- What is Aboriginal and Torres Strait Islander health?+
For Aboriginal and Torres Strait Islander peoples, 'health means not just the physical wellbeing of an individual but also the social, emotional and cultural wellbeing of the whole community in which each individual is able to achieve their full potential as a human being, thereby bringing about the total wellbeing of their community. It is a whole-of-life view and includes the cyclical concept of life-death-life.'
Quote taken from NACCHO website and the National Aboriginal Health Strategy (National Aboriginal Health Strategy Working Party, 1989).
'The Aboriginal concept of health is holistic, encompassing mental health and physical, cultural and spiritual health. Land is central to wellbeing. This holistic concept does not merely refer to the ‘whole body’ but in fact is steeped in the harmonised inter-relations which culturally constitute wellbeing. These inter-relating factors can be categorised largely as spiritual, environmental, ideological, political, social, economic, mental and physical. Crucially, it must be understood that when the harmony of these interrelations is disrupted, Aboriginal ill-health will persist.'
Quoted in Ways Forward: National Aboriginal and Torres Strait Islander Mental Health Policy national consultancy report (P. Swan & B. Raphael, Australian Government, 1995).
The Dance of Life – the dimensions of health include the biological or physical, the psychological or emotional, the social, the spiritual and finally, but most importantly, the cultural. Within each dimension there are additional layers to consider, including the historical context, the traditional and contemporary perspective, as well as our gaps in knowledge.
The Dance of Life, by Professor Helen Milroy (2002), is the last painting in a series depicting a multi-dimensional model of health and wellbeing from an Aboriginal perspective.
- What does ethics mean in relation to Aboriginal and Torres Strait Islander health research?+
Ethics is really about how people should live in relation to other people, animals and the environment. In research this means treating people fairly, with respect and with dignity. In practice, ethics means that researchers should:
- respect people’s individual wishes
- make sure no one is harmed by research
- only do research that will benefit the people or community being researched
- ensure people are fully informed about the aims and purposes of the research
- keep people informed about the methods and the research processes being used
- ensure confidentiality of individuals and communities
- negotiate ownership of data
- be concerned about the way the outcomes of the research may affect individuals or the community.
Unfortunately, not all researchers have applied these principles in research with Aboriginal and Torres Strait Islander peoples. For many years now there has been great concern within Aboriginal and Torres Strait Islander communities and among some non-Indigenous researchers about the processes of researching Aboriginal and Torres Strait Islander health issues. People have expressed concern and often anger about a whole range of issues such as:
- To what extent do Aboriginal and Torres Strait Islander people actually ‘consent’ to being involved in particular research projects?
- Who does and should control the ‘research agenda’?
- Who actually benefits from much of the research undertaken?
- What happens to data about Aboriginal and Torres Strait Islander people after it has been collected?
The description above is taken from Victorian Aboriginal Ethics Project Report (P. Pyett & P. Stewart, Onemda VicHealth Koori Health Unit, The University of Melbourne, 2005).
- What is community development with Aboriginal and Torres Strait Islander people?+
Community development is defined in the Aboriginal and Torres Strait Islander Australian context as 'a process of working with communities, in an environment that advocates the full and active participation of all community members, to assist their members to find plausible solutions to the problems they have identified, so that Indigenous people understand and acquire skills to develop culturally appropriate programs and services for their communities (Sherwood 1999)'. Two types of outcomes can be fostered by a ‘community development’ approach:
- Improvement in health outcomes by effectively addressing a health issue
- Increased individual and community empowerment, which leads to healthier and more equitable power relations.
Taken from Chapter 9 by D. Campbell et al. in I. Anderson, F. Baum & M. Bentley (eds), Beyond Bandaids: Exploring the underlying social determinants of health (CRC for Aboriginal Health, Darwin, 2004).
- Do I need Aboriginal and Torres Strait Islander health research ethics approval and is there a specific process?+
If the health research project involves clinical or epidemiological research, data linkage or data release, health services or population health research, or qualitative research you will usually need ethics clearance. This is true for any inclusion of Aboriginal and Torres Strait Islander participants, even in the event that the health research is working across other population groups.
For health research ethics proposals being submitted through a university system, research institution or health services and hospitals, the proposal should be assessed by an Aboriginal and Torres Strait Islander-specific Human Research Ethics Committee. Visit our National, state and territory contacts or contact NACCHO or one of its eight state and territory affiliates.
If you are collecting ideas and information to plan a local project or evaluation of the service you provide, you may not need ethics approval. Of course ethical considerations for working with Aboriginal and Torres Strait Islander participants still apply to quality assurance processes, and community consultation and ongoing communication is imperative.
- What is the difference between health research and quality assurance evaluation processes?+
There can be uncertainty about what level of ethics oversight is required for quality assurance and evaluation activities and whether such activities are actually health research. These activities may include methods or approaches that are also used in research, such as surveys and observation.
If you are collecting ideas and information to plan a local health promotion project, or an in-house evaluation of the service you provide, you may not need approval from an ethics committee. Of course, ethical considerations for working with Aboriginal and Torres Strait Islander participants still apply, and those conducting the work must consider whether the people involved – participants, staff or the community – will be exposed to any risk, burden, inconvenience or possible breach of their privacy.
Respectful and meaningful Aboriginal and Torres Strait Islander community consultation and engagement should be culturally appropriate and ongoing, regardless of whether a project is health research, quality assurance or evaluation.
For more information see the NHMRC document Ethical considerations in quality assurance and evaluation activities.