Division of Disability Studies, University of Cape Town, Cape Town, South Africa.
Centre for Rehabilitation Studies, University of Stellenbosch, Stellenbosch, South Africa.
J Appl Res Intellect Disabil. 2021 Mar;34(2):525-536. doi: 10.1111/jar.12818. Epub 2020 Oct 11.
Families struggle to support family members with profound intellectual and multiple disabilities (PIMD), especially in low resourced settings where formal services may not be available.
The adapted Family Community Participation survey, measuring perceptions of community participation, was administered to 67 primary caregivers of children with PIMD in Cape Town by community-based rehabilitation workers.
Families were most satisfied going to religious activities and getting together with family and friends. They were most dissatisfied with doing activities together in public and working or volunteering outside the home. Barriers to participation included negative attitudes, insufficient money and unavailability of community activities. Transportation, safety and security were additional challenges.
Participants advocate awareness raising, community support and provision of services to address barriers to community participation. Families should be consulted on community issues to integrate their specific family needs into the overall needs of the community.
家庭在支持患有严重智力和多重残疾（PIMD）的家庭成员方面举步维艰，尤其是在资源匮乏的环境中，可能无法获得正式服务。
通过社区康复工作者，向开普敦 67 名患有 PIMD 儿童的主要照顾者发放了经过改编的家庭-社区参与调查，以衡量他们对社区参与的看法。
家庭最满意的活动是参加宗教活动和与家人及朋友聚会。他们最不满意的是在公共场所一起活动和外出工作或做志愿者。参与的障碍包括负面态度、资金不足和缺乏社区活动。交通、安全和保障是额外的挑战。
参与者提倡提高认识、社区支持和提供服务，以解决参与社区的障碍。在解决社区问题时应咨询家庭，将他们的具体家庭需求纳入社区的整体需求中。
