Date of Award

Summer 8-23-2025

Document Type

Dissertation

Degree Name

Ph.D. in Counseling Psychology

Organizational Unit

Morgridge College of Education, Counseling Psychology

First Advisor

Trisha L. Raque,

Second Advisor

Lisa M. Brownstone

Third Advisor

Bruce P. Uhrmacher

Copyright Statement / License for Reuse

All Rights Reserved
All Rights Reserved.

Keywords

Affirming care, Caregiver, Home, Hospice, Sexual minority

Abstract

Lesbian, gay, and bisexual (LGB) individuals face disproportionate barriers in healthcare across the lifespan that persist and often intensify at the end of life. Despite hospice’s mission to provide comfort, dignity, and patient-centered support, it remains unclear whether these services equitably meet the needs of sexual minority patients. Seeking hospice care presents a unique conundrum for many LGB individuals: it necessitates inviting representatives of a historically exclusionary healthcare system into the privacy of their homes - spaces that often serve as sanctuaries of identity, safety, and autonomy. The already vulnerable experience of seeking care in one’s final days can be intensified as the comfort of home is balanced against the risk of judgment, invalidation, or harm.

Existing literature of the LGB experience in hospice focuses largely on the anticipated needs of sexual minority adults or relies on practitioner assumptions, leaving a critical gap in understanding the lived realities of those who have actually navigated hospice. This study addresses that gap by centering the voices of caregivers, the spouses or partners who provided care to LGB individuals enrolled in hospice. Grounded in minority stress theory and intersectionality, and contextualized by preeminent models of grief, this study employed an interpretative phenomenological analysis framework to explore how hospice care interacts with identity, home, and loss. Six participants, all of whom identified as LGB and had served as the primary caregiver for their partner within the past seven years, were recruited through national channels and interviewed in-depth about their experiences. Findings reveal that hospice interactions can be shaped by providers’ cultural responsiveness, or lack thereof. Themes emerged around the sanctity of home as a space of affirmation, the impacts of involving outsiders in the end of life, and the healing, harm, or missed opportunities by hospice staff. Caregivers highlighted both meaningful affirmations and critical gaps in care, underscoring the emotional labor of advocating for dignity in a highly stressful time. This study amplifies marginalized caregiver perspectives and suggests areas for focus in hospice training, policy, and practice. By illuminating the specific needs of LGB patients and their loved ones, it offers a reference for truly inclusive and affirming end-of-life care.

Copyright Date

8-2025

Publication Statement

Copyright is held by the author. User is responsible for all copyright compliance.

Rights Holder

Catherine H. Bianchi

Provenance

Received from ProQuest

File Format

application/pdf

Language

English (eng)

Extent

135 pgs

File Size

1.4 MB

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