Locked inside: Living with uncertainty in self-management for endometriosis during the COVID-19 pandemic

OBJECTIVE: A high symptom burden systemic inflammatory disorder, endometriosis typically entails both medical management and self-management strategies. The COVID-19 pandemic in Australia precipitated changes to healthcare provision, societal restrictions, and negative psychosocial outcomes particularly for those managing chronic illnesses (e.g., endometriosis). This study's objective was to address the following questions: “How have endometriosis self-management strategies changed since the outbreak of COVID-19, and what are the consequences of these changes?” METHODS: In total, 21 respondents residing in Australia during the COVID-19 pandemic participated in a semi-structured interview following completion of an online survey advertised by Endometriosis Australia. In the survey, respondents provided demographic and clinical information, and psychological distress was assessed. Interviews were conducted online and recorded for transcribing. Transcribed data were thematically analyzed using the template method. RESULTS: Qualitative analysis identified five themes: i) Maintaining Relationships with Health Professionals, ii) Altered Information Seeking Strategies, iii) More Autonomous Decision Making, iv) Diminished Self-Care and Behaviour Change, and v) Shifted Priorities. Respondents reported disruptions to, and uncertainties within, the healthcare system that precipitated adverse effects upon their ability to manage endometriosis and mental health. CONCLUSIONS: These findings suggest that for many, COVID-19-related disruptions to the healthcare system and social isolation adversely impacted their endometriosis self-management. Targeted interventions are needed to address the consequences of these, including providing reliable information to support informed decision-making regarding endometriosis self-management, and assisting with mental health challenges arising from COVID-19-related social isolation.