Understanding the identity of lived experience researchers and providers: a conceptual framework and systematic narrative review

Abstract

Background Identity is how we understand ourselves and others through the roles or social groups we occupy. This review focuses on lived experience researchers and providers and the impact of these roles on identity. Lived experience researchers and providers use their lived experience of mental or physical disability either as experts by experience, researchers, peer workers, or mental health professionals with lived experience. They must navigate both professional and personal aspects to their roles which can be complex. Performing roles simultaneously embodying professional and lived experiences contribute towards a lack of clarity to identity. This is not adequately explained by the theoretical evidence base for identity. Main body This systematic review and narrative synthesis aimed to provide a conceptual framework to understand how identity of lived experience researchers and providers is conceptualised. A search strategy was entered into EBSCO to access Academic search complete, CINAHL, MEDLINE, PsycINFO, Psych Articles, and Connected papers. Out of the 2049 yielded papers, thirteen qualitative papers were eligible and synthesised, resulting in a conceptual framework. Five themes explained identity positions: Professional, Service user, Integrated, Unintegrated and Liminal. The EMERGES framework, an original conception of this review, found themes of: Enablers and Empowerment, Motivation, Empathy of the self and others, Recovery model and medical model, Growth and transformation, Exclusion and Survivor roots contributed to lived experience researcher and provider identities. Conclusions The EMERGES framework offers a novel way to understand the identities of lived experience researchers and providers, helping support effective team working in mental health, education, and research settings.

‘Keeping it real’: A qualitative exploration of preferences of people with lived experience for participation and active involvement in mental health research in Australia

“…Consistent with a recent framework for understanding lived experience identities, 23 people believe that the dual identity of people with lived experience as participant and professional needs to be recognised, explored and elevated to demonstrate value and respect. Lived‐experience researchers can sit in a liminal space, able to inhabit both consumer and professional research identities, both a critical ingredient and a dynamic often creating ambiguity and related difficulties 23,24 . These issues go to the heart of how experiential knowledge is valued within the hierarchies of academia and the dominant research agendas 25 .…”

“…The literature reflects growing initiatives to develop embedded lived experience research models, but participants still called for capacity‐building and training for consumer‐ and carer‐led research involvement, 2 consumers and researchers working in partnership across all stages of research, 9,11 the inclusion of more identified lived experience academic roles in Australian and international universities, 3 and service user leadership in research 11 . Consistent with a recent framework for understanding lived experience identities, 23 people believe that the dual identity of people with lived experience as participant and professional needs to be recognised, explored and elevated to demonstrate value and respect. Lived‐experience researchers can sit in a liminal space, able to inhabit both consumer and professional research identities, both a critical ingredient and a dynamic often creating ambiguity and related difficulties 23,24 .…”

“…Lived‐experience researchers can sit in a liminal space, able to inhabit both consumer and professional research identities, both a critical ingredient and a dynamic often creating ambiguity and related difficulties. 23 , 24 These issues go to the heart of how experiential knowledge is valued within the hierarchies of academia and the dominant research agendas. 25 As with any venture, related literature has documented other barriers and challenges to the involvement of people with lived experience in research.…”

Reflections on being an insider researcher: a study exploring the experiences of men accessing rural mental health services

“…Hoare et al (2012) suggested the blurring of roles depends on the researcher's role and relationships in the social and cultural context of the area of enquiry. Researchers who have used mental health or disability services themselves must navigate professional and personal aspects of their roles, which can be complex and lead to uncertainty in identity (Gupta et al 2023).…”

Participatory research with older people with a mental health condition and/or dementia: Tensions and challenges

“…All this has been concurrent with a development and repositioning of participatory research methods that sit within the wider methodological debates around lived experience research in mental health and other fields. 4 This has ridden the wave of change in research funding -so while dementia research funding is still comparatively low in some countries, there has been a shift in the understanding of research funders as to the research agenda, the refocusing on social research and with this, the willingness to fund work that focuses on experience. Indeed, the latest 'blueprint' for dementia researchers across the world, includes a call for the empowerment and engagement of people with lived experience in research.…”