ABSTRACT
Introduction
Rare disorders are not rare, collectively affecting around 300 million people worldwide. Rare disorders vary in aetiology, symptomology, and treatment, yet people living with them experience common challenges relating to diagnosis, information access, healthcare access, and support. This research explores the lived experiences of navigating networks of care for people living 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.
Methods
Eleven people living with rare disorders and four carers were recruited to participate in interviews through the Rare Disorders New Zealand Facebook page. Relational mapping interviews were used, with participants speaking about their networks of care, while also drawing maps to represent them. The analysis of these data was informed by interpretative phenomenological analysis.
Results
Participants described their roles in advocating for rare disorder care. People living with rare disorders often saw themselves as isolated and experiencing the brunt of their condition, while carers depicted the isolation as conjoint. Participants acknowledged that advocacy was a central element of their experiences but described it as a reluctant fight or a responsibility they had to take on, while also identifying the unique challenges of advocacy in the context of Aotearoa New Zealand.
Conclusion
This research has implications for rare disorder policy; strategies are suggested that could be implemented to improve rare disorder care, including increasing the information and support available to people living with rare disorders and their carers in Aotearoa New Zealand, to validate and strengthen their roles as advocates. It also lays a foundation for future research into rare disorder care experiences, highlighting the value of multi-method data collection approaches and the need for more research around areas of intersectionality.
Patient or Public Contribution
Rare Disorders New Zealand, the national representative body of people living with rare disorders and their families, supported this research, including its promotion through their social media channels. Participants could review and amend their data, and a Māori advisor was available to guide data analysis from Māori participants.