Exploring lived experience expertise: A mixed methods study

Introduction

McPin Foundation, employ and collaborate with people who actively work with lived experiences of mental health issues. Roles range from patient involvement to peer research roles embedded in trials. McPin undertook an internal evaluation to understand how staff recognise, mobilise, and value their lived experience expertise.



Methods

A mixed approach was taken.  A workshop (n=8) and a survey (n=30) with McPin employees whom actively work with their lived experiences of mental health issues explored: peer identity, experiential knowledge, methods, methodology and personal philosophies.  Survey questions were informed by a rapid review of academic, grey literature and oral histories. A reflexive thematic analysis approach was taken to data analysis.



Results 

Results highlight experiential skills associated with peer research at McPin. Thes are skills gained from experience rather than theory or reading. These included: selective disclosure of one’s own lived experiences, resilience and adaptability to stigma and discrimination, an empathic approach to fieldwork and a reflexive approach to data analysis. 

Peer research at McPin holds a similar value base to the survivor research movement. A pragmatic approach is taken with institutional collaborations. Peer research seeks to redress power imbalances in research practices, incrementally over time. Challenges of having to embody both an ‘insider’, and an ‘outsider’ position when actively working with one’s own lived experiences of mental health issues can lead to a sense of imposter syndrome.



Discussion and Conclusion

McPin’s approach to working with lived experience is integrated into its values base as an organisation. To work  collaboratively, compassionately and with courage. These values were evident at the individual, interpersonal and organisational level.