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一项关于中重度多发性硬化症残疾患者及其家庭照顾者的身体活动支持需求的关注报告调查。

A concerns report survey of physical activity support needs of people with moderate-to-severe MS disability and family caregivers.

机构信息

School of Rehabilitation Therapy, Queen's University, Kingston, Canada.

School of Kinesiology and Health Studies, Queen's University, Kingston, Canada.

出版信息

Disabil Rehabil. 2019 Dec;41(24):2888-2899. doi: 10.1080/09638288.2018.1479781. Epub 2018 Jun 29.

DOI:10.1080/09638288.2018.1479781
PMID:29958014
Abstract

To identify the most pressing needs for community resources to support physical activity participation, determinants of perceived need, and barriers to co-participation in physical activity among people with multiple sclerosis (MS) who have moderate-to-severe disability and the family caregivers providing assistance to such individuals. Seventy-eight people with MS and 46 family caregivers participated in this cross-sectional survey study, guided by the Concerns Report Methodology. The results show differences between groups in rankings for some need items. However, three need items were prioritized by both people with MS and the family caregivers: (1) information about available resources to support physical activity participation, with Need Indexes of 76.6% and 52.3%, respectively; (2) programs that support joint participation of people with MS together with their caregivers in physical activity, with Need Indexes of 62.0% and 68.9%, respectively; and (3) programs that have affordable total cost of participation, with Need Indexes of 50.7% and 52.3%, respectively. A broad range of factors (i.e., education, living situation, type of community, marital status, employment, and income, as well as comorbidity status) was significantly associated with one or more of these need items. Several modifiable impairment-related, personal and logistical factors were identified by both groups as barriers to co-participation in physical activity. The findings highlight the complexity of developing community resources that target physical activity promotion in MS dyads. Importantly, our findings suggest that resources designed to influence dyadic physical activity participation need to include content that are responsive and tailored to both the needs of the person with MS and the unique needs of the family caregiver. The results also underscore the importance of reinforcing physical activity as a shared behavior and providing information about affordable options for exercising together to the benefit of each individual and the dyad (i.e., partnership). Overall, our findings provide a possible starting point to guide the identification of potential participants that might benefit the most from future intervention development work.Implications for rehabilitationMS has life-altering consequences for people with the disease and the family caregivers who support such individuals.Rehabilitation professionals need to reinforce physical activity as a shared behavior and provide information about affordable options for exercising together to the benefit of each individual and the dyad.A "one-size-fits-all" approach is not appropriate, therefore, clinicians need to identify flexible and pragmatic strategies to increase dyadic participation in the presence of unique caregiver and care-recipients barriers that might impede such an increase.

摘要

为了确定支持身体活动参与的社区资源的最紧迫需求、感知需求的决定因素以及多发性硬化症(MS)患者及其提供帮助的家庭照顾者共同参与身体活动的障碍,这些患者有中度至重度残疾。本横断面调查研究共有 78 名 MS 患者和 46 名家庭照顾者参加,研究由关切报告方法指导。结果表明,在一些需求项目的排名上,两组之间存在差异。然而,有三个需求项目同时被 MS 患者和家庭照顾者列为优先事项:(1)有关支持身体活动参与的现有资源的信息,需求指数分别为 76.6%和 52.3%;(2)支持 MS 患者及其照顾者共同参与身体活动的计划,需求指数分别为 62.0%和 68.9%;(3)负担得起的总参与成本的计划,需求指数分别为 50.7%和 52.3%。广泛的因素(即教育、生活状况、社区类型、婚姻状况、就业和收入以及合并症状况)与这些需求项目中的一个或多个显著相关。两组都确定了一些可改变的与损伤相关的、个人和后勤因素是共同参与身体活动的障碍。研究结果突出了为多发性硬化症患者开发针对身体活动促进的社区资源的复杂性。重要的是,我们的研究结果表明,旨在影响二元身体活动参与的资源需要包括针对 MS 患者和家庭照顾者的独特需求的内容。研究结果还强调了将身体活动作为共同行为强化的重要性,并为共同锻炼的负担得起的选择提供信息,以造福于每个个体和二元体(即伙伴关系)。总的来说,我们的研究结果为指导识别最有可能从未来干预发展工作中受益的潜在参与者提供了一个可能的起点。

康复意义多发性硬化症对患者及其支持他们的家庭照顾者的生活产生重大影响。康复专业人员需要将身体活动作为共同行为强化,并提供有关共同锻炼的负担得起的选择的信息,以造福于每个个体和二元体。“一刀切”的方法并不合适,因此,临床医生需要确定灵活和务实的策略,以增加二元体的参与,同时克服可能阻碍这种增加的独特照顾者和照顾接受者的障碍。

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