A qualitative study to understand people’s experiences of living with Charcot neuroarthropathy

Catherine Gooday, Wendy Hardeman, Frances Game, Jim Woodburn, Fiona Poland

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6 Citations (Scopus)
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Aims: Charcot neuroarthropathy (CN) is a complication of neuropathy, in people with diabetes. Treatment requires the prolonged wearing of an offloading device, which can be challenging. The importance of understanding people’s perspectives for promoting their engagement in self-management is well known. However, no such studies have been done in CN. This qualitative study aimed to understand people’s experiences of CN.
Methods: Semi-structured interviews with a purposive sample of 14 participants with CN, recruited from a randomised controlled trial. We gathered opinions, thoughts, and the meanings participants attributed to their experiences of CN and its physical, socio-economic, and physiological effects and how this affected their families, and relationships. We analysed the interviews using Inductive Thematic Analysis.
Results: Four analytic themes were identified: 1) ‘Trapped at home isolated and missing social life and daily life routines’; 2) ‘Disruption to people’s roles, responsibilities, relationships, and mobility, which people adapted to try and address and manage’; 3) ‘Pain which participants related to the direct or indirect consequences of wearing the cast or boot’; 4) ‘Blame for developing CN, attributed to themselves and healthcare professionals’. Participants described guilt about needing more support, expressing frustration, low mood, and low self-esteem.
Conclusion: This study highlights experiential aspects of the previously unrecognised burden of CN. Its physical, social, and emotional impact on participants and their families is substantial and sustained. There is a need to raise clinical awareness of CN and its wider effects.
Original languageEnglish
Article numbere14784
JournalDiabetic Medicine
Issue number6
Early online date5 Jan 2022
Publication statusPublished - Jun 2022

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