结伴同行：多发性硬化症患者的伴侣对其生活方式改变对其关系影响的体验。
On the path together: Experiences of partners of people with multiple sclerosis of the impact of lifestyle modification on their relationship.
机构信息
Neuroepidemiolgy Unit, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Vic., Australia.
Department of Psychiatry and Psychosocial Cancer Care, St Vincent's Hospital, Melbourne, Vic., Australia.
出版信息
Health Soc Care Community. 2019 Nov;27(6):1515-1524. doi: 10.1111/hsc.12822. Epub 2019 Aug 1.
Multiple sclerosis (MS) has a major impact on the relationship of couples living with the illness. Although some positives of dealing with MS as a couple have been identified, MS has been associated with higher rates of relationship breakdown and worse Quality of Life (QOL) for both people in the relationship, especially if the person with MS experiences a decline in mental or physical health or develops disability. Modification of lifestyle-related risk factors has been associated with improved outcomes for people with MS, including physical and mental health-related QOL, and these improved outcomes may lead to improved experiences for their partners. We aimed to explore the perspectives and experiences of the partners of people with MS, when the people with MS had undertaken an intensive residential workshop regarding healthy lifestyle, to understand the impact of MS and lifestyle modification on these partners' experiences of their relationship. Within the framework of Heidegger's interpretive phenomenology, semi-structured interviews were thematically analysed. Participants were in a spousal relationship with people with MS who had attended an intensive residential workshop regarding modification of lifestyle-related risk factors between 2002 and 2016. Participants lived in Australia, New Zealand, the United Kingdom and Europe. Three major themes were identified relating to the couple's relationships: providing support, remaining connected and togetherness. Aspects of these themes, not commonly previously reported, included the personal and relationship benefits experienced from providing support with lifestyle modification, improved communication, and the resultant greater sense of closeness. These experiences of partners of people with MS improve our understanding of both the complexities of living with MS and adopting lifestyle modification, and suggest some potential benefits to relationships.
多发性硬化症（MS）对与疾病共存的夫妻关系有重大影响。尽管已经确定了夫妻共同应对 MS 的一些积极方面，但 MS 与更高的关系破裂率以及关系中两个人的生活质量（QOL）下降有关，特别是如果患有 MS 的人经历心理健康或身体健康下降或残疾。与生活方式相关的风险因素的改变与 MS 患者的改善结果有关，包括身心健康相关的 QOL，这些改善的结果可能会改善他们伴侣的体验。我们旨在探讨多发性硬化症患者的伴侣的观点和经验，当这些患者参加了关于健康生活方式的强化住宅研讨会时，以了解多发性硬化症和生活方式改变对这些伴侣关系体验的影响。在海德格尔的解释现象学框架内，对半结构化访谈进行了主题分析。参与者与 2002 年至 2016 年间参加过关于生活方式相关风险因素改变的强化住宅研讨会的多发性硬化症患者处于夫妻关系中。参与者居住在澳大利亚、新西兰、英国和欧洲。与夫妻关系相关的三个主要主题被确定：提供支持、保持联系和团结。这些主题的一些方面，以前没有报告过，包括通过生活方式改变提供支持所带来的个人和关系利益、改善的沟通，以及由此产生的更紧密的联系感。这些多发性硬化症患者伴侣的体验提高了我们对与 MS 一起生活和采取生活方式改变的复杂性的理解，并暗示了对关系的一些潜在好处。
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