Neuroepidemiology Unit, Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Parkville 3010, Australia.
Department of Psychiatry and Psychosocial Cancer Care, St Vincent's Hospital Melbourne, Fitzroy 3065, Australia.
Int J Environ Res Public Health. 2020 Dec 24;18(1):85. doi: 10.3390/ijerph18010085.
People with multiple sclerosis (PwMS) often experience uncertainty and fear about their futures. Partners of PwMS may share their concerns and experience fears about their own futures, limitations on their lives, ability to work, and becoming a carer. For PwMS, modification of lifestyle-related risk factors has been associated with improved health outcomes. For PwMS who attended residential lifestyle modification workshops (RLMW), sustained improved health outcomes have been demonstrated. Whether improved outcomes for PwMS who engage with lifestyle modification translate to improved partner perceptions of the future, is yet to be explored. We explored the perspectives of partners of PwMS who had attended a RLMW and the impact that the person with MS's illness and their engagement with lifestyle modification had on their partners' views of the future. Analysis of 21 semi-structured interviews used a methodology informed by Heidegger's Interpretive Phenomenology. Three themes emerged: 'uncertainty', 'planning for the future' and 'control, empowerment and confidence'. Subthemes included MS and lifestyle modification being a catalyst for positive change; developing a sense of control and empowerment; and hope, optimism and positivity. Lifestyle modification may provide benefits, not only to PwMS, but also to their partners, and should be considered part of mainstream management of MS.
多发性硬化症患者（PwMS）常常对未来感到不确定和恐惧。PwMS 的伴侣可能会与他们共同担忧，并对自己的未来、生活的限制、工作能力和成为照顾者感到恐惧。对于 PwMS 来说，改变与生活方式相关的风险因素与改善健康结果有关。对于参加过居住生活方式改变工作坊（RLMW）的 PwMS，已经证明了持续改善的健康结果。然而，参与生活方式改变的 PwMS 的改善结果是否会转化为伴侣对未来的看法的改善，仍有待探讨。我们探讨了参加 RLMW 的 PwMS 伴侣的观点，以及 MS 疾病和他们参与生活方式改变对伴侣对未来看法的影响。对 21 次半结构化访谈的分析采用了受海德格尔解释现象学启发的方法。出现了三个主题：“不确定性”、“规划未来”和“控制、赋权和信心”。子主题包括 MS 和生活方式改变是积极变化的催化剂；培养控制感和赋权感；以及希望、乐观和积极性。生活方式的改变不仅可能对 PwMS 有益，而且可能对他们的伴侣有益，因此应被视为 MS 主流管理的一部分。
