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      Supported and valued? A survey of early career researchers’ experiences and perceptions of youth and adult involvement in mental health, self-harm and suicide research

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          Abstract

          Background

          Patient and public involvement (PPI) in mental health research, including self-harm and suicide research, is desirable (as with other health topics) but may involve specific challenges given the perceived sensitivity of the topic. This is particularly so when involving young people. We explore the experiences and perceptions of Early Career Researchers (ECRs) undertaking youth and adult involvement work in mental health, self-harm and/or suicide research. We consider current practice, barriers and facilitators.

          Methods

          An online survey of a convenience sample of ECRs ( N = 41) undertaking research on mental health, self-harm and/or suicide. Questions examined the perceived value of involvement work, involvement methods used, funding availability and the extent to which researchers felt knowledgeable, supported and confident in their involvement activities. Descriptive statistics are presented with appropriate tests. Open-ended questions, related to barriers and facilitators for involvement work, were subjected to an inductive thematic analysis.

          Results

          Youth and adult involvement work were valued to a similar extent, though institutions were reported to value youth involvement to a lesser extent. Researchers’ knowledge, confidence and support ratings were comparable for youth and adult involvement. The involvement methods used with young people and adults were also similar, with analysing data being the least popular method used and developing resources (e.g. information sheets) being the most popular method used. Less than a third of participants reported that funding was available for their research involvement activities. Barriers to involvement in research on mental health, self-harm and suicide were: ethical issues and perceived risk; real costs (in terms of money/time) versus perceived value; and the challenge of recruiting people. Facilitators to involvement work were: expert examples, expertise and guidelines; and investment in involvement work.

          Conclusions

          ECRs in the fields of mental health, self-harm and suicide are engaged in youth and adult involvement work. They value (find worthwhile) youth and adult involvement work to a similarly high extent, but feel their institutions may regard youth involvement slightly less highly than adult involvement. ECRs rate themselves as feeling similarly knowledgeable, confident and supported when doing involvement activities with both age groups. Nonetheless, significant barriers to involvement work on these topics are reported and are generally issues that need to be tackled at an institutional level (ethical/governance issues and lack of funding).

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          Most cited references 20

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          Youth as partners, participants or passive recipients: a review of children and adolescents in community-based participatory research (CBPR).

          Community-based participatory research (CBPR) is an orientation to research that places value on equitable collaborations between community members and academic partners, reflecting shared decision making throughout the research process. Although CBPR has become increasingly popular for research with adults, youth are less likely to be included as partners. In our review of the literature, we identified 399 articles described by author or MeSH keyword as CBPR related to youth. We analyzed each study to determine youth engagement. Not including misclassified articles, 27 % of percent of studies were community-placed but lacked a community partnership and/or participatory component. Only 56 (15 %) partnered with youth in some phase of the research process. Although youth were most commonly involved in identifying research questions/priorities and in designing/conducting research, most youth-partnered projects included children or adolescents in several phases of the research process. We outline content, methodology, phases of youth partnership, and age of participating youth in each CBPR with youth project, provide exemplars of CBPR with youth, and discuss the state of the youth-partnered research literature.
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            A systematic review of the impact of patient and public involvement on service users, researchers and communities.

            Patient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research.
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              Encouraging user involvement in mental health services

               Jamie Tait (2005)
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                Author and article information

                Contributors
                +44 (0)115 951 5280 , Emma.Nielsen@nottingham.ac.uk
                Journal
                Res Involv Engagem
                Res Involv Engagem
                Research Involvement and Engagement
                BioMed Central (London )
                2056-7529
                29 April 2019
                29 April 2019
                2019
                : 5
                Affiliations
                [1 ]ISNI 0000 0004 1936 9668, GRID grid.5685.e, Department of Health Sciences, , The University of York, ; York, UK
                [2 ]ISNI 0000 0004 1936 7486, GRID grid.6572.6, Institute for Mental Health, School of Psychology, , University of Birmingham, ; Birmingham, UK
                [3 ]ISNI 0000 0004 1936 8868, GRID grid.4563.4, Self-Harm Research Group, School of Psychology, , The University of Nottingham, ; Nottingham, UK
                Article
                149
                10.1186/s40900-019-0149-z
                6489170
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                Funding
                Funded by: Economic and Social Research Council (ESRC)
                Award ID: ES/J500100/1
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2019

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