Navigating rare disorder healthcare in Aotearoa New Zealand: an interpretative phenomenological analysis

Rare disorders collectively affect around 300 million people worldwide. They vary in aetiology, symptomology and treatment, yet people living with them experience many of the same diagnosis, information access, healthcare access, and support challenges. This research explores the lived experiences of navigating networks of care for people with rare disorders and their carers. Prior research in this area, particularly in Aotearoa New Zealand, 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, recruited through the Rare Disorders New Zealand Facebook page. Participants described their networks of care and drew maps to visually represent them. The analysis of this data was informed by Interpretative Phenomenological Analysis.

Participants described the support available to them in the healthcare system through four main themes: the Support Empty Space, caring care, begging and paying for care, and feeling left behind by the system. These themes highlight challenges navigating fragmented healthcare systems, leading to a disconnect between participants' experiences of healthcare systems and their engagement with individual healthcare professionals.

Our findings suggest a need for greater system accountability for rare disorders healthcare navigation, reinforcing existing rare disorders research insights. Encouraging relationship-centred principles in rare disorder healthcare delivery and designating a place within health systems for rare disorder management and support are two steps that may support improved navigation experiences. Such steps may also reduce reliance on luck as a mechanism to engage with knowledgeable clinicians and help ensure necessary access to support.