The Lived Experience of Narcolepsy in Australia: An Exploration of the Needs, Concerns, and Barriers to Care

Abstract

This thesis explored the needs, concerns, and barriers to care experienced by persons and their families/carers living with narcolepsy in Australia. It also aimed to explore how person-centric the healthcare system is in practice, using narcolepsy as the example, and determine what persons with narcolepsy and their families/carers perceive ‘well-managed’ narcolepsy to be.

This thesis contains four studies: A qualitative study involving a document analysis, a systematic review involving the quantitative analysis of psychometric properties of outcome measures, and two qualitative studies involving 1:1 semi-structured interviews.

Several key findings resulted from this thesis:

• There is substantial dissatisfaction with the healthcare system likely due to misalignment in care priorities between persons with narcolepsy, healthcare professionals, and the healthcare system

• Effective treatment is inaccessible for most persons living with narcolepsy

• Consumers have limited avenues to voice healthcare concerns or meaningfully contribute to healthcare policy development

• There is a lack of easily accessible information about narcolepsy, including its impact and the accommodations and services, in a format accessible to the public, workplaces, and schools

• There is a lack of quality, validated outcome measures used in narcolepsy

• Persons with narcolepsy experience substantial anticipated and self- stigma likely contributes to the high prevalence of depression and anxiety

The findings of this thesis imply the healthcare system does not appear to be person-centric when navigated by persons with narcolepsy. Little progress has been made towards addressing the needs and concerns of persons with narcolepsy, with some of the concerns identified in this thesis previously reported as early as 2001. Overall, it suggests a need for the proactive inclusion of persons with narcolepsy and their families and carers in healthcare policy and practice at all levels.