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.

Simone Kate Orlowski,Anthony Venning,Sharon Lawn,David Smith,Philippa Collin,Raechel A Damarell,Geoffrey Schrader,Gabrielle M Jones,Kaisha Wyld,Megan Winsall,Gaston Antezana,Niranjan Bidargaddi

doi:10.2196/humanfactors.4361

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.

Highlights

Technology and Youth Mental HealthMore than a quarter of young Australians aged 16-24 years old will experience a mental illness in a 12-month period, with anxiety, substance abuse, and mood disorders the most common [1]
It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing
Given the potential for technology to increase engagement with mental health services, the current review explored the question: “How have participatory methodologies been employed to develop technology-based youth mental health and well-being interventions?”

Summary

Introduction

Technology and Youth Mental HealthMore than a quarter of young Australians aged 16-24 years old will experience a mental illness in a 12-month period, with anxiety, substance abuse, and mood disorders the most common [1]. The potential of technology, to increase youth engagement with formal mental health services, in rural and remote contexts where service options can be limited, is yet to be fully realized. Technology-based mental health care interventions are often cited as methods for providing greater access to and engagement with services [5,6,7]. A recent review, identified only 2 studies that investigated the use of technology to increase engagement with clinical youth mental health services, and a further 3 explored the role of technology as an adjunct to face-to-face therapy [8]. Despite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth Referring to the outcomes and process are accepted as authoritative and valid (ie, was there any information regarding participant/stakeholder views on participating in the research the research or on the outcome) [45]

Methods

Results

Discussion

Conclusion