Abstract
BACKGROUND: Incidence of stroke is increasing in sub-Saharan Africa. People who survive stroke experience disability and require long-term care. Health systems in South Africa (SA) are experiencing important challenges, and services in the public health system for people with stroke (PWS) are fragmented. We aimed to explore the perspectives and experiences of PWS related to stroke care services to inform health system strengthening measures. METHODS: In-depth interviews with 16 PWS in urban and rural areas in the Western and Eastern Cape Provinces of SA were conducted between August and October 2020. PWS were recruited through existing research networks, non-government organisations and organisations of persons with disabilities by snowball sampling. Interviews were transcribed, coded, and thematically analysed. We used the conceptual framework of access to health care as proposed by Levesque et al. to map and inform barriers to accessing health care from the user perspective. RESULTS: PWS recognised the need for health care when they experienced signs of acute stroke. Health literacy on determinants of stroke was low. Challenges to accessing stroke care include complex pathways to care, physical mobility related to stroke, long travel distances and limited transport options, waiting times and out of pocket expenses. The perceived quality of services was influenced by cultural beliefs, attitudinal barriers, and information challenges. Some PWS experienced excellent care and others particularly poor care. Positive staff attitude, perceived competence and trustworthiness went in hand with many technical and interpersonal deficits, such as long waiting times and poor staff attitude that resulted in poor satisfaction and reportedly poor outcomes for PWS. CONCLUSIONS: Strategic leadership, governance and better resources at multiple levels are required to address the unmet demands and needs for health care of PWS. Stroke care could be strengthened by service providers routinely providing information about prevention and symptoms of stroke, treatment, and services to patients and their social support network. The role of family members in continuity of care could be strengthened by raising awareness of existing resources and referral pathways, and facilitating connections within services.