From Digital Mental Health to Digital Social and Emotional Wellbeing: How Indigenous Community-Based Participatory Research Influenced the Australian Government’s Digital Mental Health Agenda

Abstract

This paper describes the first six years of a government-initiated project to train Indigenous health professionals in digital mental health (d-MH). It illustrates how community-based participatory research (CBPR) methods were used to enable this “top-down” project to be transformed into a ‘ground-up’ community-guided process; and how, in turn, the guidance from the local Indigenous community partners went on to influence the national government’s d-MH agenda. The CBPR partnership between five community partners and a university rural health department is described, with illustrations of how CBPR harnessed the community’s voice in making the project relevant to their wellbeing needs. The local Indigenous community’s involvement led to a number of unexpected outcomes, which impacted locally and nationally. At an early stage, the conceptual framework of the project was changed from d-MH to the culturally-relevant Indigenous framework of digital social and emotional wellbeing (d-SEWB). This led to a significant expansion of the range and type of digital resources; and to other notable outcomes such as successful advocacy for an Aboriginal-specific online therapy program and for a dedicated “one-stop-shop” d-SEWB website, Wellmob, which was funded by the Australian government in 2019–2021. Some of the implications of this project for future Indigenous CBPR projects are discussed.

The Health and Wellbeing of Indigenous and Tribal Peoples around the Globe: Ensuring and Promoting Best Practice in Research

“…A range of mechanisms across the life of the research project or program, from setting research priorities to ongoing communication to dissemination of results, were described. These included: membership of Indigenous and Tribal people on advisory groups, working groups, steering committees, and governance committees [ 7 , 9 , 10 , 11 , 13 , 14 , 15 , 16 , 23 , 25 , 27 , 30 , 32 , 33 , 34 , 37 ]; involvement of community Elders, other community leaders, and Tribal health centres [ 19 , 25 , 28 , 35 ]; formal and informal partnerships with Aboriginal Community-Controlled Health Organisations, Tribal health services and other community organisations [ 8 , 10 , 14 , 19 , 20 , 22 , 25 , 29 , 30 , 31 ]; hiring and training Indigenous research staff, especially from the relevant community/ies [ 7 , 9 , 10 , 13 , 16 , 18 , 23 , 35 ]; the use of community-based participatory research approaches, co-design, and consumer engagement and involvement [ 12 , 19 , 20 , 23 , 25 , 32 , 33 , 35 ]; and the involvement ...…”

“…In addition to approval by Human Research Ethics Committees and Institutional Review Boards, which are embedded within Western academic institutions, a range of other mechanisms for ensuring appropriate Indigenous and Tribal governance in research were described in the papers included in the Special Issue, such as: approval by a Tribal government, an Indigenous Ethics Committee (e.g., the Aboriginal Health and Medical Research Council’s ethics committee in New South Wales, Australia), or an Aboriginal Community Controlled Health Organisation [ 7 , 8 , 9 , 10 , 12 , 13 , 14 , 16 , 18 , 19 , 22 , 23 , 25 , 28 , 29 , 31 , 35 ]; the use of cultural reference groups and governance committees [ 11 , 13 , 16 , 19 , 23 , 25 , 27 , 33 , 34 ]; and having formal agreed Terms of Reference and/or Resolutions of Support [ 10 , 20 , 29 ].…”

“…Studies in the Special Issue arose in a variety of ways. Some were investigator-driven, based on the results of previous research and/or discussions with various stakeholders over many years [ 7 , 9 , 11 , 13 , 15 , 16 , 17 , 18 , 21 , 25 , 26 , 29 , 32 , 36 , 37 ]. Other studies reflected the priorities of government agencies, either through alignment with articulated strategies or through commissioned work [ 24 , 25 , 33 ].…”

“…Some were investigator-driven, based on the results of previous research and/or discussions with various stakeholders over many years [ 7 , 9 , 11 , 13 , 15 , 16 , 17 , 18 , 21 , 25 , 26 , 29 , 32 , 36 , 37 ]. Other studies reflected the priorities of government agencies, either through alignment with articulated strategies or through commissioned work [ 24 , 25 , 33 ]. Many studies reflected the expressed needs and priorities of Indigenous and Tribal communities, either directly or through community organisations, Tribal governments, and/or Indigenous/Tribal advisory committee members [ 7 , 8 , 10 , 12 , 14 , 19 , 20 , 22 , 23 , 28 , 30 , 31 , 33 , 34 , 35 ].…”

“…The resulting Special Issue includes 31 papers in total, with 21 from Australia [ 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 ], 4 from the United States [ 28 , 29 , 30 , 31 ], 3 from Aotearoa/New Zealand [ 32 , 33 , 34 ], 1 from Canada [ 35 ], and 2 from authors in multiple countries [ 36 , 37 ]. This represents a substantial body of research on the health and wellbeing of Indigenous and Tribal peoples, possibly the largest collection ever published.…”