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接纳与身份转变:对肌痛性脑脊髓炎/慢性疲劳综合征患者照料者经历的解释现象学分析

Acceptance and identity change: An interpretative phenomenological analysis of carers' experiences in myalgic encephalopathy/chronic fatigue syndrome.

作者信息

Catchpole Sarah, Garip Gulcan

机构信息

University of Derby, UK.

出版信息

J Health Psychol. 2021 Apr;26(5):672-687. doi: 10.1177/1359105319834678. Epub 2019 Mar 21.

Abstract

Myalgic encephalopathy/chronic fatigue syndrome is a debilitating condition and many people rely heavily on family carers. This study explored the caring experiences of seven family carers. Four themes were established: relations with others, role and identity changes, coping with change and uncertainty, and information and support seeking. Caring disrupted multiple areas of carers' lives, including their identities and relationships. Scepticism from others about myalgic encephalopathy/chronic fatigue syndrome was particularly distressing. Acceptance was important for coping and helped some carers achieve positive growth within spousal relationships. Improving support and advice for carers and acknowledging their caring burden could improve their well-being.

摘要

肌痛性脑脊髓炎/慢性疲劳综合征是一种使人衰弱的疾病,许多患者严重依赖家庭照顾者。本研究探讨了七位家庭照顾者的照顾经历。确定了四个主题:与他人的关系、角色和身份变化、应对变化和不确定性以及寻求信息和支持。照顾行为扰乱了照顾者生活的多个方面,包括他们的身份和人际关系。他人对肌痛性脑脊髓炎/慢性疲劳综合征的怀疑尤其令人苦恼。获得认可对于应对至关重要,并帮助一些照顾者在配偶关系中实现积极成长。改善对照顾者的支持和建议,并认识到他们的照顾负担,可能会改善他们的幸福感。

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