Community involvement to maximise research success in Torres Strait Islander populations: more than just ticking the boxes

Abstract

Islander communities has not always been conducted ethically or with tangible benefits to those involved. Justifiably then, people may be reticent to welcome researchers into their communities. Genuine commitment to community consultation, the fostering of partnerships and collaborative approaches maximise successful outcomes and research translation in these communities.Issue: Despite guidelines existing to try to ensure the needs of Aboriginal and Torres Strait Islanders are met through any research involving them, non-Indigenous researchers may not be fully aware of the complexities involved in applying these guidelines. This article explores how a team of Indigenous and non-Indigenous researchers understood and applied the guidelines during a 3-year dementia prevalence study in the Torres Strait.Their reflections on the practicalities involved in conducting ethically sound and culturally appropriate research are discussed. Lessons learned:Having a deep understanding of the ethical principles of research with Torres Strait communities is more than just 'ticking the boxes' on ethics approvals. Genuine community involvement is paramount in conducting research with the communities and only then will research be relevant to community needs, culturally appropriate and facilitate the translation of knowledge into practice.

A Comprehensive Review of Optimal Approaches to Co-Design in Health with First Nations Australians

“…First Nations Australians must determine the specific shape and scope of the health concern to be addressed which aligns with community needs and priorities. Community leaders, Elders, organisations, individuals, reference groups, and/or communities may be involved in defining the co-design priorities [ 2 , 33 , 36 , 48 , 51 , 54 , 55 , 57 , 58 , 65 , 69 , 70 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 ]. First Nations Australians are best placed to make these decisions because of their unique knowledge of the historical, social and cultural factors in the community [ 44 , 70 ].…”

“…First Nations Australians are best placed to make these decisions because of their unique knowledge of the historical, social and cultural factors in the community [ 44 , 70 ]. Priorities should be shaped through meaningful, ongoing engagement and consultation with the community [ 77 , 78 , 87 ].…”

“…Addressing community-identified priorities is an essential first step in First Nations Australians leading, owning, and sustaining actions taken to address critical health issues [ 44 , 49 , 59 , 70 ] and this philosophy should be maintained over the course of the entire project [ 69 , 70 , 81 ]. In particular, community consultation and feedback are vital to ensuring community voices drive the co-design project [ 2 , 37 , 39 , 41 , 43 , 46 , 62 , 66 , 70 , 71 , 75 , 77 , 79 , 80 , 86 , 89 , 90 , 91 , 92 , 93 , 94 ]. Consultation should not be tokenistic, hurried or “managed consultation” [ 2 ], rather it needs to reflect genuine listening and consideration of the issues affecting the community from a broad spectrum of stakeholders [ 56 , 70 , 73 , 75 , 90 , 91 , 92 , 95 , 96 ].…”

“…Functions of governance bodies in co-design projects may include, but are not limited to, project monitoring, decision-making [ 64 , 77 , 83 ], providing feedback [ 39 , 77 , 102 ], guiding processes [ 102 ], resource allocation and development [ 78 , 84 , 95 ], cultural guidance and advice [ 47 , 50 , 56 , 83 ], setting actions and goals for the project [ 39 ], ensuring community control [ 31 , 50 ], and knowledge translation [ 95 ].…”

“…This is needed to recognise and incorporate the cultural differences between groups. A ‘one size fits all’ approach will not work [ 33 , 35 , 50 , 60 , 62 , 77 , 78 , 89 ].…”