First Advisor

Amanda Chiapa

Date of Award

Spring 6-2026

Document Type

Thesis

Degree Name

Bachelor of Science (B.S.) in Psychology and University Honors

Department

Psychology

Language

English

Subjects

caregiver mental health, bereaved parents, anticipatory grief, medically complex children, pediatric rare disease, pediatric caregiver grief

DOI

10.15760/honors.1867

Abstract

Approximately one in four households in the United States cares for a child with special healthcare needs, yet the mental health of the caregivers providing that care is rarely addressed by the medical, faith, community, and social systems around them. This thesis examines the systemic gaps in mental health support for caregivers of children with life-limiting or medically complex diagnoses through a review of existing literature and an original mixed-method survey of 58 caregivers. Findings indicate that 50% of caregivers received no mental health support from their child's medical team at any point. Every respondent reported at least one clinically significant mental health symptom since their child's diagnosis, and support across all systems averaged at or below neutral.

This thesis argues that the current response to caregiver suffering is inadequate and proposes integrated, longitudinal, and accessible support models—including grief literacy training, peer-to-peer programs, and parent-informed support development—that support caregivers from diagnosis through bereavement and beyond.

Persistent Identifier

https://archives.pdx.edu/ds/psu/44801

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