A national survey of occupational therapists working with people living with term

304 Pages·2015·12.31 MB·English

A national survey of
occupational therapists
working with people living with
terminal illness: Profile, role,
context, professional reasoning
and challenges

Kathrine Anne Hammill

Doctorate of Philosophy
University of Western Sydney
2014
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No one wants to die. Even people who want to go to
heaven don't want to die to get there. And yet death
is the destination we all share. No one has ever
escaped it. And that is as it should be, because death
is very likely the single best invention of life.

STEVE JOBS

(From the Commencement Address at Stamford University, 2005)

This thesis is dedicated to my grandmother,
Olive Hardcastle,
who despite her long battle with illness, always kept focusing
on life.
Acknowledgements

To Ros and Cathy, I am so grateful to the both of you for all of your guidance and
advice over the past three years. Ros, your ability to see the big picture and your wisdom
has helped me to grow both as a researcher and a person. Thank you for helping me to
stay on track, and for getting just as excited as I did during the data collection phase!
Cathy, thank you for your calm and wise nature, for helping me to understand statistics
that bit better, and for getting me to see things from other angles.

Thank you to the OT’s who got behind this research and supported it every step of the
way. Without you we would not have the data to make change and put evidence behind
our practice.

To my dear ‘Bangers’ thank you for sharing this PhD journey with me. I could not have
asked for better office buddies. Thanks for the all of the chats, laughter and support over
the past three years.

To my ‘posse’ words cannot express my thanks to you for all of the resilience training,
sound advice, and of course laughs that you have given me over my candidature. You
both inspire me in so many different ways and I am so thankful that I get to call you
friends.

To my darling Stu, you have helped me to keep things in perspective, stay calm, and
most importantly we have had fun ever since we met. Thank you for being you, and for
believing in me.

Finally, to my mother Glenyce, thank you for giving me the passion to learn and
investigate life, as well as always supporting me no matter what life adventure I choose.

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Statement of Authentication

The work presented in this thesis is, to the best of my knowledge and belief, original
except as acknowledged in the text. I hereby declare that I have not submitted this
material, either in full or in part, for a degree at this or any other institution.

…………………………………………….
Kathrine Anne Faddy

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Table of Contents

Acknowledgements ................................................................................................ i
Statement of Authentication ................................................................................. ii
Table of Contents .................................................................................................. iii
List of Figures ......................................................................................................... x
List of Tables ........................................................................................................ xii
List of Appendices ............................................................................................... xiii
List of Abbreviations ............................................................................................ xiv
Abstract ............................................................................................................... xv
Chapter 1 Introduction ....................................................................................... 1
1.1 Introduction ......................................................................................................... 1
1.2 Context of this study ............................................................................................ 2
1.3 Statement of the problem .................................................................................... 3
1.4 Scope and limitations of the study ........................................................................ 4
1.5 Significance of the study ....................................................................................... 5
1.6 Definition of terms ............................................................................................... 7
1.6.1 Occupational therapy .......................................................................................... 7
1.6.2 Occupational therapist ........................................................................................ 7
1.6.3 Occupation .......................................................................................................... 8
1.6.4 Activity ................................................................................................................. 8
1.6.5 Occupational performance .................................................................................. 9
1.6.6 Occupational engagement .................................................................................. 9
1.6.7 Activities of daily living ........................................................................................ 9
1.6.8 Professional reasoning ...................................................................................... 10
1.6.9 Occupational therapy process ........................................................................... 10
1.6.10 People living with a terminal illness ................................................................ 12
1.6.11 Client ............................................................................................................... 13
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1.6.12 Care-giver ........................................................................................................ 13
1.6.13 Diagnosis ......................................................................................................... 13
1.6.14 Clinical area ..................................................................................................... 14
1.6.15 Caseload .......................................................................................................... 14
1.6.16 Palliative care .................................................................................................. 14
1.6.17 Palliative care approach .................................................................................. 14
1.6.18 End-of-life care ................................................................................................ 15
1.6.19 Hospice ............................................................................................................ 15
1.6.20 Dying ................................................................................................................ 16
1.6.21 Death ............................................................................................................... 16
1.7 Chapter synopsis and overview of the thesis ...................................................... 16
Chapter 2 Literature Review ............................................................................. 18
2.1 Introduction ....................................................................................................... 18
2.2 Terminal diagnoses ............................................................................................. 19
2.2.1 The everyday impact of living with a terminal illness ....................................... 19
2.2.2 Illness trajectories ............................................................................................. 21
2.2.3 Palliative care .................................................................................................... 25
2.2.4 The experience of dying a ‘good death’ ............................................................ 28
2.2.5 Place of death .................................................................................................... 29
2.2.6 Summary ........................................................................................................... 30
2.3 Occupational therapy ......................................................................................... 31
2.4 Occupational therapy for people living with a terminal illness ............................ 31
2.4.1 Australian occupational therapy demographics ................................................ 31
2.4.2 The history of the occupational therapy role for people living with a terminal
illness 33
2.4.3 Occupational engagement for people living with terminal illness .................... 37
2.4.4 The occupational therapy process for people living with a terminal illness ..... 40
2.4.4.1 Occupational therapy theoretical frameworks ........................................................ 40
2.4.4.2 Referral .................................................................................................................... 41
2.4.4.3 Assessment .............................................................................................................. 41
2.4.4.4 Goal setting .............................................................................................................. 43
2.4.4.5 Intervention ............................................................................................................. 43
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2.4.4.6 Measuring outcomes ............................................................................................... 44
2.4.5 Challenges to practice ....................................................................................... 45
2.4.6 Occupational therapy education and the need for supervision ........................ 46
2.5 Gaps in the literature .......................................................................................... 49
2.6 Theoretical framework ....................................................................................... 50
2.7 Study purpose and research questions ............................................................... 54
2.8 Synopsis ............................................................................................................. 57
Chapter 3 Methodology .................................................................................... 59
3.1 Introduction ....................................................................................................... 59
3.2 Research design .................................................................................................. 59
3.2.1 Theoretical Framework ..................................................................................... 59
3.3 Participants ........................................................................................................ 60
3.3.1 Sampling ............................................................................................................ 60
3.3.1.1 Purposive sampling .................................................................................................. 61
3.3.1.2 Snowball Sampling ................................................................................................... 62
3.3.2 Eligibility ............................................................................................................ 62
3.3.3 Sample size ........................................................................................................ 62
3.4 Survey instrument .............................................................................................. 65
3.4.1 Survey procedures ............................................................................................. 65
3.4.2 Survey development .......................................................................................... 67
3.4.3 Pilot testing ....................................................................................................... 69
3.4.4 Survey administration ....................................................................................... 70
3.5 Data collection ................................................................................................... 70
3.5.1 Survey administration ....................................................................................... 70
3.6 Data analysis ...................................................................................................... 71
3.6.1 Mixed methods data analysis ............................................................................ 71
3.6.2 Quantitative data analysis ................................................................................. 72
3.6.3 Qualitative data analysis ................................................................................... 72
3.6.3.1 Stages of qualitative data analysis ........................................................................... 73
3.7 Ethical considerations ......................................................................................... 74
3.7.1 Voluntary participation and right to withdraw ................................................. 75
3.7.2 Informed consent .............................................................................................. 75
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3.7.3 Data management to ensure confidentiality and anonymity ............................ 75
3.8 Synopsis ............................................................................................................. 75
Chapter 4 The context of Australian occupational therapy practice for people
living with a terminal illness ................................................................................ 77
4.1 Introduction ....................................................................................................... 77
4.2 The Results ......................................................................................................... 78
4.3 The Sample ......................................................................................................... 78
4.3.1 Sample profile ................................................................................................... 78
4.3.2 Predicted career paths ...................................................................................... 81
4.4 Workplaces ........................................................................................................ 85
4.5 The Clients .......................................................................................................... 86
4.6 Synopsis ............................................................................................................. 90
Chapter 5 Occupational engagement of people living with a terminal illness:
Therapists’ perceptions ....................................................................................... 92
5.1 Introduction ....................................................................................................... 92
5.2 Perceptions of occupational engagement at the end of life ................................. 94
5.2.1 Unique occupations ........................................................................................... 94
5.2.2 Meaningful occupations .................................................................................... 95
5.2.3 Therapists’ perceptions of occupational engagement of people living with a
terminal illness ............................................................................................................... 95
5.3 “Focusing on life” ............................................................................................... 97
5.3.1 Prioritised engagement ..................................................................................... 98
5.3.2 Altered Engagement ........................................................................................ 102
5.3.3 Summary of “focusing on life” ......................................................................... 104
5.4 “Preparing for death” ....................................................................................... 104
5.4.1 Practical preparations ..................................................................................... 105
5.4.2 “Facilitating Closure” ....................................................................................... 106
5.4.3 Summary of ““preparing for death”” .............................................................. 110
5.5 Synopsis ........................................................................................................... 111
Chapter 6 The occupational therapy role and process for people living with a
terminal illness ................................................................................................... 112
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6.1 Introduction ..................................................................................................... 112
6.2 Results .............................................................................................................. 113
6.2.1 Occupational therapy theoretical frameworks ............................................... 113
6.2.2 Modifying occupational therapy practice for people living with a terminal
illness 115
6.2.3 Referral to occupational therapy .................................................................... 118
6.2.3.1 Referral source ...................................................................................................... 118
6.2.3.2 Reason for referral ................................................................................................. 119
6.2.3.3 Referral timeframes and management ................................................................. 120
6.2.4 Assessment of clients living with a terminal illness ......................................... 122
6.2.4.1 Assessment type .................................................................................................... 122
6.2.4.2 Assessment needs related to end-of-life care ....................................................... 125
6.2.5 Goal setting with people living with a terminal illness .................................... 125
6.2.5.1 Goals related to “focusing on life” ......................................................................... 127
6.2.5.2 Goals related to prioritised engagement ............................................................... 127
6.2.5.3 Goals related to altered engagement .................................................................... 130
6.2.6 Goals related to “preparing for death” ........................................................... 132
6.2.6.1 Goals related to practical preparations at the end-of-life ..................................... 132
6.2.6.2 Goals related to facilitating closure ....................................................................... 134
6.2.7 Interventions for clients living with a terminal illness ..................................... 135
6.2.7.1 Outcome measures used with clients living with a terminal illness ...................... 141
6.2.8 Follow-up of clients living with a terminal illness ............................................ 143
6.3 Synopsis ........................................................................................................... 144
Chapter 7 Challenges to practice, and the educational and supervision needs of
therapists working with people living with a terminal illness .............................. 145
7.1 Introduction ..................................................................................................... 145
7.2 Results .............................................................................................................. 146
7.2.1 Challenges and strategies of working with people living with a terminal illness
146
7.2.1.1 Perceived challenges ............................................................................................. 146
7.2.1.2 Service and caseload challenges ............................................................................ 147
7.2.1.3 Intra and interpersonal challenges ........................................................................ 149
7.2.1.4 Role challenges ...................................................................................................... 149
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7.2.1.5 Strategies to overcome perceived challenges ....................................................... 150
7.2.2 Preparation for practice with people living with a terminal illness ................. 153
7.2.2.1 Feelings of preparedness for practice ................................................................... 153
7.2.2.2 Preparation for practice: Undergraduate education ............................................. 153
7.2.3 Perceived educational requirements .............................................................. 155
7.2.3.1 Skills, knowledge and qualities required for practice ............................................ 155
7.2.3.2 Therapists’ perceptions of competent practice ..................................................... 157
7.2.3.3 Setting of educational topics ................................................................................. 160
7.2.4 Supervision of therapists working with people living with a terminal illness . 162
7.3 Synopsis ........................................................................................................... 165
Chapter 8 Achievement of study aims and discussion of findings ..................... 166
8.1 Introduction ..................................................................................................... 166
8.2 Achievement of study aims ............................................................................... 166
8.2.1 Chapter 4: The context of Australian occupational therapy practice for people
living with a terminal illness ........................................................................................ 166
8.2.2 Chapter 5: Occupational engagement of people living with a terminal illness:
Therapists perceptions ................................................................................................ 167
8.2.3 Chapter 6: The occupational therapy process for people living with a terminal
illness 168
8.2.4 Chapter 7: Challenges to practice, and the educational and supervision needs
of therapists working with people living with a terminal illness ................................. 170
8.3 Discussion of findings ....................................................................................... 172
8.3.1 The therapist ................................................................................................... 173
8.3.1.1 Personal lens .......................................................................................................... 173
8.3.1.2 Professional self: Practice theories and knowledge .............................................. 175
8.3.1.2.1 Therapists collaborate with the client and their family when providing care175
8.3.1.2.2 A flexible occupational therapy process ........................................................ 176
8.3.1.2.3 Education and training impacts therapists’ perceptions of their professional
self 178
8.3.1.3 Professional self: Professional experience and skills ............................................. 179
8.3.1.3.1 Therapists alter their therapeutic interactions and therapy processes ......... 180
8.3.1.3.2 A co-constructed therapeutic relationship with a dual focus ........................ 183
8.3.1.3.3 Therapeutic use of self ................................................................................... 184
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