Mutch Kerry
Walton Centre NHS Foundation Trust, Fazakerley, Liverpool, United Kingdom.
Br J Nurs. 2010;19(4):214-9. doi: 10.12968/bjon.2010.19.4.46782.
BACKGROUND People are not expected to die from multiple sclerosis although, as the condition progresses over a period of time, some people become increasingly disabled and will require assistance with all activities of daily living. Their partners invariably carry out these tasks. OBJECTIVE To gain a deeper understanding of the experiences of the partner living with and caring for a spouse disabled by multiple sclerosis. METHODOLOGY In a qualitative study, eight partners who live and care for a person with multiple sclerosis were interviewed using a semi-structured questionnaire to explore their experience of their role. RESULTS The interview transcripts were analyzed using a thematic framework approach. Codes, themes and five categories were identified, which were worry, planning, frustrations, commitment to marriage and coping strategies. These categories were examined using quotes from the transcripts as evidence. CONCLUSION This qualitative study identified that these couples had been married for at least 20 years before disability of the spouse significantly affected their lifestyle. Partners felt obliged to continue in their caring role due to a sense of duty and commitment of marriage. Partners felt a sense of loss as they prioritized the health and needs of their spouse above their own and, finally, partners lost their identity as husband/wife as they were called 'the carer'. Partners felt out of control due to the unpredictable and progressive nature of MS and because it consumed their life 24 hours every day. Partners often felt guilty at not being satisfied with their life and wanting some independence.
人们一般不会死于多发性硬化症，不过，随着病情在一段时间内的发展，一些患者会逐渐出现残疾，日常生活的所有活动都需要他人协助。他们的伴侣总是承担起这些任务。目的：更深入地了解与因多发性硬化症而残疾的配偶共同生活并照顾其生活的伴侣的经历。方法：在一项定性研究中，对八位与患有多发性硬化症的人共同生活并照顾其生活的伴侣进行了访谈，采用半结构化问卷来探究他们对自身角色的体验。结果：使用主题框架法对访谈记录进行了分析。确定了编码、主题和五个类别，分别是担忧、规划、挫折、对婚姻的承诺和应对策略。通过引用访谈记录中的内容作为证据对这些类别进行了研究。结论：这项定性研究表明，这些夫妻在配偶残疾严重影响他们的生活方式之前已经结婚至少20年。由于责任感和对婚姻的承诺，伴侣们觉得有义务继续承担照顾的角色。伴侣们感到失落，因为他们将配偶的健康和需求置于自己的之上，最后，伴侣们失去了作为丈夫/妻子的身份，被称为“照顾者”。由于多发性硬化症的不可预测性和渐进性，且它每天24小时占据着他们的生活，伴侣们感到失去了掌控。伴侣们常常因对自己的生活不满意并渴望一些独立性而感到内疚。
