Becoming Experts: Life Changes, Adaptation, and Learning of Stroke Survivors’ Informal Caregivers

Background: Social and health trends (e.g., the aging population and growth of chronic diseases) place stroke and informal care as global concerns. After a stroke, most survivors return home relying primarily on informal caregivers, who ensure essential daily support. Although informal care’s adaptive and learning dimensions are evident, it has rarely been problematized. Understanding what and how learning processes emerge in the context of informal caregiving may be useful for the development of health, social, and educational strategies that support caregiving contexts.

Methods: This mixed methods’ study included informal caregivers of stroke survivors hospitalized between September 2018 and August 2019 in all Stroke Units of Northern Portugal. Structured questionnaires (n = 443) were filled in and analyzed through chi-square tests and logistic regression models. About 12–18 months later, semistructured interviews were carried out (n = 37), and a reflexive thematic analysis was performed.

Results: Adaptation to informal care is supported by learning processes that are driven by the impact that care assumes on caregivers’ lives, as shown in both quantitative and qualitative data. Qualitative findings supported that throughout the care trajectory learning is influenced by enablers and barriers, with practice and experience playing a central role. Learning needs and proposals to facilitate the learning and adaptation were generated.

Conclusion: Becoming an informal caregiver is a dynamic, impactful, and experiential learning-based process where individual and social spheres interact. Integrated health, social, and educational resources and services within proximity and people-centered logics can facilitate and improve the adaptation to this unexpected role, fostering caregivers’ wellbeing and ultimately improving care quality within communities.