Understanding burn injuries in Aboriginal and Torres Strait Islander children: protocol for a prospective cohort study

Introduction Although Aboriginal and Torres Strait Islander children in Australia have higher risk of burns compared with non-Aboriginal children, their access to burn care, particularly postdischarge care, is poorly understood, including the impact of care on functional outcomes. The objective of this study is to describe the burden of burns, access to care and functional outcomes in Aboriginal and Torres Strait Islander children in Australia, and develop appropriate models of care. Methods and analysis All Aboriginal and Torres Strait Islander children aged under 16 years of age (and their families) presenting with a burn to a tertiary paediatric burn unit in 4 Australian States (New South Wales (NSW), Queensland, Northern Territory (NT), South Australia (SA)) will be invited to participate. Participants and carers will complete a baseline questionnaire; follow-ups will be completed at 3, 6, 12 and 24 months. Data collected will include sociodemographic information; out of pocket costs; functional outcome; and measures of pain, itch and scarring. Health-related quality of life will be measured using the PedsQL, and impact of injury using the family impact scale. Clinical data and treatment will also be recorded. Around 225 participants will be recruited allowing complete data on around 130 children. Qualitative data collected by in-depth interviews with families, healthcare providers and policymakers will explore the impact of burn injury and outcomes on family life, needs of patients and barriers to healthcare; interviews with families will be conducted by experienced Aboriginal research staff using Indigenous methodologies. Health systems mapping will describe the provision of care. Ethics and dissemination The study has been approved by ethics committees in NSW, SA, NT and Queensland. Study results will be distributed to community members by study newsletters, meetings and via the website; to policymakers and clinicians via policy fora, presentations and publication in peer-reviewed journals.

[1]  R. Lyons,et al.  Guidelines for the conduction of follow-up studies measuring injury-related disability. , 2007, The Journal of trauma.

[2]  James A. Holstein,et al.  From the Individual Interview to the Interview Society , 2001 .

[3]  J. Wasiak,et al.  A systematic review of the quality of burn scar rating scales for clinical and research use. , 2012, Burns : journal of the International Society for Burn Injuries.

[4]  E. Charles,et al.  The cost of burn care and implications for the future on quality of care. , 1986, The Journal of trauma.

[5]  C. Ryan,et al.  Long-term outcome of children surviving massive burns. , 2000, JAMA.

[6]  James E Harrison,et al.  Hospital separations due to injury and poisoning, Australia 2008-09 , 2008 .

[7]  J. Wasiak,et al.  The epidemiology of burn injuries in an Australian setting, 2000-2006. , 2009, Burns : journal of the International Society for Burn Injuries.

[8]  H. Martin,et al.  Medical management of paediatric burn injuries: Best practice , 2012, Journal of paediatrics and child health.

[9]  Karen L. Martin,et al.  Ways of knowing, being and doing: A theoretical framework and methods for indigenous and indigenist re‐search , 2003 .

[10]  S. Zubrick,et al.  The Western Australian Aboriginal Child Health Survey: The Health of Aboriginal Children and Young People , 2004 .

[11]  P. Maitz,et al.  The true cost of burn. , 2012, Burns : journal of the International Society for Burn Injuries.

[12]  D. Hendrie The cost of injury in Western Australia during 2003: an overview of total and health system costs , 2005 .

[13]  B. Gabbe,et al.  Functional and health-related quality of life outcomes after pediatric trauma. , 2011, The Journal of trauma.

[14]  D. Foley Decolonising Methodologies Research and Indigenous Peoples , Linda Tuhiwai Smith, Published by Zed Books Ltd., London and New York and University of Otago Press, Dunedin, 1999 , 2000 .

[15]  G. Martin,et al.  Psychosocial Functioning Differences in Pediatric Burn Survivors Compared With Healthy Norms , 2013, Journal of burn care & research : official publication of the American Burn Association.

[16]  W. Dickson,et al.  Burn care costing: the Welsh experience. , 2009, Burns : journal of the International Society for Burn Injuries.

[17]  Tom Carney Fourth Generation Evaluation , 1991 .

[18]  D. Scrimgeour,et al.  for Aboriginal and Torres Strait Islander People Living in Urban Areas , and Related Research Issues : A Review of the Literature , 2008 .

[19]  S. Hemsley,et al.  Measuring the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples , 2009 .

[20]  José Luis Alfonso Sánchez,et al.  Socio-economic cost and health-related quality of life of burn victims in Spain. , 2008, Burns.

[21]  V. Minichiello,et al.  In-depth Interviewing: Principles, Techniques, Analysis , 2008 .

[22]  J. Kenardy,et al.  Prevalence, comorbidity and course of trauma reactions in young burn-injured children. , 2012, Journal of child psychology and psychiatry, and allied disciplines.

[23]  L. Kazis,et al.  The effect of family characteristics on the recovery of burn injuries in children , 2012, The journal of trauma and acute care surgery.

[24]  L. Kazis,et al.  The American Burn Association/Shriners Hospitals for Children Burn Outcomes Program: A progress report at 15 years , 2012, The journal of trauma and acute care surgery.

[25]  J. Glover,et al.  Managing two worlds together: stage 2 — patient journey mapping tools , 2012 .