Figuring it out by yourself: Perceptions of home-based care of stroke survivors, family caregivers and community health workers in a low-resourced setting, South Africa

BACKGROUND: In less resourced settings, formal rehabilitation services for stroke survivors were often absent. Stroke survivors were referred to community health workers (CHWs) who were untrained in rehabilitation. AIM: To describe the experience and perceived needs of stroke survivors, their caregivers and CHWs in a context with limited access to and support from formal rehabilitation services. SETTING: The Breede Valley subdistrict, Western Cape, South Africa, a rural, less resourced setting. METHODS: A descriptive exploratory qualitative study. Four focus group interviews were held with purposively selected stroke survivors and caregivers and four with CHWs. A thematic approach and the framework method were used to analyse the transcripts. FINDINGS: A total of 41 CHWs, 21 caregivers and 26 stroke survivors participated. Four main themes and 11 sub-themes were identified. Because of the lack of knowledge, training and rehabilitation services, the main theme for all groups was having to ‘figure things out’ independently, with incontinence management being particularly challenging. Secondly was the need for emotional support for stroke survivors and caregivers. Thirdly, contextual factors such as architectural barriers and lack of assistive products negatively impacted care and function. Lastly, the organisation of health and rehabilitation services negatively impacted home-based services and professional support. CONCLUSIONS: With appropriate training, the CHWs can be pivotal in the training and support of family caregivers and stroke survivors. Care pathways and the role and scope of both CHWs and therapists in home-based stroke rehabilitation should be defined and restructured, including the links with formal services.