Navigating Empty Space: Experiences of Rare Disorder Care in Aotearoa

Despite their name, rare disorders are not rare, collectively affecting around 300,000 New Zealanders. Rare disorders vary in aetiology, symptomology and treatment, yet people living with them experience many of the same challenges relating to diagnosis, information access, healthcare access, and support. This research explores the lived experiences of navigating networks of care for people with rare disorders and their carers, and how people with rare disorders and their carers perceive the strengths, weaknesses, and opportunities for change within these networks. Prior research in this area, particularly in Aotearoa, is scant, meaning that it is difficult to clearly understand experiences of navigating rare disorder care and how they might be improved. Relational Mapping Interviews were undertaken with 11 people with rare disorders and four carers, who spoke about and drew maps representing their networks of care. The analysis of this data was informed by Interpretative Phenomenological Analysis and resulted in three main themes. The first of these explores how participants centred themselves within their networks of care by taking on the roles of advocates and experts, and the relation of this positioning to the concept of the Rare World. The second theme addresses how participants perceived sources of informal and formal support as existing within the Support Empty Space. Finally, the third theme discusses how, through Standing Back, participants viewed their experiences as situated within the Aotearoa healthcare system. Although the research sought to explore networks of care, findings suggest that people with rare disorders and their carers do not view their care as networked. This research has implications for rare disorder policy in Aotearoa and suggests strategies that could be implemented to strengthen the Rare World, make rare disorder information more accessible, encourage relationship-centred principles in rare disorder healthcare, and designate a place within the health system for rare disorders. Finally, it is hoped that this research paves the way for future research into the experiences of people with rare disorders and their carers in navigating healthcare and support.