Safe, meaningful and effective involvement of young people with lived experience in suicide research

• In Event: Methods of involving young people in health research

Abstract

Introduction: Suicide is the fourth leading cause of death in young people worldwide for both sexes, after road injury, tuberculosis and interpersonal violence (WHO, 2021). Despite this, evidence regarding interventions and treatments that work for suicide-related behaviors in young people is still emerging (Robinson et al., 2018). Meaningful youth involvement in all stages of the research process ensures that research outcomes and interventions are relevant and responsive to young people’s needs (Orlowski et al., 2015). However, to date young people with lived experience tend to be excluded from active involvement in youth suicide research, beyond being 'subjects', due to concerns about safety, recruitment, and lack of guidelines (Wadman et al., 2019), significantly limiting the transferability and appropriateness of interventions for this population.
Hypothesis: The hypothesis for this study was that it would result in the development of best practice guidelines for researchers in how to involve young people with lived experience of suicide safely, meaningfully, and effectively in suicide research.
Study population: Suicide researchers and young people aged 15 to 30 years with lived experience of suicide who have previously been involved in suicide research.
Methods: The study employed a Delphi expert consensus method, consisting of the following two stages: 1. A systematic search of the peer and grey literature, and interviews with international experts (14 suicide researchers, and 13 young people with both lived experience of suicide and of participating in suicide research), to identify possible guideline items; 2. Consensus ratings of draft items by expert panel members (young people with both lived experience of suicide and of participating in suicide research, and suicide researchers). Included items in the guidelines were based on an 80% consensus agreement threshold. Two young people with lived experience of suicide were recruited as co-researchers. These co-researchers were involved in a range of research activities throughout the study, including the development of interview schedules, participant recruitment, guideline items and structure, and the dissemination of findings.
Results: The final guidelines provide recommendations for researchers when involving young people with lived experience of suicide in suicide research. These recommendations include items for developing risk management and safety protocols, support strategies for researchers and young people, recruitment, training and induction, and flexibility and personalization of involvement. Key tensions between young people with lived experience and researchers were the level of acceptable risk levels for young people’s recruitment and involvement, and the dynamic nature of risk. The main challenge of involving youth co-researchers in this study was the relatively rigid Delphi methodology, with limited ways they could be involved. To mitigate this challenge, we worked with the youth co-researchers to offer activities that were flexible, meeting their preferences and needs, while retaining requirements of the Delphi methodology.

Authors

• Marianne Webb, Centre for Youth Mental Health, University of Melbourne; Orygen
  Presenting Author

• Charlie Cooper, Centre for Youth Mental Health, University of Melbourne; Orygen

• Laura Hemming, Centre for Youth Mental Health, University of Melbourne; Orygen

• Emily Unity, Centre for Youth Mental Health, University of Melbourne; Orygen

• Alex Dalton, Centre for Youth Mental Health, University of Melbourne; Orygen

• Jo Robinson, Centre for Youth Mental Health, University of Melbourne; Orygen