“The Best,Most Difficult Thing I’ve Ever Done”: The Complex Experiences of Palliative and Hospice Familial Caregivers

Abstract

Introduction

Caring for chronically or terminally ill individuals comes with unique challenges and circumstances that are specific to each situation and individual involved. Studies on caregiving have often concentrated on the negative physical and emotional impacts on caregivers, while more recent literature depicts a more complex and multidimensional experience. The purpose of the current study was to better elucidate the scope of challenges and benefits attributed to caring for a loved one with a serious, life-limiting illness.

Methods

A total of 18 informal family caregivers were enrolled in this study, which used a semi-structured interview format. Interviews were conducted at the participants’ place of residence, all within New York State (United States of America). All interviews were audio-recorded, transcribed, and analyzed using inductive thematic analysis with consensual qualitative research components. The qualitative analysis team was comprised of three core members and one outside auditor.

Results

Four main themes emerged: (1) Burdens on the Caregiver, (2) Navigating Caregiving, (3) The Positives, and (4) Evolution of Relationships. Additionally, the latent theme of Cognitive Dissonance was identified across interviews.

Discussion

Findings suggest that family caregivers of individuals with terminal or life-limiting illness experience complex, and often contradictory feelings, which may differ from perceptions by those not providing similar care to a loved one. The data suggest that clinicians working with the caregiving population should explore the duality of caregiving beyond just the anticipated negative impacts.