Department of Health Services Research and Policy, Australian National University, Acton, Australia.
Medical School, Australian National University, Acton, Australia.
Health Expect. 2022 Jun;25(3):803-822. doi: 10.1111/hex.13432. Epub 2022 Feb 4.
Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS.
Using the theoretical lens of personhood, we undertook a scoping review and meta-synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring.
Of 330 articles, 49 were included in the review. We identified five themes. One of these-seeking information and support-reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes-changing identities and adapting to life with a person with MS-point to the negotiation and reconstitution of personhood for both the person with MS and the people they live with.
People with MS are embedded in relational social networks of partners, family and friends, which are fundamental in the support of their personhood; the people who live with them are 'co-constituents of the patient's identity' assisting them to make sense of their world and self in times of disruption due to illness. Support services and health care professionals caring for people with MS are currently very much patient-centred; young people in particular report that their roles are elided in the health system's interaction with a parent with MS. There is a need to look beyond the person with MS and recognize the relational network of people who surround them and broaden their focus to encompass this network.
Our research team includes four members with MS and two members with lived experience of living or working with people with MS. A third person (not a team member) who lives with a partner with MS provided feedback on the paper.
多发性硬化症（MS）是一种慢性严重疾病，其病程和结果不确定。关于与 MS 患者共同生活的人的经历，相关文献相对较少。他们处于一个关怀的位置，涵盖了照顾（一种关系行为）和关心（一种道德立场，涉及公平、同情和正义）MS 患者。
我们使用人格理论的视角，对关于与 MS 患者共同生活的人的经历的定性文献进行了范围综述和元综合分析，重点关注关怀的性质和限制。
在 330 篇文章中，有 49 篇被纳入综述。我们确定了五个主题。其中一个主题——寻求信息和支持——反映了关怀的政治经济学。另外两个主题涉及关怀的道德领域：关怀作为劳动和生活在不确定性中。最后两个主题——改变身份和适应与 MS 患者一起的生活——指向 MS 患者和他们共同生活的人对人格的协商和重建。
MS 患者嵌入在伴侣、家庭和朋友的关系社交网络中，这些网络是支持他们人格的基础；与他们共同生活的人是“患者身份的共同构成者”，在疾病导致的混乱时期，帮助他们理解自己的世界和自我。目前，照顾 MS 患者的支持服务和医疗保健专业人员非常以患者为中心；特别是年轻人报告说，他们在卫生系统与患有 MS 的父母互动时，其角色被掩盖了。需要超越 MS 患者，认识到围绕他们的关系网络，并扩大他们的关注点以包含这个网络。
我们的研究团队包括四名 MS 患者和两名有与 MS 患者共同生活或工作经验的成员。第三名（非团队成员）与患有 MS 的伴侣共同生活的人对论文提供了反馈。
