The Neglected Care Burden and Unmet Needs of Informal Caregivers of Stroke Survivors. A Qualitative Study

BACKGROUND: Caregivers of stroke survivors often face challenges due to the complex nature of caregiving responsibilities and the lack of adequate support systems. Understanding their burden of care and experiences with healthcare professionals is crucial for improving caregiver well-being and patient outcomes. PURPOSE: Was to identify unmet needs for support among caregivers of stroke survivors by exploring their burden of care and experiences of collaboration and support provided by health professionals. METHOD: Qualitative semi-structured interviews were conducted with informal caregivers of stroke survivors. Participants were recruited from a university hospital, among caregivers of patients discharged after a moderate to severe stroke (modified Rankin Scale score 3-5). Thematic analysis was conducted to identify recurring patterns and themes within the data. RESULTS: Fifteen participants were interviewed, and three interconnected themes were constructed from the data: "New roles and a new life," "conflicting expectations," and "unmet needs for information and advice." Caregivers described the burden of assuming multiple responsibilities, navigating expectations, and adapting their home and life to accommodate the needs of the stroke survivor. Further, they expressed dissatisfaction with the support and information provided by healthcare professionals, highlighting unmet needs for clearer communication, follow-up and guidance. CONCLUSION: Caregivers of stroke survivors experience a significant burden. The findings show poor communication, care continuity, and information to support caregivers. Meeting those needs may reduce caregiver burden and enhance their experience with the healthcare system. This highlights the need for more stroke-specific education and targeted research on effective interventions.