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The Breast Service Psychosocial Model
of Care Project
WCMICS Service Development Project Funding 2006/07
Part 1 – Hospital / Health Services
FINAL REPORT
MAY-DECEMBER 2007
PROJECT COORDINATOR: DR LAUREN WILLIAMS
PROJECT MANAGERS: MARG D’ARCY, PROFESSOR BRUCE MANN AND KATY WEARE
REPORT WRITTEN BY: DR LAUREN WILLIAMS. DECEMBER 14, 2007
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Contents
Acknowledgements ............................................................................................................................ 4
Project Overview ............................................................................................................................... 5
Background .................................................................................................................................................... 5
Purpose ........................................................................................................................................................... 5
Project Objectives .......................................................................................................................................... 6
Literature Review .............................................................................................................................. 7
Psychosocial concerns .................................................................................................................................... 7
Risk factors associated with psychosocial distress ......................................................................................... 8
Psychosocial care ........................................................................................................................................... 8
Staff Consultations .......................................................................................................................... 12
1. Assessing Psychosocial Concerns: Use of the Supportive Care Tool ...................................................... 13
2. Delivering effective Psychosocial Care: Referrals and Staff Training Needs .......................................... 14
2.1 Referrals ............................................................................................................................................. 14
2.2 Staff Education................................................................................................................................... 14
3. Psychosocial needs of women experiencing breast cancer .................................................................. 14
4. Other .................................................................................................................................................... 15
Summary .................................................................................................................................................. 15
Consumer Perceptions: Patient Interviews and Focus Groups................................................... 16
Method ......................................................................................................................................................... 16
Participants............................................................................................................................................... 16
Materials .................................................................................................................................................. 16
Procedure ................................................................................................................................................. 16
Results and Discussion ................................................................................................................................. 17
The Breast Service ................................................................................................................................... 17
Supportive Professionals ..................................................................................................................... 17
Sensitivity and communication from medical staff ............................................................................. 18
Settings ................................................................................................................................................ 18
Tangible Support ................................................................................................................................. 19
Psychosocial and psychological concerns ................................................................................................ 19
Psychosocial Well-being .......................................................................................................................... 20
Optimism, resilience and distraction ................................................................................................... 20
Faith in medical staff ........................................................................................................................... 21
Assessing psychosocial distress: The SCT .............................................................................................. 21
Psychosocial support: Professional, community, family, peer and individual ......................................... 22
Professional psychosocial support ....................................................................................................... 22
Community, family and peer psychosocial support ............................................................................. 22
“I’m not a group person”: Individual supports .................................................................................... 23
Suggestions for alternative supports .................................................................................................... 23
Summary ...................................................................................................................................................... 24
Action, recommendations and future directions .......................................................................... 24
The Breast Service Recommended Pathway for Psychosocial Support ....................................................... 27
References ........................................................................................................................................ 29
2
Expenditure Report......................................................................................................................... 31
Tables
Table 1: Overview of psychosocial issues experienced by women diagnosed with breast
cancer ....................................................................................................................................... 10
Table 2: Psychosocial risk factors associated with psychological distress and barriers to
support uptake .......................................................................................................................... 11
Table 4 Summary of patient demographics.............................................................................. 16
Table 5 Mode of participation .................................................................................................. 17
Table 6: Summary of main themes .......................................................................................... 24
Table 7: Staff consultations results .......................................................................................... 25
Table 8 Issues with the SCT identified by staff and patients ................................................... 26
Table 8: The Breast Service Psychosocial Model of Care ....................................................... 28
3
Acknowledgements
This project has been generously funded by Western & Central Melbourne Integrated Cancer
Service.
Both the RWH and the RMH are part of the Western & Central Melbourne Integrated Cancer
Service (WCMICS). Integrated Cancer Services are funded by the Victorian Department of
Human Services to implement the Victorian Government's Cancer Services Framework
across Victoria. The WCMICS extends from central Melbourne to Werribee working through
its seven public constituent hospitals including the Royal Women’s and Royal Melbourne
Hospitals. WCMICS also has broader involvement with private hospital services, GP
services, community based health and palliative care services and community, consumer
and carer support and self-help groups. The objectives of WCMICS are to:
Meet the needs of people with cancer living within its geographic area, as well as in other
metropolitan and regional ICS who use WCMICS services; and,
Enhance integration and coordination of cancer services within its area, including the
development of clear and formal communication processes, referral patterns and
relationships between its primary, secondary and tertiary services as well as with other ICS
services.
The Psychosocial Model of Care Project team would like to thank WCMICS for its support in
enabling the opportunity to improve the quality of psychosocial care to women with breast
cancer.
The Psychosocial Model of Care Project team would also like to thank the following
individuals and organisations.
 Staff from Royal Women’s Hospital and Royal Melbourne Hospital who participated in
the ‘staff consultations’ phase of the project.
 Women attending The Breast Service who generously donated their time and
thoughts in the focus groups and interviews.
 BreaCan for their information and support.
 Michelle Fleming, WCMICS, for her support.
Note: This report is best read in conjunction with the Royal Women’s Hospital and Royal
Melbourne Hospital Current Breast Care Service Profile and Model of Care. (2007).
4
Project Overview
Background
Recently, the Royal Women’s Hospital and Royal Melbourne Hospital breast services
merged to create The Breast Service in an attempt to create a centre of excellence for breast
services in Victoria. In the near future (June 2008) the Royal Women’s Hospital will relocate
next door to the Royal Melbourne Hospital which will enhance the ability to effectively
implement coordinated and integrated psychosocial care within a single service across two
sites. Currently, a large proportion of the psychosocial care coordination is managed by
Breast Care Nurses. Other health professionals also play a vital role in assessing and
managing the psychosocial needs of women diagnosed with breast cancer. The referral
pathway to other health professionals and support services, has been found to be
inconsistent which has been shown1 to lead to some women receiving too much or too little
support. Another component of the timely and effective delivery of psychosocial care is
appropriate staff education on service availability, communication skills and referral
procedures. In this case it is important to acknowledge the information requirements for
clinical staff to enhance their ability to detect indicators of distress and/or anxiety to make
appropriate referrals. Input from consumers can inform the current psychosocial model of
care so that service provision more accurately meets their needs. Moreover, validation of
consumer identified timelines of psychosocial care needs is also required to adequately
inform the project and enhance project outcomes. This is enhanced by the need to further
understand barriers to consumer referral uptake and multidisciplinary liaison of consumer
behaviours. Finally, the evidence-based foundation for psychosocial care is essential in
building a psychosocial model of care that satisfies both staff and patients.
Purpose
The aim of the psychosocial model of care2 project was to develop, implement and evaluate
a multidisciplinary model of psychosocial care. It has been consistently identified that women
diagnosed with breast cancer will experience psychosocial distress at various stages along
the disease trajectory. Based on the supportive care model, the psychosocial model of care
project will illustrate that the variety and level of intervention required at each stage of the
disease is specific to the individual. An assessment of psychosocial distress is applicable to
all women diagnosed with breast cancer, and includes both rural and urban women and
those from different socio-economic, culturally and linguistically diverse backgrounds.
Consequently, psychosocial care has been identified as a key area where The Breast
Service can improve its quality of care. The commencement of the multidisciplinary
psychosocial team and implementation of a psychosocial screening tool for use within The
Breast Service has enhanced coordination of and access to clinicians with expertise to
address patients psychosocial needs. Given that The Breast Service is still in its infancy, the
1
Based on the results of The Young Women’s Project (BSEP)
2
Psychosocial model of care refers to the way psychosocial services are provided to the patient at The Breast
Service. This includes the use of the Supportive Care Tool. For the current project, Psychosocial care refers to a
response from clinicians to all aspects of practical, emotional and psychological coping from diagnosis of breast
cancer, through active treatments (i.e. chemotherapy) and post-treatments (i.e. palliative care or adjustment to
survivorship).
5
current project will enable further investigation of the changes made to The Breast Service
from both a consumer and health professional perspective. The purpose of the Psychosocial
Model of Care Project is to evaluate and validate, and where applicable alter The Breast
Service’s current multidisciplinary psychosocial care model.
Project Objectives
The objectives of the Psychosocial Model of Care Project were to:
Provide a brief literature review of the psychosocial issues faced by women diagnosed with
breast cancer, the risk factors associated with psychosocial distress, the support services
and programs developed to assist women with breast cancer and the NHMRC clinical
practice guidelines for the psychosocial care of adults with cancer.
Provide an accurate reflection of the current psychosocial model of care from relevant
stakeholders. Relevant stakeholders include:
 Medical staff and breast care nurses
 Social Work
 Pastoral Care
 Psychology
 Psychiatry
 BreaCan
 Psychosocial Working Group3
Provide an updated and accurate reflection from consumers regarding:
 Their psychosocial needs.
 The level of psychosocial support they received from The Breast Service.
 How the psychosocial support assisted them with coping with breast cancer.
 Whether women felt comfortable discussing their psychosocial needs with members
from The Breast Service.
 Whether there was any psychosocial support they would have liked to receive and did
not, including issues or barriers to support service uptake.
 Their opinions on the structure and delivery of the current psychosocial model of care
from The Breast Service. This includes feedback on the delivery of the psychosocial
assessment tool (applicability and timeliness).
Evaluation of the use of the Supportive Care Tool (SCT) (psychosocial screening tool), a
review of referrals, service usage and documentation procedures.
Clear identification of issues based on consumer and health professionals reports and
patient file audit.
3
Clinicians attending the psychosocial working group were from the departments of nursing,
social work, psychology, women’s services, pastoral care, medicine, psychiatry and music
therapy.
6
Recommendations and/or revisions to the current psychosocial model of care including
suggested prioritisation of findings.
Literature Review
Over a quarter of a million women will hear the diagnosis of breast cancer every year
(Institute of Medicine, 2004). Whilst breast cancer has the largest surviving population
(Institute of Medicine, 2004), psychosocial distress plays a significant role in the journey
experienced by women diagnosed with this disease. Broadly defined, psychosocial factors
refer to the range of emotional, psychological, physical and practical challenges faced by a
woman diagnosed with breast cancer. Whilst the NHMRC guidelines (2003) provide an
extensive synthesis of the psychosocial aspects of cancer, the following review provides a
brief synopsis of the psychosocial issues and care important for women specifically
diagnosed with breast cancer.
Psychosocial concerns
There is a growing body of research that has highlighted the importance of
considering a wide range of social and psychological factors that impact on diagnosis and
treatment outcomes along the patient journey. As outlined in Table 1, many of the common
psychosocial concerns of women with breast cancer include fear of recurrence, physical
symptoms (such as fatigue, trouble sleeping, and pain), body image disruption, sexual
dysfunction, treatment related anxieties, depression, intrusive thoughts about illness,
marital/partner communication and relationship difficulties, and existential concerns
regarding mortality (Institute of Medicine, 2004; NHMRC, 2003; Schou, Ekeberg, Sandvik,
Hjermstad, & Ruland, 2005). Although many women will encounter and manage some
degree of psychosocial distress following diagnosis, it is estimated that as many as 30
percent of women will experience episodes of persistent psychosocial distress that will
interfere with their ability to cope with cancer treatment and life in general (Institute of
Medicine, 2004).
The type and nature of psychosocial distress experienced by a woman diagnosed
with breast cancer has been found to be highly individual and strongly influenced by her
personal history, psychosocial stage and life-cycle concerns (Schain, 1997; Schou et al.,
2005). Whilst the risk factors of psychosocial concerns are addressed in subsequent
subsections, another factor that can be viewed as relevant in assessing and addressing the
psychosocial needs of women with breast cancer is the stage of their disease and treatment.
For example, body image concerns and sexual/relationship problems are more likely to occur
following breast surgery, particularly a mastectomy, and adjuvant treatment or chemotherapy
(due to hair loss) (Fobair et al., 2006). As a result, body image concerns have been raised as
important dimension for psychosocial assessment for women diagnosed with breast cancer
(Ogle, & Ullstrup, 2006). Likewise, depression and anxiety are reportedly higher during
breast cancer treatment and are associated with decreased quality of life and mobilisation of
supports and increased physical symptoms and fear of mortality (Badger, Segrin, Dorros,
Meek & Lopez, 2007). Moreover, emotional and cognitive functioning has been found to be
reduced following diagnosis (Schou et al., 2005). This can have serious consequences on a
woman’s preferences, treatment decisions and outcomes. For example, when anxiety is
high, women may chose an option that will reduce anxiety in the short-run, but may not
maximise their long-term outcomes (Shechter & Zeidner, 1990). As a result, the significance
7
of psychosocial issues in breast cancer diagnosis and treatment have been deemed
important throughout the different stages along the disease trajectory.
Risk factors associated with psychosocial distress
Further to our understanding of the range of psychosocial issues that present for
women at different points of the disease trajectory is consideration of the risk factors
associated with psychological distress for women diagnosed with breast cancer. As
highlighted in Table 2, such risk factors may include age, social support, social and
geographic isolation, drug and alcohol issues, socio-economic status, sexual and
reproductive issues, and pre-existing mental issues. Other issues such as marital
status/single mother (Behar, 2000) and ethnicity (Fobair et al., 2006) have also been
identified as important dimensions to assess. Several psychosocial explanations have been
offered to account for the poorer outcomes experienced by Indigenous women. For example,
lack of culturally relevant information, cultural attitudes towards cancer that leads to delay in
diagnosis, appropriateness of services understanding cultural needs and less family and
social support mechanisms. These cultural barriers to treatment are also likely applicable to
other cultural groups residing in urban settings whereby large percentages of women seeking
treatment are not Caucasian Australian. For example, 42% of women attending the Royal
Women’s Hospital Breast Clinic stated that their country of origin was not Australia (Royal
Women’s Hospital and Royal Melbourne Hospital Current Breast Care Service Profile and
Model of Care, 2007). Different ethnic groups included Lebanese, Filipino, Italian,
Vietnamese, Chinese and Greek.
Another factor that has been consistently identified as impacting on a woman
diagnosed with breast cancer vulnerability to psychosocial concerns is age (Clayton, 2004;
Sammarco, 2001; Tallarico, Figueiredo, Goodman, Kreling & Mandelblatt, 2005). Perhaps
surprisingly, it is younger women who have been found to have more problems coping with a
diagnosis of breast cancer than their older counterparts. Some authors have argued that
greater role demands such as marriage, children and careers may account for these findings
(Bloom & Kessler, 1994), whereas others have suggested that younger women often have
more cancer–related issues to manage, such as early menopause, jeopardised sexual and
reproductive functioning, that can reduce their quality of life following diagnosis (Schrover,
1994; Winchester, 1996). On the other hand, older women diagnosed with breast cancer are
more likely to suffer the consequences of compromised social support, reduced financial
availability, reduced independence and impaired cognitive abilities (Silliman, Dukes, Sullivan,
& Kaplan, 1998; Silliman, Troyan, Guadagnoli, Kaplan, & Greenfield, 1997; Tallarico et al.,
2005).
Psychosocial care
There are several interventions that have some demonstrated efficacy in improving
psychological morbidity associated with breast cancer. For example, support from a
8
nurse/breast care nurse, exercise, telephone counselling, computer/online support,
psychological and psychiatric care and social supports have all been found to improve the
psychosocial status of women diagnosed with breast cancer (Badger et al., 2007; McArdle,
et al., 1996; Shaw, McTavish, Hawkins, Gustafson, & Pingree, 2000). In a review of 31
randomized clinical trials of various psychosocial interventions involving women with breast
cancer, the majority of the results highlighted important psychological benefits, including
improved mood, enhanced coping, reduced phobias, decreased levels of traumatic stress
and severity of other psychiatric symptoms, increased vitality, and better social and role
functioning and quality of life (Institute of Medicine, 2004). Likewise, in a review of another 31
studies, it was found that 25 of these studies (80.6%) showed that social support, marriage,
coping strategies such as minimising and denial was linked to better breast cancer prognosis
whilst, depression and constraint of emotions was linked to decreased breast cancer
survival. A reduction in depression and anxiety has also been reported with the
implementation of exercise programs and telephone counselling for women with breast
cancer (Badger et al., 2007).
As a result, the clinical practice guidelines for the psychosocial care of adults with
cancer (NHMRC, 2004) highlight the need for further research regarding “strategies to
improve the detection of psychological difficulties in people with cancer” (p. 136) and “optimal
methods for psychosocial referral and practice strategies to improve uptake” (p. 136).
Enhancing our knowledge of the psychosocial support needs and gaps for women with
breast cancer is vital in empowering and equipping health professionals with the necessary
skills and resources to help patients with the range of psychosocial issues that arise along
the breast cancer treatment continuum.
9
Table 1: Overview of psychosocial issues experienced by women diagnosed with breast
cancer
Psychosocial
Issues
Description
Psychosocial
Issues
Description
Emotional
Tearfulness, fear and
anger
Physical issues
Self concept
(personal, social and
physical)
A diagnosis can affect
how a person perceives
themselves
Fertility/pregnancy
Body image
Can be higher among
those who have
undergone breast
conserving surgery
versus mastectomy.
Feeling less attractive,
less feminine
Sexual problems (1050% include loss of
libido, change in sexual
activity, decreased
satisfaction). Related to
body image, weight
loss/gain. Highest in
women who have had a
mastectomy
Relationship issues,
new relationship post
diagnosis
Financial
Chemotherapy induced
nausea and vomiting,
pain, fatigue,
lymphoedema,
malnutrition, weight
loss/gain
Contraception, pregnancy
and recurrences,
treatment on pregnancy,
loss of fertility,
miscarriage and
pregnancy termination
Costs for treatment,
prostheses, aids,
supports, surgery,
physiotherapy, travel and
accommodation, loss of
income,
Major psychological
disorders
e.g. PTSD, depression,
anxiety
End of life issues
Anxiety
Symptoms include
heightened physical
arousal, insomnia,
agitation, phobia
Survival issues
Depression
Inability to cope with
disease, impairment in
social and vocational
functioning
Heightened at particular
times during the
disease trajectory, e.g.
disease recurrence.
Intrusive thoughts
about the disease.
Sexuality
Interpersonal
problems
Stress
Practical
Self care, child care for
treatment, physical
activity
Existential/spiritual
Concerns about
death/mortality, quality of
life, transcendence,
meaning of life, religiosity
All aforementioned
psychosocial issues are
heightened.
Sexual and emotional
issues, concerns with
recurrence, redefining a
life that is different from
‘pre-cancer’ life.
10
Table 2: Psychosocial risk factors associated with psychological distress and barriers to
support uptake
Psychosocial Risk Factors
Description
Cultural and linguistic diversity
Cultural sensitivity (understanding of cultural
background, taboos, language barriers, gender
roles, social and community system and supports),
need for interpreter, culturally sensitive assessment
tools and support services.
Age
Evidence to suggest that young patients are more
vulnerable to psychosocial distress and health
professionals avoid discussions with younger
patients about these issues. Older may have comorbid problems, issues wit the aging of the
population.
Geography
Geographic isolation, travel, financial issues, long
stays away from home, impact on family members,
limited services and social support.
Sexual orientation
Higher rates of psychosocial distress in
homosexuals. Added stigmatisation, stereotyping
(from society and health professionals).
Occupation
Active versus inactive occupation and/or lifestyle.
Physical symptoms may affect vocational abilities.
Also a consideration for women engaged in rural
lifestyles.
Personal




Not having the words to describe their feelings,
perceiving that the doctor is too busy
ashamed of admitting problems,
Perceived lack of support from family and
friends
 Perceived stress of partner and children
 Social impairment
 Pre-existing mental issues (i.e. depression,
anxiety)
Barriers to Supports
Description
System
Lack of relevant professionals
Professional
Work culture that acknowledges psychosocial
needs of patients, professional skill sets,
multidisciplinary approach to care, standardised
psychosocial model of care and referral pathways
Patient
Denial, increased psychosocial risk factors as
outlined above, stigma regarding accessing
psychosocial assistance, perceived limits in
availability of supports, perceived time and
resources to access supports
11
Staff Consultations
The first phase of the Psychosocial Model of Care Project was to consult staff on their
perceptions of the type and quality of psychosocial care offered to women attending The
Breast Service. Table 3, depicts the departments and health professionals employed for the
staff consultations. An analysis of the staff discourse regarding the current delivery of
psychosocial care by The Breast Service was conducted. The report provides a description
of the main themes, from most popular to least popular, associated with the delivery of
psychosocial care provided by The Breast Service. The two main themes perceived by staff
were; assessing psychosocial concerns and delivering effective psychosocial care. Other
themes included, psychosocial needs of women experiencing breast cancer and
improvements in information and supports delivery and promotion.
Table 3: Outline of department and staff employed for the staff consultations.
Department
Staff
Social Work
Cynthia Holland, Lisa Lentini-Shortland, Debbie
Kertesz
Pastoral Care
Christine Hennequin, Judy Rigby
Psychology
Deborah Leighton, Fiona Judd
Psychiatry
Fiona Judd, Alex Holmes
Medical
Bruce Mann
Nursing
Bronwyn Flanagan, Kerry Shanahan, Robyn
Cordner, Liz Williams
Other
BreaCan
Di Missen, Helen Shepherd
Peter MacCallum Cancer Centre
Tina Griffiths
Acknowledgements
Marg D’Arcy, Renee Cassidy, Melanie Snow
12
1. Assessing Psychosocial Concerns: Use of the Supportive Care Tool
The current method of assessing psychosocial needs of patients with breast cancer relies
heavily on the Breast Care Nurses as main providers of this service. Although the role of
Breast Care Nurses in assessing psychosocial needs was viewed by most as invaluable, it
was commonly agreed that psychosocial assessment from additional health professionals
could enhance the validity of the assessment procedure.
The recent introduction of the SCT was viewed as beneficial for acknowledging and
recording psychosocial concerns (see Attachment 1). Specifically, it was viewed as a method
of having women’s psychosocial concerns ‘on paper’ and also as a means for ‘flagging’
psychosocial concerns that were not raised in one-on-one discussions with the Breast Care
Nurse. Many staff raised several issues regarding the current use of the SCT in assessing
and supporting psychosocial concerns experienced by women.
Most importantly, it was reported by the majority of staff that they did not access the
completed SCT present in the patient’s medical file. This was predominantly due to staff
being unaware that the SCT was present in the patient’s medical file and/or following referral,
they were not accessing the patient’s medical file and the completed SCT. This finding
suggests that further development into the effective use of the SCT is needed. Options
provided by staff to improve the use of the SCT for assessing psychosocial concerns and
making referrals included:
 Using other more specialised tools for areas of concern. For example, if a patient
indicates one or more ‘yes’ responses to the ‘emotional health’ section of the SCT,
the patient could complete the K10, a 10 item self report questionnaire that identifies
grades of anxiety and depression.
 Using supplement segmented versions of the SCT at subsequent appointments. For
example, the ‘emotional health’ section could be used again post operatively.
 Inclusion of other tools at relevant times (e.g. body image assessment following
chemotherapy/mastectomy).
 Criteria for referral following completion of the SCT. For example, if ‘yes’ to item
regarding suicidal thoughts, immediate referral to psychiatry.
 Inclusion of a bridging assessment following completion of the SCT. For example, a
multidisciplinary psychosocial ‘team’ or ‘worker’ would assess the appropriate referral
source.
 Inclusion of questions regarding patient strengths. Current focus of SCT is on
negative experiences. Identification of strengths can provide alternative options for
support. For example, if patient loves exercising, an exercise program may enhance
emotional health and reduce the need for professional involvement.
13
2. Delivering effective Psychosocial Care: Referrals and Staff Training
Needs
The delivery of psychosocial care also relies heavily on the Breast Care Nurses using their
experience and initiative to activate and enforce referrals to appropriate supports. It appears
that until recently, referral options have been limited and as a result there has been a heavy
reliance on social work for the majority of concerns raised by women (in person or in the SCT
assessment).
The majority of staff stated that enhanced continuity of care was needed. Specifically, it was
reported that referral follow-up was crucial and at present inadequate. It was further reported
that no clear and consistent referral pathway and criteria was identified, and that staff
education along several dimensions was needed. These areas are discussed in more detail
below.
2.1 Referrals
Follow-up on referrals is reportedly needed to enhance continuity and quality of care. The
main themes associated with referrals were clearer identification of:
 referral uptake
 barriers to uptake
 referral outcomes
 referral pathway and criteria (see point made earlier about criteria for making
referrals)
2.2 Staff Education
Staff education and training was consistently reported by staff as an important dimension in
delivering effective psychosocial care. The following areas were identified as representing
fruitful avenues for staff education and training to enhance the appropriateness of
psychosocial referral and support success.
 Enhanced understanding of the roles of relevant health professionals and support
services.
 Enhanced understanding of the type and nature of supports offered and available
from relevant health professionals and support services.
 Enhanced understanding of the psychosocial needs of women experiencing breast
cancer, including culturally and linguistically diverse (CALD) women.
 Training in administering and interpreting the SCT from a range of health
professionals.
 An online resource manual that assists health professionals in accessing internal and
external supports.
3. Psychosocial needs of women experiencing breast cancer
A less salient theme that emerged from the staff consultations related to a need for health
professionals to have an accurate and updated knowledge of the psychosocial needs of
women experiencing breast cancer. This included knowledge of women’s preferences for
14
varying health professionals (e.g. are there stigmas attached to certain departments, do
women prefer professional support from one department over another), an updated
knowledge of the psychosocial needs of women and an updated knowledge of the stages
along the disease trajectory that elicit heightened distress and warrant psychosocial
intervention.
4. Other
The following areas were perceived by a small number of staff as warranting further
assessment to enhance the assessment and delivery of psychosocial care.

Promoting both internal and external support services and programs to
patients could be enhanced to increase support uptake.

Dissemination of information (amount and type) at appropriate times
may require revision.

Provision of a definition of psychosocial care including ‘who’ is
supposed to be providing it.

Waiting lists for accessing internal supports needs to be addressed.

Employing BreaCan’s volunteers could improve the delivery of
psychosocial care.

Communication between BreaCan and The Breast Service could be
improved to avoid support duplication.
Summary
The aim of the staff consultations was to identify the main themes associated with the current
model of psychosocial care employed by The Breast Service. The main themes that were
identified by staff were in relation to methods and procedures for assessing psychosocial
distress, making referrals and delivering effective psychosocial supports. The results from
the staff consultations highlight several areas for further investigation. These include, and are
not limited to, refinement of the use of the SCT and supplement assessment tools,
standardised referral pathway and criteria, multidisciplinary referral procedures, referral
follow-up procedures and staff education. The results from the staff consultations will
facilitate enhancements to the assessment and delivery of psychosocial care by The Breast
Service to women experiencing breast cancer. Moreover, the results from the staff
consultations were used to inform a series of interviews and focus groups with women with
breast cancer. The interviews and focus groups will also be used to evaluate women’s
experience of The Breast Service in addressing their psychosocial needs.
15
Consumer Perceptions: Patient Interviews and Focus
Groups
Method
Participants
A total of thirteen women diagnosed with breast cancer attending The Breast Service
participated in either a focus group or individual interview. A summary of the participants
including age, language, attending hospital, family characteristics and treatment is provided
in Table 4. Overall, the age of participants ranged from 33 to 87 years with four women
coming from non-English speaking backgrounds (NESB).
Table 4 Summary of patient demographics
Mean NESB
4
Age
(%)
Attending Hospital
(%)
RWH
59.7
4
5
(31%) (38%)
RMH
0
Both
8
(62%)
Family
(%)
Single
5
(38%)
Partnered
8
(62%)
Treatment
(%)
Mastectomy5
9
(69%)
Chemotherapy
6
(46%)
Radiation
Therapy
7
(54%)
Materials
A semi-structured interview guide was developed for the project by the project coordinator in
conjunction with the director of the breast service, the project manager and the RWH director
of mental health (see Attachment 2). The interview guide was also based on a review of
relevant literature and the results from a previous study conducted at The Royal Women’s
Hospital that examined the psychosocial concerns of young women with breast cancer6. The
interview guide contained open ended questions that assessed patients’ experience with The
Breast Service, psychosocial concerns such as anxiety and depression, perceptions of
psychosocial assessment procedures, including the screening tool employed by The Breast
Service staff and psychosocial care such as support service attendance and family support.
Specific questions include “Tell me about your experience with The Breast Service”? and
“Have you experienced any psychosocial concerns”? A digital Dictaphone was used to
record the interviews/focus groups.
Procedure
The Royal Women’s Hospital breast care nurse provided the project coordinator with a list of
all patients that had attended/were attending The Breast service for the last six months. A
5
Mastectomy includes partial, subcutaneous (when the breast tissue is removed and the skin
and nipple is retained) and total.
6
\
BSEP Project
total of 27 women appeared on this list. The project coordinator wrote to all of these women
inviting them to participate in the study (see Attachment 3). Interested women contacted the
project coordinator via telephone or in writing to organise a time to be interviews/attend a
focus group. The mode of participation was relatively evenly distributed and is depicted in
Table 5.
Table 5 Mode of participation
Focus Group (%)
One-on-one telephone interview
(%)
One-on-one interview in
person (%)
N=5 (38.4)
N=4 (30.8)
N=4 (30.8)
Focus groups and one-on-one personal interviews were conducted at The Royal Women’s
Hospital in a private room. Telephone interviews were arranged via telephone for a time that
suited participants. The interviews/focus groups were later transcribed to facilitate coding and
analysis. The main themes that are reported are those that were most salient or common for
the participants. Within these themes, several sub-themes emerged which were than
compared with patient demographics to facilitate interpretations of the findings.
Results and Discussion
The Breast Service
Participants were asked to describe their experience with The Breast Service and to note
what they found most helpful or supportive and what they found least helpful or supportive.
Overall, the majority of patients were satisfied with the breast clinics at both RWH and RMH.
“The service has been very supportive, caring and I feel like they genuinely care”.
(Melissa)
“[The Breast Service was] very good, I can’t say anything else. There is nothing to
improve, I was quite happy, I was treated very well, I felt very comfortable with
everyone, they made you feel as if you were the only one they were looking after, I
didn’t feel like I was in a production line, or I was just a number, and every time I went
back, they remembered my name, so it was very warm and welcoming.” (Jane)
The main themes that emerged related to satisfaction with supportive professionals,
sensitivity and communication from medical staff, settings and tangible support.
Supportive Professionals
All of the participants reported their satisfaction and appreciation of the support offered by
the breast care nurses. Participants expressed praise and a reduction in anxiety associated
with having the breast care nurses available to provide information, offer support, translate
‘medical lingo’, answer questions, clarify procedures and essentially having a contact person
to coordinate their care.
“I have been very satisfied with the breast service. I have been particularly happy with
the breast care nurses who have sat through with me since day one. The breast care
nurses have offered me reading, websites, which has been great because you don’t
always feel like talking to people when you have had a really bad day. I can then do it
17
in my own time when I feel up to it.” “Having the breast care nurses there when I see
the surgeon is also helpful. After the consultation the breast care nurse took me away
and explained it in plain English, which is great because we don’t often understand
what the doctors are saying and then I can use what the breast care nurse has said
to explain it to my family and friends”. (Melissa)
“If you have something you are anxious about, you have that contact
person…someone who remembers who you are…you don’t have to repeat yourself.”
(Joanne)
“Everyone has been very supportive and fantastic. I felt that I understood everything
that was happening. I enjoy being in hospital because I get a lot of support. I felt that
the staff empowered patients to make their own decisions rather than ‘telling’ them
what to do. This way patients are responsible for their own care and can’t ‘blame’
others if it goes wrong.” (Maggie)
Many of the participants also expressed satisfaction with their doctors explanations of their
condition.
“Very good explanations from medical staff.” (Maggie)
“The doctors explained the situation very well…with the diagrams which helped.”
(Rowena)
Sensitivity and communication from medical staff
A small number of women reported dissatisfaction with the sensitivity, time and
communication skills of medical staff delivering information.
“Doctors can be very insensitive….I heard the doctor telling someone else outside the
office that I had cancer just before he was coming in to tell me. Then when he came
in I already knew.” (Melissa)
“This got me quite upset. When I was seeing the doctor at RMH they wanted me to
take tamoxifen. The doctors gave me a really hard time about it and I got a bit upset
with their approach. I take traditional Chinese herbs…and they were pushing their
beliefs on me. Their logic and rationale was quite negative and almost
brainwashing. For example, one doctor used an analogy about which door I should
take, one was the death door, I got quite freaked out about it.” (Jess)
“One event that was slightly distressing. I was told by the breast care nurse that I
would never need a mastectomy because the situation was not that bad. In the end I
did have a mastectomy so it would have been better if the breast care nurse said
there is no need for a mastectomy at this stage but lets take it one day at a time. You
don’t want to be assured that you don’t need treatment and adjust to that news and
then down the track have to adjust to more serious news.” (Rowena)
Settings
Some women commented on the poor environment or setting of The Breast Service.
“I found that RMH is less personal, a less inviting environment, although the staff are
good.” (Maggie)
18
“The waiting times at the RMH were bad. I was increasingly anxious after waiting for
over two hours for appointments. This is particularly distressing when you are waiting
for chemo.” (Kathy)
“I can confirm from the community and from my own experience that waiting for
surgery is quite stressful. I had to wait and wasn’t informed that my surgery had been
delayed. Was very stressful.” (Jess)
In contrast, other women reported satisfaction with the speed of appointments, waiting times
and overall environment.
“The Breast Service had a good energy, comfortable environment.” (Maggie)
“I didn’t feel like I was in a production line, or I was just a number, and every time I
went back, they remembered my name, so it was very warm and welcoming.” (Jane)
“I was happy with the speed of appointments and test results which minimises
distress and anxiety.” (Rowena)
Tangible Support
The majority of patients reported that whilst the information was excessive, they enjoyed
receiving such an expansive range of written information and enjoyed other material methods
of support such as the Berlei bra, and cushion made by volunteers.
“We loved the Berlei bra and the pillow for your neck/underarm. These things we
receive in the public system are good.” (Rowena)
“The Berlei bra, pillow and pamper packs gave me an emotional lift.” (Sue)
“It is definitely information overload but it is good to keep and refer to later on when
you are up to it.” (Anne)
“We felt that the information was overwhelming but better too much than too little.
You need it because you are quite ignorant and don’t know a lot about it.” (Alice and
Rowena)
Overall, these results suggest that patients attending The Breast Service are satisfied with
the level of support received from staff including the additional assistance they receive such
as written information and pamper packs. However, the results also suggest the need to
consider the methods and procedures for medical staff delivering information to patients. The
inconsistent results relating to The Breast Service setting suggests the need to provide a
consistent environment for patients that minimises waiting times that can lead to heightened
distress.
Psychosocial and psychological concerns
The most common psychological concerns reported by women were anxiety and depression.
Anxiety was found to be heightened at diagnosis, between appointments whilst waiting for
results, before chemotherapy, particularly the first session when the outcome was unknown
and in social situations for those that had visual signs of cancer, such as hair loss.
Depression appeared to be heightened during treatment, particularly for those having
chemotherapy.
19
“I have had depression. I have had some days where I felt I couldn’t take one step out
the front door. Before you lose your hair you can hide to the world what is going on. I
still have a hard time going to the shops with no hair, when I am on my own people
stare at me. The depression set in when I felt I had to be strong for everyone and it
got to the point where at night I would have a shower and that would be my time to
cry because no one could see me.” (Melissa)
“I was so shocked at diagnosis that I fainted.” (Jan)
“I was devastated at diagnosis, it came from nowhere, no pain, no lumps so I was
very shocked when I heard the diagnosis. But then I got used to it.” (Anne)
“I have had some depression and poor body image. My depression has been bad the
last few weeks and it is a combination of medical concerns and family issues. On my
third visit to RMH I broke down. This was when I was told I needed a mastectomy.”
(Maggie)
“I have experienced anxiety definitely, and depression to a lesser degree. If someone
starts talking about it I just start to cry. It was most distressing when I was told that I
had to have chemo. I was devastated. Then I really knew I had it (cancer) and my
anxiety was bad before chemo because I had no control and didn’t know what to
expect.” (Kathy)
“I have experienced depression, anxiety and body image concerns, none more than
the other.” (Jane)
Other psychosocial concerns reported by women included body image concerns, relationship
issues with their partners, family and friends and concerns with mortality, survival and
recurrence. Psychological concerns were also prevalent for those experiencing severe
physical symptoms from chemotherapy.
“It’s when you don’t know what’s coming it’s hard. The hair is a good example, it’s
better when it is actually gone, than when you are sitting there worrying about it. It
was deeply distressing when it was falling out. After chemo is the worst. I feel like the
younger women without their hair look good, still pretty. I just don’t feel like a human
being anymore. I have no hair, no eyebrows. I feel terribly self conscious, even at my
age. No hair has its associations with prisoners. My husband has seen me with no
hair but I still wear my hat all the time, I don’t like him to see me looking like this.”
(Joanne)
“I can’t look at myself in the mirror after the shower, because of the scars, I am very
self conscious about it.” (Melissa)
Psychosocial Well-being
Optimism, resilience and distraction
In contrast to these experiences of psychosocial distress, some women reported feeling
‘liberated’ by their journey with breast cancer. For these women, being diagnosed with
cancer linked them with supportive friends and professionals, put their life and worries into
perspective, charged them with energy to distract them from the psychosocial concerns
associated with cancer and generally provided them with an experience that would positively
20
shape the remainder of their lives. It is these women who appeared to maintain an optimistic
disposition that presented with less psychological concerns and physical symptoms.
“I felt quite depressed when I got the diagnosis, but when I spoke to friends and read
about it, many have experienced it in some way. Friends really shine when there is a
crisis. We need to put the disease into perspective, look at women in Sudan who
have their breasts taken off with a machete. I actually felt quite liberated with my
mastectomy because I was worried it (the cancer) was going to be everywhere.”
(Rowena)
“Body image, relationship issues have not affected me. You need to get on with it,
accept it, it is just another issue you have to face.” (Sue)
“I am taking it day by day. I have had no distress with my hair loss. It’s only hair, I
enjoy having no hair, I don’t have to brush it, go to the hairdresser it’s easy, I love it.”
(Lisa)
“Nothing was distressing, not even the diagnosis. I am a very practical person. I said
to the breast surgeon, why don’t you just lop the whole thing off. I just thought to
myself, well if things pan out as they could have panned out, and if I have got full on
cancer or anything like that, I just thought it was a good chance to get my affairs in
order before I died.” (Marion)
Faith in medical staff
For others, their psychological concerns were minimised by their faith in the medical staff
removing their cancer.
“The doctors have told me it is unlike to return, I have had the surgery, the radiation,
so I am not worried. I have no concerns.” (Edith)
“I am guided by the medical professionals. I leave the medical care in their hands. I
have no psychological concerns.” (Sue)
Overall it appears that many women reported experiencing depression, anxiety and body
image concerns, mainly associated with chemotherapy. For many of these women,
psychological concerns were pre-existing conditions that appeared to be heightened
following their diagnosis and treatment for breast disease. Those that reported less
psychological concerns appeared to adopt a more optimistic and practical approach to their
disease or felt confident that medical advancements and clinician expertise increased their
chance of recovery and consequently led to less distress.
Assessing psychosocial distress: The SCT
Of the women interviewed, eight (61.5%) completed the Supportive Care Screening Tool
(SCT). Most of the women were happy to complete it and reported no issues answering the
questions. Some women completed the SCT whilst waiting for an appointment, whilst other
women preferred to take it home and complete it with family members or in their own time.
Almost all of the women could not recall completing the SCT until prompted with a visual
representation. As a result, from a patient’s perspective, no significant issues were identified.
Having said that, whilst no issues were identified, some suggestions from patients for
improving the screening tool were reported and are detailed below:
21
 Include questions that ask women whether they wanted to be linked in with a group.
 Tailor SCT to patient’s individual situation given that some questions are not relevant.
 Administer the SCT later given that concerns are greater after surgery (it is generally
administered at pre-admission clinic (PAC)).
 Administer the SCT twice, rather than once at PAC. Some experience concerns at
later stages than prior to surgery and others don’t recognise their issues until later
stages of the disease.
 Include body image questions.
Psychosocial support: Professional, community, family, peer and individual
Professional psychosocial support
Some women reported accessing counsellors, psychologists and social workers for support.
Other women reported that they felt comfortable knowing that these supports were available
however were not ready or did not feel they would be able to assist them with their concerns.
These women relied on community, family, peer and individual supports, which is discussed
in more detail below.
“The psychologist has called and made themselves available. I saw the social worker
who was very kind, sweet, but she didn’t really tell me much that I didn’t know
already. She didn’t target the issues but it was very early on.” (Joanne)
“I would rather get on the internet and read other women’s stories than speak to a
professional.” (Melissa)
“The networking and support groups are great. I have contacted BreaCan and am
going to an exercise class. I am seeing a psychologist about sexual and body image
issues with my husband. There is a lot out there to access.” (Rowena)
“I saw a psychologist twice to deal with my depression and anxiety. I was advised to
go on anti-depressants which I refused. I also saw a pastoral care worker who was
good. I have the tools and need to manage it myself. I don’t want to go into the
hospital on my ‘good weeks’.” (Kathy)
Community, family and peer psychosocial support
Some women reported that they used their friends, family and the community for support
instead of or as well as professional support. Many women felt that these supports were
equal to or better than community supports because they ‘knew’ the person and didn’t have
to share their story with a stranger.
“My best friend shaved all her hair off, it felt great, the emphasis was then on her not
me. Work are also good, they wear bandanas when I come in so we all look the
same.” (Melissa)
“It has been very inspiring to talk to other women who have experienced it (cancer).
Friends and family have been great. I feel a lot better now than when I first got
diagnosed thanks to all the professional and family support. It really made me shake
up my priorities.” (Rowena)
22
“In Greek culture we use family rather than professional support. Greek people will
not say the word ‘cancer’, they call it ‘the bad thing’. They will pray, light candles,
have the priest. It is not very helpful.” (Edith)
“I’m not a group person”: Individual supports
Many women felt that they didn’t want to attend group sessions or professional supports
because they could manage their concerns alone. Many women felt that they had the
individual tools or family support to assist them if they experienced psychosocial distress.
“My GP is concerned and wants me to go to a support group. I am not a group
person.” (Joanne)
“I didn’t feel like I needed to go and talk to strangers, I don’t want to start crying in
front of people I don’t know and I didn’t want to have to deal with other people crying
to me, I just would feel pressured to tell ‘my story’.” (Melissa)
Suggestions for alternative supports
Some of the women had suggestions for additional support services that they felt would
compliment existing supports. Although it is possible that some of these services exist, it is
the supports that women perceived were necessary. These are outlined below:
 A forum to get together and talk about chemo experiences.
 A group that brings together the women attending The Breast Service.
 A support group that included partners.
 A ‘drop in’ group or a group that was a casual relationship with other women in my
area. Not a structured group.
 Email or telephone contact with other women to ease the first step of initiating
support.
 Increase support uptake by having a ‘buddy’ system where two people attend the
group together.
 Walking group, book club, choir.
 Someone to call and meet for coffee.
 Video of a patients journey through breast cancer. It is perceived to be better than
photos which don’t show how the patients is feeling or coping.
Overall, many women accessed professional supports, mainly counselling services, and
relied on family and friends to assist them with their psychosocial concerns. Some women
felt uneasy or awkward about attending group settings with strangers and would prefer
alternative supports such as email, telephone or a casual unstructured group setting. These
results suggest the individuality of women’s support needs and the need for a wide range or
services that can address different concerns at different stages of the disease. However,
women did report satisfaction with the support services that were available even if they did
not access them.
23
Summary
A summary of the main themes are provided in Table 6.
Table 6: Summary of main themes
Theme
The Breast Service
Psychosocial
concerns
Psychosocial wellbeing
Assessing
psychosocial
concerns
Psychosocial
support
Key finding
 Patients were most satisfied with the unconditional support offered by
the breast care nurses.
 Enjoy ‘take-home’ written information., Berlei bra and pamper packs
 Waiting times can be too long and stressful.
 Value sensitivity in delivering diagnosis/prognosis/treatment plan/side
effects.
 Anxiety
 Depression
 Body Image (hair loss, skin problems, mastectomy, reconstruction,
visual reminder of disease)
 Relationships (partner, friends, family, work colleagues)
 Stress
 Heightened after diagnosis, before chemotherapy, post treatment, fear
of recurrence.
 Enhanced by practical, optimistic approach.
 Enhanced by remaining occupied, work or volunteering.
 Enhanced by faith in medical professionals
 61.5% completed SCT
 Most women reported no issues completing it
 Suggestions to:
 Include questions that ask women whether they wanted to be
linked in with a group.
 Tailor SCT to patient’s individual situation given that some
questions are not relevant.
 Administer the SCT later given that concerns are greater after
surgery (it is generally administered at pre-admission clinic
(PAC)).
 Administer the SCT twice, rather than once at PAC. Some
experience concerns at later stages than prior to surgery and
others don’t recognise their issues until later stages of the
disease.
 Include body image questions.
 Patients reported accessing psychologists, social worker, pastoral care
worker, community supports and family/peer supports.
 Others relied on individual support e.g.:
“I don’t need support I can help myself”.
“I’m not a group person”.
“I keep busy to take my mind off it”.
 Expressed desire for alternative supports: e.g. email, phone, volunteer.
Action, recommendations and future directions
A brief overview is provided here of the main findings, action that has occurred in relation to
these findings and directions for future improvements to the assessment and delivery of
psychosocial care to women attending The Breast Service.
Following stage one of the project, several areas were identified by staff as warranting further
attention. A summary of actions staff from The Breast Service have taken in relation to these
findings is provided in Table 7. The psychosocial model of care project has enabled a unified
\
multidisciplinary approach from The Breast Service to the assessment and delivery of
psychosocial care to patients. Namely, the psychosocial multidisciplinary meeting that is held
weekly at both sites enables psychosocial referrals, evaluation of the psychosocial screening
tool, integrated discussion and minimal overlap in support offered to patients.
Table 7: Staff consultations results
Key findings
Action
Clarification of staff roles to
Staff delivering psychosocial support completed a ‘role summary’ that
enhance continuity of care
clarified nature of patient referrals and treatment approaches. The role
and minimise overlap
summaries were compiled and distributed to staff (see Attachment 4).
Refinement of the use of the
After several issues were identified by staff regarding the current
psychosocial assessment
screening tool, a staff focus group was conducted to discuss revisions
tool and supplement
and alternative assessment tools (see Table 7). A revised screening
assessment tools
tool is currently being developed.
Multidisciplinary evaluation
The introduction of a weekly psychosocial multidisciplinary meeting
of the completed
has allowed integrated discussions of the completed psychosocial
psychosocial assessment
assessment tool. This meeting enables appropriate action, including
tool
referrals, that is a collaborated response to the patient’s needs.
Standardised referral
A psychosocial referral form is being piloted that allows all
pathway and criteria and
psychosocial and medical clinicians to make referrals The referrals are
referral follow-up.
discussed at a multidisciplinary meeting with psychosocial clinicians
with updated notes recorded in the patient’s medical file..
Enhanced or ‘updated’
Stage two of the project invited patients of The Breast Service to
knowledge of the
discuss their psychosocial concerns and supports they received or
psychosocial concerns
desired. The results from these interviews and focus groups will be
experienced by patients.
distributed to staff and used to inform the ongoing development and
refinement of The Breast Service psychosocial screening tool.
Moreover, Table 8, outlines the issues identified by staff regarding the current psychosocial
screening tool. Based on staff discussions and focus groups, ongoing revisions of the
psychosocial screening tool are being conducted to enhance useability, validity and quality
referrals for staff and patients.
25
Table 8 Issues with the SCT identified by staff and patients
Issues identified by The Breast Service staff

Staff not accessing the completed SCT in patients medical file.

More specialised tools needed for specific areas of concern.

Not specific to breast cancer/some questions not relevant.

Only used once. Supplement testing/brief version needed at different stages of the disease.

Some questions not included to screen for identified psychosocial concern (e.g. body image).

Absence of criteria for referral. E.g. if patient answers ‘yes’ to certain questions what is the
process for referral. Criteria needed to facilitate consistency between clinicians.

Questions regarding patient strengths to use for possible referral/support.

Section needed for patient comments.

Dichotomous responses create limitations (e.g. yes/no).

Area needed to record referral details/outcome. Possibly useful to combine details from
referral form to SCT.

Unclear psychometric validity.

Does not assess all risk factors.
Issues identified by The Breast Service patients
 Include questions that ask women whether they wanted to be linked in with a group.

Tailor SCT to patient’s individual situation given that some questions are not relevant.

Administer the SCT later given that concerns are greater after surgery (it is generally
administered at pre-admission clinic (PAC)).

Administer the SCT twice, rather than once at PAC. Some experience concerns at later
stages than prior to surgery and others don’t recognise their issues until later stages of the
disease.

Include body image questions.
Specifically, a revised screening tool is being developed that combines questions in the SCT,
the distress thermometer and checklist developed by NBCC (see Attachment 5) and the
revised referral form for The Breast Service (see Attachment 6). Therefore, screening will
target patient overall distress, risk factors (identified by NBCC and NHMRC), personal
information (supports, culture, responsibilities) and physical/disease related concerns. This
will be combined with a multidisciplinary referral form supported by discussions with
clinicians in the psychosocial multidisciplinary meeting. This process has also been adopted
by other tumour streams such as gynaecology at the RWH.
Based on the results of the staff and consumer reports, a recommended pathway for a
psychosocial model of care has been developed to guide clinicians from The Breast Service
in their assessment and referral procedures (see below).
It is therefore recommended that ongoing consumer consultations occur to further enhance
our knowledge of patients’ psychosocial needs and to further develop and evaluate the
revised model of psychosocial care provision. It is also advised that staff training be
conducted to inform and educate staff on the suggested pathway for psychosocial support. It
is envisaged that consistent and multidisciplinary psychosocial assessment and care will
result in increased consumer and staff satisfaction, that will result in better outcomes for
patients now and in the future.
\
Overall, although the process of enhancing the psychosocial support to patients attending
The Breast Service is an ongoing process, the findings from the project have facilitated
several changes to the assessment and delivery of psychosocial care to women with breast
disease. It is envisaged that these processes will continue to develop and support women
throughout their journey with breast disease.
The Breast Service Recommended Pathway for Psychosocial Support
Effective Delivery of Psychosocial Care must consider the following:
 Collaboration between medical and nursing clinicians, mental health and other allied
health specialists.
 Follow-up of referrals (patient uptake and appropriateness). Include long-term followup.
 Referrals are made to the right source (see below)
 Patients AND their partners are considered in the delivery of psychosocial care
(effects have been found to be greater)
 Inclusion of specialist services to improve physical wellbeing that can lead to
improvements in emotional wellbeing.
 Health professionals approaching women to offer support. For example, phoning
women (BCN), inviting women to a support group (BreaCan).
 Good and sensitive communication from health professionals.
 Acknowledgement that psychosocial distress is heightened at certain stages of the
disease trajectory. Most notably:
*Diagnosis
*During treatment
*Completion of treatment
*Follow-up
*Diagnosis of recurrence

Acknowledgement that some psychosocial needs are consistent throughout the
disease trajectory and others are related to the different stages of the disease.
>Consistent needs



Emotional support
Psychological symptoms
Relationship issues
>Phase specific needs





Physical health needs increase and peak at follow-up.
Psychosexual needs increase as the disease progresses.
Occupational needs increase as the disease progresses.
Financial needs increase as the disease progresses.
Practical needs increase as the disease progresses.
27
Table 8: The Breast Service Psychosocial Model of Care
Step 1
Identify high risk factors.
FIRST SUITABLE VISIT
The revised assessment tool will allow breast care nurses (BCN’s) to
document patient risk factors.
Risk Factor check-list
Is/has the patient:

Younger

Single, separated, divorced, widowed

Living alone

Children younger than 21 years

Experiencing economic adversity

A real or perceived lack of social support

Poor marital or family functioning

Had a history of psychiatric problems

Had stressful life events

Had a history of alcohol and/or substance abuse

Just been diagnosed recently with cancer

In the advanced stages of the disease

Received a poor prognosis

Having/had treatment side effects greater than most

Experiencing lymphoedema

Experiencing chronic pain and/or having difficulties
managing pain

Significantly fatigued
Step 2
Assess level of distress.
Step 3
Assess specific psychosocial BCN’s will distribute psychosocial checklist to patients where they
concerns
can indicate (yes/no) whether they have experienced psychosocial
distress on a range of dimensions (e.g. depression, anxiety, body
image, sexual health etc)
Step 4
Psychosocial
Assessment/interview with
BCN.
BCN expands on relevant
areas identified by patient in
the screening process
(distress thermometer and
checklist) and records
outcome on the screening
forms.
Does the patient appear or is the patient highly distressed/anxious?
BCN’s to distribute ‘distress thermometer’ whereby patients will rank
their perceived level of distress from 0 (no distress) to 10 (extreme
distress).
Patient is not
considered high risk
and is not distressed
Patient is considered
high risk and is
distressed and
requires action (not
immediate)
Patient is considered
high risk and is
distressed and
requires
urgent/immediate
action
Patient completes the
distress thermometer
and checklist at next
visit or as
appropriate.
A referral is made
using the referral form
(see Attachment 6)
and the patient is
discussed at the next
PMDM.
Clinician pages
mental health service,
social work or
pastoral care for
urgent referral. A
referral is made using
the referral form (see
Attachment 6) and
the patient is
discussed at the next
PMDM.
Discuss Patient’s risk factors, assessment of distress, BCN
evaluation and checklist responses. Multidisciplinary referrals are
made where applicable, referral outcomes are discussed.
Step 5
Psychosocial
Multidisciplinary Meeting
(PMDM) without SCT
Step 6
Psychosocial screening
Go to step 2.
conducted at:
1.
Notification of diagnosis
2.
Post-surgery check-up
3.
During Chemotherapy
4.
At the end of treatment
\
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Expenditure Report
Original forecast amount
$70,000
Direct Budget item
Project Officer Salary $23,400
Health Promotion Workshop
$120
COSA conference
$130.00
Printing
$50.00
Final amount spent
$23,720
Comment
Remaining funds to be utilised include staff training, screening tool
revisions, further consumer consultations and printing.
Total amount (pre GST)
Indirect Costs
Study and professional development days for nursing and medical
staff to attend communications workshop.
Cost $5,000
Backfill positions/extended hours for clinicians to participate in the
psychosocial working group and the current project.
31