School of Health Sciences, Faculty of Medicine and Health Science, University of East Anglia, Norwich, UK.
School of Health Sciences - Behavioural and Implementation Science Group, Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, UK.
Diabet Med. 2022 Jun;39(6):e14784. doi: 10.1111/dme.14784. Epub 2022 Jan 14.
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.
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.
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.
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.
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.
夏科氏关节病（CN）是糖尿病患者周围神经病变的一种并发症。治疗需要长时间穿着减压装置，这可能具有挑战性。人们深知了解人们的观点对于促进他们参与自我管理的重要性。然而，在 CN 中尚未进行过此类研究。本定性研究旨在了解人们对 CN 的体验。
对 14 名随机对照试验中患有 CN 的参与者进行了半结构式访谈。我们收集了参与者对 CN 及其对身体、社会经济和生理的影响的意见、想法和他们所赋予的意义，以及这如何影响他们的家庭和人际关系。我们使用归纳主题分析对访谈进行了分析。
确定了四个分析主题：（1）“被困在家里，孤立无援，失去了社交和日常生活”；（2）“人们的角色、责任、人际关系和流动性受到干扰，人们试图适应和解决这些问题”；（3）“参与者将疼痛与佩戴石膏或靴子的直接或间接后果联系起来”；（4）“对患有 CN 的自责，归咎于自己和医疗保健专业人员”。参与者描述了对需要更多支持的内疚感，表达了沮丧、情绪低落和自尊心低。
本研究强调了 CN 以前未被认识到的负担的体验方面。它对参与者及其家人的身体、社会和情感影响是巨大且持续的。需要提高对 CN 及其更广泛影响的临床认识。
ISRCTN74101606。于 2017 年 11 月 6 日在 ISRCTN 注册，网址为：http://www.isrctn.com/ISRCTN74101606?q=CADom&filters=&sort=&offset=1&totalResults=1&page=1&pageSize=10&searchType=basic-search。
