End user perspectives on design and conduct of health-related disaster research

Individuals and communities are the intended beneficiaries of disaster research, and are ideally positioned to inform research aims, methods, desirable outcomes and implementation strategies. However, it can be challenging for researchers more familiar with quantitative methods to engage end users in study design and conduct. In an attempt to break down barriers involving end users in health-related disaster research, we outline how our research team conducted community consultations in the early stages of a bushfire-focussed health study, what we found and how this influenced our subsequent research. Participants (n = 76) were recruited by convenience sampling from five communities- one rural community which had direct experience of bushfire 5–10 years ago (n = 9), three communities located in high bushfire risk areas (n = 47) and one community in an urban centre (n = 20). Participants provided their perspectives on previous experiences of research participation and/or priorities/concerns about future health-related disaster research in two custom survey instruments and a focus group. Data analysis using conventional content analysis revealed four themes- 1) the importance of a holistic view of health that encompasses mental, physical, and social wellbeing; 2) appropriate study design/conduct with emphasis on inclusivity, scientific rigor, sensitivity to participants’ needs/circumstances, minimised participant burden and responsiveness to participant feedback; 3) clear and regular communication; and 4) practical, participant-focussed study outcomes. We describe how these findings shaped the design of our subsequent prospective, longitudinal health-focussed disaster research study (the ISLAND Resilience Initiative). This work may support participant engagement in future research studies focused on end user needs following disaster experiences.