Electronic Thesis and Dissertation Repository

Thesis Format

Integrated Article

Degree

Doctor of Philosophy

Program

Health and Rehabilitation Sciences

Supervisor

McGrath, Colleen

2nd Supervisor

Hand, Carri L.

Co-Supervisor

Abstract

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.

Summary for Lay Audience

A stroke is a sudden and unexpected event that upsets the lives of persons living with stroke (PLWS) and their caregivers. Providing care to a PLWS can impact caregivers’ social lives and relationships. Caregivers of PLWS report interacting with fewer people, having less time for activities with other people, and experiencing relationship problems. Support from other people can help caregivers manage and cope with the stresses of caregiving. Looking at caregivers’ social networks and the relationships that caregivers have with other people is important because these relationships represent potential sources of help for caregivers. The purpose of this research was to study how caregivers of PLWS participate in their relationships with other people and get support from others during caregiving. Eight caregivers of PLWS were part of the research study. Interviews, a diary, and social network maps were used to collect data. Main themes were identified from the interviews. The diaries helped identify the people that were part of caregivers’ social networks. The network maps were used to see how close caregivers felt to the people in their social networks. The main findings focused on the relationship between the caregiver and PLWS and on the support caregivers received from others. Caregivers rearranged their schedules and routines to care for the PLWS. This change included spending more time than usual with the PLWS and changes in living arrangements. Caregivers also found new ways to feel connected to the PLWS by having honest conversations with each other and by focusing on the PLWS’ ability to participate in the relationship. Social network members were important sources of information and advice for caregivers, especially when information about stroke was not provided by healthcare staff. Caregivers supported other people by giving them updates on how the PLWS was doing and passing along information from medical staff to family. Practical support, talking with other people with similar caregiving experiences, and doing social activities with others helped caregivers manage and cope with their caregiving responsibilities. The research findings can be used to inform and develop caregiver education and support programs.

Creative Commons License

Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial 4.0 License

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