Lived experience co-design of self-harm interventions: A scoping review

Abstract

ABSTRACTBackgroundSelf-harm prevalence is rising, yet service users encounter stigmatising attitudes and feel let down when they seek professional help. Co-design activities can potentially enable development of more acceptable and effective services.ObjectivesTo map existing literature describing how people with lived experience of self-harm have engaged in co-designing self-harm interventions, understand barriers and facilitators to this engagement and how meaningfulness of co-design has been evaluated.Inclusion criteriaStudies where individuals with lived experience of self-harm (first-hand or carer) have co-designed self-harm interventions.MethodsIn accordance with Joanna Briggs Institute (JBI) scoping review methodology we scoped PubMed, Embase, PsycINFO, Web of Science, Cochrane Library, PROSPERO,ClinicalTrials.govand relevant websites on 24.12.22. A protocol was published online (http://dx.doi.org/10.17605/OSF.IO/P52UD). Results were screened at title and abstract level, then full-text level by two researchers independently. Pre-specified data was extracted, charted, and sorted into themes.ResultsWe included twenty co-designed interventions across mobile health, educational settings, prisons, and emergency departments. Involvement varied from designing content to multi-stage involvement in planning, delivery, and dissemination. Included papers described the contribution of 110 female and 26 male co-designers. Few contributors identified as from a minoritized ethnic or LGBTQ+ group. Six studies evaluated how meaningfully people with lived experience were engaged in co-design: by documenting the impact of contributions on intervention design, or through post-design reflections. Barriers included difficulties recruiting inclusively, making time for meaningful engagement in stretched services, and safeguarding concerns for co-designers. Explicit processes for ensuring safety and wellbeing, flexible schedules, and adequate funding facilitated co-design.ConclusionsTo realise the potential of co-design to improve self-harm interventions, people with lived experience must be representative of those who use services. This requires processes that reassure potential contributors and referrers that co-designers will be safeguarded, remunerated, and their contributions used and valued.ARTICLE SUMMARYStrengths and limitations of this studyComprehensive search strategy with no restriction on publication date to capture breadth of evidenceAll papers screened at title/abstract and full-text level by two researchers independentlyProtocol uploaded to the Open Science Framework prior to conducting scoping reviewDid not check all published self-harm intervention papers for evidence of co-design, so instances where co-design was not mentioned in the title or abstract could have been missedOnly the development paper for each intervention was included – follow up papers were excluded at full-text level which may have overlooked additional co-design details