Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions.

Background: Despite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. It is thought that involving young people in the development and delivery of services designed for them leads to better engagement. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth.

Objective: To investigate consumer involvement processes and associated outcomes from studies using participatory methods in development of technology-based mental health and well-being interventions for youth.

Methods: Fifteen electronic databases, using both resource-specific subject headings and text words, were searched describing 2 broad concepts-participatory research and mental health/illness. Grey literature was accessed via Google Advanced search, and relevant conference Web sites and reference lists were also searched. A first screening of titles/abstracts eliminated irrelevant citations and documents. The remaining citations were screened by a second reviewer. Full text articles were double screened. All projects employing participatory research processes in development and/or design of (ICT/digital) technology-based youth mental health and well-being interventions were included. No date restrictions were applied; English language only. Data on consumer involvement, research and design process, and outcomes were extracted via framework analysis.

Results: A total of 6210 studies were reviewed, 38 full articles retrieved, and 17 included in this study. It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing. Sustainable participation was difficult to achieve. Projects reported clear dichotomies around designer/researcher and consumer assumptions of effective and acceptable interventions. It was not possible to determine the impact of participatory research on intervention effectiveness due to lack of outcome data. Planning for or having pre-existing implementation sites assisted implementation. The review also revealed a lack of theory-based design and process evaluation.

Conclusions: Consumer consultations helped shape intervention design. However, with little evidence of outcomes and a lack of implementation following piloting, the value of participatory research remains unclear.