Graduation Date

Fall 12-15-2017

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Programs

Nursing

First Advisor

Karen Schumacher, RN, PhD

Second Advisor

Marlene Z. Cohen, PhD, RN, FAAN

Third Advisor

Li-Wu Chen, PhD, MHSA

Abstract

Exploring PERCEPTIONS AND EXPERIENCES WITH RESOURCES AMONG RURAL Alzheimer’s Dementia Family Caregivers in the Midwest

Rita M. Million

University of Nebraska, 2017

Supervisor: Karen Schumacher, Ph.D., RN

Background. Despite vast amounts of research on informal caregiving in the Alzheimer’s dementia (AD) population, research on the experience and perceptions of rural caregivers is limited. A better understanding of rural caregivers’ knowledge, use, and nonuse of resources is essential to offset the impact of caregiving. Purpose. This study explored Alzheimer’s dementia family caregivers’ experiences and perceptions with resources in rural Midwest communities. Design. A descriptive qualitative approach with one-time semi-structured interviews was used. Setting. Recruitment took place in rural Nebraska and Iowa communities. Sample. Twenty-three family caregivers, with a mean age of 65 (SD=13.9), participated. Findings. Qualitative results included four broad themes: Perceptions of Rurality, Caregiving Experiences, Resources Used, and Perceptions of Resources. Caregivers’ experiences with resources were inseparably tied to their particular rural contexts and their experiences of caregiving. Five subthemes were found in Caregiving Experiences: relationship bonds, changes in family roles, care settings, care provided, and impacts on caregiver. These themes were not mutually exclusive. The Social Ecological Model guided the description of Resources Used that included six subthemes: self, family and friends, neighbors, community, healthcare system, and the Internet. Six subthemes were identified in the Perceptions of Resources theme: limited awareness, knowledge, need, value, fit, and accessibility. Care provided, resources used, and perceptions of resources were strongly related. Conclusions. Caregivers perceived things as resources that are not usually perceived as resources. Caregivers, who were able to, would drive long distances for services that met their individual needs. Those who did not have knowledge or accessibility to the individualized resources they perceived as needed would use substitutes that are not usually thought of as resources. Services provided to rural family caregivers need to be individualized for the caregivers. Programs and support groups cannot fully meet the needs of rural family caregivers as each has a unique experience in their role and, therefore, interventions have to fit their needs.

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