'If You Don't Fight for Yourself, No One Else Will': An In-Depth Interpretative Phenomenological Analysis of Rare Disorder Care Advocacy in Aotearoa New Zealand.
WHY IT MATTERS
This research directly documents the real-world barriers that rare disease patients face in accessing diagnosis and care in New Zealand, providing evidence that could help healthcare systems improve support for the estimated 300 million people worldwide living with rare disorders.
Researchers in New Zealand interviewed 15 people with rare diseases and their caregivers to understand what it's like to get diagnosed and treated. They found that patients often have to fight hard to get answers and support because doctors don't know much about rare diseases. The study shows that people with rare diseases face similar challenges, even though their specific conditions are very different.
'If You Don't Fight for Yourself, No One Else Will': An In-Depth Interpretative Phenomenological Analysis of Rare Disorder Care Advocacy in Aotearoa New Zealand. Abstract: 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. 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 inter Authors: Bennett et al. Journal: Health expectations : an international journal of public participation in health care and health policy MeSH: Humans, New Zealand, Rare Diseases, Male, Female, Patient Advocacy, Middle Aged, Caregivers, Adult, Qualitative Research