Electronic Theses and Dissertations Archive

Date

2026

Document Type

Dissertation

Degree Name

Doctor of Philosophy

Department

Counseling Psychology

Committee Chair

Madeline Brodt

Committee Member

Owen Lightsey

Committee Member

Suzanne Lease

Abstract

The purpose of the phenomenological study was to better understand the lived experience of Cold-Agglutinin Disease (CAD) patients. Eleven white female participants who had moderate to severe symptoms of CAD were recruited via a CAD support group on Facebook and were prompted with a series of open-ended questions about their lived experience with CAD. Interview questions focused on how vital life domains (i.e., mental and physical health, family, community, and work) are impacted by CAD, how CAD patients experience the medical and mental health system, CAD patients’ perceptions of the medical healthcare they received, and their recommendations for how medical and mental healthcare providers can improve care. The interviews were coded and thematically analyzed to extrapolate nine overarching themes and multiple subthemes. The findings revealed that CAD patients commonly suffer from multiple physical health challenges that affect every aspect of their lives and negatively impact all other life domains that are necessary for psychological flourishing. Although grateful for the medical care they receive, CAD patients experience many of the common challenges faced by other rare disease patients regarding limited awareness and knowledge of their condition, medical stigma, medical gaslighting, and healthcare-related trauma, as well as a deficit in treatment guidelines, leading to ineffective treatment and a worsened health state. Finding a consistent and competent care team took time, energy, money, and self-advocacy on the part of the CAD patients, but generally they still described the care they received as poor. A total of eight recommendations to medical health providers and seven recommendations to mental health providers were identified from the experiences and suggestions of CAD patients.

Comments

Data is provided by the student.

Library Comment

Dissertation or thesis originally submitted to ProQuest/Clarivate.

Notes

Open Access

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