The cost of providing health care to people with chronic diseases continues to rise. Current chronic disease care implemented in primary health care settings focuses on efficient use of resources, safety and quality of health services, teams of providers and well informed and involved patients. The role of culture and family in maintaining a person’s well-being are rarely considered. Findings from the Kanyini Qualitative Study, however, have raised important questions about what care means, and how Aboriginal and Torres Strait Islander peoples experience life-long illness.
A study was undertaken to develop a Wellbeing Framework which could assist primary healthcare services to improve the quality of life and quality of care, as well as the health outcomes, for Aboriginal and Torres Strait Islander peoples living with chronic disease. Guided by our National Reference Group, the study resulted in a Wellbeing Framework which incorporates not just physical but also social, emotional, cultural and spiritual aspects of health and wellbeing.
Structure of the Wellbeing Framework
The Wellbeing Framework consists of two core values that are fundamental to the provision of care for Aboriginal and Torres Strait Islander peoples. It also sets out four essential elements that can assist primary healthcare services to support the wellbeing of Aboriginal and Torres Strait Islander peoples living with chronic disease. Every element is supported by four principles. Underpinning each principle is a number of practical and measurable applications that suggest ways in which the principle could be applied. Primary healthcare services, in consultation with the communities they serve, are encouraged to use the elements, principles and applications included within this Wellbeing Framework to shape their own Wellbeing Model which specifically addresses the needs of their communities.
Fundamental to this Wellbeing Framework is also a set of internationally-recognised values and beliefs:
- The Declaration of Alma-Ata , which recognises health as a state of physical, mental and social wellbeing rather than merely the absence of disease, and the right of people to participate in the planning and implementation of their healthcare services.
- The United Nations Declaration on the Rights of Indigenous Peoples , which sanctions cultural integrity and the rights of Indigenous peoples to practice and revitalise cultural traditions and customs.
- The Ottawa Charter for Health Promotion , which advocates for health promotion as a means of enabling people to increase control over, and thereby to improve, their health.
- The vision of the National Aboriginal Community Controlled Health Organisation , which seeks to “deliver holistic and culturally appropriate health and health related services to the Aboriginal community” (p.6).
Other chronic care models rarely addressed or even considered a holistic approach to care, often neglecting to engage with the important roles of culture, family and spirituality in maintaining the wellbeing of Aboriginal and Torres Strait Islander peoples. They have also overlooked how the health of Aboriginal and Torres Strait Islander peoples has been deeply affected by intergenerational colonisation, including formal policies of segregation and exclusion, as well as forced removal from Country and family. The themes, elements and principles contained within this Wellbeing Framework will assist primary healthcare services to redress some of these important issues.
A Collaborative Approach
The Wellbeing Framework was developed by and for Aboriginal and Torres Strait Islander peoples. Under the guidance of our National Reference Group, a team of researchers including thirteen Aboriginal and Torres Strait Islander health professionals from across Australia came together to undertake this important work. Over 70 community members and healthcare practitioners who provide care to Aboriginal and Torres Strait Islander peoples also reviewed and provided advice prior to release.
Core Value 1: Wellbeing is supported by upholding peoples’ identities in connection to culture, spirituality, families, communities and Country.
Supporting the wellbeing of people in the presence of chronic disease must include upholding people’s cultural connectedness and balance with their families, communities, Country, culture and spirituality [5, 6]. For many Aboriginal and Torres Strait Islander peoples, there are complex relationships between natural and spiritual worlds involving interconnections between themselves, their community structures and their environments . Creation beliefs shape people’s lives, as well as their spirituality, values, attitudes, concepts, language and relationships to the physical and material world . Often there can be a perception that personal illness or injury is a manifestation of struggles to maintain balance between spiritual, physical and emotional wellbeing and the wider world .
Core Value 2: Wellbeing is supported by culturally safe primary healthcare services.
Cultural safety ‘involves health providers working with individuals, organisations and, sometimes, [communities]’ [10 p. 23]. It extends beyond being aware of or sensitive to cultural differences. It includes a deeper level of interaction and thoughtful practice that ensures safe services, as defined by those who receive services [10, 11]. ‘Unsafe cultural practice comprises any action which diminishes, demeans or disempowers the cultural identity and wellbeing of an individual’ [12 p. 6] or of their families or communities .
Authorship and Acknowledgements
The research reported here is a project of the Australian Primary Health Care Research Institute, which is supported by a grant from the Australian Government Department of Health under the Primary Health Care Research, Evaluation and Development Strategy. The information and opinions contained in it do not necessarily reflect the views or policies of the Australian Government Department of Health.
The following people – including the thirteen Aboriginal and Torres Strait Islander Research Fellows from seven Aboriginal Medical Services who participated in Stage Three of the study – were part of the Wellbeing Study Team: Timena Ahmat, Gary Brahim, Alex Brown, Carol Davy, Anna Dowling, Tania Kelly, Shaun Jacobson, Kaylene Kemp, Elaine Kite, Fiona Mitchell, Tina Newman, Margaret O’Brien, Jason Pitt, Bernadette Rickards, Kesha Roesch, Christine Saddler, Leda Sivak, Maida Stewart and Tiana Thomas.
We would also like to acknowledge the significant contribution that the following Aboriginal Medical Services made to this study: Danila Dilba Medical Service, Maari Ma Health Aboriginal Corporation, Nunkuwarrin Yunti Inc, Tharawal Aboriginal Corporation, Winnunga Nimmityjah Aboriginal Health Service, Wirraka Maya Health Service Aboriginal Corporation and Wuchopperen Health Service.
In addition, we would like to offer special thanks to the National Reference Group members for their generous input into this project.