Date of Award

2022

Embargo Period

7-24-2022

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

College

College of Nursing

First Advisor

Susan D. Newman

Second Advisor

Gayenell S. Magwood

Third Advisor

Martina Mueller

Fourth Advisor

Barbara J. Lutz

Abstract

Purpose: The purpose of this dissertation was to explore the unmet needs of working age (18-64) caregivers of stroke survivors and their quality of Life (QoL). First, a scoping review of peer support interventions for caregivers of individuals with cognitive impairment, including stroke, was conducted through the lens of the Social Ecological Model (SEM) Next, an integrative review was conducted to examine stroke caregiver’s QoL utilizing the model of QoL for family caregivers of stroke survivors. Finally, the needs and concerns of working age caregivers of stroke survivors and the factors affecting their QoL were explored through a cross-sectional descriptive study framed with the model of QoL for family caregivers of stroke survivors. Problem: Informal caregivers are an integral part of maintaining quality of life (QoL) for stroke survivors. However, this often comes at the expense of their own QoL. Working age (18-64) caregivers are at an increased risk for decreased QoL due to the many other responsibilities they have in addition to the role of caregiver. Peer support interventions could be one strategy to increase QoL in informal caregivers of stroke survivors, though research on the needs and concerns of working age caregivers of stroke survivors, their QoL, and peer support interventions for this population is limited. The specific aims of this dissertation were: Aim 1: To investigate peer support interventions for informal caregivers via a scoping review Aim 2: To examine the QoL of informal caregivers of stroke survivors through an integrative review Aim 3: To characterize unmet needs and concerns, caregiver self-efficacy, social support, and quality of life of working age caregivers of stroke survivors through a cross-sectional descriptive online survey using validated measures Design: A cross-sectional descriptive study design, informed by the model of QoL for informal caregivers of stroke survivors, guided quantitative data collection. Findings: In the scoping review, twenty-nine articles representing twenty-five studies were included in the analysis. Twenty-four of the studies noted statistically significant improvements in outcomes including an increase in caregiver self-efficacy, health, and QoL as well as knowledge, social support, and community integration. The integrative review examined sixty-one articles representing fifty-one studies. The review confirmed the stability of the model of QoL for informal caregivers of stroke survivors and identified additional factors that influence caregiver QoL including stroke survivor characteristics, time spent in daily care, duration of care, coping styles, and training. In the cross-sectional descriptive study, there were many needs and concerns identified in working age caregivers of stroke survivors. There were also statistically significant relationships found between these needs and concerns and stroke survivor functional status, caregiver strain, caregiver self-efficacy, and caregiver QoL. Relationships were also statistically significant between caregiver QoL and several factors identified in the model of QoL for family caregivers of stroke survivors. Conclusion: Working age caregivers of stroke survivors had unmet needs and concerns as well as many factors that put them at risk for decreased QoL. Peer support interventions have shown benefit for informal caregivers of persons with cognitive impairment (CI) and future studies could evaluate the effectiveness of peer support for working age caregivers of stroke survivors. Future studies with a strong theoretical framework such as that provided by the updated model of QoL for informal caregivers of stroke survivors should be conducted to further explore how unmet needs can be met and how they predict working age caregiver QoL. Caregiver needs and concerns should also be explored through the lens of sociodemographic factors such as duration of care, gender, and race.

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