"I am fine now, why should I care?": Risk perception and communication gaps in post-stroke self-care in India.

Abstract

In low- and middle-income country settings, effective post-stroke self-care depends not only on medical management but also on how recurrence risk, long-term management, and rehabilitation are communicated within resource-constrained settings. This study explored how neurologists, stroke survivors, and caregivers conceptualize and negotiate post-stroke self-care, focusing on communication gaps, health literacy, and structural constraints influencing self-management practices. A qualitative study using an interpretive descriptive approach was conducted at a tertiary neurosciences center in Bengaluru, India. In-depth interviews were undertaken with 25 stroke survivors, 25 caregivers, and 3 neurologists (n = 53). Interview guides were informed by risk communication concepts, WHO Self-Care Framework and Taxonomy of Everyday Self-Management Strategies. Reflexive thematic analysis examined how post-stroke self-care, recurrence risk, and long-term preventive care were interpreted and negotiated within routine outpatient settings. Three interrelated themes emerged: divergent understandings of post-stroke self-care, communication gaps and contextual barriers, and enabling mechanisms for sustained self-management. Neurologists framed self-care primarily in biomedical terms, emphasizing medication adherence, risk-factor control, and follow-up monitoring. In contrast, survivors perceived recovery as symptom improvement and functional independence, leading to diminished perceived need for sustained preventive care. Divergences indicated gaps in recurrence-risk communication, reinforcement of long-term adherence, and integration of psychosocial counseling. Financial hardship, limited insurance coverage, and low health literacy constrained treatment and follow-up. Caregivers reported limited structured education and relied on informal or digital sources to supplement information. In resource-constrained settings, sustained post-stroke self-care depends not only on biomedical advice, but also on how recurrence risk, long-term adherence, and preventive responsibility are understood, reinforced, and negotiated during follow-up care. The findings support embedding structured risk communication, and caregiver-inclusive counseling within routine stroke follow-up. System-level strategies such as standardized discharge counseling protocols and task-sharing with trained support staff may strengthen continuity of care, and long-term outcomes in post-stroke self-care.