Lived experience of managing paid personal care following

164 Pages·2012·2.05 MB·English

Lived experience of managing paid personal care
following a spinal cord injury: An Interpretative
Phenomenological Analysis

Maria van den Heuvel

A thesis submitted for the degree of Master of Health Science (Rehabilitation)
at the University of Otago, Dunedin,
New Zealand

th
February 15 2012
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Abstract
Background: The nature of relationships that people with spinal cord injury (SCI) have
with paid carers may facilitate or interfere with their community participation and quality
of life. Learning how to live with this need for assistance, while not compromising
autonomy and dignity, can be challenging. The purpose of this study was to investigate
the experiences of those with SCI who receive paid personal care in order to better
understand the nature of what contributes to a successful working relationship and
satisfying life.

Method: Semi-structured interviews were conducted with seven people (four men, three
women; aged 21 to 55 years) who had experienced a cervical level traumatic SCI and
required support from paid carers. Interpretative phenomenological analysis was
employed to analyse the transcripts.

Results: I liken this phenomenon to a challenging ‘maze’ with the participants as
‘pathfinders.’ Participants followed different paths, yet all regularly made choices about
which way to turn at each decision point in managing their paid care. Three master themes
emerged from the participant’s accounts: 1) Finding your way amid, challenge, chaos
and choice, 2) Navigating relationship terrains and 3) Warning: potential traps.
Finding your way amid challenge, chaos and choice encompassed the participants’
cognitive and emotional journey of coping and adjustment to life following SCI. In
making this adjustment the participants sought ways to maximise autonomy, and even
power, within a context of being bodily dependent. Navigating relationship terrains
captured the participants’ thoughts and beliefs regarding the interpersonal relationships
they had with paid carers, and included issues such as the role of ‘gut instinct’ and trust in
managing these relationships. Finally, Warning: potential traps denotes the perceived
threats to individuals’ well-being and resultant fear and vulnerability. These threats and
fears related to the nature of the relationship itself (e.g. fear of mistreatment).

Discussion: The results from this enquiry suggested that recipients of care face many
complexities when managing paid care relationships. Decisions about paid care
relationships; particularly when new to their SCI, was based on serendipity and a ‘trial and
error’ approach. Each decision can lead to, and set up a cascade of effects that impact and
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shape a person’s sense of identity, self-esteem, body image, sense of success or failure,
mental and physical health, both in the short and long term. Participants also described
mistreatment including intimidation, rough handling, ridicule, and theft, demonstrating
abuses of disabled people’s human rights in New Zealand (NZ). It appeared that currently
people with SCI in NZ, who rely on support from paid carers for basic daily needs, return
to the community after injury without adequate opportunities to learn essential skills
needed to establish and manage these relationships effectively.

Conclusion: Information from this study could provide some direction (a map and
compass) for individuals (pathfinders) new to SCI who are preparing to enter into an
unexplored area outside the hospital environment. Furthermore, research of this nature
may raise awareness of issues in the SCI environment and the NZ health care community,
which may help to reduce inequalities by advancing knowledge in an area where there has
been minimal investment in research. Making more information of this nature available to
people with SCI, their families, and health professionals may go some way towards
assisting people with SCI to better prepare for formal caregiving relationships within the
home environment.
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Acknowledgements
Dr William Levack PhD, MHealSc (Rehabilitation), BPhty, Senior Lecturer in
Rehabilitation at RTRU, Wellington School of Medicine and Health Sciences, University
of Otago: thank you so much for your support and inspiring supervision throughout my
journey your attention to detail, availability and supportive feed-back has been greatly
appreciated.
Dr Jean Hay-Smith PhD, MHealSc, DipPhys, Senior Lecturer in Rehabilitation at
RTRU, Wellington School of Medicine and Health Sciences, University of Otago: thank
you for sharing your expertise around IPA. Your support and feed-back have been much
appreciated.
Carole Acheson Professional Practice Fellow, Student Learning Development (HEDC),
University of Otago, Christchurch: thank you for your gentle and clear suggestions for
improvement.
Burwood Spinal Unit Management: I would like to acknowledge Dr Xiong, Medical
Director, Liz Oliver, Service Manager, Nathan Hood, Charge Nurse Manager and Ngaire
Hunt former Charge Nurse Manager for the support and financial contribution towards
assisting me with my studies.
Burwood Hospital Department of Nursing: special thanks to Diana Gunn, Director of
Nursing not only for the financial contribution towards assisting me with my studies but
for the ongoing support and genuine interest shown whilst I undertook this research
project.
Tom Marshall, Consultant Clinical Psychologist, Burwood Spinal Unit: thank you for
your support and wonderful words of wisdom.
Participants, I am truly grateful for sharing their experiences and enabling me to share
them with you all.
My family, a very special thanks to my fiancé Brent; my beautiful daughters Letitia,
Brittany, Brogan and Courtney and my loving parents Johannes and the late Colleen for
their ongoing love, support and patience whilst I completed my thesis. Thanks also to my
friends and colleagues at Burwood Spinal Unit.
Keith McCormick, my loved and missed friend: Thank you for believing in me and
supporting me as I ventured in my nursing career. You have taught me so much and to this
I am truly indebted. You are an inspiration to all that had the privilege of knowing you.
May you forever fly freely Keith.

“I dedicate this ‘my thesis’ to you Keith”
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Table of Contents
Abstract .....................................................................................................................i
Acknowledgements ................................................................................................ iii
Table of Contents ....................................................................................................iv
List of tables .......................................................................................................... vii
List of figures ........................................................................................................ vii
List of abbreviations............................................................................................. viii
Chapter One: Introduction ....................................................................................... 1
1.1 Introduction to research ..................................................................................... 1
1.2 Personal reflections ............................................................................................ 2
1.3 Definitions of key concepts ................................................................................ 4
1.3.1 The concept of care and caring ....................................................................... 4
1.3.2 Carer or caregiver ............................................................................................ 5
1.4 Research aim ...................................................................................................... 6
1.5 Structure of the thesis ......................................................................................... 6
Chapter Two: Literature Review .............................................................................. 7
2.1 Introduction ........................................................................................................ 7
2.2 Overview of Spinal Cord Injury (SCI) ............................................................... 7
2.2.1 Classification of SCI ....................................................................................... 7
2.2.2 Characteristics of SCI in NZ ........................................................................... 8
2.2.3 Rehabilitation of persons with SCI ............................................................... 10
2.2.4 Funding of carers for SCI in NZ ................................................................... 11
2.2.5 ACC attendant care guidelines ...................................................................... 12
2.3 Management of paid care services for people with SCI in NZ ........................ 13
2.3.1 Consumer-directed model (Individualised funding) ..................................... 13
2.3.2 Caregiving Agencies ..................................................................................... 14
2.3.3 Comparison of consumer-directed and caregiving agency services ............. 15
2.3.4 Paying family members, friends or strangers to be a carer ........................... 17
2.3.5 Training needs for carers & individuals with SCI ........................................ 19
2.4 Issues related to paid care provision ................................................................ 20
2.4.1 Psychological adjustment and coping following SCI ................................... 20
2.4.2 Relationships between paid carer and people with SCI ................................ 21
2.4.3 Maintaining autonomy .................................................................................. 22
2.4.4 Relationship boundaries – friendship and intimacy ...................................... 24
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2.4.5 Factors influencing successful consumer-carer relationships ....................... 29
2.4.6 Mistreatment ................................................................................................. 30
2. 5 Summary ......................................................................................................... 33
Chapter Three: Methods ......................................................................................... 34
3.1 Overview .......................................................................................................... 34
3.2 Research design................................................................................................ 34
3.2.1 Epistemology: constructivist paradigm ......................................................... 35
3.2.2 Theoretical perspective: Interpretive/phenomenological .............................. 35
3.2.3 Methodology: Interpretative Phenomenological Analysis (IPA) .................. 36
3.3 Method ............................................................................................................. 37
3.3.1 Participant recruitment .................................................................................. 37
3.3.2 Development of interview schedule .............................................................. 39
3.3.3 Data collection .............................................................................................. 40
3.3.4 Data analysis ................................................................................................. 40
3.4 Ethics ................................................................................................................ 42
3.4.1 Process of Maori consultation ....................................................................... 42
3.4.2 Clinician researcher interface and implications ............................................ 42
3.4.3 Emotional and physical risk management .................................................... 43
3.4.4 Identified abuse or risky health behaviours: ................................................. 43
3.4.5 Preserving anonymity of participants ........................................................... 44
3.5 Summary .......................................................................................................... 44
Chapter Four: Results............................................................................................. 45
4.1 Overview .......................................................................................................... 45
4. 2 Finding your way amid challenge, chaos & choice ........................................ 48
4. 2.1 Acceptance of bodily dependence – “the turning point” ............................ 48
4. 2.2 Invasion of Privacy; Loss of Dignity - “just part and parcel of life” ......... 51
4.2.3 Self-determination within the context of interdependency ........................... 56
4. 3 Navigating relationship terrains ...................................................................... 65
4. 3.1 Follow your “gut instinct” ........................................................................... 65
4. 3.2 Friendship ambiguity ................................................................................... 73
4. 3.3 Intimacy “a natural process” ....................................................................... 76
4. 4 Warning: potential traps .................................................................................. 80
4.4.1 The multiple faces of vulnerability and its consequences............................. 80
4. 4.2 Mistreatment ................................................................................................ 84
4. 5 Summary ......................................................................................................... 87
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Chapter Five: Discussion ....................................................................................... 88
5.1 Overview .......................................................................................................... 88
5.2 Acceptance of bodily dependence “the turning point” ................................... 88
5.3 Self-determination within the context of interdependency .............................. 91
5.4 Follow your “gut instinct” and Friendship ambiguity ..................................... 96
5.5 Mistreatment .................................................................................................. 100
5. 6 Trustworthiness and transferability of findings ............................................ 105
5. 7 Clinical implications and recommendations for further research ................. 107
5. 8 Personal reflections ....................................................................................... 111
5. 9 Final summary............................................................................................... 114
Glossary of Terms ................................................................................................ 115
References ............................................................................................................ 119
Appendix I ACC attendant care guidelines .......................................................... 133
Appendix II Invitation letter ................................................................................ 135
Appendix III Participant information sheet ......................................................... 136
Appendix IV Consent form for participants ........................................................ 140
Appendix V Sample questions to obtain demographic details ............................ 142
Appendix VI Sample questions- face to face interview ....................................... 144
Appendix VII Health and Disability Ethics Committee ...................................... 146
Appendix VIII Ngai Tahu Research Consultation Committee ............................ 148
Appendix IX Ranga Hauora letter of support ...................................................... 150
Appendix X New Zealand Spinal Trust letter of support .................................... 151
Appendix XI Transcription agreement ................................................................ 152
Appendix XII: Key to transcription conventions ................................................. 153
Appendix XIII Serious adverse events form ........................................................ 154
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List of tables
Table 4.1 Characteristics of research participants ................................................. 46
Table 4.2 Summary of themes ............................................................................... 47

List of figures
Figure 5.1 Power and control wheel for elder and disabled. Reproduced with permission
from Jezierski et al. (2004) .................................................................................. 104
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List of abbreviations
ACC Accident Compensation Corporation
AD Autonomic dysreflexia
ASIA American Spinal Injuries Association
ASRU Auckland Spinal Unit
BSU Burwood Spinal Unit
C Cervical
CHIEF-SF The Craig Hospital Inventory of
Environmental Factors -Short Form
CHART Craig Handicap Assessment and Reporting
Technique
CNS Clinical Nurse Specialist
FAM Functional Assessment Measure
FIM Functional Independence Measure
ICF International Classification of Functioning
IPA Interpretative Phenomenological Analys is
MDT Multidisciplinary team
MOH Ministry of Health
MVA Motor vehicle accident
NZ New Zealand
QOL Quality of life
SCI Spinal cord injury
T Thoracic spine
TBI Traumatic brain injury
USA United States of America
UTI Urinary tract infection
WHO World Health Organisation
1
Chapter One: Introduction
1.1 Introduction to research
The central focus for this study was to explore the lived experience of people who had
sustained a traumatic spinal cord injury (SCI) and as a consequence now managed
relationships with paid carers within their home environment. The International
Classification of Functioning, Disability and Health (ICF) highlight the impact that
environmental factors, such as support from carers, may have on outcomes following
SCI impairment. The success of the relationship between the carer and the person with
SCI has a direct influence on the ability of the person with SCI to function as fully as
possible in society (Schoop, Clark, Mokelke, Stout & Mazurek, 2007).

A traumatic SCI is one of the most dramatic injuries a person may experience. Changes
in an individual’s life may encompass, but are not limited to, reduced: life expectancy,
health status, occupation, physical function, autonomy and personal control, personal
relationships, psychosocial adjustment, leisure participation and quality of life
(Charlifue, Lammertse & Adkins, 2004; Riis & Verrier, 2007). These emotional,
physical, relational and economic consequences of a SCI are monumental and often
continue for the entirety of injured person’s life (DeSanot-Madeya, 2006). For an
individual coming to terms with the SCI, there is also a need to confront the possibility
of having to rely on assistance from a paid carer to complete many functional, everyday
tasks. Learning how to live with this newly acquired need for assistance, while not
compromising independence and dignity, can be challenging (Burdsall, 1998).

Within the existing literature surrounding paid personal care services there is a general
consensus that the work of the paid carer is crucial to the quality of life, health and
participation of individuals with SCI and other disabilities (Hagglund, Clarke, Farmer,
& Sherman, 2004; Mathias & Benjamin, 2008; Matsuda, Clark, Schopp, Mokelke, &
Hagglund, 2005). Whiteneck, Meade, Dijkers, Tate, Bushnik & Forcheimer (2004)
conducted a large scale study using The Craig Hospital Inventory of Environmental
Factors-Short Form (CHIEF-SF), the Craig Handicap Assessment and Reporting
Technique (CHART), and Satisfaction with Life Scale to evaluate environmental
factors and their role in participation and life satisfaction following SCI in participants
between one and twenty six years post injury. These researchers identified five