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Living Well with Complex Regional Pain Syndrome: A Qualitative Exploration of Lived Experiences

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Thesis(16.68 MB)

Date

2024

Authors

Supervisor

Bean, Debbie
Lennox-Thompson, Bronwyn

Item type

Thesis

Degree name

Master of Health Science

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Publisher

Auckland University of Technology

Abstract

Introduction: Complex regional pain syndrome (CRPS) is frequently considered a limiting and distressing condition, and previous qualitative research has highlighted the difficulties of living with CRPS and the shortcomings of healthcare and society. However, there is considerable variability among individuals with CRPS, with some people maintaining meaningful lives despite their condition. Thus far, no study has attempted to understand how people learn to live well despite experiencing long-term CRPS. This information could help inform best practice guidelines and the development of future resources. Aim: To understand how individuals with long-term CRPS live well despite their condition. Methods: Participants were New Zealand-based, diagnosed with CRPS (type I or II) more than 12 months ago, and self-identified as ‘living well’ with CRPS. Data from in-depth interviews were analysed using a reflexive thematic analysis. Results: Participants (n=10, 70% female) described living well with CRPS as the product of a journey and acknowledged previous times of not living well: “Living against CRPS.” Living against CRPS was characterised by symptom dominance, forcing the participants to withdraw from fundamental features of their identity and disrupting their sense of self. In contrast, participants described “Living well with CRPS” as the restoration of their sense of self by rebuilding purpose and meaning in their lives with the focus on living alongside, in partnership with, their painful limb. Participants described three themes that supported their journey to living well with CRPS: 1) Making sense of my new life with CRPS: Participants used information obtained through diagnosis, research and social connections to develop a personalised and evolving conceptual model to understand CRPS. 2) Taking control in a seemingly uncontrollable world: Participants utilised professional support, evaluated and adopted selected tools for self-management, and recalibrated to a new pace of life in order to take control of their lives. 3) Rebuilding a purposeful life with a new identity: Participants described accepting a new life with CRPS and shifting attention to focus on meaningful and purposeful activities, which contributed to a new post-CRPS identity. Conclusion: 'Living well with CRPS’ was described as restoring one’s sense of self through sensemaking, adjusting, and accommodating to maintain engagement in meaningful activities and life roles.

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http://hdl.handle.net/10292/18117

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Masters Theses