Aim: Approximately 8% of Aboriginal and Torres Strait Islander people identify as caregivers, including those caring for older people. There is scant information about this group’s health and wellbeing. The Strong Carers Strong Communities Study aimed to determine the optimum method to facilitate and empower caregivers to improve their health and wellbeing.
Material and methods: The study has concluded in two remotely located Aboriginal communities. One community participated in six health information (HI) sessions and received regular services. The other engaged in a community based participatory action research (CBPAR) process, to identify and address issues raised by community caregivers. Quantitative data (Growth Empowerment Measure, Kimberley Indigenous Cognitive Assessment (KICA) depression scale, caregiver stress) was collected at baseline and 18 months. Qualitative data (interviews, observations, field notes) was collected throughout.
Results: Twenty caregivers completed the baseline survey in the HI community and 42 in the CBPAR community. Three quarters of caregivers are women and the average age of caregivers is 42 years, with 93 per cent having attended formal schooling. Of those being cared for, three quarters are women and 83 per cent are aged over 60 years. Their main health problems include frailty, physical disability, memory loss and chronic illness.
The lived experiences of caregivers is influenced by multiple factors. Qualitative data suggests that, caregivers face numerous challenges including accessing services, support and information. These challenges may impact on caregiver health and wellbeing with 27% of caregivers scoring ≥8 (≥8/33) on the KICA Depression scale indicating symptoms of depression. Lower depression scores are associated with higher empowerment scores and depression scores are lower with older age. However, caregiver strain increases with caregiver age. Caregivers in the CBPAR community addressed the challenges impacting on their role in creative ways including the use of film and radio.
Conclusion: This study has provided greater insight into the caregiver role, and its impact on health and wellbeing in two remote Aboriginal communities. It also provides the first evidence based knowledge on methods to empower family caregivers of Aboriginal people living with chronic aged conditions. This process may be transferable to other Aboriginal communities both in Australia and overseas.