College of Science, Health, Engineering and Education, Murdoch University, Murdoch, Western Australia, Australia.
Psychological Sciences, Australian College of Applied Professions, Perth, Western Australia, Australia.
Health Expect. 2023 Apr;26(2):785-794. doi: 10.1111/hex.13704. Epub 2023 Jan 13.
The COVID-19 pandemic continues to impact communities around the world. In this study, we explored the COVID-19 experiences of persons with multiple sclerosis (MS) and carers.
Using a qualitative approach, interviews were undertaken with 27 participants residing in Australia (10 persons with MS, 10 carers and 7 MS service providers). Demographic and background data were also collected. Interviews were analysed using an inductive iterative thematic analysis.
Across all groups, participants consistently recognized pandemic challenges and impacts for persons with MS and carers, especially due to disruption to routines and services. Emotional and mental health impacts were also highlighted, as anxiety, fear of contracting COVID-19 and stress, including relationship stress between persons with MS and carers and family members. Some persons with MS also mentioned physical health impacts, while for carers, the challenge of disruptions included increased demands and reduced resources. In addition to acknowledging challenges, persons with MS and carers also gave examples of resilience. This included coping and adapting by finding new routines and creating space through rest and breaks and through appreciating positives including the benefits of access to telehealth.
Additional support is required for persons with MS and carers in navigating the impacts of COVID-19 as the pandemic progresses. In addition to addressing challenges and disruptions, such support should also acknowledge and support the resilience of people with MS and carers and enhance resilience through supporting strategies for coping and adaptation.
Service user stakeholders were consulted at the beginning and end of the study. They provided feedback on interview questions and participant engagement, as well as service user perspectives on the themes identified in the current study. Participants were provided with summaries of key themes identified and invited to provide comments.
新冠疫情继续在全球各地的社区中产生影响。在这项研究中，我们探讨了多发性硬化症（MS）患者及其照顾者的新冠疫情经历。
使用定性方法，对居住在澳大利亚的 27 名参与者（10 名 MS 患者、10 名照顾者和 7 名 MS 服务提供者）进行了访谈。还收集了人口统计学和背景数据。使用归纳迭代主题分析对访谈进行了分析。
在所有组中，参与者一致认识到新冠疫情对 MS 患者和照顾者的挑战和影响，尤其是由于日常生活和服务的中断。还强调了情绪和心理健康的影响，如焦虑、对感染 COVID-19 的恐惧以及压力，包括 MS 患者与照顾者以及家庭成员之间的关系压力。一些 MS 患者还提到了身体健康的影响，而对于照顾者来说，中断的挑战包括需求增加和资源减少。除了认识到挑战之外，MS 患者和照顾者还举例说明了他们的韧性。这包括通过找到新的日常生活并通过休息和放松来创造空间，以及通过欣赏包括获得远程医疗的好处在内的积极方面来应对和适应。
随着疫情的发展，MS 患者及其照顾者需要更多的支持来应对新冠疫情的影响。除了解决挑战和中断外，这种支持还应承认和支持 MS 患者和照顾者的韧性，并通过支持应对和适应的策略来增强他们的韧性。
在研究开始和结束时，与服务使用者利益相关者进行了协商。他们就访谈问题和参与者参与情况提供了反馈意见，以及服务使用者对当前研究中确定的主题的看法。向参与者提供了确定的关键主题摘要，并邀请他们发表意见。
