Surviving a stroke in South Africa: outcomes of home-based care in a low-resource rural setting.

Background: Little is known of stroke outcomes in low- and middle-income countries with limited formal stroke rehabilitation services and of homebased-stroke services delivered within the primary health care (PHC) context by community health workers (CHWs). Objectives: To describe and analyze the outcomes of patients with stroke from a rural PHC setting in the Western Cape, South Africa. Methods: In a longitudinal survey, 93 stroke patients, referred to home and community-based care services (HCBC) between June 2015 and December 2017, were assessed at baseline, one month and three months. Changes in function (Barthel Index (BI)), caregiver strain (Caregiver Strain Index (CSI)), impact of environmental factors and satisfaction with stroke care were measured. Results: HCBC was delayed, fragmented and brief (median session duration 20 minutes (IQR 15.0-30.0)). Although function improved significantly, dependence remained high: median BI score changed from 40.0 (IQR 15.0-70.0) to 62.5 (IQR 30.0-81.25) (p = .019). A third (33.0% (30/91)) of caregivers initially experienced strain and the median CSI score remained 3.0 (IQR 0.0-7.0) (p = .672). Overall, patient and caregiver satisfaction with HCBC was low with only 46.9% (31/66) of caregivers and 17.4% (12/69) of patients satisfied with all aspects of care. Only 47.6% of assistive product needs were met. Environmental factors negatively impacted on patient function and caregiving. Conclusions: Clinical practice pathways and referral guidelines should be developed for the HCBC platform. Specific training of CHWs, focusing on how to educate, support and train family caregivers, provide assistive devices and refer to health services is needed.