Date of Award

1-2017

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

College/School

College of Education and Human Services

Department/Program

Counseling and Educational Leadership

Thesis Sponsor/Dissertation Chair/Project Chair

Harriet L. Glosoff

Committee Member

Kathryn Herr

Committee Member

Leslie Kooyman

Committee Member

Dana Heller Levitt

Subject(s)

Terminally ill parents--Home care, Terminally ill parents--Family relationships

Abstract

Caring for a terminally ill parent is a tremendous responsibility and a job for which most adult children are unprepared, especially if care is provided in the home. As the silver tsunami or the graying of America, fast approaches, many families will be faced with the tremendous responsibility of caring for a parent. Few researchers, however, have examined the experiences of adult children who have provided end-of-life (EOL) care in the home. Moreover, there is a paucity of research from the counseling profession that explores how individuals construct meaning after EOL caregiving experiences with their parents or how they make meaning after a loss. The purpose of this study, therefore, was to explore the experiences of and meanings made, if any, by adult children who have provided home-based end-of-life care for a terminally ill parent. In this qualitative interview study, I employed two rounds of interviews and one focus group interview to explore the experiences of adult children who had provided care to their parents in either their home or their parent’s home during the end stages of life. Data analysis revealed three overarching themes: unchartered territory, transitions of uncertainty, and multiplicity of meaning. Participants in this study assumed the role as primary caregiver, each encountering difficult journeys along the way. In fact, all participants reported high levels of distress, uncertainty, and emphasized the importance of having supports in place. Despite the difficulties encountered, participants also reported that caregiving was an unexpected gift. Findings suggest that counselor educators should prepare for the rise in family caregiving by bringing awareness to the counseling profession on the needs of future caregivers and advocate for coursework that educates counselors-in-training on caregiving, grief, and loss issues. Implications for counseling practices and directions for future research are further discussed in chapter five.

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