School of Rehabilitation Therapy, Queen's University, Kingston, ON, Canada.
School of Kinesiology and Health Studies, Queen's University, Kingston, ON, Canada.
Health Expect. 2018 Feb;21(1):181-191. doi: 10.1111/hex.12600. Epub 2017 Jul 19.
Physical activity (PA) is beneficial for all people, yet people affected by multiple sclerosis (MS) find regular PA challenging. These people may include individuals with the disease who have moderate-to-severe disability and their family caregivers. For researchers and clinicians to effectively promote PA among caregiver/care-recipient dyads with moderate-to-severe MS, a comprehensive understanding of the shared PA experiences of these dyads would be beneficial.
We explored shared experiences of caregiver/care-recipient dyads affected by moderate-to-severe MS about PA and directions for intervention.
Six focus groups with 23 people with moderate-to-severe MS and 12 family caregivers were conducted. Data were analysed using a constant comparative approach.
Three major themes emerged as follows: (i) PA is a continuum, (ii) cycle of disengagement and (iii) cycle of adjustment. The first theme captured the dyads understanding that PA falls along a continuum ranging from highly structured to unstructured activities. Cycle of disengagement captured the experiences of dyads engaging in little or no PA. These dyads perceived internal and external issues as drivers of the cycle of disengagement, while availability of supportive programmes and services or people helped the dyads to break out of the cycle. When the cycle of disengagement was broken, the dyads described moving towards the cycle of adjustment, where they were able to learn skills and take action to incorporate PA into daily routines.
This research highlights the need to adopt an integrative approach that acknowledges the caregiver/care-recipient dyad with moderate-to-severe MS as a focus for PA intervention.
身体活动（PA）对所有人都有益，但多发性硬化症（MS）患者发现定期进行 PA 具有挑战性。这些人可能包括患有中度至重度残疾的患者及其家庭照顾者。为了让研究人员和临床医生能够有效地促进中度至重度 MS 照顾者/被照顾者对 PA 的参与，全面了解这些对 PA 有共同体验的照顾者/被照顾者对 PA 的共同体验将是有益的。
我们探讨了受中度至重度 MS 影响的照顾者/被照顾者对 PA 的共同体验以及干预方向。
对 23 名患有中度至重度 MS 的患者和 12 名家庭照顾者进行了 6 次焦点小组讨论。使用恒定比较方法对数据进行分析。
出现了三个主要主题：（i）PA 是一个连续体，（ii）脱离循环，（iii）调整循环。第一个主题捕捉到了对 PA 沿着从高度结构化到非结构化活动的连续体的理解。脱离循环的循环捕捉到了对很少或没有 PA 的参与的体验。这些对认为内部和外部问题是脱离循环的驱动因素，而支持性计划和服务或人员的可用性帮助他们打破了循环。当脱离循环被打破时，对描述了他们如何向调整循环移动，在那里他们能够学习技能并采取行动将 PA 纳入日常生活中。
这项研究强调了需要采取一种综合方法，将中度至重度 MS 的照顾者/被照顾者视为 PA 干预的重点。
