“It Doesn’t Define Me”: A Reflexive Thematic Analysis of People Living Well with Complex Regional Pain Syndrome
Authors List
McVicar, T., Physiotherapist Advanced Clinician, Te Whatu Ora - Te Toka Tumai Auckland, & Master of Health Science Student, Auckland University of Technology, New Zealand
Bean, D., AUT University, Auckland, New Zealand
Lennox Thompson, B., University of Otago, Dunedin, New Zealand
Introduction
Complex regional pain syndrome (CRPS) is a rare but debilitating condition. CRPS symptoms can vary from highly distressing to mild, with individuals maintaining employment and leading meaningful lives. The perspectives of people with CRPS are rarely explored with most attention paid to the difficulties and shortcomings of healthcare and society. To our knowledge, no study has attempted to understand how people learn to live well despite experiencing long-term CRPS.
Aims
To understand how individuals with long-term CRPS live well despite their pain.
Methods
Data from in-depth interviews were analysed using a reflexive thematic analysis. Participants were New Zealand-based, diagnosed with CRPS (type I or II) >12 months ago and self-identified as ‘living well’ with CRPS.
Results
Three overarching themes were identified from the thematic analysis: 1) Making sense of an unknown threat, 2) Addressing the threat, and 3) Accommodating a new life. Experiencing CRPS disrupted participants' sense of self through physical limitations, loss of independence, alteration in self-image, and withdrawal from meaningful occupations. Participants engaged in a sensemaking process facilitated by a diagnosis and specialist care, allowing them to address the multifaceted threat posed by CRPS. Rebuilding a new life post-CRPS required adjustment and accommodation. Participants recognised they needed to let go of their pre-CRPS lives and recalibrate their foundational values.
Conclusions
'Living well with CRPS’ was about understanding, adjusting and accommodating to maintain engagement in values-based actions.
McVicar, T., Physiotherapist Advanced Clinician, Te Whatu Ora - Te Toka Tumai Auckland, & Master of Health Science Student, Auckland University of Technology, New Zealand
Bean, D., AUT University, Auckland, New Zealand
Lennox Thompson, B., University of Otago, Dunedin, New Zealand
Introduction
Complex regional pain syndrome (CRPS) is a rare but debilitating condition. CRPS symptoms can vary from highly distressing to mild, with individuals maintaining employment and leading meaningful lives. The perspectives of people with CRPS are rarely explored with most attention paid to the difficulties and shortcomings of healthcare and society. To our knowledge, no study has attempted to understand how people learn to live well despite experiencing long-term CRPS.
Aims
To understand how individuals with long-term CRPS live well despite their pain.
Methods
Data from in-depth interviews were analysed using a reflexive thematic analysis. Participants were New Zealand-based, diagnosed with CRPS (type I or II) >12 months ago and self-identified as ‘living well’ with CRPS.
Results
Three overarching themes were identified from the thematic analysis: 1) Making sense of an unknown threat, 2) Addressing the threat, and 3) Accommodating a new life. Experiencing CRPS disrupted participants' sense of self through physical limitations, loss of independence, alteration in self-image, and withdrawal from meaningful occupations. Participants engaged in a sensemaking process facilitated by a diagnosis and specialist care, allowing them to address the multifaceted threat posed by CRPS. Rebuilding a new life post-CRPS required adjustment and accommodation. Participants recognised they needed to let go of their pre-CRPS lives and recalibrate their foundational values.
Conclusions
'Living well with CRPS’ was about understanding, adjusting and accommodating to maintain engagement in values-based actions.