Department of Psychology, Swansea University, Wales, UK.
Br J Health Psychol. 2021 May;26(2):464-481. doi: 10.1111/bjhp.12495. Epub 2020 Dec 19.
Notorious for its unpredictable nature, Multiple sclerosis (MS) can have a profound impact on all areas of a person's life, as well as the lives of their family. The aim of this qualitative study was to develop an in-depth understanding of the experiences of individuals living with MS and its impact upon the family system from the perspective of the person with M.
Qualitative data were collected through semi-structured interviews conducted with 14 people living with MS (pwMS). Interviews lasted for approx. 1 hr, were digitally recorded and transcribed verbatim. Anonymized data were then analysed using thematic analysis (Braun & Clarke, 2006, Qualitative Research in Psychology, 3, 77).
The themes identified within participant narratives reflected the turbulent emotions experienced by pwMS after diagnosis and the impact upon their family. Three key themes were identified with six subthemes. The central themes were feeling let down by health care, fears for the future, and finding a way forward. Fears about loss of autonomy and independence characterized the narratives that notably focussed upon impact on the self, despite the study emphasis. Discussions of suicide also featured.
The data demonstrate the psychosocial impact of living with MS as life-changing, encompassing traumatic losses and adaptation that was ongoing. The findings highlight the important role of health professionals and the dynamic impact of illness identity and engulfment. Opportunities to improve patient care by acknowledging the emotional impact of MS are discussed. Targeted and timely interventions to enhance psychological well-being, and areas for future research are considered.
多发性硬化症（MS）以其不可预测的性质而臭名昭著，它会对一个人的所有生活领域以及他们家人的生活产生深远的影响。本定性研究的目的是从患有 MS 的人的角度深入了解他们的个人经历以及 MS 对家庭系统的影响。
通过对 14 名患有 MS（pwMS）的人进行半结构化访谈，收集定性数据。访谈持续约 1 小时，以数字方式记录并逐字转录。然后使用主题分析（Braun & Clarke，2006，《心理学定性研究》，3，77）对匿名数据进行分析。
参与者叙述中的主题反映了 pwMS 诊断后经历的动荡情绪及其对家庭的影响。确定了三个核心主题，六个子主题。中心主题是对医疗保健的失望、对未来的担忧以及寻找前进的道路。对丧失自主权和独立性的担忧是特征，尽管研究重点是在自我影响上。也讨论了自杀问题。
数据表明，与 MS 一起生活具有重大的心理社会影响，包括改变生活的创伤性损失和持续的适应。研究结果强调了卫生专业人员的重要作用以及疾病认同和卷入的动态影响。讨论了通过承认 MS 的情绪影响来改善患者护理的机会。考虑了有针对性和及时的干预措施，以增强心理健康，并确定了未来研究的领域。
