Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
School of Rehabilitation Therapy, Queen's University, Kingston, ON, Canada.
Int J Qual Stud Health Well-being. 2022 Dec;17(1):2135480. doi: 10.1080/17482631.2022.2135480.
Resilience research in family caregiving in chronic neurological conditions is growing, but multiple sclerosis (MS) caregivers are noticeably absent from this body of work. MS caregivers represent a unique population due to the disease's early onset, prolonged life expectancy, and heterogeneity. As such, this study aimed to explore MS caregivers' conceptualizations of resilience, examine MS caregivers' experiences of resilience development, and determine which assets and resources influence resilience in this role.
Twenty-four Canadian MS caregivers were recruited. Semi-structured in-depth interviews were conducted with questions derived from an ecological resilience framework. Data were analysed using reflexive thematic analysis.
Themes constructed a cyclical resilience model, beginning with encounters with hardship and extending to thriving adjustment. Subthemes included reports of additive challenges, impactful individual and community resources, and multi-level adaptive pathways. Within this cycle, the achievement of healthy adjustment exerted a positive feedback function and informed future responses to lifelong challenges.
Despite the salience of resilience processes within caregiver testimonies, inadequate resources at societal levels were evident. These findings afford researchers and decision-makers relevant information for designing and implementing resilience-building interventions for MS caregivers that attend to contextual factors and current systemic support deficiencies.
慢性神经系统疾病家庭护理中的韧性研究正在不断发展,但多发性硬化症(MS)护理人员明显缺席这一领域的研究。MS 护理人员是一个独特的群体,因为该疾病发病早、预期寿命长且具有异质性。因此,本研究旨在探讨 MS 护理人员对韧性的概念理解,考察 MS 护理人员韧性发展的经验,并确定哪些资产和资源会影响他们在该角色中的韧性。
招募了 24 名加拿大 MS 护理人员。采用源于生态韧性框架的半结构化深入访谈进行研究。使用反思性主题分析方法对数据进行分析。
构建了一个循环韧性模型,该模型始于遇到困难,延伸至蓬勃发展的调整。子主题包括报告的附加挑战、有影响力的个人和社区资源以及多层次的适应途径。在这个循环中,实现健康调整产生了积极的反馈作用,并为未来应对终身挑战提供了信息。
尽管护理人员的证词中明显存在韧性过程,但在社会层面上仍存在资源不足的问题。这些发现为研究人员和决策者提供了相关信息,以便为 MS 护理人员设计和实施韧性建设干预措施,这些措施可以关注到背景因素和当前系统支持的不足。