‘The world was going through what we go through everyday’: The experiences of women with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) living with their partners during the COVID-19 lockdown in the United Kingdom

IF 3.5 2区心理学 Q1 PSYCHOLOGY, CLINICAL

British Journal of Health Psychology Pub Date : 2024-03-06 DOI:10.1111/bjhp.12717

Tarnjit Sehmbi, Alison Wearden, Sarah Peters, Kimberly Dienes

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引用次数: 0

Abstract

Objectives

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term debilitating illness characterised by profound and persistent fatigue (JAMA: The Journal of the American Medical Association, 313, 2015, 1101). The current study aims to explore the experiences of women with ME/CFS living with their partners during the COVID-19 pandemic in the United Kingdom.

Design

The study adopted a qualitative design comprising semi-structured interviews with participants. Interviews were analysed using thematic analysis (TA).

Methods

Participants were women with ME/CFS (n = 21) recruited through ME/CFS support groups in the United Kingdom. All participants were in romantic relationships and lived with their partners.

Results

Data were organised into three themes: (1) lockdown disrupting routine, (2) reducing difference and (3) fear of getting COVID-19. People with ME/CFS found that lockdown disrupted their well-established routines. Although routines were disrupted by partners and increased working-from-home practices, participants found having partners at home helpful. People with ME/CFS believed that the changes induced by the pandemic reduced the differences between themselves and the outside world which, prior to lockdown, had felt prominent. They were fearful of getting COVID-19 as they believed this would make their ME/CFS worse. This meant that for people with ME/CFS, the lifting of the lockdown restrictions was an anxiety-provoking time, hence impacting symptoms. People with ME/CFS continued to adhere to government guidelines after national restrictions were eased.

Conclusions

This study outlines the experiences of women with ME/CFS during COVID-19, alongside the long-term impact this has had due to the changes that the pandemic imposed. These findings may have implications for those with long COVID.

查看原文本刊更多论文

全世界都在经历我们每天都在经历的事情"：患有肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）的妇女在英国 COVID-19 封锁期间与伴侣共同生活的经历。

目的：肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）是一种长期衰弱性疾病，其特征是深度和持续疲劳（《美国医学会杂志》：《美国医学会杂志》，313，2015，1101）。本研究旨在探讨英国 COVID-19 大流行期间患有 ME/CFS 的妇女与其伴侣的生活经历：研究采用定性设计，包括对参与者进行半结构化访谈。采用专题分析法（TA）对访谈进行分析：参与者是通过英国 ME/CFS 支持团体招募的患有 ME/CFS 的女性（n = 21）。所有参与者都有恋爱关系，并与伴侣共同生活：结果：数据分为三个主题：（1）禁闭会扰乱日常生活习惯；（2）减少差异；（3）害怕感染 COVID-19。患有 ME/CFS 的人发现，"禁闭 "扰乱了他们既定的生活规律。虽然常规生活被伙伴和更多的在家工作的做法打乱了，但参与者认为在家里有伙伴是有帮助的。患有 ME/CFS 的人认为，大流行病引起的变化缩小了他们与外部世界的差异，而在封锁之前，这种差异是非常明显的。他们害怕感染 COVID-19，因为他们认为这将使他们的 ME/CFS 变得更糟。这意味着，对患有 ME/CFS 的人来说，解除封锁限制是一个令人焦虑的时刻，因此会对症状产生影响。在国家放宽限制后，ME/CFS 患者继续遵守政府的指导方针：本研究概述了患有 ME/CFS 的女性在 COVID-19 期间的经历，以及大流行所带来的变化所造成的长期影响。这些发现可能会对那些长期患有 COVID 的人产生影响。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

British Journal of Health Psychology PSYCHOLOGY, CLINICAL-

CiteScore

14.10

自引率

1.30%

发文量

期刊介绍： The focus of the British Journal of Health Psychology is to publish original research on various aspects of psychology that are related to health, health-related behavior, and illness throughout a person's life. The journal specifically seeks articles that are based on health psychology theory or discuss theoretical matters within the field.