We wish both to commend and respond to the editorial ‘A complex Aboriginal health project and the challenges for evaluation’ in the March edition of ANZJPH.1 We work within a Department of Public Health and are interested in the potential of the arts to represent and provide insight into experiences of health and illness in different settings – in therapy; living with chronic illness, including mental illness; and approaching the end of life. We found this editorial both informative and thought provoking.
Our attention was caught particularly by the way the arts program is being used by the Western Desert Kidney Health Program both to engage with the community and to build a collective commitment to change. So much arts-based work is carried out with groups selected on the basis of a shared illness condition. In contrast, this arts program recognises and validates an existing community. While a particular potential health threat is the pretext for the program, its actual effect is to strengthen community connections and construct a health response from a local perspective drawing upon local wisdom. It expands attention from a narrow concern for a specific illness condition and begins to develop communal representations of health. By respecting and fostering people's autonomy it enhances one of the most fundamental social determinants of health.2
Leavy argues that in addressing social research questions which invite holistic and engaged responses “arts-based practices can be employed as a means of creating critical awareness or raising consciousness (such as) in social justice-oriented research that seeks to reveal power relations, raise critical race or gender consciousness, build coalitions across groups, and challenge dominant ideologies”.3 She also refers to arts-based research as being useful in “identity work (and in) giving voice to subjugated perspectives”.3 An implication is that arts-based approaches can create alternative discourses and offer alternative pathways toward community goals. They achieve this by challenging dominant ideologies that quench local knowledge. Here the arts program challenges our western insistence on trying to create health by attending to illness.
Michael Wilson asserted more than 30 years ago that “rather than trying to reach health by understanding illness, we must first try to understand health, in the light of which we may be able to say something about being well or ill”.4 In our reading of it, this fundamental reorientation is what the arts program is attempting: a shift from a focus upon illness to considerations of health.
It is not unknown in other areas of care to build resilience before addressing evident areas of need. Too many of our ‘health’ interventions are targeted at deficits: this program demonstrates how building upon strengths can establish a platform for more effective responses.
We also noted the call for suggestions for more effective ways to evaluate the program that produces performance rather than performance indicators. We see, however, that these researchers are already providing for an evaluation that takes a systemic approach to dealing with different levels of a complex system. They appear quite aware that to limit evaluation to measurements against parameters for one illness-focused program would be to miss the shifts that take place in consciousness, resilience, and health literacy. Part of the evaluation, then, is likely to be a critique of illness focused programs that fail to address changes in fundamental cultural and social determinants of health.
We applaud their integrative approach and their initiatives in bringing together strategies and ideas that appear in different places in diverse literatures. It certainly makes sense to record the immediate visible impact of the arts experience – song, dance, performance – to see participation, and the responses of participants and audience. Demonstrating the value of making products and recordings of art – and making it available to other communities – does require funding for tracking the impact of some of this, eg. numbers and responses of viewers of films, performances, exhibitions and websites, and in the longer term perhaps a search for new initiatives in these other communities. They have suggested that follow up in the original communities might look for the exercise of skills, interview individuals to identify any changes in themselves or their communities, and check whether any healthy choices have been made easier (fruit as accessible as soft drinks!). Looking for continuing projects and new initiatives might demonstrate increased autonomy and social inclusion.
If we are to support programs like this that address health more than illness we must in turn understand that evaluating it simply in terms of its contribution to the goals of the project from which it originated will be to miss the point. This program needs to be evaluated in terms of its contribution to the capacity of the community to conceptualise and represent health, and to create constructive responses that will affect not just kidney disease but the whole gamut of ‘lifestyle diseases’ that contribute to elevated morbidity and morality rates in Indigenous communities.
The evaluation thus extends also to the design and funding of health programs. Programs should be health, rather than illness, focused. The mitigation and prevention of illness should be a by-product of the pursuit of health, not the multiple foci of a plethora of illness interventions.
One other practical impact of research may be that it stimulates, educates and motivates other researchers and practitioners, and this project has certainly done this for us. We are grateful.