Health care equity and access for marginalised young people: a longitudinal qualitative study exploring health system navigation in Australia

BACKGROUND: Young people have unique social, emotional and developmental needs that require a welcoming and responsive health system, and policies that support their access to health care. Those who are socially or culturally marginalised may face additional challenges in navigating health care, contributing to health inequity. The aim of this study was to understand health system navigation, including the role of technology, for young people belonging to one or more marginalised groups, in order to inform youth health policy in New South Wales, Australia. METHODS: This qualitative longitudinal study involved 2–4 interviews each over 6 to 12 months with marginalised young people aged 12–24 years living in NSW. The analysis used Nvivo software and grounded theory. RESULTS: We interviewed 41 young people at baseline who were living in rural or remote areas, sexuality and/or gender diverse, refugee, homeless, and/or Aboriginal. A retention rate of over 85% was achieved. Nineteen belonged to more than one marginalised group allowing an exploration of intersectionality. General practitioners (family physicians) were the most commonly accessed service throughout the study period. Participants were ambivalent about their healthcare journeys. Qualitative analysis identified five themes: 1. Technology brings opportunities to understand, connect and engage with services. 2. Healthcare journeys are shaped by decisions weighing up convenience, engagement, effectiveness and affordability. 3. Marginalised young people perceive and experience multiple forms of discrimination leading to forgone care. 4. Multiple marginalisation makes health system navigation more challenging. 5. The impact of health system complexity and fragmentation may be mitigated by system knowledge and navigation support. CONCLUSIONS: The compounding effects of multiple discrimination and access barriers were experienced more strongly for young people belonging to mutiple marginalised groups. We identify several areas for improving clinical practice and policy. Integrating technology and social media into processes that facilitate access and navigation, providing respectful and welcoming services that recognise diversity, improving health literacy and involving professionals in advocacy and navigation support may help to address these issues. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12939-019-0941-2) contains supplementary material, which is available to authorized users.