understanding the working lives of learning disability nurses

245 Pages·2017·3.43 MB·English

MAKING A DIFFERENCE?
UNDERSTANDING THE
WORKING LIVES OF LEARNING
DISABILITY NURSES: 30 YEARS
OF LEARNING DISABILITY
NURSING IN ENGLAND

A Thesis Submitted in Partial Fulfilment of the Requirements
of the Award of Doctor of Philosophy De Montfort University
Nicky Genders
October 2016
Abstract

The study aimed to explore the lived experience of the careers of learning disability
nurses in England. The methodology was informed by Hermeneutic Phenomenology,
and the study design utilised narrative interviewing techniques based on an adapted
model of the Biographic Narrative Interpretive Method (Wengraf 2001) in order to
explore the career choices, experiences and beliefs, and values about learning
disability nursing. Twenty in-depth qualitative interviews with learning disability
nurses, who had been in practice in the 30-year period between 1979 and 2009,
were undertaken in 2010 across nine counties in England. The data was interpreted
using a narrative analysis approach. Key findings indicated that nurses, working in a
diverse range of settings with varying degrees of experience, are motivated by
working with people with learning disabilities and narrate their experiences of
building relationships with people articulating the meaning of this for them as nurses.
The initial reasons for choosing learning disability nursing as a career formed a key
theme within the findings, with complex influences on their career choice.
Additionally, all participants in this study created a narrative of change, focusing on
the ways in which change in policy, practice and in societal views have impacted
upon their working lives and their identity. The individual narratives have also been
interpreted to form a collective narrative of learning disability nursing to specifically
explore the identity of learning disability nurses and nursing in a changing context of
health and social care provision.

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Acknowledgements
Undertaking a piece of work of this length and depth takes time and is not achieved
without support of others in this venture. I would like to acknowledge and thank a
number of people here.
Firstly, my supervisors Professor Brian Brown and Dr Tina Harris have provided
consistent support for a number of years, offering guidance, wisdom and
reassurance through many changes. My PhD studies began with two early
supervisors, Professor Denis Anthony and Dr Sue Dyson, who started me off on this
journey. The Faculty of Health at Life Sciences at De Montfort University Leicester
had also financially supported my studies initially and for this I also thank them.
Colleagues at De Montfort University (DMU) offered support and, even after moving
to South Wales and leaving my employment at DMU, many have continued to
support and ‘cheerlead’ from afar. When I began this journey a colleague at DMU, Dr
Kip Jones, was instrumental in my thinking about method and has continued to
support me throughout the past eight years.

This long journey also contained some career changes, including promotion within
DMU to a move in 2014 from my hometown of Leicester and a 26-year career at
DMU to a new life, personally and professionally, at the University of South Wales
(USW), based in the beautiful South Wales valleys. As Head of School of Care
Sciences, I have been supported in the continuation of my PhD by both colleagues in
the school and Faculty of Life Sciences and Education. In addition to the support
from my workplaces I have also had the most amazing support from Professor
Duncan Mitchell, who has given his time so generously to support me with the
specialist learning disability content of this project.

I have learnt in the past two years that, wherever I live, I have the support of many
wonderful friends and family. My Mum and Dad are unfailing in their belief in me and
in their practical and emotional support. I also met (my now) husband, Andy, during
this PhD journey and he has been the rock, grounding and supporting me whenever
I have been shaky in my resolve.

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I also started this journey as a single parent to two wonderful older teenagers who
were in the process of managing huge changes in their lives. Levi, my son, joined
the armed services and Amy, my daughter, started her undergraduate degree. Our
lives are entwined and run parallel. Levi spent almost a year in a conflict zone,
returned to the UK and, after leaving the armed services, went to live in Australia for
a year. He is now home in the UK. Amy completed her degree and moved to south
Wales to undertake her post-graduate studies before registering for her own full-time
PhD. Through all of their life changes and mine, we have always been there to
support each other and I would like to say a huge thank you to them for being such
fantastic young people (now adults).

I have too many friends to thank individually but all have been on this journey with
me. Some of these friends maintain contact through virtual environments of social
media, but they are equally as valuable as those I see regularly. Joanne, Heather
and Sarah have been the type of friends latterly who send those almost daily
messages, spurring me on and keeping me motivated.

My PhD studies have been an important aspect of my life for the past eight years but
they are kept in perspective by life events and those people I have around me,
grounding me and ensuring I remember who I am.

To all of these people - Thank You.

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TABLE OF CONTENTS
CHAPTER 1 INTRODUCTION AND AIMS OF THE STUDY 8
1.1 INTRODUCTION 8
1.2 MODEL OF SERVICE DELIVERY FOR PEOPLE WITH LEARNING DISABILITIES 9
1.3 THE IMPACT OF CHANGING SERVICE MODELS ON THE LEARNING DISABILITY NURSE’S ROLE 14
1.4 AIMS OF THE STUDY 19
1.5 THESIS STRUCTURE 20
CHAPTER 2 LITERATURE REVIEW 21
2.1 MAPPING THE PROCESS 21
2.2 CARE FOR PEOPLE WITH LEARNING DISABILITIES: A HISTORICAL CONTEXT 24
2.2.1 POST JAY REPORT AND THE ERA OF COMMUNITY CARE 35
2.3 THE EDUCATION AND TRAINING OF NURSES 39
2.3.1 CHOOSING NURSING AS A CAREER 40
2.5 BEING A LEARNING DISABILITY NURSE: THE WORKING LIVES OF LEARNING DISABILITY NURSES 46
2.5.1 ROLE DIVERSITY 46
2.5.2 RELATIONSHIPS AS PART OF THE NURSE’S ROLE 47
2.6 IDENTITY AND ROLE THEORY 50
2.6.1 SOCIAL IDENTITY THEORY 51
2.6.2 SIMILARITY AND DIFFERENCE: THE ROLE OF THE ‘OTHER’ 54
2.6.3 RELATIONAL IDENTITY 55
2.6.4 IDENTITY AND THE CHANGING ROLE OF THE LEARNING DISABILITY NURSE 56
2.6.6 PROFESSIONAL IDENTITY AND PROFESSIONAL SOCIALISATION 58
2.7 CONCLUSION 60

CHAPTER 3 METHODOLOGY 62
3.1 INTRODUCTION 62
3.1.1 CHOOSING THE RIGHT APPROACH 62
3.2 NARRATIVE INQUIRY 63
3.2.1 PHILOSOPHICAL UNDERPINNINGS OF NARRATIVE INQUIRY 66
3.2.2 NARRATIVE WITHIN SOCIAL AND CULTURAL BOUNDARIES 67
3.2.3 NARRATIVE CAPTURING TIME 68
3.2.4 NARRATIVE AND IDENTITY 68
3.3 DEVELOPING THE CONCEPT OF UNSTRUCTURED INTERVIEWS: THE CASE OF BNIM 69
3.4 THE RESEARCH PROCESS 71
3.4.1 POPULATION TARGET 72
3.4.2 ENGAGING THE SAMPLE 72
3.4.3 ETHICAL ISSUES 74
3.4.4 ANONYMITY AND PRIVACY 74
3.5 THE RESEARCHER POSITION IN THE RESEARCH: SHARED UNDERSTANDINGS 75
3.5.1 COMMUNICATION WITH PARTICIPANTS THROUGH THE LIFE OF THE PROJECT 77
3.6 DATA COLLECTION AND THE RESEARCH DESIGN 77
3.6.1 METHODS OF DATA COLLECTION: THE PILOT INTERVIEWS 78
3.6.2 DATA COLLECTION: CONDUCT OF INTERVIEWS 79
3.7 PRESENTATION OF FINDINGS 80
3.7.1 THE PARTICIPANTS 80
3.7.2 THE INTERPRETIVE TASK 81
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3.8 DATA ANALYSIS 82
3.8.1 TRUSTWORTHINESS, CREDIBILITY AND AUTHENTICITY IN THE RESEARCH PROCESS 84
3.9 CONCLUSION 85
CHAPTER 4 FINDINGS – PARTICIPANT CAMEOS 86
4.1 INTRODUCTION 86
4.2 CAMEOS OF PARTICIPANTS 88
TINA 88
MARY 90
ROBERT 92
LORNA 93
KAREN 95
PAULA 96
MATTHEW 97
ANNETTE 98
DAVID 100
JANE 101
MARTIN 102
QUINN 103
DEAN 105
RYAN 106
JULIE 107
NARISA 109
DEBBIE 110
ANGELA 111
JENNY 112
WENDY 113

CHAPTER 5 BECOMING A LEARNING DISABILITY NURSE 116
5.1 INTRODUCTION 116
5.2 FACTORS INFLUENCING CHOOSING ‘TO BECOME’ A NURSE 117
5.2.1 INFLUENCES: FAMILY AND SIGNIFICANT OTHERS 118
5.2.2 CIRCUMSTANCE, HAPPENSTANCE AND LIFE CHANGES 123
5.2.3 PERCEPTIONS OF NURSING 127
5.2.4 PREVIOUS EXPERIENCES OF PEOPLE WITH A LEARNING DISABILITY 128
5.3 PROFESSIONAL SOCIALISATION – LEARNING THE CRAFT 132
5.3.1 UNCERTAINTY 133
5.3.2 TESTING TIMES 137
5.3.3 MAKING A DIFFERENCE 140
5.4 CONCLUSION 142
CHAPTER 6 ON BEING A LEARNING DISABILITY NURSE 144
6.1 INTRODUCTION 144
6.2 CARVING A CAREER 144
6.3 ROLE DIVERSITY 148
6.4 CREATING A LEARNING DISABILITY NURSING IDENTITY 151
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6.5 RELATIONSHIPS’ AS PART OF IDENTITY 152
6.6 CHALLENGE TO CHANGE 156
6.7 CHALLENGED IDENTITIES: ‘PROPER NURSES’? 161
6.8 CHALLENGED IDENTITIES: VISION OF THE FUTURE 165
6.9 CONCLUSION 168

CHAPTER 7 DISCUSSION 169
7.1 INTRODUCTION 169
7.2. MAKING CAREER CHOICES 170
7.2.1 CHOOSING NURSING: ASPECTS OF ‘SELF’ 171
7. 2.2 CHOOSING NURSING: EDUCATIONAL ATTAINMENT 173
7.2.3 CHOOSING LEARNING DISABILITY NURSING IN THE CONTEXT OF CHANGING SERVICE PROVISION174
7.2.4 BECOMING A LEARNING DISABILITY NURSE: ASPECTS OF RESILIENCE 174
7.2. 5. AN EVOLVING NURSING IDENTITY 175
7.3 THE WORKING LIVES OF LEARNING DISABILITY NURSES 177
7.3.1 CHANGING SERVICE PROVISION 177
7.3.2 CHANGING ROLES 179
7.3.3 THE CHALLENGE TO CHANGE PRACTICE 180
7.3.4 CHANGING RELATIONSHIPS 182
7.4 PROFESSIONAL IDENTITY: WHO ARE WE? 182
7.4.1 THE LEARNING DISABILITY NURSE AS THE ‘OTHER’ 183
7.4.2 THE SELF IN LEARNING DISABILITY NURSING. 183
7. 4.3 CHALLENGED IDENTITIES 187
7.4.4 COLLECTIVE IDENTITY AND THE LEARNING DISABILITY NURSE 189
7. 4.5 CHALLENGED IDENTITIES: 'NOT A PROPER NURSE' REVISITED 192
7.5 CONCLUDING DISCUSSION: TOWARDS A NEW MODEL OF LEARNING DISABILITY NURSING
IDENTITY 193

CHAPTER 8 THE PLACE OF THIS STUDY IN LEARNING DISABILITY NURSING:
REFLECTIONS, LIMITATIONS AND MOVING FORWARD. 198
8.1 STUDY LIMITATIONS 198

8.2 IMPLICATIONS FOR EDUCATION AND PRACTICE AND RESEARCH 198
8.2.1 EDUCATION: COMMISSIONING 198
8.2.2 EDUCATION: RECRUITMENT 199
8.2.3 EDUCATION: CURRICULA 200
8.2.4 IMPLICATIONS: PRACTICE 202
8.2.5 FURTHER RESEARCH 203

8.3 TO CONCLUDE… 203

REFERENCES 205

APPENDICES

APPENDIX 1 SEARCH TERMS
APPENDIX 2 ONLINE INVITATION TO PARTICIPATE
APPENDIX 3 INVITATION LETTER
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APPENDIX 4 PARTICIPANT INFORMATION SHEET
APPENDIX 5 CONSENT FORM
APPENDIX 6 ETHICS APPROVAL
APPENDIX 7 LIST OF CONFERENCE PRESENTATIONS

LIST OF TABLES AND FIGURES

TABLE 1 PARTICIPANT DATA 87

FIGURE 1 BECOMING A LEARNING DISABILITY NURSE 116
FIGURE 2 INFLUENCING FACTORS 118
FIGURE 3 THEMES: PROFESSIONAL SOCIALISATION 132
FIGURE 4 ASPECTS OF SELF 187
FIGURE 5 IDENTITY TRANSITION 196

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Chapter 1 Introduction and Aims of the Study

1.1 Introduction

There has been a revolution in the ways in which people with learning
disabilities are both cared for and supported, and this necessarily has led to
nothing short of a revolution to the practice of learning disability nursing.
(Gates 2011, p5)

There have been a number of influential factors that led to the undertaking of this
study, including my professional background as a learning disability nurse who
trained more than 30 years ago in a care context that was very different to today.
The quotation from Gates (2011) above resonated with my experiences of learning
disability nursing over a 30-year period, observing a seismic shift in not only the
locations of care and support for people with learning disabilities but also the
philosophical underpinnings of this care. At the beginning of this study in 2009 it had
been 30 years since the recommendations of the Jay Report (1979) had suggested a
move towards an altogether different model of care for people with learning
disabilities and the demise of the learning disability nurse to be replaced by a worker
based in social care, Learning disability nurses had been a key provider of care in an
NHS-based system for those people who required support. My observation over the
30 years was that this role had changed, roles had been challenged, reconfirmed
and redefined and the professional identity of learning disability nurses had been
impacted on by these changes. A driver for undertaking this study was a curiosity in
how these changes had shaped the professional identity of the learning disability
nurse. My own journey was an important influence as I was aware this was also
shaped by these changes in policy and services for people with learning disabilities
over the past three decades. Being aware of my own position as a nurse would
enable me to ‘pay attention’ to this within the research process (Holloway &
Freshwater, 2007).

This thesis is underpinned by the view that learning disability is largely socially
constructed and this will be discussed later in the thesis. Social and health policy
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have defined and redefined learning disability nursing since its inception and in the
past 30 years this has dramatically changed the meaning of nursing in this field of
practice. But what impact does this have on the individuals who work as nurses
within these services, on society, and the views around learning disability nurses?
Understanding the history of learning disability nursing over the past 30 years
enables us to see how society has constructed the meaning of learning disability, of
community care and of learning disability nurses.

1.2 Models of service delivery for people with learning disabilities
With the social construction of learning disability in mind, it is important to consider
the ways in which society has ‘cared for’ people with learning disabilities, as this in
turn has impacted on those who chose to work with people with this group.

The history of learning disability goes back as far as we have been able to write
about the human condition. In pre industrial times it is suggested that people with
learning disabilities were often part of communities where literacy and numeracy
were not a necessity or priority. As such ‘services’ for people with learning disabilities
in any formalised structure did not exist. D u r i n gthe Victorian era the rise of the
institution brought with it a range of views and beliefs about people with learning
disabilities. Not only did the institution provide society with an opportunity to remove
‘undesirable individuals’ from society, but also the opportunity for segregation of the
sexes and the stifling of human rights for people with learning disabilities.

The notion of community care and maintaining people within their own homes rather
than providing residential care has been spelt out since the early 1950s, even though
socio-demographic changes suggest changing family structures will lead to declining
numbers of potential care givers (Allsop, 1995). One of the attractions of community
care for the Government may have been that it appeared a cheaper model, but this
was also supported by a societal view that community care was a more appropriate
on ‘humanitarian and moral’ grounds (Royal Commission, 1957).

But, whilst public support for community care for the elderly grew in the 1950s, the
numbers of people in ‘sub normality’ hospitals continued to rise. Perhaps due to
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