Exploring the Support Networks of Caregivers of Persons Living with Stroke (PLWS)

Stroke is an unexpected acute event that disrupts the lives of persons living with stroke (PLWS) and their caregivers. In addition to the negative physical and mental health consequences of caregiving, caring for a PLWS can affect caregivers’ social lives and relationships. Caregivers of PLWS report social isolation, reduced participation in social activities, and strained relationships. Social support is an important function of relationships that can help caregivers manage the stresses of caregiving and improve well-being. Social networks are important to consider in the study of social support because the relationships within networks represent potential resources of social support. The aim of this integrated article dissertation was to examine how caregivers of PLWS navigate their social relationships and engage in exchanges of social support during caregiving. An ethnographic study guided by a constructivist research paradigm was conducted. Eight caregivers of PLWS participated in the study. Data were collected from January-December 2022. Data collection consisted of three semi-structured interviews, a contact diary, and a network mapping activity. Reflexive thematic analysis was used to analyze the interviews. The contact diaries were used to identify members of caregivers’ social networks. The network maps provided insight into participants’ perceptions of relationship closeness. The study findings focused on the caregiver-PLWS relationship and on exchanges of social support within caregivers’ social networks. Structural and functional changes to relationship between the caregiver and PLWS occurred. Structural changes included changes to the amount of time spent with the PLWS and changes in geographic proximity. Functional changes involved discovering new ways to maintain meaningful connection with the PLWS. Structural and functional changes had implications for feelings of closeness and connection within the relationship. Social network members were key sources of informational support for caregivers and helped compensate for a lack of healthcare system support. Caregivers supported others in their networks by sharing information about the PLWS and acting as a liaison between medical staff and family. Practical support, understanding from similar others, and companionship helped lessen the load of caregiving. The findings from this dissertation have implications for caregiver education and developing tailored supports for caregivers of PLWS.