A longitudinal, ethnographic study of living with frailty. PhD thesis, Univer

302 Pages·2017·3.84 MB·English

by  Christine Middleton

Skilbeck, Julie Kathryn (2014) 'Am I still here?': A
longitudinal, ethnographic study of living with frailty. PhD
thesis, University of Nottingham.
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‘AM I STILL HERE?’:
A LONGITUDINAL, ETHNOGRAPHIC
STUDY OF LIVING WITH FRAILTY

JULIE KATHRYN SKILBECK, BED MMEDSCI

Thesis submitted to the University of Nottingham
for the degree of Doctor of Philosophy

December 2014
Abstract
Purpose: To explore how older people with complex problems experience and make
sense of frailty in their daily lives.
Relevance: Frail older people have complex care and support needs that are currently
challenging the health and social care system. There is a need for more appropriate
models of service provision that can deliver personalised care for frail older people.
Although there is an increasing body of literature that has explored the concept of frailty
from a biomedical and functional perspective, there is a lack of research-based evidence
exploring the personal experience of frailty from an older person’s perspective.
Study design: A prospective, longitudinal, ethnographic case study design was
adopted. Ten cases were studied over a period of two and a half years. Each case
comprised an older person, a community matron and a significant other, such as a
daughter. Cases were followed up monthly for a minimum of six months or until death. In
total, 56 care visits between an older participant and their community matron were
observed and 54 interviews were conducted with older people. Medical and nursing
documents were reviewed for each case. A narrative approach to data analysis was
undertaken, with identification of common themes within and across cases.
Findings: Three themes illuminated the experience of living with frailty. ‘Transitions in
health and illness’ details how the older people in this study experienced transitions in
health and illness in later life. ‘Dimensions of frailty’ reports perceptions of frailty in later
life and accounts of how feeling frail relate to episodes of uncertainty. ‘The provision of
health and social care – rhetoric and reality’ explores the inter-relationship between the
older person’s world of declining health and the episodic interactions with health
professionals.
Conclusions: This study offers a number of original contributions to the body of
knowledge pertaining to the personal experience of frailty. First, new insights into the
interrelationship between frailty and transitions in health and illness have been revealed,
particularly how transitions in health and illness contribute to and shape the experience
of frailty. Second, frail older people experience temporary moments of ‘liminality’ which
are expressed as uncertainty and/or feeling frail. It is in these situations where there is
real therapeutic potential in exploring the emotional experiences linked to a frail older
person’s interpretation of events. Third, there are challenges to engaging in partnership
working with frail older people. In some circumstances frail older people can exercise
autonomy and make decisions that are relevant to their own situation. However, often
community matrons’ work is framed by a policy of clinical assessment and therefore at
times assumptions underpinning the label of frailty can challenge partnership working.
These competing demands need to be considered by policy makers, commissioners and
providers of community services and practitioners alike. Only then can effective
supportive care services be delivered to frail older people.

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Acknowledgments
It is with gratitude that I would like to thank the following people for their
support and contributions to this study:
All the participants in this study who generously gave their time and shared
their stories and experiences; I am particularly indebted to the older
participants whose determination in situations of adversity always amazed
me. My principle research supervisors, Professor Jane Seymour and
Professor Antony Arthur; they provided me with unlimited support,
encouragement and patience throughout the duration of the study. Sue
Ryder Care Centre for Supportive, Palliative and End of Life Care Studies for
funding this PhD. My colleagues and friends, who provided me with time, and
plenty of coffee, during the ups and downs of the field work. Michelle Smith
for help with formatting the thesis. My mum and my dad who patiently waited
until the end of the thesis, never doubting that I would finish it. And lastly my
family – Mark Joe and Jack, thank you for putting up with me over the last
eight years.

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Contents
Abstract ................................................................................................................ 2
Acknowledgments................................................................................................. 3
Contents ............................................................................................................... 4
Glossary of terms .................................................................................................. 8
Chapter 1: Introduction ......................................................................................... 9
1.1 Introduction ................................................................................................... 9
1.2 The relevance of this study ............................................................................. 9
1.3 Overview of the thesis .................................................................................. 16
1.4 Chapter summary ......................................................................................... 20
Chapter 2: Review of the literature ..................................................................... 21
2.1 Strategy for identifying literature for narrative literature review ................... 21
2.2 Frailty: an examination of the literature ........................................................ 24
2.3 Ageing and Society ....................................................................................... 34
2.4 UK Policy and frailty...................................................................................... 40
2.5 Reflecting on the literature ........................................................................... 43
2.6 Exploring frailty: where my study is situated ................................................. 45
2.7 Chapter Summary ......................................................................................... 47
Chapter 3: Research Methodology ...................................................................... 48
3.1 Overview of the study design ........................................................................ 48
3.2 Epistemology ................................................................................................ 49
3.3 Ethnography ................................................................................................. 52
3.4 Case Study Design ......................................................................................... 54
3.5 Selecting the field setting .............................................................................. 57
3.6 Gaining access to the research participants ................................................... 63
3.7 Ethical approval ............................................................................................ 72
3.8 Chapter summary ......................................................................................... 73
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Chapter 4: Study Field Work ................................................................................ 74
4.1 Ethnographic methods .................................................................................. 74
4.2 Participant observation................................................................................. 74
4.3 Accessing participant accounts ...................................................................... 80
4.4 Documentary review.................................................................................... 86
4.5 Developing relationships in the field ............................................................. 88
4.6 Withdrawal from the field............................................................................. 90
4.7 Analysis of the data ...................................................................................... 91
4.8 Ethical issues in the field ............................................................................. 102
4.9 Minimising distress in the field .................................................................... 115
4.10 Presence in the field ................................................................................... 120
4.11 Chapter Summary ...................................................................................... 129
Chapter 5: The study findings ............................................................................ 130
5.1 Case study participants ............................................................................... 130
5.2 Transitions in health and illness in later life ................................................. 134
5.3 Chapter Summary ....................................................................................... 162
Chapter 6: Study Findings - Dimensions of frailty ............................................... 163
6.1 Frailty as decline ......................................................................................... 163
6.2 Frailty as confinement ................................................................................ 167
6.3 Frailty as vulnerability................................................................................. 173
6.4 Frailty as a label .......................................................................................... 180
6.5 Chapter summary ....................................................................................... 188
Chapter 7: Study Findings - Health and social care provision rhetoric and reality189
7.1 The nature of participation ......................................................................... 189
7.2 Revelations and discoveries ........................................................................ 201
7.3 Chapter Summary ....................................................................................... 213

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Chapter 8: Establishing rigour ........................................................................... 215
8.1 Establishing trustworthiness ....................................................................... 215
8.2 Credibility ................................................................................................... 215
8.3 Transferability ............................................................................................ 218
8.4 Dependability ............................................................................................. 219
8.5 Reflexivity .................................................................................................. 220
8.6 Chapter Summary ....................................................................................... 220
Chapter 9: Discussion ........................................................................................ 221
9.1 Explanation of thesis title............................................................................ 221
9.2 Transitions in health and illness in later life ................................................. 222
9.3 Dimensions of frailty in later life ................................................................. 226
9.4 Health and social care provision - rhetoric and reality .................................. 231
9.5 Strengths and limitations of the study ......................................................... 235
9.6 Contribution to scholarship and the body of knowledge relating to frailty .... 238
9.7 Study implications ...................................................................................... 239
9.8 Recommendations ...................................................................................... 243
9.9 Conclusion .................................................................................................. 245
Reference List .................................................................................................... 248

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Appendix 1 Community Matron Information Sheet ............................................ 269
Appendix 2 Community Matron Presentation .................................................... 272
Appendix 3 Ethics Approval ............................................................................... 275
Appendix 4 Older person information sheet ...................................................... 280
Appendix 5 Older person consent form ............................................................. 283
Appendix 6 Community Matron Consent Form .................................................. 284
Appendix 7 Family Member Information Sheet .................................................. 285
Appendix 8 Family Member Consent Form ........................................................ 288
Appendix 9 Interview Themes for the Older Adult ............................................. 289
Appendix 10 Interview themes for the community matron .................................. 290
Appendix 11 Interview Themes for nominated significant other .......................... 291
Appendix 12 Extracts from the re-storyed account of Case 4 ................................ 292

Tables. Figures & Boxes
Table 1 Search strategy using main databases 19
Table 2 Participants in the study 64
Table 3 Dominant narratives, themes and sub-themes within the findings 95
Table 4 Details of the cases 125
Figure 1 Recruitment of Sample 63
Figure 2 Flow chart to illustrate the methods of data collection 69
Box 1 Criteria used to recruit older participants 58
Box 2 Transcript Extract 1 89
Box 3 Transcript Extract 2 90

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Glossary of terms
COPD Chronic Obstructive Pulmonary Disease
CPAP Continuous Positive Airway Pressure
LREC Local Research Ethics Committee
LRGC Local Research Governance Consortium
LTC Long Term Condition
PCT Primary Care Trust
PPOC Preferred Priorities of Care

Key to extracts of observational, interview and case account data
Italics Participant interview extracts
Non-italic Field note/field journal/observations
Boxes Case account extracts

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Chapter 1: Introduction
1.1 Introduction
The aim of this study was to contribute to the knowledge base relating to
frailty in later life. It was intended that the findings would inform the
development of current and future nursing and health care practice, as well
as health and social policy. Although there is an increasing body of literature
that has explored the concept of frailty from a biomedical perspective, there
is a lack of research based evidence exploring the experience of frailty from
an older person’s perspective. This was the focus of the study.
The introduction to this thesis is in two sections. In the first section I outline
the rationale for this study, illuminating the importance of the enquiry. I also
describe my professional background and interests that led to the study. In
the second section I provide an overview of the thesis, detailing the research
questions and methodology and the content of each chapter.
1.2 The relevance of this study
1.2.1 Demographic trends
It is now widely acknowledged that the proportion of older people in the
United Kingdom (UK) is growing. In 2010 20% of the total population were
over the age of 65, with almost half of these being over the age of 75 (Office
for National Statistics (ONS) 2010). In twenty-five years it is anticipated that
those over the age of 65 will account for 23% of the total population. It is also
expected that by 2035 the numbers of people aged at least 85 will be more
than double what they were in 2010, reaching 3.5 million (ONS 2010). Whilst
it is recognised that many older people will continue to experience good
health, for many the experience of growing into advanced old age will be
associated with multiple health problems and co-morbidity. The experience of
ill-health is more likely to occur in the ‘fourth age’, after the age of 75 years
(Laslett 1989), and may be further compounded by situational constraints,
including poverty, social isolation and increased dependency (Grenier 2012).
Furthermore, the ‘fourth age’ is often associated with a period of decline and
infirmity which ultimately leads to the end of life (Laslett 1989; Gilleard and
Higgs 2010). This has implications for the use of health and social services in
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