Abstract
This paper presents a case study of Beyond Bushfires, a large, multisite, mixed method study of the psychosocial impacts of major bushfires in Victoria, Australia. A participatory approach was employed throughout the study which was led by a team of academic investigators in partnership with service providers and government representatives and used on-site visits and multiple methods of communication with communities across the state to inform decision-making throughout the study. The ethics and impacts of conducting and adapting the approach within a post-disaster context will be discussed in reference to theories and models of participatory health research. The challenges of balancing local interests with state-wide implications will also be explored in the description of the methods of engagement and the study processes and outcomes. Beyond Bushfires demonstrates the feasibility of incorporating participatory methods in large, post-disaster research studies and achieving rigorous findings and multilevel impacts, while recognising the potential for some of the empowering aspects of the participatory experience to be reduced by the scaled-up approach.
Highlights
There are many different forms of participatory health research (PHR) but the shared principle is that “research is not done on people as passive subjects providing data but with them to provide relevant information for improving their lives
Research activities in PHR create opportunities for cocreation of knowledge, and the different forms of expertise that each person brings to the process are valued [2]
There is growing evidence of the benefits of PHR in terms of recognition of different forms of expertise, increased relevance and uptake of outcomes, increased empowerment and/or self-efficacy, improved health status and health behaviours, and changes located in the social system [3,4,5,6]
Summary
There are many different forms of participatory health research (PHR) but the shared principle is that “research is not done on people as passive subjects providing data but with them to provide relevant information for improving their lives. PHR has particular relevance for communities of disadvantage or potentially vulnerable groups because there is scope for their lived experiences to be recognised and to build their capacity and empower them in the process of shaping the research and outcomes [11]. This requires diligence in consideration of the ethics and impacts of research practice to ensure avoidance of the symbolic violence that arises if those involved are misunderstood or misrepresented [12]. This case study is presented according to two core principles of the Guide to Ethical Principles and Practice which were found to have particular relevance, the principles of “equality and inclusion” and “making a difference”
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