Table of Contents abstract Understandings and experiences of living with an acquired brain injury (abi): an ethnographic and interpretative phenomenological analysis. Introduction 3

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Table of Contents

Table of Contents 1

Abstract 1

Understandings and experiences of living with an acquired brain injury (ABI): an ethnographic and interpretative phenomenological analysis. 2

Introduction 3

Background 3

Literature Review 3

Aims 6

Methodology 7

Method 7

Data collection 8

Participants 8

Data Analysis 9

Analytic procedures 9

Results 10

Overview 10

Ambivalent feelings towards ABI 11

Understanding and misunderstanding ABI 15

A fluctuating sense of agency 16

Still having a life to live 20

Discussion 23

How is ABI understood? 23

What is it like to live with ABI? 24

Evaluation 26

Conclusion 27

References 28

Appendices – included for transparencies sake and excluded from word count. 32

Appendix 1: interview agenda 32

Appendix 2: coding frame 33


Acquired brain injury (ABI) is the primary cause of disability in people under 40 years of age in the UK (Patel et al., 2003). Lived experiences of ABI have neglected by ABI research and the studies that have included them have tended to focus on only one aspect of the experience, such as loss or personal growth. However, a review of the literature suggests that the impacts of ABI are pervasive and the consequences for the individual highly complex. This dual method qualitative study proposed to explore participant-defined meanings and lived experiences of life with an acquired brain injury (ABI) through the synthesis of data from semi-structured interviews and photo elicitation. A longitudinal design is proposed in order to further elucidate the shifting and multidimensional nature of understandings and experiences of ABI. Three key areas of interest would guide the study; how do people living with an acquired brain injury understand their brain injury; what is it like to live with an acquired brain injury; is ambivalence a defining feature of experiences and understandings of life with ABI? Although not an intervention, it is hoped that giving voice to client perspectives will be an empowering experience for participants, who are considered to be experts in the experience of ABI. By allowing participants to talk in their own words and make their invisible disability more visible through photography, this study aims to develop a more balanced representation of life with ABI.

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