Ethical Use and Impact of Participatory Approaches to Research in Post-Disaster Environments: An Australian Bushfire Case Study

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.

Effective engagement and involvement with community stakeholders in the co-production of global health research

“…This approach saves time and cost, but presents only one perspective on research. 35 When such a representative is necessary—for example, on a funding or ethics committee, it is crucial to ensure that the concerns of marginalised groups are included, by regular meetings with them. For example, the NIHR piloted a community of practice of public members who discussed what research should be prioritised, with a rotating representative from this community attending the prioritisation committee.…”

Reflexivity and humility evoke a transformable methodology in a post disaster context

“…For example, rather than having an individual interview, having family members engage with the participants in the recollection and articulation of experiences and events that occurred, may sometimes be the most appropriate course of action. Community-based participatory research (Gibbs et al, 2018 ; Wallerstein & Duran, 2010 ) participatory health research (Abma et al, 2017 ; Groot et al, 2019 ) and the decolonizing framework (Tuhiwai Smith, 2012 ) are examples of methods that allow for relational approaches. Similarly, relational phenomenological designs that include participants in the research process should consider the participants as ‘co-researchers,’ ‘retaining an open, empathic, embodied presence to another’s personhood, given the position that what we can learn and know about another arises within the intersubjective space between’ (Finlay, 2009 ).…”

Safe environments—Through the eyes of 9‐year‐old schoolchildren from a socially vulnerable area in Sweden

“…Research with children from a participatory perspective has been advocated and used when children are participants in the projects (Davis et al, 2018;Einberg, Nygren, Svedberg, & Enskär, 2016;Gibbs et al, 2018;Larsson, Staland-Nyman, Svedberg, Nygren, & Carlsson, 2018). This means that the participants play an active role throughout the project.…”

“…Photography and focus group interviews were used because these approaches are considered useful methods for exploring the children's own experiences (Gibson, 2007). Research with children from a participatory perspective has been advocated and used when children are participants in the projects (Davis et al, 2018; Einberg, Nygren, Svedberg, & Enskär, 2016; Gibbs et al, 2018; Larsson, Staland‐Nyman, Svedberg, Nygren, & Carlsson, 2018). This means that the participants play an active role throughout the project.…”