Patient and public involvement in the development, delivery and evaluation of a novel engagement intervention in early intervention in psychosis services

Background: The Early Youth Engagement (EYE) project co-developed the first engagement-focussed intervention derived from the perspectives of young people and their families in Early Intervention in Psychosis services. Patient and Public Involvement (PPI) in the EYE-2 study aimed to ensure that the voices of people experiencing first episode psychosis, and carers, were embedded in the refinement, delivery and evaluation of the Early Youth Engagement (EYE-2) approach across the UK. Method(s): The EYE-2 project used a multi-level PPI approach: Each of five sites had a PPI lead, trained and supported by senior PPI researchers. PPI leads convened local Lived Experience Advisory Panels (LEAPs), and co-delivered staff and researcher training. Practical challenges were identified and resolved. Results and Impacts: Tangible PPI impacts included: the co-produced revised booklets and EYE-2 website https://www.likemind.nhs.uk following workshops of over 40 people;the delivery of on average 52 peer-led intervention social groups at each site, allowing people to connect with peers with lived experience and build a sense of optimism, shared identity, interpersonal skills and problem-solving in a social environment, with activities driven by service users. Written outcomes included a PPI-led booklet on running peer-led social groups, a person-centred telephone interview for the HoNOS questionnaire for use during the Covid-19 pandemic, peer reviewed papers, blogs and video logs. Conclusion(s): PPI was integral to the delivery of the EYE-2 study;the multi-level approach facilitated a diversity of voices across different aspects of the study and ensured that people with lived experience shaped the intervention, research design and implementation.

Investigating a psychological model of mental conditions and coping during the COVID-19 pandemic driven by participatory methods.

BACKGROUND: There is evidence of increased mental health problems during the early stages of the COVID-19 pandemic. We aimed to identify the factors that put certain groups of people at greater risk of mental health problems. METHODS: We took a participatory approach, involving people with lived experience of mental health problems and/or carers, to generate a set of risk factors and potential moderators of the effects of COVID on mental health. An online cross-sectional survey was completed by 1464 United Kingdom residents between 24th April and 27th June 2020. The survey had questions on whether respondents were existing mental health service users and or carers, level of depression (PHQ9) and anxiety (GAD7), demographics, threat and coping appraisals, perceived resilience (BRS), and specific coping behaviours (validated as part of this study). The relationship between responses and coping strategies was measured using tetrachoric correlations. Structural equation modelling was used to test the model. RESULTS: A model significantly fit our data (rel χ2 = 2.05, RMSEA = 0.029 95%, CI (0.016, 0.042), CFI = 0.99, TLI = 0.98, SRMR = 0.014). Age and coping appraisal predicted anxiety and depression. Whereas, threat appraisal and ethnicity only predicted anxiety, and resilience only predicted depression. Additionally, specific coping behaviours predicted anxiety and depression, with overlap on distraction. CONCLUSIONS: Some, but not all, risk factors significantly predict anxiety and depression. While there is a relationship between anxiety and depression, different factors may put people at greater risk of one or the other during the pandemic.

The evolution of community peer support values: reflections from three UK mental health project teams The McPin peer support evaluation writing collaborative

Objective: To explore emergent values for community-based peer support in three projects and use of peer research methodology. Background: Peer support refers to the support people with shared lived experiences provide to each other. Its roots are in the civil rights movement, providing alternatives to clinical treatments. This method of support is delivered in different settings, with varying degrees of structure. In this paper, it includes shared experience of mental health issues. Methods: We reviewed interview data from two evaluations and one development project - mental health (n = 69), women-only (n = 40), and maternal mental health (n = 24), respectively. Each project used peer research methods. Peer support values from each project were compared, along with reflections from mostly peer researchers who worked on them (n = 11). Results: Six peer support values emerged and were found to be identifiable and applicable in different contexts. Decisions on facilitation and leadership varied across projects and generated some concerns over professionalisation, including non-peer leadership. Frameworks were viewed as broadly useful, but peer support is heterogenous, and peer researchers were concerned about over-rigid application of guidance. Discussion: We propose caution applying frameworks for peer support. Values must remain flexible and peer-led, evolving in new contexts such as COVID-19. Evaluators have a responsibility to consider any potentially negative consequences of their work and mitigate them. This means ensuring research outputs are useful to the peer support community, and knowledge production is based upon methodologies, such as peer research, that complement and are consistent with the values of peer support itself.