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

Abstract

BackgroundDespite 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.ObjectiveTo 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.MethodsFifteen 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.ResultsA 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.ConclusionsConsumer 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.

Developing a Mental Health eClinic to Improve Access to and Quality of Mental Health Care for Young People: Using Participatory Design as Research Methodologies (Preprint)

“…In a systematic review of online mental health interventions for young people, however, limited-uptake, engagement, adherence and dropout rates have been identified as significant problems [46,47] Some researchers, including ourselves, believe that the involvement of young people and youth health professionals in the design, development and delivery of youth services leads to beter engagement and outcomes [48][49][50].…”

“…The process involves iterative design cycles in which end-users and researchers contribute to knowledge production and the development of the end product [48,54].…”

“…On one end sits user-centred design, where end-users participate on a consultation basis only, and the design and research teams control the entire design process and make all the decisions; at the other end of the continuum sits consumer-led research, where end-users initiate and/or control the entire process [48]. PD techniques, however, sit along this continuum, with endusers participating in all stages of development [56], not as consultants or controllers of the process, but sharing equal responsibility with the research team for the outcomes [48]; some researchers [57] including us, consider PD approaches need to make the end-user the centre of the design process.…”

“…In 2015, a systematic review [48] described the development of these interventions in areas such as prevention, screening [58] and treatment programs [59]. In the majority of cases, however, end-users assumed more of a consultative role, and the development of technologies that used more than one participatory approach were in the minority.…”

Using New and Innovative Technologies to Assess Clinical Stage in Early Intervention Youth Mental Health Services: Evaluation Study (Preprint)

“…A consistent theme is that such technologies can also address poor youth engagement with mental health services [10]. In these services, for example, innovations in the use of such technologies which allow the assessment process to be brought online, could improve current wait times, as well as provide a wider reach for young people who physically (or emotionally) struggle to access face-to-face clinical care [11].…”