Abstract
BACKGROUND: Globally, stroke remains one of the leading causes of long-term disability and death, with disproportionate burden in low and middle-income countries (LMICs). Stroke survivors in LMICs face several challenges and unmet care needs after hospital discharge due to limited healthcare infrastructure. Additionally, stroke survivors are discharged while unable to perform activities of daily living, leading to dependence on informal caregivers who are not trained in managing care at home. In Tanzania, where structured post-stroke support systems are limited, understanding stroke recovery journey and home care experiences is critical to inform more responsive stroke transitional care models. Therefore, the aim of this study was to explore the post-stroke recovery and home care challenges faced by survivors and their caregivers in Tanzania. METHODS: This qualitative study was conducted at a neurology clinic of a tertiary referral hospital in Dar es Salaam, Tanzania. Using a descriptive phenomenological approach, in-depth interviews were conducted with a purposive sample of unmatched 16 pairs of stroke survivors and caregivers. Data were analyzed thematically in Dedoose software using an inductive approach to capture patterns and meanings across participant narratives. The study was approved by the Institutional Review Board of Muhimbili University of Health and Allied Sciences (Ref. No. MUHAS-REC-04-2024-2139). RESULTS: Three major themes emerged: (1) post-stroke limitations and adjustments; (2) caregiving burden and coping strategies; and (3) home care challenges after stroke. Stroke survivors faced multiple post-stroke limitations which restricted their independence and slowed recovery. Caregivers, in turn, experienced considerable physical, emotional and financial burdens which were compounded by insufficient caregiving training. Home care was further complicated by minimal family support, poor home environment, financial constraints and adverse events. Despite these challenges, both survivors and caregivers demonstrated resilience by adopting coping strategies to navigate the demands of post-stroke recovery and home care needs. CONCLUSION: Although stroke survivors and their caregivers demonstrated remarkable resilience in the recovery journey, they continue to encounter complex home care challenges such as inadequate caregivers’ competence, poor home care environment, financial hardships and uncoordinated follow-up care which lead to adverse events. Bridging these gaps calls for comprehensive discharge planning, structured home-based follow-up, caregiver training and supportive national policies that ensure continuity of care. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12912-025-03929-6.