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

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Gooday, Catherine
Hardeman, Wendy
Game, Frances
Woodburn, Jim
Poland, Fiona
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2022
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https://creativecommons.org/licenses/by/4.0/
Abstract

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'; and (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 impacts on participants and their families are substantial and sustained. There is a need to raise clinical awareness of CN and its wider effects. TRIAL REGISTRATION: ISRCTN74101606. Registered on 6 November 2017, http://www.isrctn.com/ISRCTN74101606?q=CADom&filters=&sort=&offset=1&totalResults=1&page=1&pageSize=10&searchType=basic-search.

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Diabetic Medicine
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© 2022 The Authors. Diabetic Medicine published by John Wiley & Sons Ltd on behalf of Diabetes UK. This is an open access article under the terms of the Creat ive Commo ns Attri bution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited
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Clinical sciences
Psychology
Charcot neuroarthropathy
diabetes complications
guilt
pain
qualitative research
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Gooday, C; Hardeman, W; Game, F; Woodburn, J; Poland, F, A qualitative study to understand people's experiences of living with Charcot neuroarthropathy, Diabetic Medicine, 2022, pp. e14784
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