When it comes to Closing the Gap on health inequities experienced by Aboriginal and Torres Strait Islander people there are many areas deserving urgent attention, and injury prevention is just one. But where injury has already occurred, Aboriginal and Torres Strait Islander people face yet another obstacle in then accessing treatment, often due to prohibitive out-of-pocket healthcare costs. As a concerning new report shows, this is certainly the case for Aboriginal and Torres Strait Islander families caring for children with acute burn injuries.
Internationally, an estimated 100 million people are forced below the poverty line from healthcare spending. In Australia, families in low-income brackets are the most vulnerable for debilitating health expenditure and the resulting financial hardship.
A nine-year analysis of Australian children hospitalised for burns found Aboriginal and Torres Strait Islander children were admitted three times as frequently as non-Indigenous children and spent five times longer in hospital. Burns incidence and severity is just another example of health inequity for Aboriginal children, and the financial impact on their families can be catastrophic.
According to the study – conducted by Flinders University in conjunction with The George Institute for Global Health and UNSW School of Population Health – Aboriginal and Torres Strait Islander children represented 10.4% of burns admissions and suffered more flame burns, more total body burns, and had a four times higher risk for contracting bacterial infections than other children.
Lead author of the study, Flinders University’s Dr Courtney Ryder, said of the 6,980 children admitted for an acute burns injury during the study period (October 2009 – July 2018), 723 identified as Aboriginal and/or Torres Strait Islander.
Dr Ryder has now co-authored a follow-up study, just published in the Australian and New Zealand Journal of Public Health, which seeks to understand the impact of out-of-pocket-healthcare expenses on Aboriginal families of children who have suffered acute burn injuries.
All data collected and analysed through this qualitative study was by Aboriginal researchers, and involved ‘yarning sessions’ (a conversational research method for data collection) conducted across South Australia, NSW and Queensland.
The sample size was purposely small to facilitate building strong, supportive relationships and a safe environment that would generate rich data collection during yarning.
The range of out-of-pocket health expenses identified included: costs (transport, pain medication, bandages); loss (employment capacity, social and community); and support (family, service support).
During hospitalisation, participants reported costs from travel, parking and food. The reporting of limited access to affordable foods was common and participants spent hundreds of dollars in hospital cafeterias each week, as they felt obligated to stay on the burns ward or in intensive care with their child.
When we went it cost us a fortune in meals…and you want to eat close because you didn’t want to go anywhere.
Having family bring in food or skipping meals were reported as alternatives to reduce costs while in hospital.
Instead of having three meals, I would only have two.
Participants living in rural areas reported major expenses for follow-up treatment. It was not uncommon for these households to travel more than five hours for treatment. This created financial strain for these participants.
Every time we go, we would have to make sure you would have at least $700 just like for petrol, the food, everything.
Household income and employment capacity were affected for participants, especially those who were self-employed or ran family businesses.
I missed, what, six to eight – no ten – I had ten months off all up.
Participants did report feeling supported by workplaces to meet their treatment and the care needs of their child.
Well, we are quite, both quite lucky…both works have been totally flexible.
Social and community
Social and family activities were impacted. Going without household items, not participating in community events and cancelling holidays were all actions taken to alleviate costs and meet the care requirements.
We didn’t have our holiday that we planned…luckily, they refunded us the money.
Participants living away from family networks or their community reported feeling isolated and restricted in the types of support they could access. This created additional burden and cost through juggling family life and treatment.
Family support was a major protective element in decreasing financial stress for families. Participants approached extended family members for support to get by.
Ask family members for, you know, a hand with some money until the next pay day…for your food and electricity bills.
Participants often commented on the significant financial role family networks played in keeping them away from poverty.
I had my family to help me out. If I didn’t, I would have to sell stuff.
Others reported support being one-sided, or not feeling comfortable talking to, or approaching family networks for financial support.
I know if I needed money, I could get money off any of my brothers and sisters…but yeah, it’s like that they are all in the same boat as me. They are working to get by as well…I would rather suffer, and not everybody else.
Tangible support not related to family networks was identified. Some participants reported hospital social workers arranging fuel and cafeteria vouchers.
I once got a $100 one (fuel voucher) and that one lasted about a week and a half.
Others commented on a lack of support at the hospital.
I didn’t see a social worker or anything. Like I didn’t see anyone.
Participants who lived rurally were most impacted financially due to greater travel and scheduling requirements to attend follow-up treatment.
The research indicated that eligible Aboriginal families were not informed of, and subsequently did not access, government travel support initiatives. Reasons for not informing patients include health professionals and administration staff not comprehending the extent of the out-of-pocket health expenditure, or being unaware of government-funded travel support schemes.
Participants experienced significant stress and anxiety over whether they would be able to keep up with household bills and meet their injured child’s care needs.
In all cases, the child’s health was a priority, but this often came at an expense to families who were paying bills late, selling personal items, accessing savings, reaching credit card limits, or asking family for help. All these actions indicated financial stress.
This work has produced rich contextual data and the study’s findings have been used to modify and psychometrically assess out-of-pocket healthcare expenditure for Aboriginal families.
Future studies in this area need to consider out-of-pocket healthcare expenditure across a range of conditions, as well as the specific cultural and social nuances for Aboriginal families when developing tools appropriate to support Aboriginal and Torres Strait Islander communities.
The article ‘Yarning up about out-of-pocket healthcare expenditure in burns with Aboriginal families’ was co-authored for the Australian and New Zealand Journal of Public Health by Courtney Ryder, Tamara Mackean, Kate Hunter, Julieann Coombes, Andrew Holland and Rebecca Ivers.