Using Life Story Boards to Engage Clinical Support Workers ... ?· Care with People Living with Dementia…

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  • Using Life Story Boards to Engage Clinical Support Workers in Person-Centred

    Care with People Living with Dementia in an NHS Inpatient Dementia Care Unit:

    A Thematic Analysis

    Alexandra Helen Russell

    Submitted in partial fulfilment of the Doctorate in Clinical Psychology

    University of East Anglia

    Faculty of Medicine and Health Sciences

    1st March 2016

    Word Count: 40,000

    This copy of the thesis has been supplied on condition that anyone who

    consults it is understood to recognise that its copyright rests with the author and

    that use of any information derived there from must be in accordance with

    current UK Copyright Law. In addition, any quotation or extract must include

    full attribution.

  • 1

    Abstract

    Person-centred care (PCC) is the recommended model of dementia care however there

    are challenges regarding how care staff implement PCC principles in practice. Life story

    work is one way for care staff to enact the principles of PCC in a structured way with

    people living with dementia. Life story boards are a less researched method of gathering

    and recording a life story but may provide a more visual and immediate impact on staff

    in their everyday clinical practice. Underpinned by elements of technical participatory

    action research (PAR), this study used life story boards to engage clinical support

    workers (CSWs) in PCC with people living with dementia in an inpatient dementia care

    setting. The study explored how these care staff reported their experiences of the process

    of creating life story boards and experienced PCC via this process. Semi-structured

    interviews were completed with seven CSWs pre and post-life story implementation to

    gather this data. Inductive thematic analysis identified four themes: the unit culture as a

    barrier to valuing PCC and the personhood of patients; Us versus them: CSWs

    positioning of their role; an altered view of the patient with dementia; and a sense of

    hope: getting past the barriers. Implications for clinical practice involve the importance

    of collaborative input and leadership from services, empowerment and support of CSWs,

    as well as commitment to PCC values at all levels of organisational structures so that the

    organisational culture does not impede life story work implementation for care staff such

    as CSWs. Using PAR elements and practice development approaches encourages these

    important clinical implications to be achieved. Recommendations for future research

    include maintaining focus on the more severe end of dementia in inpatient care and more

    research of the life story board format due to the boards not getting completed and

    displayed on the unit.

  • 2

    Table of Contents

    Abstract ........................................................................................................................................... 1

    List of Figures ................................................................................................................................. 7

    Acknowledgements ......................................................................................................................... 8

    1. Introduction ................................................................................................................................. 9

    1.1 What is Dementia and What is the Nature of the Problem? .................................................. 9

    1.2 The Biomedical Model of Dementia ................................................................................... 11

    1.3 Organisational Culture Shift in Dementia Perspectives ...................................................... 12

    1.4 First person perspectives in dementia ................................................................................. 13

    1.5 Personhood and Person-Centred Care ................................................................................. 14

    1.6 Life Story Work .................................................................................................................. 24

    1.6.1 Implementing life story work. ...................................................................................... 30

    1.7 The Dementia Care Staff Role ............................................................................................ 33

    1.8 Summary ............................................................................................................................. 38

    1.9 Research Question ............................................................................................................... 39

    2. Method ...................................................................................................................................... 40

    2.1 Overview ............................................................................................................................. 40

    2.2 Design.................................................................................................................................. 40

    2.2.1 Qualitative framework. ................................................................................................. 40

    2.2.2 Use of thematic analysis. .............................................................................................. 40

    2.2.3 Use of elements of a participatory action research approach. ...................................... 41

    2. 3 Epistemological Position .................................................................................................... 45

    2.3.1 Reflexive statement and position as a researcher. ........................................................ 46

    2.4 Context for the Research ..................................................................................................... 49

    2.5 Participants .......................................................................................................................... 51

  • 3

    2.5.1 CSW participants. ......................................................................................................... 51

    2.5.2 Co-researcher participants. ........................................................................................... 51

    2.5.3 Inclusion and exclusion criteria for CSW participants. ................................................ 52

    2.5.4 Sampling. ...................................................................................................................... 53

    2.5.4.1 CSW participants. .................................................................................................. 53

    2.5.4.2 Co-researcher participants. .................................................................................... 54

    2.6 Study Procedure and Recruitment ....................................................................................... 56

    2.6.1 Engaging the research site. ........................................................................................... 58

    2.6.2 Recruiting and consenting. ........................................................................................... 58

    2.6.3 Initial interviews. .......................................................................................................... 59

    2.6.4 Life story board training. .............................................................................................. 59

    2.6.5 Life story board implementation phase. ....................................................................... 60

    2.6.6. Post-implementation interviews. ................................................................................. 60

    2.6.7 Post-study dissemination. ............................................................................................. 60

    2.7 Interview Guide and Procedure ........................................................................................... 61

    2. 8 Data Analysis ..................................................................................................................... 62

    2.8.1 Transcription and familiarisation. ................................................................................ 62

    2.8.2 Coding. ......................................................................................................................... 63

    2.8.3 Development of themes. ............................................................................................... 63

    2. 9 Methodological Rigour....................................................................................................... 65

    2.9.1 Transparency and coherence. ....................................................................................... 66

    2.9.1.1 Reflexivity. ................................................................................................................. 67

    2.9.2 Commitment and rigour. .............................................................................................. 67

    2.9.3 Impact and importance. ................................................................................................ 68

    2.9.4 Sensitivity to context. ................................................................................................... 69

    2.10 Ethical considerations........................................................................................................ 69

    2.10.1 Informed consent. ......................................................................