cancer.
Analyses suggested that changed priorities in
life and increased empathy for others
emerged from the patients’ reflections upon
the suffering they endured during their illness.
By contrast, increased self-confidence
appeared to emerge from reflecting on how
they managed their illness, and from
concluding that they had been courageous
in doing so. Factors promoting reflections
included acceptance of breast cancer,
ending treatments, and communication from
others that emphasised rather than minimised
the personal significance of cancer.
UK
Mean age 53
(range 32–75)
Mean 4.67 yrs since
diagnosis
(range 3 months 28 years)
Majority (55%)
advanced cancer
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
214
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Hui et al, 2011 17
Determine the
frequency and
factors associated
with spiritual distress
in patients with
advanced cancer
admitted to the
acute palliative
care unit
113 consecutive
patients with
advanced cancer
admitted to an
acute palliative
care unit
Cross-sectional
study
Cites Saunders’ definition
of total pain 28, 318
44% patients had spiritual distress. In univariate
analysis, patients with spiritual
distress were more likely to be younger, to
have pain and depression compared to those
without spiritual distress. Spiritual distress was
associated with age and depression in
multivariate analysis.
Theoretical/
opinion piece
No explicit definition
presented
Many factors in hospital life can prevent those
with serious illness from expressing their
anguish. Listening has a role to play in
changing silent suffering into expressive
suffering allowing a person to reach an
autonomous self and so an authentic voice.
This allows the patient to cope with their
situation.
USA
40.9% female
83.6% Christian
19.1% African
American
14.5% Hispanic
62.7% Caucasian
6.1% Asian
Further details not
specified
Jones, 1999 122
UK
Argue that the
authentic voice of
suffering can be
denied to people
with serious illness
A 52 year old
woman postsurgery for cancer
of the vulva
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
215
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Kahn et al, 1995 57
Discuss suffering as
a possible meaning
of cancer for
patients and family
members
A 28 year old man
in first relapse of
acute
nonlymphocytic
leukaemia
admitted for BMT
Case report(s)
No explicit definition
presented
Eight aphorisms of suffering:
1) suffering is a private, lived experience of a
whole person, unique to each individual
2) suffering results when the most important
aspects of a person’s identity are threatened
or lost
3) because suffering is dependent on the
meaning of an event or loss for the individual,
it cannot be assumed present or absent in
any given clinical situation
4) possible sources of suffering are countless
5) the expression of suffering is more
accessible to nurses than the experience
6) as a fundamental human experience,
suffering has a structure
7) the experience of suffering involves the
person in a larger process that includes the
person’s own coping with suffering and the
caring of others
8) the caring environment in which processes
of suffering can occur can influence a
person’s suffering either positively or
negatively.
USA
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
216
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Kappeli, 2000 113
Study the potential
influence and
significance of
Jewish and
Christian patients’
religion on their
coping with cancer
100 patients with
mixed cancer
diagnoses
Qualitative
interviews and
document
analysis
Draws on Lauer et al’s
conceptualisation of
suffering 319, and:
“included both the
spontaneous initial
encounter of a person
with a painful experience
as well as the experience
of duress and sorrow
which has been reflected
upon”
For most patients, being diagnosed with
cancer was an existentially shattering
experience that triggered a search for
religious meaning. There were no differences
in religious coping that were directly related
to the patients’ religious affiliation. Religion
continues to be a potentially powerful source
of strength and hope.
Switzerland
Age range 20-96
60% female
71% Christian
29% Jews
Further details not
specified
Kappeli, 2005 136
Switzerland
Study religious
coping styles
among Christian
and Jewish patients
suffering from
cancer. In addition,
the empirical results
were compared
with the Jewish and
Christian traditions
of suffering
100 patients with
mixed cancer
diagnoses
Age range 20-96
”Both types of experience
of suffering are
characterized by
subjectivity and by cultural
norms”
Qualitative
interviews
Note overlap
with 113
No explicit definition
presented
Five coping strategies:
1) stories of retaliation and return
2) stories about wrestling (with God)
3) stories of mercy
4) apocalyptic stories
5) stories of mystical transfiguration.
60% female
71% Christian
29% Jews
No significant difference was found between
groups.
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
217
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Kawa et al, 2003 114
Improve our
understanding of
the spiritual distress
of terminally ill
cancer patients in
Japan
11 palliative care
unit inpatients
Qualitative
interviews
No explicit definition
presented
Consciousness of the gap between the
patient’s aspirations and the present situation
were found to cause gap-induced distress.
Distress was classified into three categories:
1) distress due to the gap between the
present situation and how the individual
wanted to live
2) how the individual wished to die
3) the individual’s wish to maintain relations
with others.
Japan
Mixed cancer
types: 27% breast;
18% lung; 18%
rectum
54.5% female
Mean age 60.1
(range 49-85)
Patients who possessed pictures of how they
wished to die as their “anchors in life” and
who were in a severe physical condition,
experienced increased distress and became
confused after their physical symptoms were
relieved following admission to PCU.
Further details not
specified
Klemm et al, 1996 320
USA
Present a template
for exploring
cervical cancer
patient problems
from a life stage
(developmental)
perspective
N/A
Literature
review/
synthesis
Spiritual distress:
“a state in which the
individual or group
experiences or is at risk of
experiencing a
disturbance in the belief or
value system that provides
strength, hope, and
meaning to one’s life”
[citing the Handbook of
Nursing Diagnosis, 1993,
321]
Faith is connected to psychosocial
development. Women with cervical cancer
may be in one of three developmental
stages, each with specific life tasks to
accomplish. This natural development may
be stunted by the rigours of dealing with a
life-threatening illness such as cervical cancer.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
218
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Kohwles et al, 2001 93
Describe how
experienced
physicians assess
and respond to
requests for assisted
suicide
20 physicians:
11 AIDS specialists
1 hospice physician
8 oncologists
Qualitative
interviews
Existential suffering:
“a patient’s loss of selfimage as a person or a
feeling that his or her
meaningful life is over”
Sample physicians believed that the most
common cause of serious, durable requests
for assisted suicide was existential suffering.
These requests created feelings of
inadequacy in the physicians and were most
likely to lead to provision of a prescription to
the patient.
Describe the nature
and content of
experiences of
suffering by patients
with incurable
cancer
32 patients with
incurable cancer
(mixed)
Qualitative
interviews
Suffering:
“widely defined as a
negative, undesirable
experience”
Three different dimensions were identified in
patient experiences of suffering: physical,
psychologic and social.
The majority of patients (87.5%) felt suffering
had some meaning in their lives.
Each description of suffering was unique.
USA
Kuuppelomaki et al, 1998
84
Finland
66% female
Mean age 63
(range 28-77)
50% diagnosed
within past year
(range 1wk-10 yrs)
63% sample died
within 9 months of
study
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
219
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Langegard et al, 2009 52
Increase
knowledge of what
patients with
incurable cancer
have found
consoling during
the course of the
disease
10 patients with
cancer (mixed)
Qualitative
interviews
Suffering:
“is alien to the patient and
is seen as a threat to
personal identity, integrity,
and communion. Suffering
disconnects patients from
themselves, other people,
the surrounding world,
and spiritual meaning”
Four categories emerged from the interview
data:
1) connection
2) self-control
3) affirmation
4) acceptance.
Sweden
80% female
Age range 30-90
2mths - 10 yrs postdiagnosis
Further details not
specified
Study based on Ericksson’s
(1994) theory of human
suffering as a solitary
absolute
experience of facing pain
322
The core variable of the study was developed
and defined as “being seen.” To be seen and,
therefore, consoled results from experiencing
a sense of connection, self-control,
affirmation, and acceptance. To be consoled
is a step toward increased wellbeing. When
patients feel their suffering is seen and
understood by another person, they are filled
with relief.
A caregiver can bring consolation to a
patient without having a long-established
relationship. Mental presence is more
important than touch and the act of listening
is most important. Courage is needed to be
with the patient during the most difficult times.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
220
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Lee et al, 1999 323
Discuss nursing
practice with
persons who are
living their dying,
from the
perspective
of Parse’s theory of
human becoming
A 46-year-old
women with end
stage metastatic
rectal cancer
receiving palliative
care
Case report(s)
Suffering:
“’a profoundly complex
human experience’ that
cannot be ‘controlled’ by
medical interventions”
[Draws on Gregory &
English, 1994 324]
Caregivers should be open
to the suffering of another, without trying
to control it.
South Korea/ Canada
“reflects one’s choice of
‘the meaning of one’s
situatedness, at the prereflective and reflective
realms of being all-atonce. It is the contextual
living of personal values’”
[Citing Daly, 1995 325]
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
221
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Lee et al, 2011 138
Examine the impact
of cancer on family
relationships among
members of a
Chinese cancer
support group
Professionally
facilitated cancer
support group for
patients and family
members at a
cancer treatment
centre
Qualitative
interviews and
participant
observation
No explicit definition
presented
Family members were integral to the support
group, constituting almost 40% of the
participants. Patients in the group expressed
concerns about family, with family members
identified as having “equal suffering” when
caring for patients. Notably, among both
patients and family members, there was a
strong emphasis on the need to conceal
emotion, coupled with a focus on
instrumental support in caregiving.
Furthermore, patients’ anxiety about
“burdening” their family appeared to inflate
their own experience of distress,
as patients and their family carers both sought
to maintain a positive front.
Interventions need to be culturally
appropriate.
Canada
96 Chinese
participants, 61%
were patients and
39% were family
members
Mixed cancer
types: 31% breast;
17% lung
15% pharyngeal
12 colorectal
63.5% female
10% pre-treatment
60% in treatment
30% post treatment
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
222
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
LeMay et al, 2008 50
Review the
evidence
supporting the
importance of
existential concerns
in terminally ill
patients, describe
eight manualised
interventions
explicitly addressing
existential themes,
and evaluate the
effectiveness of
these interventions
N/A
Literature
review/
synthesis
Reviews multiple
definitions
A life-threatening illness has widespread
ramifications affecting a person's physical,
emotional, social, and spiritual wellbeing.
There is a general consensus that existential
questions represent important concerns for
terminally ill patients.
Existential and spiritual suffering are poorly
understood by healthcare professionals.
Although several attempts have been made
at defining these constructs, clear definitions
and theoretical frameworks are required to
develop effective interventions.
Explore how
participants
experience and
apply meaning;
consider whether
this experience can
be understood
within an integrated
framework of
assumptive world,
sense of coherence
and meaningbased coping
10 patients with
advanced cancer
and an estimated
prognosis of 6-12
months
Qualitative
interviews
No explicit definition
presented
Three interrelated domains form an adaptive
pathway towards coherence and sense of
self:
1) associated with assumptive world,
experiencing the reality of advanced cancer,
and the suffering encountered
2) associated with sense of coherence,
responding to the impact and suffering of
advanced cancer
3) related to meaning-based coping, living life
fully with continued meaning.
Canada
Lethborg et al, 2006 133
Mixed cancer
types: 40% breast;
30% lymphoma
Mean age 58
(range 36-78)
50% female
While this pathway is essentially
linear it is also responsive to the ongoing
stressful nature of advanced cancer.
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
223
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Lethborg et al, 2008 80
Present a
theoretical
understanding of
the experience of
meaning in cancer
and identify some
potential
approaches to
intervention
N/A
Literature
review/
synthesis
No explicit definition
presented
Four goals of care foundational in any clinical
approach:
1) acknowledging suffering
2) encouraging a search for meaning
3) strengthening connection with others
4) ensuring optimal physical care.
Australia/ USA
Therapeutic modalities:
1) narrative therapy
2) meaning-based cognitive therapy
3) meaning-based existential therapy
4) strengthening social supports
5) physical symptom management.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
224
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Leung et al, 2010 99
Summarise
clinicians’
experiences with
cancer patients
who face the threat
of mortality
N/A
Literature
review/
synthesis
Existential distress:
“spiritual or philosophical
suffering that may or may
not include ideas of
intrinsic religiosity” [draws
upon Fehring et al., 1997
326]
Four themes helpful as a way to critically
reflect on areas pertinent to cancer care:
1) engagement
2) embodiment
3) environment
4) mutual respect.
Canada
Suffering:
“emotionally and
psychologically reported
to be concerned with
fears of death [dread of
non-being (Kierkegaard)],
with ambiguity of freedom
(lacking external ways to
constitute one’s destiny),
with isolation (the
unbridgeable gulf
between self and all else)
and with the question of
meaning [the possibility of
a cosmos without
meaning (Yalom)]”
[draws upon Yalom, 1980
327]
“Fundamental principles are relational and
involve ideas of relational ethics. These
themes guide an approach.
that can better meet patients’ and families’
needs, as well as impact on the work
satisfaction of clinicians. Relational ethics
respects the needs for autonomy but also
dependence, dignity but also
connectedness. Only when clinicians
recognize their shared mortality, can they
imagine facilitating a journey of dying that
can culminate to a ‘good’ death.”
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
225
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Leung et al, 2010 131
Discuss how
knowledge of the
spirituality of
Chinese women
and Eastern spiritual
resources can
inform culturally
competent social
work practice in
working with
people who suffer
from serious illness or
loss
26 women
diagnosed with
primary breast
cancer
Qualitative
interviews
No explicit definition
presented
The findings offer a culturally relevant
account of how spirituality is manifested in
Chinese women in the context of illness and
coping. Eastern cultural concepts such as
tien-ming, karma, impermanence, letting go,
nonattachment, connectedness, and
transcendence through suffering represent a
wealth of resources that can help patients to
cope during life crises. Patients manifested
their spirituality through:
1) experiencing a spiritual shock
2) making meaning
3) achieving connectedness
4) attaining transcendence.
Hong Kong
Mean age 49.7
(range 25–69)
1-9 years postdiagnosis
42.3% No religion
19.2% Buddhist
19.2% Christian
(Protestant)
11.5% Christian
(Catholic)
7.7% Ancestral
worship
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
226
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Levin et al, 2006 41
Review the
evidence-based
accomplishments of
psycho-oncology in
key areas that
inform clinical
practice
N/A
Literature
review/
synthesis
No explicit definition
presented
Existential distress may manifest as
demoralisation; meaning and dignity-based
therapies have been designed to assuage
existential angst in the cancer setting.
Psychotherapy is efficacious in ameliorating
cancer related distress, anxiety and
depression, with newer models focusing on
meaning and adaptive coping.
USA
Presents table from Kissane and Yates, 2003 328
linking existential challenges, features of
successful adaptation, form of existential
distress when problematic, symptoms, and
recommended interventions associated with
each.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
227
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Lin et al, 2008 130
Explore how USresident Chinese
immigrants with
metastatic cancer
search for meaning
at the end of their
lives
12 patients with
metastatic cancer
Qualitative
interviews
No explicit definition
presented
6 themes:
1) suffering and impending death: although
participants simultaneously faced suffering,
they searched for meaning in their lives
2) compassion and love: participants
experienced compassion and love from
religious practices and the caring and support
of family and others
3) joy and value: they experienced joy and
value by feeling satisfied with quality of life,
having good relationships with family and
friends, practicing religion, appreciating the
present moment, and keeping everyday life
normal
4) hope and faith: participants built hope and
faith by continuing to live, believing in a
possible cure, having religious beliefs, and
receiving encouragement from family and
others
5) readjustment and transcendence: they
readjusted and transcended suffering by
accepting the unexpected in life, looking for
positive impacts of having cancer, and
developing a positive attitude toward living
with cancer
6) empowerment and peaceful dying: they
felt empowered and prepared to die
peacefully by maintaining good symptom
control, remaining independent, and finding
peace of mind.
USA
Mixed cancer types
Mixed gender
Age range 37–70
1 month - 5 years
post-diagnosis with
metastatic cancer
All immigrants from
China or Taiwan,
who had lived in
the US for 3-50 years
Christians,
Buddhists, those
with some belief in
god(s), as well as
those with no
religious belief
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
228
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Lindholm et al, 1993 48
Help understand
what suffering is
11 nurses and 5
patients in a socialpsychiatric caring
centre
Qualitative
interviews
No explicit definition
presented
1) suffering is part of human life and above all
it is part of caring
2) suffering is not a feeling or a pain, but
something more fundamental; it is a dying,
which leads to new life or to death
3) suffering itself has no meaning, but man
can give meaning to his own experienced
suffering
4) every single suffering is a drama of various
degrees of substance and intensity
5) suffering can be alleviated but not
eliminated
6) by showing true compassion and love, we
can alleviate some human suffering.
Case report(s)
Demoralisation:
“describes a disorder of
meaning and hope”
Further research is needed to refine the
concepts of depression and demoralisation
and develop interventions.
Finland
Further details not
specified
Lloyd-Williams et al, 2008
42
UK/
USA
Review diagnoses
of depression and
demoralisation,
screening tools, and
interventions
A 55-year-old
woman with
metastatic breast
cancer who
completed
treatment for her
primary cancer 10
years
previously
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
229
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Loh, 2004 329
Presents a case
study of a woman
who presented with
spiritual distress
manifested as
anger and deep
denial
A 45-year-old
Malaysian Muslim
woman with
terminal breast
cancer
Case report(s)
Spiritual distress:
“a disruption in the life
principle, that, when
intact, suffuses a person’s
entire self, integrating and
transcending biological
and psychosocial
aspects”
[citing North American
Nursing Diagnosis
Association 330]
Example of loss of faith and questioning of
justice of patient’s misfortune.
Malaysia
Unwillingness to talk about illness was a sign of
spiritual distress and a cry for help.
Importance of acknowledging suffering and
creating an opportunity for patient to air
concerns.
“patients in spiritual distress
express concern about
the meaning of life, death
and suffering, and may
state that their illness is a
punishment”
Mak, 2005 68
Hong Kong
Better understand
the meaning of
desire for
euthanasia
6 advanced
cancer patients
who desired
euthanasia while
receiving palliative
care
Further details not
specified
Qualitative
interviews
No explicit definition
presented
Timeline from previous wellness to
approaching death with five major themes
(from overt physical to covert
spiritual/existential):
1) reality of disease progression
2) perception of suffering for self and others
3) anticipation of future worse than death
itself
4) desire for good quality end-of-life care
5) holding environment.
Desire for euthanasia is an expression of
suffering: reflects not just physical or
psychosocial concerns but also hidden
existential yearnings for connectedness, care
and respect.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
230
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Mako, 2006 59
Explore the
multidimensional
nature of spiritual
pain, in patients
with end-stage
cancer, in relation
to physical pain,
symptom severity,
and emotional
distress
57 patients with
advanced cancer
in a palliative care
hospital
Cross-sectional
study
Spiritual pain:
1) as an intrapsychic
conflict,
2) as interpersonal loss or
conflict,
3) in relation to the divine
61% reported experiencing spiritual pain at
the time of the interview, 96% reported
experiencing spiritual pain at some time in
their lives.
USA
60% female
Mean age 67.6
54% Catholic, 30%
Protestant, 9%
Jewish,
5% Muslim,
2% Hindu
54% Caucasian,
21% Black,
11% Caribbean,
7% Jewish,
4% Asian,
4% Hispanic
Intensity of spiritual pain was correlated with
depression, but there were no significant
correlations between presence of spiritual
pain and physical pain, nor intensity of
physical pain.
Catholics were significantly less likely than
individuals of other religious faiths to describe
spiritual pain in terms of the divine, and
significantly more likely to express their spiritual
pain in terms of an intra-psychic conflict.
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
231
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
McGrath, 2002 111
Explore the notion
of, and language
for, the idea of
'spiritual pain'
12 survivors of
haematological
malignancies
Qualitative
interviews
Spiritual pain:
“sense of diffuse
emotional / existential /
intellectual pain directly
related to the
meaninglessness created
as the result of a break
with the expected /
normal network of
relationships that function
to connect one to life”
Individuals need a strong sense of meaningmaking and connection with life to be able to
deal with the demands of aggressive, invasive
treatments.
No explicit definition
presented
Highlights the importance of providing the
opportunity for patients to talk about spiritual
issues.
Australia
33% female
Age range 25-60
1-10 years post
treatment
(58% 5+ years)
A break with normal or expected relationships
and satisfaction with life can threaten such
connection.
Significance of physical, identity-linked,
relational and existential losses as
antecedents to spiritual pain.
Further details not
specified
McGrath et al, 2003 121
Australia
Explore insights
provided by
survivors of
haematological
malignancies about
factors impacting
on their need to talk
about spiritual
issues, as part of a
broader research
project on ‘spiritual
pain’
12 survivors of
haematological
malignancies
33% female
Age range 25-60
1-10 years post
treatment
(58% 5+ years)
Qualitative
interviews
Note overlap
with 111
Reviews factors that block the opportunity for
friends and family to provide patients/survivors
with the opportunity to talk about the
experience and meaning of illness.
Provides insights on how to deal with this
aspect of care.
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
232
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
McGrath, 2004 144
Present recent
findings on survivors’
strategies for
dealing with
‘spiritual pain’
12 survivors of
haematological
malignancies
Qualitative
interviews
Framed by definition of
McGrath, 2002 111
Issues associated with spiritual pain often do
not surface until treatment has ended.
Australia
33% female
Strategies survivors use to address the
negative impact of spiritual pain/ antidotes to
meaninglessness of disconnection:
1) redefining the problem in terms of a
broader understanding of life
2) maintaining normalcy
3) experiencing the fullness of feelings
4) relying on family support.
Note overlap
with 111
Age range 25-60
1-10 years post
treatment
(58% 5+ years)
Further details not
specified
Melin-Johansson et al,
2008 67
Sweden
Elucidate the
meaning of quality
of life as narrated
by patients with
incurable cancer
approaching death
in palliative home
care in Sweden
8 people who had
been living with
metastatic cancer
for several months,
currently receiving
palliative care
Qualitative
interviews
No explicit definition
presented
1) being in intense suffering:
- living in a distressed body
- living in unintentional isolation
2) having breathing space in suffering
3) being at home.
Mixed cancer
types: 38%
gastrointestinal
25% female
Median age 56
(range 35-83)
Median survival
time after interview
3 months (range 11
days – 12 months)
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
233
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Millspaugh, 2005 44
Present an equation
identifying the
elements of spiritual
pain or suffering
and relating these
to each other
N/A
Theoretical/
opinion piece
Spiritual pain or suffering:
“(Awareness of death +
Loss of Relationships + Loss
of Self) (Loss of Purpose +
Loss of Control) / Life
affirming and
transcending Purpose +
Internal Sense of Control”
Spiritual pain is precipitated by
a loss of a sense of purpose when confronted
with one’s own mortality, and the realisation
that one is not in control, a realisation that
one is finally alone.
USA
It is exacerbated when there are significant
losses of the self.
It can be uniquely painful when the self has
been abandoned early in life.
It is significantly mitigated when a person has
a transcendent sense of purpose and an
internal sense of control.
Mok, 2010 45
Hong Kong
Explore the
phenomenon of
existential distress
in patients with
advanced cancer
from the
perspectives of
healthcare
professionals
23 healthcare
professionals
working in a
palliative care unit
serving patients with
advanced cancer
Qualitative
focus groups
Existential distress:
“cognitively, our
participants described
existentially distressed
participants as pessimistic,
lost, struggling, and finding
no reasons or meaning to
keep on living. Negative
affect and negative
behaviour were the byproducts of negative
thoughts”
Three causal conditions of existential distress:
1) anticipation of a negative future
2) failure to engage in meaningful activities
and relationships
3) having regrets.
Three basic (caring, relating and knowing)
and six specific (positive
feedback, religious support, new experiences,
task setting, exploring alternatives and
relationship reconciliation) intervening
strategies were identified.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
234
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Moore et al, 2004 47
Highlight the import
of factors affecting
the communication
of primary stage
head and neck
cancer patient's
experiences of
suffering after
treatments by their
clinicians
18 survivors of stage
I and II squamous
cell carcinoma of
the head and neck
Qualitative
interviews
No explicit definition
presented
1) a self diminished by cancer
2) the fear of addiction to pain medication3)
hopelessness and loss of meaning in life.
USA
28% female
Age range 19-85
(67% 41-55)
Suffering is under-reported mainly because of
fears:
1) of being further diminished
2) of addiction
3) of an inability to cope with additional
losses.
67% White,
28% AfricanAmerican,
6% Asian-American
Further details not
specified
Note exclusion of
one paper
substantially
duplicating these
results 46
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
235
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Morita et al, 2000 91
Exploratory analysis
to determine a
possible underlying
factorial structure of
existential
distress in Japanese
terminally ill cancer
patients, to help
conceptualise
existential suffering
and contribute to
the construction of
a measurement
instrument
162 hospice
inpatients with
cancer who
spontaneously
expressed
existential distress
Cross-sectional
study
Existential distress:
“a multidimensional
symptom with three
subcategories: loss of
autonomy, lowered selfesteem and hopelessness
... meaninglessness in
present life loads equally
on those three clusters”
Among 421 inpatients who died during the
study period, 162 (38%) spontaneously
expressed existential distress.
Japan
Mixed cancer
types: 23% lung
Existential distress commonly identified was
dependency (39%), meaninglessness in
present life (37%), hopelessness (37%), burden
on others (34%), loss of social role functioning
(29%), and feeling emotionally irrelevant
(28%).
42% female
Mean age 63
Median survival 43
days (range 4-340)
Religious distress rarely verbalised by patients,
possibly because the Japanese generally
have no specific religion.
100% Japanese
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
236
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Morita et al, 2000 30
Clarify
the physical
conditions of
terminally
ill cancer patients
who expressed
existential
distress related to
their present
meaningless lives
and received
sedation
20 hospice
inpatients who
spontaneously
expressed
existential distress
related to their
present
meaningless lives
and received
sedation
Retrospective
cohort study
No explicit definition
presented
Only one patient (of 248) received sedation
for psychological/existential distress alone – a
61-year-old woman with metastatic rectal
cancer who listed increased dependency as
the main origin of her profound distress.
Japan
Note overlap
with 91
Mixed cancer
types: 40% lung
60% female
Mean age 58
Died a median of
1.5 days after
sedation (95% 10
days or less)
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
237
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Morita, 2004 29
Clarify the
prevalence and
characteristics of
terminally ill cancer
patients who
received palliative
sedation
therapy for psychoexistential suffering
81 physicians at
certified palliative
care units
Cross-sectional
study
Refractory psychoexistential suffering as an
indication for palliative
sedation:
“psychological distress not
accompanied by
physical symptoms, such
as feeling of
meaninglessness/
worthlessness, burden on
others/ dependency/
inability to take care of
oneself, death anxiety/
fear/ panic, wish to
control the time of death
by oneself, isolation/ lack
of social
support, and economic
burden”
36% of physicians reported clinical experience
in continuous deep sedation for psychoexistential suffering.
Japan
Overall prevalence of continuous deep
sedation was calculated as 1% (90 cases /
8,661 total patient deaths).
Suffering requiring sedation:
- feeling of meaninglessness/ worthlessness
(61%)
- burden on others/dependency/inability to
take care of oneself (48%)
- death anxiety/fear/panic (33%)
- wish to control the time of death by
oneself (24%)
- isolation/lack of social support (22%).
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
238
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Morita et al, 2004 109
Categorise
existential concerns
of Japanese
terminally ill cancer
patients and
explore care
strategies for
existential distress
based on these
categorisations
88 terminally ill
cancer patients
receiving
specialised
inpatient palliative
care
Cross-sectional
study
Existential concerns
categorised as:
- relationship-related
concerns (22%)
- loss of control (16%)
- burden on others (4.5%)
- loss of continuity (10%)
- uncompleted life task
(6.8%)
- hope/hopelessness (17%
- acceptance/
preparation (25%)
Themes identified seemed to encompass
universal human suffering beyond cultural
differences, conceptualisation may
contribute to development of effective
interventions for existential distress.
Theoretical/
opinion piece
Spiritual pain:
“pain caused by
extinction of the
being and the meaning of
the self”
1) spiritual pain could be described
as meaninglessness of life, loss of identity, and
worthlessness of living
2) spiritual pain was derived from loss of
the future, loss of others, and loss of autonomy
3) principles of spiritual care of terminally ill
cancer patients are recovery of the future
beyond death, others beyond death, and
autonomy toward death.
Japan
Mixed cancer
types: 19%
colorectal
34% female
Median age 66
(range 25–94)
Further details not
specified
Murata, 2003 92
Japan
Clarify the structure
of spiritual pain to
be evaluated in
patients with
terminal cancer
N/A
Spiritual pain:
“distress of alienation from
the deepest parts of the
mind that give a
person meaning, hope,
and purposes”
[citing Kearney and
Mount, 2000 331]
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
239
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Murata et al, 2006 90
Illustrate the process
of developing a
conceptual
framework for
psycho-existential or
spiritual suffering by
the
Japanese Task
Force as the initial
step of a
nationwide project
26 panel members
who had actively
researched the
psycho-existential
suffering of cancer
patients; 100
multidisciplinary
peer reviewers
Theoretical/
opinion piece
Psycho-existential
suffering:
“pain caused by
extinction of the being
and the meaning of the
self”
1) psycho-existential suffering is caused by the
loss of essential components that compose
the being and the meaning of human beings
2) loss of relationships (with others), loss of
autonomy (independence, control over
future, continuity of self) and loss of
temporality (the future)
3) sense of meaning and peace of mind can
be interpreted as an outcome of the
psycho-existential state and thus the general
end points of our interventions.
Identify and
compare changes
in the
psychological,
social, and spiritual
needs (and distress)
of people with endstage disease
during their last year
of life by
synthesising data
from two
longitudinal,
qualitative, in-depth
interview studies
investigating the
experiences and
needs of people
with advanced
illnesses
(a) 20 patients
recently diagnosed
with inoperable
lung cancer;
(b) 20 patients with
a wide range of
advanced illnesses,
4 of whom had lung
cancer
Qualitative
interviews
No explicit definition
presented
1) characteristic social, psychological, and
spiritual end-of-life trajectories were
discernible
2) in lung cancer, the social trajectory
mirrored physical decline, while psychological
and spiritual wellbeing decreased together at
four key transitions: diagnosis, discharge after
treatment, disease progression, and
the terminal stage
3) many patients have spiritual issues from the
diagnosis of a life-threatening cancer, not just
at the very end-of-life
4) holistic end-of-life care needs to
encompass all these dimensions.
Japan
Murray et al, 2007 58
UK
42% female
Mean age 66
(range 43-87)
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
240
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Musi, 2003 51
Suggest that putting
spiritual “distress,
discomfort, void,
anguish” described
by McGrath 111 in
terms of suffering
instead of pain
could contribute to
the attempt at
creating a
language for and
exploring the notion
of “spiritual pain”
N/A
Theoretical/
opinion piece
Framed by definition of
Chapman and Gavrin 66
1) medicine has developed distinct concepts
of pain and suffering
2) interprets data presented by McGrath 111 in
the light of the framework of suffering, as
defined by Chapman and Gavrin 66
3) suggests this is an enlightening and fruitful
approach to conceptualising and diagnosing
spiritual suffering.
Obtain in-depth
knowledge about
caring confirmation
of
patients with
cancer, from the
patients’ point of
view. The research
topic was: what is
the
significance for
patients of their
being confirmed by
nursing personnel?
15 men and women
with cancer who
were receiving
potentially curative
treatment
Qualitative
interviews
No explicit definition
presented
Results are summarised in three areas:
1) an outer confirmation: being understood
and taken seriously
2) an inner confirmation: maintenance of
human dignity and worth
3) a lack of the latter.
Italy
Naden et al, 2006 60
Norway
Mixed cancer types
Age range 43-80
Further details not
specified
A lack of inner confirmation is primarily
manifest in terms of patients’
mental, spiritual and existential concerns,
while alleviation of suffering mostly focused on
physical needs.
In relation to the theory of Eriksson about
suffering on various levels, these patients were
confirmed at the level of having and being,
but seldom at the level of becoming.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
241
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Nilmanat et al, 2010 55
Describe the
suffering that
patients with
terminal advanced
cancer experience
in their everyday life
15 patients with
terminal advanced
cancer
Qualitative
interviews
No explicit definition
presented
Overriding theme of the end-of-life
experiences was living with suffering:
1) physical symptom distress
2) feeling of alienation
3) sense of worthlessness
4) sense of burden to others
5) desire for hastened death.
No explicit definition
presented
The following meanings of experiencing
alleviation of suffering were disclosed:
1) an endurable body
2) being independent and feeling at home
3) feelings of connectedness
4) taking a long view of the suffering
5) being lifted out of the suffering
6) an inner peace.
Thailand
Mixed cancer
types: 33% cervical
Participant
observation
73% female
Mean age 56.47
(range 30-72)
93% Buddhist,
7% Muslim
Further details not
specified
Ohlen et al, 2002 74
Sweden
Explore meanings of
alleviated suffering
in persons living with
life-threatening
cancer
16 men and women
with gastrointestinal
cancer who were
receiving palliative
care
Age range 53-88
Illness trajectories
ranged from 2
months to years
Further details not
specified
Qualitative
interviews
Movements that were found in alleviation
were:
1) dampening the suffering
2) arousing a zest for life
3) focusing on both the present and
the patient’s dignity.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
242
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Ohlen, 2004 101
Explore narratives of
care-related
violations for
patients with
life-threatening
illness receiving
palliative care
16 men and women
with gastrointestinal
cancer who were
receiving palliative
care
Qualitative
interviews
No explicit definition
presented
Care-related violations mean a complex
experience of suffering as:
1) being abandoned
2) being confronted with hopelessness
3) being further wounded.
Sweden
Age range 53-88
Illness trajectories
ranged from 2
months to years
Note overlap
with 74
Such episodes:
1) reveal the vulnerability of the person who is
already suffering
2) makes him or her still more wounded, when
actually comfort is expected.
Native language
Swedish
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
243
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Okon, 2006 72
Provide evidence
from patients’
stories and empiric
research to support
the observation
that recommended
communication
models fail to
approximate the
truth of suffering
associated
with an impending
death
N/A
Theoretical/
opinion piece
No explicit definition
presented
1) demonstrates that contemporary
biomedicine faces a fundamental aporetic
occlusion in attempting to examine death
2) asserts that the occlusion defines, rather
than simply complicating,
palliative care
3) suggests that this finding shape clinicians’
responses to the needs of patients in clinical
care and in designing palliative research
4) signals that a genuinely apophatic voice
construing the occlusion as a mystery rather
than an aporia may be
superior to the present communication and
empathy models.
USA
Examine the
epistemological
premises of the
biomedical
language
governing the
patient-physician
communication
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
244
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Otis-Green, 2006 108
Discuss spiritual
palliative care at
the end of life
A middle aged
woman who had
metastatic breast
cancer and a
growing recognition
that her time was
limited
Case report(s)
Spiritual suffering:
“I know what my
husband’s favorite meals
are, my son’s favorite
music, my daughter’s
favorite colors . . . I’ve
lived my entire life to
please my parents, my
family, my teachers, my
friends . . . and I don’t
know who I am. I wear
red, because others tell
me it looks good on me,
but I don’t think I even like
red. If I were to be offered
a “last meal” I don’t know
what I’d choose. I’m a
fraud! I can’t die yet
because I’ve yet to really
live . . . I don’t know who I
am, and now it’s too late
to find out!”
1) the goal in palliative care is to assess the
person in discomfort so that one can better
understand the source of suffering
2) in both spiritual care and palliative care,
one must individualise the intervention if it is to
be most meaningful
3) it is necessary to integrate an appreciation
for the cultural nuances that influence each
of us
4) both require a commitment to be present
with another to really hear and understand
their personal narrative.
Review the
importance of
recognising spiritual
distress, dimensions
of spirituality, and
the way in which
the nurse can
contribute to
spiritual growth
N/A
Theoretical/
opinion piece
Spiritual distress:
“is often characterised by
loneliness, despair, grief
and loss over the future,
and an inability to find
meaning and purpose in
the cancer experience”
Relationship between hope, meaning, selftranscendence and spiritual wellbeing
USA
Ott, 1997 85
USA
Ways in which nurses can help a person
achieve spiritual wellbeing.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
245
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Parker, 2011 123
Examine ways in
which medicine
and health care try
to encourage or
therapeutically
increase states such
as optimism,
emotional
wellbeing, peace
and meaning, and
to try to decrease
mental and
existential distress,
despair, feelings of
vulnerability,
feelings of loss and
loss of meaning
N/A
Theoretical/
opinion piece
No explicit definition
presented
There are risks that arise from premature
and/or excessive accentuation of the
positive, and neglect of the presence and
importance of what is conventionally
regarded as the negative.
Discuss case of a
patient who
experienced “losing
God” and the way
in which his
caregivers were
able to provide the
sense of community
in which he could
re-establish his faith
A survivor of
Hodgkin’s disease
with metastatic
prostate cancer
and severe
coronary artery
disease
Case report(s)
Suffering:
“occurs when a person
fears the loss of dignity or
integrity and that fear
connects with previous
painful experiences with
no hope for relief”
Nebulous language, distrust and dogma
confound spiritual aspects of cancer care.
Australia
Penson et al, 2001 94
USA
Simply being there for the patient and being
open to their hurt can help resolve their
spiritual crisis, a responsibility that is shared by
the whole healthcare team.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
246
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Perreault et al, 2005 54
Explore the
experience of
suffering as lived by
women with breast
cancer
6 women with
breast cancer
(1 stage II; 5 stage
IV)
Qualitative
interviews
No explicit definition
presented
Essence of experience revealed in the artistic
representation of the ‘Five Seasons of the Tree
of Life’:
1) the ‘alarm signal’
2) ‘loss’
3) ‘metamorphosis’
4) ‘work to do’
5) ‘healing process’.
Case report(s)
Taking a spiritual history
allows identification of
spiritual issues or spiritual
distress, including the
following examples:
“meaninglessness, despair,
hopelessness, desire to be
remembered, and issues
of forgiveness and
reconciliation”
1) spirituality in the clinical setting can be
manifested as spiritual distress or as resources
of strength
2) spiritual care involves an intrinsic aspect of
care, which underlies compassionate and
altruistic caregiving
3) it also involves an extrinsic element, which
includes spiritual history, assessment of spiritual
issues, as well as resources of strength and
incorporation of patients’ spiritual beliefs and
practices into treatment or care plan
4) spiritual care is interdisciplinary care.
Canada
Mean age 49
Range 9-132
months post
diagnosis
All Caucasian
Further details not
specified
Puchalski et al, 2006 332
USA
Review spirituality in
clinical care,
practical tools for
spiritual care,
barriers to spiritual
care, and the role
of all healthcare
professionals in
developing and
implementing a
spiritual care plan
An 82–year-old
white female with
recurrent laryngeal
cancer
Theoretical/
opinion piece
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
247
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Rehnsfeldt et al, 2004 73
Investigate the
progression of
suffering in relation
to the encounter
between the
suffering person
and the caregiver
from the
perspective of an
understanding of
life
6 persons who had
experienced
periods ‘that were
of decisive
importance to life’
(e.g. loss of
relatives, accidents)
(a)
Letters
exchanged
between
researcher and
participants (a)
No explicit definition
presented
1) a darkness in life understanding is
existentially experienced as unbearable
suffering and requires an encounter involving
attentive care and confrontation
2) the turning point means that the struggle of
suffering begins
3) the encounter involves being meaningcreating in a communion in the struggle of
suffering.
Sweden/
Finland
3 persons who had
experienced such
periods and 4
persons with whom
they had
encounters (b)
Qualitative
interviews (b)
and (c)
Note overlap
with 23
5 women with
breast cancer, and
4 significant others
(c)
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
248
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Rehnsfeldt et al, 2008 88
Examine the
development of
understanding of
life in people with
cancer and
burnout syndrome
in relation to nursing
care
9 patients with
cancer diagnoses
and 7 with burnout
syndrome
Qualitative
interviews
No explicit definition
presented
1) ‘a pilgrimage on the road to understanding
of life’
2) the pilgrimage is the person’s own inner
decision to reach new insights and meaning
3) walking alone on the pilgrimage without
being met in an understanding of life creates
increased suffering
4) having a companion on the pilgrimage
was seen as adding dignity to the suffering
human being.
Sweden
Mixed cancer types
44% female
Age range 50-72
Range 1-3 years
post-diagnosis
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
249
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Rodgers et al, 1997 82
Use concept
analysis inductively
to generate a
definition of the
concept of suffering
and to clarify
various contextual
aspects of the
concept
N/A
Literature
review/
synthesis
Suffering:
“an individualised,
subjective and complex
experience that involves
the assignment of an
intensely negative
meaning to an event or a
perceived threat”
The negative meaning of suffering involves
the loss, or perceived loss of one’s integrity,
autonomy, and actual humanity.
Complexity of suffering is compounded by the
physical, cognitive, affective, social and
spiritual components involved.
The consensus within the current literature on
suffering clearly indicated that a general
awareness, particularly awareness of
‘humanness’ was antecedent to suffering.
Outcomes of suffering include a change in
values and an altered sense of reality, which
can be positive or negative in nature.
Pain is often used as a surrogate term for
suffering, but although they are related, they
are not the same.
Significant was use of the phrase ‘suffering
from’ as equivalent to ‘diagnosed with’. This
use was most common with physician authors,
and is consistent with the atomistic approach
of medicine. This use of the concept of
suffering draws attention away from the
suffering itself and toward the underlying
pathology that is the presumed cause. This
can lead to overlooking the abstract, spiritual
and holistic nature of suffering, which needs
to be understood as by the person
experiencing it.
USA
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
250
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Rosen, 1998 31
Respond to ethical
issues raised by
Shaiova's 110 report
on a case involving
sedation until death
for a terminal
cancer patient with
unrelieved
existential distress
despite adequate
pain control
A 42 year old
female
psychologist, with
metastatic breast
cancer and severe
neck, back, and
bone pain
Case report(s)
No explicit definition
presented
1) need to define who evaluates such
requests for sedation until death and how to
assess their meaning
2) patients do not suffer in a vacuum but in
the context of family and friends whose lives
will be transformed by their decision
3) advocates a more comprehensive, holistic
framework, and seeing the family as the unit
of care.
USA
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
251
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Rousseau, 2000 333
Discuss spiritual
suffering in the
dying patient and
the appropriate
clinical response
N/A
Theoretical/
opinion piece
Suffering:
“often manifests as
physical or psychologic
problems and shares
many features with
depression, including
feelings of hopelessness
and worthlessness as well
as a sense of
meaninglessness. Spiritual
suffering may also
exacerbate, and be
exacerbated by,
psychosocial disturbances
and other physical
symptoms such as pain,
confounding diagnostic
and therapeutic
strategies”
Spiritual suffering is frequently ignored or
dismissed. Clinically, spiritual suffering is
complex and nebulous and often difficult to
assess. Moreover, physicians rarely inquire
about spiritual concerns, although a few
patients may directly solicit help with spiritual
issues.
USA
The most effective approach to diagnosing
spiritual anguish is to establish rapport and a
caring relationship with patients and then to
ask about death-related concerns and
beliefs.
To support and assist in the treatment of
spiritual suffering, physicians must respect the
diverse beliefs of patients, be willing to listen
and discuss issues of spirituality, acknowledge
and provide for the rituals and ceremonies of
religious affiliations, and refer to appropriate
healthcare professionals trained in spiritual
health. In addition, physicians must be
comfortable with spiritual concerns,
demonstrate empathy, and have exemplary
listening and communication skills. The whole
person must be considered.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
252
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Rydahl-Hansen, 2005 102
Describe the
characteristics of a
group of Danish
hospitalised
patients’
experienced
suffering in life with
incurable cancer
12 patients with
advanced cancer
Qualitative
interviews
Suffering:
“The experience of living
in an increasingly
unpredictable existence
at the mercy of the body,
the consciousness, the
illness, the death, the
treatment, the
professionals, one’s
articulateness, the past,
the present and the
future, influenced by
increasing powerlessness,
loneliness and isolation,
and the experience of
existing in an persistent,
and with time,
unconquerable struggle to
maintain and regain
control”
1) increasing powerlessness
2) increasing loneliness and isolation
3) existing in a persistent, and with time,
unconquerable struggle to maintain and
regain control
4) to be at the mercy of the body, the
consciousness, the illness, the treatment, and
the death
5) to be at the mercy of the professionals and
one’s articulateness
6) to be at the mercy of the past, the present
and the future.
Denmark
50% female
Mean age 57
(range 40-70)
Mean 3 years since
diagnosis (range 3
months to 5 years)
Born in Denmark to
Danish parents
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
253
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Saeteren et al, 2011 103
Focus on the health
and suffering of
patients with a
serious cancer
disease from the
patients’
perspective, and
the dialectic
between these
15 patients with
advanced cancer
Qualitative
interviews
No explicit definition
presented
1) patients lived their lives in a dialectic
oscillation, a struggle between health and
suffering
2) they expressed health through striving
towards normal life, aspiring for hope, taking
responsibility for their own life and
experiencing belongingness with their next of
kin
3) suffering was expressed through
experiences of bodily aversion, uncertainty
and fear of the future, sorrow and needs,
anxiety, despair and loneliness
4) patients were lonely in this struggle, as
conversations about existence and death did
not occur, neither with the nurses nor with
their next of kin.
Norway
40% female
Age range 47-76
Further details not
specified
Three key patient statements:
1) me, I am not like other patients
2) we can hope to latch onto life a little bit
longer
3) it can’t be possible that I won’t be here in a
year.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
254
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Sand et al, 2008 334
Explore the
perception,
experiences and
significance of
powerlessness and
helplessness in
patients with
disseminated
cancer
103 patients with
mixed cancer
diagnoses enrolled
in palliative homecare
Cross-sectional
study
Cites Cassel (2003) 335
1) impending death, symptoms, loss of control
and autonomy, ignorance, isolation and
uncertainty constituted the basis for
powerlessness and helplessness
2) each factor was reinforced by the
occurrence of suddenness, high intensity
and/or lengthiness
3) feelings also held a deeper meaning,
involving aspects such as existential loneliness
and hopelessness
4) findings are discussed in relation to Cassel’s
theory of suffering and existential psychology.
Sweden
Mixed cancer
types: 20% gastroint;
18% genitor-urinary
53% female
Medium [sic] age
67 (range 40-91)
Majority (64%) over
1 year postdiagnosis
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
255
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Sanft et al, 2009 336
Present the
challenging
syndrome of opioid
related myoclonus
(ORM) and explores
the appropriateness
of providing
sedation when
trying to balance
the risks and
benefits of further
opioid drug/dose
manipulations
against the degree
of current and
expected future
patient suffering
A 46 year old
women with
metastatic ovarian
cancer admitted to
the palliative care
service for pain
control
Case report(s)
Suffering:
“Meaning, fear, pain,
fatigue, other symptoms,
as well as uncertainty, loss,
grief, and mourning are
part of this suffering”
(Coyle’s contribution,
drawing upon Cassel 83)
1) elements contributing to suffering of patient
and their loved ones must be assessed and
addressed, attending to needs of the whole
person, including physical, psychological,
social and spiritual domains
2) relief of suffering remains elusive
3) outlines Kearney and Mount’s approach to
suffering 331
4) argues that it was possible in this case to
prevent and relieve unnecessary suffering
such as pain and other symptoms, and bear
witness to her grief.
Explore the main
concerns of women
with recurrent
breast cancer, and
how they were
dealing with their
situation
20 women
diagnosed with
recurrent breast
cancer
Qualitative
interviews
No explicit definition
presented
Core category ‘making sense of living under
the shadow of death’ encompassed three
subcategories:
1) confronting, involving shifting expectations
and shifting awareness
2) struggling/easing distress, entailing losing/
fearing, letting go/being reassured
3) transcending, involving re-evaluating,
repatterning relationships and creating
wellness.
USA
Sarenmalm et al, 2009 337
Sweden
Age range 55-81
Median 68 weeks
from primary
diagnosis to
recurrence
Further details not
specified
Argues that to relieve suffering in women with
recurrent breast cancer, it is particularly
important to go beyond symptoms and
recognise impact of existential distress.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
256
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Shaiova, 1998 110
Report on a case
involving sedation
until death for a
terminal cancer
patient with
unrelieved
existential distress
despite adequate
pain control
A 42 year old
female
psychologist, with
metastatic breast
cancer and severe
neck, back, and
bone pain
Case report(s)
Existential distress:
“She experienced
helplessness and severe
psychological suffering ...
At the core of L.M.’s
distress was the inability to
bear the psychological
havoc she felt that she
was imposing on her
family, as they were
forced to watch her die
slowly. She agonized
about the prospects of
lying in bed paralyzed,
waiting to die, while her
husband, three young
children, and mother were
witness to this emotionally
painful process. Although
her pain was adequately
controlled, this existential
suffering remained
profound”
In the doctor’s mind, sedation until death was
justified by the inability to relieve her
psychological and existential distress while
maintaining a wakeful state.
USA
Raises the important question of whether
sedation is ethically justified in cases of
existential distress.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
257
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Skott, 2008 106
Discuss how words
for symptoms relate
to experiences and
find out how
seriously ill patients
two years after
diagnosis and
treatment
articulated suffering
9 patients who had
been diagnosed
and completed
treatment for a
tumour of the
central nervous
system two years
previously
Qualitative
interviews
No explicit definition
presented
1) bodily, obstructive, emotive and
metaphorical expressions of symptoms
appeared
2) transformed life situation involved inability
to perform everyday tasks and a feeling of
frustration of needs and desires
3) more than every second word for a
symptom expressed a negation – an absence
of a possibility
4) the experience of suffering reduces a
person’s world as the preoccupation with
illness leaves almost no time or space for the
whole self.
Sweden
44% female
Age range 50-78
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
258
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Storey, 2001 70
Define "spiritual
care" and its role in
end-of-life medical
care
A 46-year old man
with
adenocarcinoma
throughout both
lungs, short of
breath and in
severe pain
Case report(s)
Cites Cassel (1982) 18
1) without awareness of the spiritual
dimension, problems such as suffering,
anguish or hopelessness will be missed
2) misdiagnosing spiritual distress can lead to
inappropriate, burdensome and ineffective
interventions
3) lack of attention to the spiritual dimension
can rob patients and physicians of
opportunity for deep personal growth.
USA
A concentration
camp survivor with
metastatic cancer
and agitation
A 50-year old
woman whose
second bone
marrow transplant
for acute
leukaemia had
failed
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
259
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Strang, 1997 118
Explore how pain
might influence the
existential or
spiritual dimension
of suffering, i.e. to
discover whether
there is a
relationship
between the
intensity of pain, the
duration of pain
and issues such as
fear about the
future
78 inpatients with
locally advanced
or metastatic
cancer being
treated for painrelated problems
Cross-sectional
study
No explicit definition
presented
1) overall mean pain score and worst pain
correlated significantly with worries and fear
about the future, worries about the pain, fear
of pain progression, and anxiety
2) partly unrelieved pain contributes to the
’total pain’ experience, not only by causing
immediate physical suffering, but also by
increasing the anxiety level and the fear
about the future and future problems.
Qualitative
interviews
No explicit definition
presented
Nurses reported existential issues were difficult
to deal with in practice due to:
1) lack of time
2) lack of knowledge
3) fear.
Sweden
Mixed cancer
types: 25% breast;
14% prostate; 11%
lung
50% female
Mean age 64
(range 34-83)
Further details not
specified
Strang et al, 2001 120
Sweden
Describe similarities
and differences as
regards:
a) nurses' opinions
about the need to
offer existential
support in lifethreatening illness
and how this is
prioritised;
b) opinions of brain
tumour patients
and their next-of-kin
concerning support
in existential crises
20 patients with
brain tumours
(grade II, III and IV);
16 relatives; and 16
nurses
Patients ages
ranged from 23-70
years; other details
not specified
Nurses from brain
tumour group
(neurology and
oncology)
Patients and family members wanted
opportunities to discuss existential crises and
saw staff as:
1) under much stress
2) afraid
3) unskilled.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
260
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Strasser et al, 2005 69
Discuss three
patients with
refractory pain
syndromes who
were successfully
treated using an
expanded
assessment and
understanding of
pain; illustrate the
effect of
psychological
distress on the
suffering, and
specifically, pain of
patients with
advanced
incurable cancer
A man in his 20s
with relapsed
osteosarcoma
progressing rapidly;
Case report(s)
Suffering
"is difficult to define
conceptually. It comprises
perceived helplessness;
the inability to cope with
stressful events; and the
bankruptcy of physical,
psychological, and social
resources"
1) importance of multidimensional assessment
2) bi-directional nature of pain and suffering
3) need to do "bio-medical homework" by
assessing and diagnosing each pain
syndrome and its treatment
4) value of counselling to enable patients to
express emotions in words rather than
exclusively in physical language.
Describe a case of
a hospice patient
that a hospice and
palliative care
team struggled to
palliate
A 63-year old man
with anal squamous
cell carcinoma
Case report(s)
No explicit definition
presented
1) describes the contribution of existential and
spiritual angst, and social isolation to this
patient’s suffering
2) describes not only the importance of
exhausting all medical resources to relieve
patients’ pain and suffering, but also of
learning to sit with patients in their suffering.
Switzerland
USA
Sudore et al, 2010 338
USA
A woman in her 40s
with relapsed breast
cancer that had
been widely
metastatic to the
bones for six years;
A Hispanic man in
his 50s with relapsed
neurogenic
sarcoma
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
261
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Sumner, 1998 132
Present points for
nurses to consider
as they strive for
maximum
effectiveness in the
provision of care
that respects
individual spiritual
values
N/A
Theoretical/
opinion piece
Spiritual distress:
“sometimes takes the
obvious form of anger
toward God or inner
conflict about one's
religious faith. But
concerns about
"meaning"-of pain,
suffering, life, and
death-are equally
important indicators of
spiritual distress.”
1) spirituality is a basic human phenomenon
that helps create meaning in the world
2) reviews barriers to spiritual care and ways
of providing enhanced, inclusive spiritual
support
3) advocates a broader conceptualisation of
spirituality, expanded knowledge base.
Tamura et al, 2006 124
Use a spiritual pain
assessment sheet in
patient interviews to
help clarify the
characteristics of
patient spiritual
pain, and to
explore the
potential benefit of
a spiritual pain
assessment
sheet to clinical
practice
10 terminal cancer
patients in palliative
care
Qualitative
interviews
Framed by Murata’s 92
definition
Spiritual pain manifested in all three
dimensions of Murata's conceptual
framework:
1) temporality (5/10 participants)
2) relationship (all participants)
3) autonomy (all participants).
Japan
Mixed cancer types
50% female
Mean age 64.9
(range 50-80)
80% Buddhist; 20%
Christian
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
262
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Terry et al, 2004 63
Estimate the
frequency with
which medically
defined suffering
matched the
reported suffering
of our patients
100 patients with
terminal illness
admitted to a
hospice (92%
malignant disease,
mixed cancer
types)
Cross-sectional
study
No explicit definition
provided
35% identified their suffering as physical pain,
35% identified their suffering with physical
symptoms other than pain. 28% identified
suffering as entirely emotional in origin; 7%
identified as mixed somatic and emotional in
origin.
Australia
Pain ratings did not correlate well with
descriptions of suffering.
51% female
Mean age 68
(range 28-93)
Patients' descriptions of their suffering were
not closely related to reasons for admission
given by responsible clinician.
Further details not
specified
Udo et al, 2011 96
Sweden
Explore if
healthcare staff in
surgical care
discussed existential
issues when caring
for cancer patients
1 physician and 7
nurses; surgical care
Secondary
analysis of
content of 12
tape-recorded
supervision
sessions (18 hrs)
Existential distress
"feelings of despair" and
"feelings of isolation"
Staff discussed the fact that patients
expressed existential distress:
1) "feelings of despair"
2) "feelings of isolation".
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
263
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
van Deijck et al, 2010 32
Study the practice
of continuous
palliative sedation
(CPS) by Dutch
nursing home
physicians in 2007
675 nursing home
physicians,
describing 316
patients(38%
cancer)
Cross-sectional
study
Existential distress:
“characterised according
to the Royal Dutch
Medical Association
guideline as patients close
to death with a range of
severe physical
complaints, where there is
the feeling that one’s
existence is empty or
meaningless and the
distress cannot be
alleviated by
communication or spiritual
support”
‘Existential distress’ was cited in 16% of cases
as a ‘refractory symptom’ factoring in the
decision to start continuous palliative sedation
(CPS).
Spiritual distress:
“conceptualised as
impairments in 7
constructs of a person’s
sense of spirituality: (1)
connectedness, (2) faith
and religious belief system,
(3) value system, (4)
meaning and purpose in
life, (5) selftranscendence, (6) inner
peace and harmony, and
(7) inner strength and
energy"
Presents summary table of defining attributes
(i.e. constructs of spirituality) and empirical
referents (i.e. patient manifestations or
clinician cues) of spiritual distress.
The Netherlands
57% female
89% over 60
Further details not
specified
Villagomeza, 2005 86
USA
Clarify spiritual
distress through
concept analysis,
and provide nurses
with cues for
recognising spiritual
distress in adult
patients with
cancer
N/A
Literature
review/
synthesis
No statistically significant differences were
found between patients with cancer or
dementia in the distribution of refractory
symptoms.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
264
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Wein, 2007 43
Consider the role
courage plays in
our ability to cope
with threat and
adversity, especially
the role of courage
in understanding
demoralisation and
dignity
N/A
Theoretical/
opinion piece
Demoralisation:
"Becker commented that
Adler shows depression or
melancholia (or
demoralisation, one might
add) to be a problem of
courage, of people who
are afraid of life and are
dependent of aid from
others. In shrinking from
the difficulties - by lacking
courage - ineptitude
creeps in, followed
inexorably by loss of selfesteem"
1) courage is an important precursor to
maintaining morale and therefore may play a
critical causative role in demoralisation
2) courage is also intimately related to the
concepts of self-esteem, free will, and
personal values in life
3) the utility of the concept of courage is that
it enables a response to a difficult
circumstance
4) the main drawback of courage in a
therapeutic sense is that it is often linked with
cowardice, which has a pejorative
connotation and is notoriously difficult to
diagnose.
Explore culture as a
response to the
primary human
challenge of how to
alleviate suffering
and loss
N/A
Theoretical/
opinion piece
Suffering:
“can be understood and
characterised as a
sense of loss”
1) core characteristics of culture (symbols,
sharing and groups) enable society to help
the individual to cope with loss
2) in the modern age, traditional culture is
disintegrating and being replaced
3) advocates using our culture more proactively to routinely contemplate loss, ageing
and death.
Australia
Wein, 2011 81
Israel
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
265
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Williams, 2004 62
Examine how a
sociological
framework can
provide insights on
existential suffering
at the end of life
33 outpatients with
a diagnosis of
inoperative primary
tumour or
metastasis from
original site
Qualitative
interviews
Existential suffering:
"In its broadest sense ...the
experience of agony and
distress arising from an
unbearable state of
existence ... typically
understood as a
psychological or spiritual
condition that robs
individuals of their
capacity to find solace or
peace in their present
state of being ... rooted in
incoherence and
disruption of relations with
self and others"
[Drawing on Frank, 1991
339]
Factors contributing to existential suffering
among terminally ill low socio-economic
status cancer patients:
1) dying “off time” in the life course
2) being exposed to the illness trajectories of
others
3) experiencing social isolation and social
death.
USA
Mixed cancer
types: 33% breast
70% female
Mean age 52
70% Black;
30% White
70% less than 18
months from
diagnosis
(range 6 weeks to
10 years)
Low socioeconomic status
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
266
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Williams, 2006 105
Summarily analyse
qualitative research
on spiritual
perspectives of
adults who are at
the end of life
N/A
Literature
review/
synthesis
No explicit definition
presented
A spectrum of spirituality at the end of life
emerged, encompassing:
1) spiritual despair (alienation, loss of self,
dissonance)
2) spiritual work (forgiveness, self-exploration,
search for balance), and
3) spiritual wellbeing (connection, selfactualisation, consonance).
8 people who had
received a stem
cell transplantation
in the previous year
(none experienced
a recurrence at
time of study)
Qualitative
interviews
No explicit definition
presented
1) private storm
2) the lowest point
3) getting through
4) turning point
5) transformation
6) a new perspective
7) valuing self and valuing others
8) moments of darkness.
USA
Identify areas for
future research on
the relationship of
spirituality with
physical, functional,
and psychosocial
outcomes in the
healthcare setting
(predominantly but
not exclusively
cancer patients)
Williams, 2012 95
USA
Understand the
meaning of selftranscendence, or
the ability to go
beyond the self, for
patients who have
had a stem cell
transplant
50% female
Mean age 52
(range 45-63)
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
267
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Wilson et al, 2007 53
Inquire into the
sense of suffering
among patients
with advanced
cancer to
investigate its
causes and
correlates
(addressing the
construct of
suffering as a global
experience of the
whole person)
381 patients with
advanced cancer
receiving palliative
care
Cross-sectional
study
No explicit definition
presented
Many patients with advanced cancer do not
consider themselves to be suffering.
Canada
Qualitative
interviews
For those who do, suffering is a
multidimensional experience related most
strongly to physical symptoms, but
with contributions from psychological distress,
existential concerns, and social-relational
worries.
Mixed cancer
types: 24% lung;
20% genitourinary
56% female
Illustrated by correlations of SISC subscale
scores, regression analyses using SISC
dimensions to predict suffering [although
social concerns did not contribute
independently], and analysis of qualitative
narratives.
Mean age 67
39% Protestant; 36%
Catholic; 9% Other;
16% None
Further details not
specified
Yang et al, 2010 89
Study the
phenomenon of the
existential crisis (i.e.
what patients
experience), the
way patients deal
with it, and how
caregivers can
assist patients
suffering from it
15 cancer patients
who visited a
counselling centre
and lived through
an existential crisis;
58 respondents to
questionnaire and 3
patients who
provided autobiographical
material
Qualitative
interviews
Questionnaire
responses and
autobiographical
materials not
further
specified
Characteristics of the
existential crisis:
1) awareness of finitude;
2) dissolving of the future;
3) loss of meaning;
4) fear, anxiety, panic,
despair;
5) loneliness;
6) powerlessness;
7) identity crisis
Dealing with an existential crisis:
1) the breakdown of interpretive meaning: a
mourning process
2) the experience of new meaning: a healing
process
3) the integration of experiential meaning and
interpretive meaning: a spiritual process.
Further details not
specified
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
268
Author, Year, (Ref #),
Study origin
Aim/objective
Population
Method
Definitions/exemplars
Results
Younger, 1995 340
Explain the
mechanisms
through which
suffering affects an
individual's sense of
community and
connectedness with
others. Provide a
basis for prescriptive
nursing to prevent
or reverse this loss of
connectedness
N/A
Theoretical/
opinion piece
Suffering:
“has as its root sense the
idea of submitting or
being forced to submit to
some particular set of
circumstances, forced to
admit to an existence that
is not under our control or
to the intrusion of an
activity operating under
an-other law than ours.
Thus, it makes us not
ourselves, and it is a threat
to our autonomy”
[Draws on Cassell, 1991 341]
Suffering and pain, although not the same,
are related and share some attributes.
Suffering may not occur, even in the
presence of severe pain, if the cause is known
and if a threat is not perceived. However,
suffering frequently occurs when pain is
chronic, the meaning of the pain is dire, or the
individual feels out of control.
Suffering may have a positive meaning.
Suffering is what we choose to do with the
pain, and it can mean to endure or hold out –
i.e. to not be incapacitated by the suffering.
Experiences of meaning determine how one
perceives suffering and how one copes with
it.
Suffering destroys the ability to communicate
Suffering may lead to a sense of alienation
from others.
To be effective in providing care for the
patient, the nurse must first connect with their
own mortality.
USA
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
269
Appendix C
List of ongoing studies
The following ongoing and/or recent studies of relevance to the review questions have
been identified through author searches and searches of conference abstracts:
1.
Antoni M. Changes in benefit finding during psychosocial intervention in women
treated for breast cancer: Biobehavioral correlates. Psycho-Oncology.
2010;19:S19.
2.
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2012;12(Suppl 1):O38.
3.
Cole B, Broer K, Hopkins C, et al. A randomized controlled trial of spirituallyfocused meditation in patients newly diagnosed with acute leukemia. Blood.
2010;116(21).
4.
Haddad R, Chandwani K, Perkins G, et al. Randomized, controlled trial of yoga for
women with breast cancer undergoing radiotherapy. Psychosomatic Medicine.
2011;73(3):A119-A20.
5.
Hall S, Edmonds P, Harding R, Chochinov H, Higginson I. Assessing the feasibility,
acceptability and potential effectiveness of Dignity Therapy for people with
advanced cancer referred to a hospital-based palliative care team: Study
protocol. BMC Palliative Care. 2009;8(1):5.
6.
Jafari N, Farajzadegan Z, Zamani A, Bahrami F, Emami H, Loghmani A. The effect
of spiritual therapy for improving the quality of life of women with breast cancer:
A randomized controlled trial. Psycho-Oncology. 2011;20:260-1.
7.
Jafari N, Farajzadegan Z, Zamani A, Bahrami F, Emami H, Loghmani A. The effect
of psycho-spiritual therapy for improving the quality of life of women with breast
cancer: A randomized controlled trial. European Psychiatry. 2012;27.
8.
La KP, Mok E, Lai T. A meaning-centred psychosocial intervention for terminally ill
patients in Hong Kong. Psycho-Oncology. 2011;20:137.
9.
Riepma I, Steunenberg B, De Bree R, et al. Power of the past: A randomized
controlled trial testing the efficacy of a life review therapy in depressed palliative
cancer patients. Psycho-Oncology. 2011;20:219-20.
10.
Turner J, Kelly B, Clarke D, et al. A randomised trial of a psychosocial intervention
for cancer patients integrated into routine care: the PROMPT study (promoting optimal
outcomes in mood through tailored psychosocial therapies). BMC Cancer. 2011;11(1):48.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
270
Appendix D
Full list of included studies
Conceptualisation (n = 125) Appendix B
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
18.
19.
20.
21.
22.
Abraham A, Kutner JS, Beaty B. Suffering at the end of life in the setting of low
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Palliative Medicine. 2000;14(6):499-507.
Arman M, Rehnsfeldt A. The hidden suffering among breast cancer patients: A
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Breitbart W. Spirituality and meaning in supportive care: spirituality- and meaningcentered group psychotherapy interventions in advanced cancer. Supportive
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Breitbart W, Gibson C, Poppito Shannon R, Berg A. Psychotherapeutic
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Chapman C, Gavrin J. Suffering and its relationship to pain. Journal of Palliative
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Chapman CR, Gavrin J. Suffering and the dying patient. Journal of
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Cherny NI, Coyle N, Foley KM. Suffering in the advanced cancer patient: A
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24.
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28.
29.
30.
31.
32.
33.
34.
35.
36.
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39.
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Abbreviations
ADHS
Adult Dispositional Hope Scale
BHS
Beck Hopelessness Scale
CCCS
Chinese Cancer Coherence Scale
CCT
Controlled Clinical Trial
ELQ
Existential Loneliness Questionnaire
ESI-R
Expressions of Spirituality Index – Revised
FACIT
Functional Assessment of Chronic Illness Therapy
FACIT-Sp
Functional Assessment of Chronic Illness Therapy – Spiritual WellBeing
HAI
Hopelessness Assessment in Illness
HD
Hope Differential
HDI
Helen Dowling Institute
HDS
Hope Differential – Short
HHI
Herth Hope Index
HHS
Herth Hope Scale
HQLI
Hospice Quality of Life Index
ICQ
Illness Cognition Questionnaire
ICS
Internal Coherence Scale
LAP
Life Attitude Profile
LASA
Linear Analogue Scale Assessment
LEQ
Life Evaluation Questionnaire
LTQL
Long-Term Quality of Life instrument
MHS
Miller’s Hope Scale
MiLS
Meaning in Life Scale
MIST
Meaning in Suffering Test
MLQ
Meaning in Life Questionnaire
MSSE
Mini-Suffering State Examination
NHMRC
National Health and Medical Research Council
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
285
NHS
Nowotny Hope Scale
PEACE
Peace, Equanimity, and Acceptance in the Cancer Experience
PICO
Population, Intervention, Control, Outcome
PMCPI
Perceived Meanings of Cancer Pain Inventory
PoCoG
Psycho-oncology Co-operative Research Group
PRISM
Pictorial Representation of Illness and Self Measure
QLI
Quality of Life Index
QLI-CV
Quality of Life Index – Cancer Version
QOL-CS
Quality of Life – Cancer Survivors
QOLC-E
Quality of Life Concerns in the End of Life
QUAL-EC
Quality of Life at the End of Life – Cancer
RCT
Randomised Controlled Trial
SAHD
Schedule of Attitudes toward Hastened Death
SDS
Spiritual Distress Scale
SELT-M
Skalen zur Erfassung von Lebens Qualitat bei Tumorkrankenmodified version
SHI
Spiritual Health Inventory
SIS
Subjective Incompetence Scale
SISC
Structured Interview for Symptoms and Concerns
SMiLE
Schedule for Meaning in Life Evaluation
SNI
Spiritual Needs Inventory
SOC
Sense of Coherence
SOMP
Sources of Meaning Profile
SRPB
Spirituality/ Religion/Personal Beliefs
SPS
Spiritual Perspective Scale
STM
Spirituality Transcendence Measure
STS
Self Transcendence Scale
SWB
Spiritual Well-Being
WHOQOL
World Health Organization’s Quality of Life Measure
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context
286
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