Download The lived experience of surviving at least five years after a

The Royal Marsden
“My brush with prostate cancer”
The lived experience of surviving at least five years
after a diagnosis of prostate cancer received at or after
the age of sixty-five.
RCN International Nursing Research Conference. Edinburgh 2016
Dr. Natalie Doyle RN DNurs MSc BSc
Nurse Consultant - Living With & Beyond Cancer
The Royal Marsden NHS Foundation Trust, London, UK
United Kingdom Oncology Nursing Society (UKONS) Immediate Past President
London Cancer Alliance (LCA) Survivorship Pathway Group Chair
Cancer Nursing Partnership (CNP) Co-Chair
1
Background (1)
• Aging is a significant factor in the development of
cancer
• In the UK, 63 per cent of cancers are diagnosed
in people over the age of 65 years and more than
a third are in people aged 75 years or over
(CRUK 2014a)
• By 2051, the proportion of people in the UK aged
over 65 years is predicted to increase from 17 to
24 per cent and from 2 to 7 per cent in those over
85 years (Office for National Statistics 2012)
Background (2)
•
•
Prostate cancer is the most common cancer in men in developed countries (Ferlay et
al. 2013)
•
Rapidly increasing incidence, especially in those aged at least 65 years (Bray et
al. 2010, Maddams et al. 2009)
•
In 2012 it was estimated that 1.1 million men worldwide were diagnosed with
prostate cancer, 45,406 in the UK, about 12 to 14 per cent of the total cancer
incidence (Ferlay el al 2013)
•
Incidence rates have more than tripled over the last 35 years but this is probably
linked to the increasing use of Prostate Specific Antigen (PSA) testing (CRUK
2014b)
The clinical follow-up of men treated for localised prostate cancer in the UK has
followed the traditional medical model of gradual reduction in attendance but with no
defined end point
•
The status quo has recently been challenged with the introduction of a proposal
for stratified pathways of follow-up calculated on disease and individual risk
factors that questions the rationale for continuous follow-up in the face of no
evidence
(DH 2013a, DH 2013b, National Cancer Survivorship Initiative
(NCSI) 2013
Rationale
•
Cancer Reform Strategy (DH 2007)
•
National Cancer Survivorship Initiative 2008
•
NCSI Improving Outcomes: A Strategy for
Cancer. 4 priority transformation solutions
Stratified pathways of care
Physical activity,
Patient Reported Outcome Measures (PROMS)
Recovery Package
1.
2.
3.
4.
(Department of Health, Public Health England and
NHS England 2013)
Rationale
Research question and methodology
“What is the nature of the
lived
experience of surviving at
least five
years after a diagnosis of
prostate
cancer received at or after
the age
of sixty-five?’
– Open exploration lends itself
to an interpretivist paradigm
to understand the experience
– Phenomenology is the
methodology most closely
associated with
understanding the lived
experience of individuals
(Creswell 2013)
– Phenomenology fits within a
constructivist perspective
(Crotty 1998)
Phenomenology
– Edmund Husserl (1859-1938)
– Martin Heidegger (1889-1976) developed
phenomenology based upon the concept of Dasein,
where one can only understand existing through
one’s own being, one’s own existence (Heidegger
1962, Koch 1995, Crotty 1996)
– Within Heidegger’s phenomenology is the
awareness of our own selves and the concomitant
positive use of self during the research process
(Rapport 2005, McKenna et al. 2014)
Phenomenology
– Phenomenology was the qualitative research
methodology most suited to illuminate the lived
experience of ten men over the age of sixty-five years
diagnosed with prostate cancer at least five years
previously
Method
– If you seek to be familiar with how
people understand their world, talking
to them is the most appropriate
method (Kvale 2007)
– Interviews allow for a flexible approach
with minimum structure but maximum
depth in accordance with the principles
of interpretive phenomenology (Tod
2010)
Ethics
– All appropriate ethical and regulatory approval
was sought and granted from the host
organisation, the NHS Research Ethics
Committee (REC) and the University
– The REC challenged eight points, of which five
were procedural and three were philosophical
– Responded to these challenges during the
meeting and full ethical approval was
confirmed July 2011
Purposive sampling
Inclusion Criteria
A diagnosis of prostate cancer at
or after the age of 65.
Received anti-cancer treatment
with no recurrence at the cancer
centre.
Survived at least five years from
diagnosis.
Not receiving any acute treatment
at the time of interview.
Able to give informed consent.
Able to communicate effectively in
English.
Exclusion Criteria
Receiving active curative
treatment.
Refused active curative
treatment and therefore
receiving supportive and
palliative care only.
Over the age of 85 years.
Recruitment process at a cancer centre in South
East England
Clinic list
reviewed
against criteria
by data
manager
several weeks
in advance
Candidates
identified
Team member
not involved in
clinical care
contacts 1st
person on list
Agreement &
interest: Letter of
introduction and
patient
information sheet
(PIS) sent by post
Researcher
telephones to discuss
study further
Interview conducted
If in agreement date
and time for
interview negotiated
No agreement
or interest: No
further
contact
At least
24hrs
after
receipt
of letter
No agreement
or interest: No
further
contact
Anonymity & confidentiality
– One way to help participants understand the
implications of anonymity and confidentiality
is to facilitate them to choose their own
pseudonym (Tod 2010)
– On reflection, the unintended consequence
for me was that the pseudonym ‘became’
the participant’s name and synonymous
with their identity and character
Data analysis…the challenge
– Heidegger considered life to be a continual
process of listening, interpreting and deriving
meaning through our own personal experiences
and beliefs (Heidegger 1962, McConnell-Henry
et al. 2011)
– Within interpretive phenomenology there can be
no method only tradition, the use of any
framework too structured would be contrary to
the philosophical underpinning (van Manen
1990)
Data analysis …the solution
– A framework for analysis was taken from van Manen
(1984) and van Manen (1990) and used intuitively in
an iterative fashion, creating a hermeneutic circle of
interpretation
Data analysis
Methodological outline for doing phenomenology
A. Turning to the Nature of Lived Experience
1. Orientating to the phenomenon
2. Formulating the phenomenological question
3. Explicating assumptions and pre-understandings
B. Existential Investigation
4. Exploring the phenomenon: generating “data”
4.1 Using personal experience as a starting point
4.2 Tracing etymological sources
4.3 Searching idiomatic phrases
4.4 Obtaining experiential descriptions from subjects
4.5 Locating experiential descriptions in literature, art etc.
5. Consulting phenomenological literature
C. Phenomenological Reflection
6. Conducting thematic analysis
6.1.1 Uncovering thematic aspects in lifeworld descriptions
6.1.2 Isolating thematic statements
6.1.3 Composing linguistic transformations
6.2 Gleaning thematic descriptions from artistic sources
7. Determining essential themes
D. Phenomenological Writing
8. Attending to the speaking of language
9. Varying the examples
10. Writing
11. Rewriting: (A) to (D) etc.
(van Manen 1984)
Data analysis
Structures for presentation of phenomenological description
•Thematically, using the emerging themes as a guide
•Analytically, following the methodological activities
•Exemplificatively, declaring the essential nature of the phenomenon and then
presenting exemplars
•Existentially, weaving one’s description around the existentials of
temporality (lived time), spatiality (lived space), corporeality (lived body)
and communality (lived relationship to others)
•Exegetically, writing in a dialogical way with the treatise of another
phenomenological author.
(van Manen 1984)
Van Manen’s four fundamental
existentials of human experience
Existential
Description
Spatiality
Felt space that affects how a person feels and is a
category for inquiring into how the day-to-day affairs
of life are experienced. This felt space could be
described as a place in which a person feels
comfortable, such as at home. The comfortable
space is altered if an individual goes into unfamiliar
territory, placing the person in an uncomfortable
position.
Corporeality
Being bodily present in the world. The physical
presence can reveal or conceal aspects about a
person. The lived body demonstrates that the body
does not always show on the outside what is going
on inside.
Temporality
The temporal way of being in the world. The
dimensions of past, present, and future become a
person’s temporal landscape – subjective time
versus clock time. Through hopes and expectations,
a person can have a perspective on life to come, or
such perspective may be lost in desperation.
Relationality
The lived human relations shared with others in the
interpersonal space shared with them. When a
person relates to others, he or she develops an
impression of what that person is like, which can be
affirmed or altered in interactions with them.
Based on van Manen (1990) and reproduced with kind permission from
Krumwiede and Krumwiede (2012)
Trustworthiness
– Trustworthiness: credibility,
transferability, dependability and
confirmability (Lincoln and Guba 1985)
– Reflexivity: the legacy of positivist,
empirical research is the obsession of
qualitative researchers with rigour
(Koch and Harrington 1998)
– Member checking was rejected
(McConnell-Henry et al. 2011, Norlyk
and Harder 2010)
Findings
Demographic details of the participants ‘surviving at
least five years after a diagnosis of prostate cancer
received at or after the age of sixty-five years’
Years post
diagnosis
Age
bracket in
years
Interview length in
minutes
Quentin
15
80-84
51.18
Charles
8
75-79
33.39
Frank
8
75-79
19.41
Xavier
9
80-84
9.40
Derek
9
75-79
75.57
Arthur
6
75-79
39.10
Keith
9
80-84
23.18
Ian
7
70-74
39.10
Zachary
8
75-79
61.45
Victor
9
70-74
39.40
Pseudonym
Hinterland…an antecedent
‘a process beginning on diagnosis’
(Doyle 2008 p499)
“You know you measure your life by all the things
that happen”
(Zachary p15)
“…you are moulded by what you have gone through”
(Ian p11)
Ten themes and forty sub-themes within four existentials
Existential
Themes
Sub-themes
Spatiality
Cancer history
Other experience of
cancer
Worry versus not
worry
Other fish to fry
Prior warning of prostate cancer
Diagnosis
Treatment
Immediate after effects
The cancer centre
Compared to…
Prostate cancer means
Family with prostate cancer
Other cancers
Responsibilities
Put it out of my mind
It won’t kill me
It’s out of my hands
The appointment/ nothing changes
Family
Caring responsibilities
Interests
Not the big fish (main story)
Corporeality
Consequences
Nothing has
changed
Attitudes to sexual function
Sex in context
Other things happened
Reflection
Life goes on
No change
Sorry I can’t help you
Attitude
Temporality
Just one of those
things
Living my life
Que sera sera
Out of my control
Life is finite
Attitudes
Active life
At peace with myself
Social interaction
Optimism
Relationality
Concern of others
Discussion between
men
Support of family & friends
Eternal parent
Take the lead/set the tone
Support from community
Men don’t talk
But I will talk about it
Findings
Spatiality:
The themes revealed the factors that
influence the decision-making process and
the complex motivations making this
unpredictable peregrination worthwhile and
the optimistic yet realistic nature of all the
participants.
The hospital appointment is shown to
provoke anxiety disrupting the possibility of
cumulative recovery.
“…positive news makes me think ‘how
lovely’…bad news would obviously make me
feel sad. But you have to take it, one way or
the other” (Quentin p17)
Sub-Themes
Cancer History,
Other Experience of Cancer,
Worry versus Not Worry
Other Fish to Fry
Findings
Corporeality:
The two themes presented within the
existential of Corporeality,
‘Consequences’and ‘Nothing has changed’
confirmed the duality of the experience of
surviving cancer and showed how the
physically present participants did not
necessarily reveal to the world the impact of
their experience.
“I don’t think my prostate cancer, my brush
with prostate cancer, has had much effect on
my life” (Zachary p16)
Sub-Themes
Consequences
Nothing has changed
Findings
Temporality:
The themes presented within the existential
Temporality, ‘Just one of those things’ and
‘Living my life’ established the perspective of
the participants’ lives; how the past
experiences and current situation of each
individual shaped his way of being in the
world and his thoughts about the future.
“I must admit I’ve just sort of soldiered on”
(Derek p.6)
Sub-Themes
Just one of those things
Living my Life
Findings
Relationality:
The themes presented within the existential of
Relationality, ‘Concern of others’ and ‘Discussion
between men’, demonstrated the influence of
prostate cancer on the inter-personal relationships
of the participants. Pre-existing close relationships
in ‘Concern of others’ were shown to be either
active or passive sources of strength or raison
d’être.
The men themselves set the changing tenor of
these relationships in this context, as they took the
lead.
Some were crusaders provoking ‘Discussion
between men’ and others ranged through the
spectrum of possibilities to one participant who
kept his secret for eight years.
“So I’ve definitely saved one. The other one I think
I’ve helped him” Charles (p9)
Sub-Themes
Concern of Others
Discussion between Men
Summary of significant Findings
Theme
Significant Finding
Cancer History and
Other Experience of
Cancer
Role of inherent knowledge of cancer in decisionmaking.
Worry versus Not Worry
and Other Fish to Fry
Role of Prostate cancer, itself, not as primus inter pares
in hierarchy of concerns. Role of hospital appointment
rather than prostate cancer in provoking anxiety.
Consequences and
Nothing has changed
Role of viewing life holistically to create sine qua nom
balance between consequences of treatment and
contradictory interpretation that nothing as changed.
Just one of those things
and Living my Life
Role of coping as inherent natural state in line with
national and/or generational stereotypical
characteristics.
Concern of Others and
Discussion between Men
Role of hospital appointment rather than prostate cancer
in provoking concern in others. Role of positive
treatment and life after cancer experience in prompting
the active health promotion of prostate cancer
awareness.
Summary of Findings
The key finding is the aspiration to be ‘Living my life’
(Temporality) provided motivation for the odyssey through
cancer treatment:
Each man had unique motivation for undergoing treatment
for prostate cancer and each made his decision based in
part on what he already knew about cancer. The whole
experience was accommodated within the continuum of
each life and placed within a fluctuating hierarchy of
concerns. Any consequences of the treatment were
balanced within the personal context and a sometimes
multi-faceted post cancer treatment persona evolved to
suit each life.
Recommendations for practice
The four fundamental existentials of
human existence
Recommendation for practice
Quote
Spatiality: The beliefs and attitudes of
the person about cancer are
ascertained prior to making the
treatment decision.
Establish the unique understanding of
(prostate) cancer; agree a plan of care
and lay foundations for a trusting
partnership.
Spatiality: The continuing care phase
is centred on the understanding,
priorities and concerns of the person.
Reassess the terms of the partnership
and establish role of primary and
secondary care. Clarify understanding
of medical information and
interventions and ascertain life
priorities.
Corporeality: The identification and
management of treatment
consequences is unique to the person.
Facilitate on-going dialogue about
consequences of cancer treatment
wholly within the context of life
priorities.
“I think there are positive sides as
well as negative sides” (Frank p9)
Temporality: The changing nature of
coping and adaptation is unique to the
person.
Establish a shared understanding of
inherent coping strategies and facilitate
dialogue about subsequent changes in
circumstances.
I think also that we are all
measuring our life histories by
various chapter headings that occur”
(Zachary p14)
Relationality: The continuing care
phase is centred on the needs of the
person within their social context.
Promote recovery by minimising the
intrusion of medical intervention and
facilitating health promotion ventures.
“My daughter phoned me yesterday
and said, “I hope you are alright
dad, and I’ll phone you tomorrow”
(Quentin p7)
“Well I suppose I lived a normal life
through it all” (Frank p1)
“The word cancer – actually people are terrified
when they hear the word and I try to explain to them,
you know, a lot of people do survive”
(Corporeality: Frank p1)
With thanks to
–Professor Faith Gibson
–Professor Lesley Baillie
–Dr. Shelly Dolan & Professor Nicola Crichton
–The Royal Marsden NHS Foundation Trust
–The NIHR RM/ICR Biomedical Research Centre
–Dr. Cathy Hughes
–My family and friends
For my father Brian Doyle 1931-2014
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Contact Dr. Natalie Doyle
Nurse Consultant - Living With & Beyond Cancer
[email protected]
The Royal Marsden NHS Foundation Trust
Fulham Road
London SW3 6JJ
United Kingdom
Tel: +44 (0)207 352 8171