Sleep disturbances in endometriosis : healthcare journeys and experiences in Aotearoa New Zealand : a thesis presented in partial fulfilment of the requirements for the Master's Degree of Arts in Psychology at Massey University, Albany, New Zealand

Abstract

Endometriosis is a chronic condition that affects 1 in 9 people in Aotearoa New Zealand. While its impact on pain and fertility is well-documented, sleep disturbances remain overlooked despite their notable prevalence and contribution to reduced quality of life, exacerbation of physical symptoms and mental distress. A recent Aotearoa New Zealand survey shows a desire among people living with endometriosis to prioritise treatment and symptom management strategies above research into causes or diagnostic imaging, yet no studies to date have investigated how this population manage symptoms such as sleep disturbances in an Aotearoa New Zealand context. To align with these patient-centred research priorities, this study aimed to evaluate current sleep experiences and sleep-related health decisions among those living with endometriosis in Aotearoa New Zealand. A sample of 374 adults living with endometriosis who had experienced sleep disturbances completed an anonymous mixed-methods online survey. Current sleep disturbances were assessed using the Patient Reported Outcome Measures Information System for Sleep Disturbance 8b short form (PROMIS-SD-8b), and quality of life was assessed using the Endometriosis Health Profile (EHP-5). Sleep-related health decisions, including access to healthcare (type, order, support received), satisfaction and perceived efficacy with healthcare, and self-management strategies were captured. Statistical analyses and development of a patient journey map were used to explore respondents’ current sleep health and healthcare decisions. Survey comments captured experiences of these journeys and were analysed using Reflexive Thematic Analysis. Findings indicate that sleep disturbances represent a significant burden to quality of life of individuals in this sample. Participants actively sought healthcare from multiple providers and sectors. Yet, satisfaction and perceived effectiveness varied, and were often accompanied by frustration. The healthcare encounter was an important aspect of the experience. Additionally, many participants relied on self-management strategies. The findings highlight unmet sleep-related needs and contribute to a broader iii understanding of the role of sleep-in endometriosis. This study also identifies potential gaps in healthcare for sleep concerns, the need for improved recognition of sleep concerns within healthcare settings, and further research into more e effective and comprehensive management strategies for sleep disturbances for people living with endometriosis in Aotearoa New Zealand.