A new smartphone app is helping in the fight against one of the leading causes of death among young Indigenous people in remote communities.
Rheumatic heart disease (RHD) is 100% preventable but responsible for the deaths of Indigenous young people ranging in age from toddlers to adolescents.
Through her PhD research for Menzies School of Health Research, Dr Alice Mitchell spent time in remote communities gaining trust and finding that people knew little about the disease, its prevention and the ongoing treatment.
To give Indigenous people, particularly younger people, a better understanding of RHD, she developed the free “Take Heart” app, with support from Laynhapuy Homelands Aboriginal Corporation and Moonshine Agency.
“Once people know about the disease and the importance of treatment, they are very committed to the treatment,” Dr Mitchell said. “The ‘Take Heart’ app notifies users of their next injection date and sends reminder alerts.”
Recalling a case of an eight-year-old child she encountered when working as a nurse in Arnhem Land, Dr Mitchell said: “He stopped treatment thinking he was okay, he was only 20 when he died.
“Treatment is long-term and painful; it’s an injection every 21 to 28 days for 10 years. He didn’t like the treatment because it hurt. He stopped having his injections when he became a young adult because he didn’t know he still needed to and it was vital for his health.”
RHD is prevalent in remote communities throughout the NT with some of the highest rates recorded in the world. Repeated exposure to strep infection can lead to acute rheumatic fever, and subsequently, RHD. If untreated, the disease causes arrhythmia, stroke and heart failure. It is chronic, disabling and fatal if left untreated.
Dr Mitchell said an estimated one in 20 children had the disease in Maningrida alone.
“This is alarming. Many only know it as ‘that heart sickness’ and aren’t aware of the importance of treatment,” she said. “There is a lot of confusion; many don’t know when or why they need an injection, particularly for such a long time and so often.
“Children as young as four have died from RHD and the tragedy is it’s entirely preventable.
“All they know is that their heart is sick.”
Dr Mitchell graduates with a PhD at the Charles Darwin University ceremony on Friday, 12 October. Her thesis was entitled “That heart sickness: Exploring Aboriginal young people’s experiences of rheumatic fever care from childhood to adulthood”.
Source : Charles Darwin University