Date of Award

7-22-2026

Embargo Period

7-30-2026

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD) in Nursing Science

Department

Nursing

College

College of Nursing

First Advisor

Kathleen Lindell

Second Advisor

Shannon Phillips

Third Advisor

Katherine Sterba

Abstract

ABSTRACT Purpose Although extensive research examines family caregivers (FCs) across populations, less attention has been paid to how lack of choice in assuming the role affects quality of life (QOL) among FCs of adults with cancer. Understanding choice could guide interventions protecting this invaluable, often invisible workforce. Aims (1) Synthesize what is known about perceived choice among informal caregivers of adults with serious illness; (2) assess relationships between caregiving choice and caregiver QOL, burden, sleep, depression, stress, and social determinants of health; (3) describe experiences of FCs of adults with cancer providing care with no, little, or some choice. Design An integrative review guided by Pearlin's Stress Process Model identified a gap in oncology-specific caregiver choice. A cross-sectional quantitative study examined choice, QOL, stress, burden, sleep, and depression, conducted concurrently with a descriptive qualitative study using inductive-deductive hybrid thematic analysis based on Tsai's Theory of Caregiving Stress. Findings Choice was not associated with overall QOL but was associated with differences in caregiver stress and burden, suggesting choice is an important, understudied dimension of caregiving. Regardless of choice, Hispanic/Latino FCs reported poorer sleep and lower QOL than white FCs and were less represented in the high-choice group. Six qualitative themes emerged: role and responsibility burden, support systems and preparedness, degree of choice, physical function and health impact, emotional burden and psychological adaptation, and meaning making. Conclusion FCs often assume caregiving not by free choice but because circumstances leave no acceptable alternative. Even absent perceived choice, caregivers demonstrated resilience, adaptation, and meaning making. Recognizing how choice shapes caregiver well-being is essential to developing supportive interventions and acknowledging FCs as critical members of the oncology care team.

Rights

Copyright is held by the author. All rights reserved.

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