Table Of ContentExploring Psychosocial Care Provision for Palliative
Clients Living in a Rural and Remote Context
Lise Johns
Bachelor of Social Work (Honours)
School of Human Services and Social Work
Griffith Health Group
Griffith University
This thesis is submitted in fulfilment of the requirements of the
degree of Doctor of Philosophy
JUNE 2014
ii
Student Declaration
I hereby declare that the PhD thesis titled “Exploring Psychosocial Care Provision
for Palliative Clients Living in a Rural and Remote Context” is no more than
100,000 words in length, exclusive of tables, figures, appendices, references and
footnotes. This work has not previously been submitted for a degree or diploma in
any university. To the best of my knowledge and belief, the thesis contains no
material previously published or written by another person except where due
reference is made to the thesis itself.
Signature…………………………………… Date…………………
iii
“There are four kinds of people in the world -
those who have been caregivers, those who
currently are caregivers, those who will be
caregivers and those who will need
caregivers.”
Former First Lady – Rosalynn Carter (1997).
iv
Acknowledgements
To my wonderful husband, who could not understand my passion for working
with the dying, or even less still why I would pursue it as a PhD topic for many years.
But he supported me anyway with great love and made enormous sacrifices so I could
fulfil a dream. I am eternally grateful and will not forget your commitment to me
throughout the length of time this project took to complete. I owe you so much.
Towards the end of writing this thesis, my father-in-law came under palliative care and I
was fortunate enough to be able to nurse him and provide the required emotional
support to him and the family as he faced death and afterwards. From this experience,
my husband now has more understanding as to why I do what I do.
To my children, who like my husband, did not understand my interest, but
listened politely to my prattle about the PhD and how it was progressing. Their
patience whilst I studied, researched or was “off in another headspace” was unwavering.
Thank you for grounding me, keeping me balanced and indirectly reminding me I am
always a mum first.
To my supervisors, Donna McAuliffe and Lesley Chenoweth, who are the cream
of social work; thank you. You have made this experience possible; my gratitude runs
to depths you will not know. You guided me every inch of the way so I never felt like I
was floundering or lost. I always knew what the next step was with purposeful structure
and direction. When I was on my five week road trip, you were accessible at every
point, willing to listen and offer your advice when I called or emailed. This was
invaluable to me; not once did I feel alone. To Margaret Shapiro, who joined our trio,
thank you for coming in on the eleventh hour and generously offering your respected
expertise. This has been greatly appreciated.
v
Last but not least, thank you to all of my participants. You made the study.
Without you all there would be no thesis. You gave me your time, your insight and
wisdom to which I hope I can do justice. I have taken this as a serious responsibility
and sincerely hope positive change will evolve from the information you selflessly
offered to me. And to those amongst you who have passed on, a special thank you.
May you rest in peace.
A final, final thank you to Griffith University for awarding me with the 2013
Continuing Scholarship so I could see this project through to its completion. The funds
made a difference when the family income went from two wages to one. Thank you.
vi
DEDICATION
To my mother, who implanted caring and empathy in my psyche forever; your
role modelling will never be forgotten. You are the reason I am what I am. You are a
true social worker in essence; only missing a piece of paper with the words “bachelor”
printed on it.
vii
Abstract
Despite being one of the most avoided topics of all time, death is a guaranteed
eventuality for us all. However, good psychosocial care as death approaches is not.
Where people reside is likely to impact their accessibility to quality psychological,
emotional, social, spiritual and cultural support. This thesis will explore this issue,
seeking to ascertain how psychosocial care provision is being undertaken in rural and
remote areas of Queensland, Australia as well as illuminating social work’s role within
this context.
Thirty-eight rural participants were interviewed comprised of health
practitioners, community workers, palliative care clients and carers. A five week
research expedition was undertaken visiting twenty-four rural towns across Queensland,
resulting in rich, qualitative data from which pertinent themes were derived. The results
revealed that psychosocial needs for palliative clients in these country towns are
currently being met in an ad-hoc, inconsistent manner, pending largely on the
availability and perceived proficiency of health professionals.
Compelling evidence emerged to emphasise the need for a plan to address issues
such as the lack of a skilled psychosocial workforce, limited resources, the restrictive
eligibility criteria for palliative care funding, difficulties around equipment and travel,
along with a need for public education on what palliative care can offer. The data also
revealed that attention is required to review and explore bereavement further; a
psychosocial concern that is currently being undertaken in a haphazard and
unacceptable manner. A disparity also exists between the psychosocial needs identified
by clients and those focussed on by health professionals.
The Bronfenbrenner ecological/systems model was a major theoretical influence
for this study as it provided a focus for how persons living in rural and remote areas
exist within different systems. A critical theoretical lens was also implemented to
analyse the social and political nature of service delivery. By utilising a systems and
viii
critical framework to drive this research, socially constructed influences and their
impact on the terminally ill are exposed and challenged.
The study emphasised that psychosocial care, in most cases was the province of
the social worker, if one was accessible, but this was not always a given. The perceived
skill and competency of the rural social worker was revealed from the data, especially
when decisions about referrals were being made by other practitioners. The data shows
that the psychosocial sphere is indeed an ambiguous, shared and contested domain in
many Queensland country communities as the literature indicates. However, other
important factors such as, rural attitudes, the strength of social and community supports,
funding and policy, vast geographical distances and the calibre of inter-professional
relationships also impact the referral process.
These findings will inform specific implications and recommendations for health
policy, education and training for health practitioners and the social work profession. It
is anticipated that national standards and competencies will be written for the generalist
social worker, providing a framework for practice when working with the terminally ill.
Limitations to the research will be reiterated along with recommendations for future
research.
ix
Table of Contents
Abstract vii
Table of Contents ix
List of Appendices xv
List of Tables xvi
List of Figures xvii
Acronyms xviii
1. Introduction 1
A. Background to the Research 4
B. The Current Context 5
C. Locating Social Work Activities in Rural Queensland 8
D. Justification for the Research 9
E. Theoretical Framework and Methodology 10
F. Outline of the Thesis 12
G. Conclusion 14
2. Literature Review: Part One - Understanding Palliative Care in the Macro
Context 16
A. Defining Palliative Care 16
B. International Modes of Delivery 23
C. Palliative Care as a Human Right 31
x
D. Overview of Palliative Care in Australia 33
E. Macro Influences on Service Provision 37
F. Impact on Exosystems 45
G. Identifying and Engaging Microsystems 52
H. Comparative Analysis of the States 53
a. Queensland 53
b. Victoria 55
c. Western Australia 56
d. South Australia 57
e. New South Wales 58
f. Tasmania 60
g. Northern Territory 61
I. Palliative Care in Rural and Remote Australia 62
J. Conclusion 70
3. Literature Review: Part Two – The Psychosocial Domain of Palliative Care 72
A. Defining the Psychosocial Domain of Palliative Care 74
B. Psychological Issues 77
C. Emotional Issues 82
D. Social Issues 84
E. Spiritual Issues 87
F. Cultural Issues 90
G. Practical Issues 91
