Involving stakeholders with lived and professional experience in a realist review of community mental health crisis services: a commentary

Abstract

Patient and Public Involvement (PPI) is considered good practice in all health research including literature reviews. Reporting of involvement practice in realist reviews has been inconsistent leaving gaps in understanding of best practice. Realist reviews are theory driven and explain how interventions work, for whom and in which circumstances. PPI in realist reviews provides a link between programme theory and real-world experiences and can be achieved through a ‘stakeholder group’ bringing lived and professional experience together. This paper discusses experiences of a stakeholder group with seven members with lived experience and eight members with professional experience in a realist review focused on how community mental health crisis services work. A mental health crisis is a time of distress when people need urgent support. Many different agencies can respond to mental health crises, but despite this, people often find it hard to navigate to the right help at the right time. Reflections on involvement in four stakeholder meetings alongside practical examples of involvement activities used during the realist review are discussed. Having two researchers co-lead the stakeholder group from both lived and professional experience perspectives provided a bridge between the different expertise within the stakeholder group. Engagement with a voluntary organisation provided support to lived experience stakeholders, which sustained their involvement over time. Social connectedness was needed to establish trust between stakeholders. This required informal social contact between stakeholders that needed to be planned, especially for online meetings. To maintain the emotional wellbeing of the stakeholders during their involvement, safe spaces for discussion are needed and these are best planned in partnership with the stakeholders. We concluded that consideration of ways to provide opportunity for informal contact in online meetings may improve the experience of the stakeholders. Careful consideration of ways to sustain stakeholders’ contribution over time are needed. The emotional impact of involvement should be considered when planning realist reviews. This may include built in flexibility in the involvement to include small expertise specific breakout groups, individual meetings, and should be planned in partnership with the stakeholders. Supplementary Information The online version contains supplementary material available at 10.1186/s40900-024-00662-3.