Social networks and exchanges of social support during stroke caregiving

The purpose of this study was to explore how caregivers of persons living with stroke (PLWS) navigate their social relationships and engage in exchanges of social support during caregiving. Ethnographic methods consisting of semi-structured interviews, a diary, and a network mapping activity were used. Interview data were analyzed using reflexive thematic analysis. Eight caregivers of PLWS participated in the study. Two main themes were generated. Social network members supported each other through information sharing. Caregivers supported others by sharing information about the PLWS and by acting as liaison between medical staff and family members. Some participants had to navigate conflict and strain within certain relationships during information sharing. Social network members were valuable sources of informational support for participants, which helped compensate for a lack of health care system support. The provision of social support helped lessen the load of caregiving by providing caregivers with space to focus on the PLWS, emotional support, and companionship and time away from caregiving responsibilities. The study identified beneficial forms of support for caregivers of PLWS. The findings have implications for caregiver education and support programs. Caring for a person living with stroke (PLWS) can affect how a caregiver interacts with the people in their social networkDifferent forms of social support from social network members can help lessen the load of caregiving through information sharing, practical assistance, empathy, and companionshipRehabilitation professionals working with caregivers of PLWS should inquire about caregivers’ social networks and availability of social support to help identify caregivers at risk of low support Caring for a person living with stroke (PLWS) can affect how a caregiver interacts with the people in their social network Different forms of social support from social network members can help lessen the load of caregiving through information sharing, practical assistance, empathy, and companionship Rehabilitation professionals working with caregivers of PLWS should inquire about caregivers’ social networks and availability of social support to help identify caregivers at risk of low support