Background Despite known inequalities, little is understood about the burden and healthcare experiences of Aboriginal and Torres Strait Islander children who sustain a burn injury and their families.

Methods The Coolamon Study recruited parents and carers whose children (aged <16 years) were Aboriginal and / or Torres Strait Islander children and had presented to burn units across four Australian states, New South Wales (Sydney), Northern Territory (Darwin), Queensland (Brisbane, Townsville) and South Australia (Adelaide), between 2015 and 2018. Consent was obtained and carers completed baseline and subsequent interviews at 3, 6, 12 and 24 months. Data were collected on the injury event, patient care and safety, sociodemographic factors, health related quality of life (PedsQual), and psychological distress (Kessler K-5).

Results Of the 208 participants, 64 % were male; 26 % were aged less than 2 years and 37 % aged 2–4 years. The most common burn mechanisms were scalds (37 %), contact (33 %) and flame burns (21 %), with more severe burns and flame burns occurring in rural and remote settings. Most carers rated their child’s care as either excellent or very good (82 %). Family distress, measured by the K-5, lessened over the 24 months, however the changes were not statistically significant. While 77 % of carers reported that they received enough information, 18 % reported they would have liked more, and 3 % reported no information was provided before treatment. Parents described mixed access to information about the types of support available to them, such as accommodation, meals, travel or cultural support.

Conclusion Data from this cohort provide rich new information about risk factors and care received from point of injury through to rehabilitation for Aboriginal and Torres Strait Islander children with burns, providing unique insights into what is needed for appropriate, culturally safe care.