Exploring the Lived Experiences of Family Caregivers of Patients with Newly Diagnosed Stroke

Abstract

Stroke is a major cause of mortality and long-term disability and affects not only patients but also their families. Caring for a person with stroke creates a multidimensional and highly demanding experience for family caregivers. However, knowledge of caregivers' lived experiences remains limited, particularly within the cultural context and healthcare system of Iran. This study aimed to explore the lived experiences, challenges, and needs of family caregivers of patients with newly diagnosed stroke. This qualitative study used a descriptive phenomenological design. Participants were family caregivers of patients with newly diagnosed stroke who attended one of the hospitals affiliated with Iran University of Medical Sciences in Tehran Province during the first three months of 2025. Twelve primary family caregivers were selected through purposive sampling with maximum variation. Data were collected through in-depth semi-structured interviews and analyzed using Colaizzi's seven-step method. Lincoln and Guba's criteria of credibility, transferability, dependability, and confirmability were used to establish trustworthiness. Data analysis yielded six main themes: emotional burden of caregiving, caregiver burnout and strain, changes in individual and family life, caregivers' educational needs, support and supportive resources, and adaptation and hope. Despite substantial emotional, physical, and social challenges, caregivers gradually adapted by drawing on family support, support from the healthcare team, hope for recovery, and meaning-making in caregiving. Lack of specialized training and psychological support emerged as major barriers. Caring for a person with stroke is a multidimensional and dynamic process. Family caregivers require specialized education, psychological support, and supportive services to perform their caregiving role more effectively while protecting their own health and quality of life. These findings can provide a scientific basis for designing family-centered educational and supportive interventions tailored to caregivers' actual needs.