Nursing ETDs

Publication Date

Summer 8-1-2021

Abstract

The purpose of this study was to investigate the experiences and perceptions of persons living with narcolepsy from their perspective. An anonymous, online survey that included both open-ended and structured questions was administered to adults with narcolepsy with or without cataplexy (N = 72; 65 F) recruited through the auspices of the Narcolepsy Network (NN). A total of 69 participants responded to at least one open-ended question about experiences of diagnosis, treatment, and living with the condition. An Interpretive Description approach was used to analyze open ended responses. The major themes included serious medical issues (e.g., misdiagnosis and difficulties with medications and symptoms), threats to well-being, and emotional distress. Implications of the findings include needs for increased awareness of narcolepsy by health care professionals and the public, for adequate public and private insurance coverage for diagnosis and medications, and for reasonable accommodations in employment and education

Degree Name

Nursing

Level of Degree

Doctoral

Department Name

College of Nursing

First Committee Member (Chair)

Mark B Parshall, PhD, RN, FAAN, Chairperson

Second Committee Member

Mary C. Kapella, PhD, RN, FAAN, ATSF

Third Committee Member

Jennifer Averill, PhD, RN

Fourth Committee Member

Stephen H.A. Hernandez, PhD, RN

Keywords

Narcolepsy, Sleep Disorders

Language

English

Document Type

Dissertation

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