Abstract
BackgroundIn 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.AimTo 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.SettingThe Breede Valley subdistrict, Western Cape, South Africa, a rural, less resourced setting.MethodsA 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.FindingsA 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.ConclusionsWith 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.
Highlights
There is a paucity of information on the experiences and needs of caregivers in low- and middle-income countries, in settings where stroke survivors do not receive formal rehabilitation services
The situational analysis informing the design and development of the training programme included a concurrent quantitative study reporting on the outcomes of the current Home- and community-based care (HCBC) in the district[44] as well as this qualitative study
Of the 54 caregivers and stroke survivors invited, 1 stroke survivor and 6 caregivers could not attend because of illness, transport and personal reasons, whilst 3 of the 44 community health workers (CHWs) invited were unable to attend as a result of training commitments
Summary
In low- and middle-income countries, rehabilitation services are often unavailable or inaccessible, and stroke survivors are discharged home directly from acute care without any caregiver training,[6,10] highlighting the need for care models that explicitly incorporate caregivers. There is a paucity of information on the experiences and needs of caregivers in low- and middle-income countries, in settings where stroke survivors do not receive formal rehabilitation services. Formal rehabilitation services for stroke survivors were often absent. Stroke survivors were referred to community health workers (CHWs) who were untrained in rehabilitation
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