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Review
. 2023 Apr 24;9(1):26.
doi: 10.1186/s40900-023-00439-0.

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

Veenu Gupta  1   2 , Catrin Eames  3 , Laura Golding  4 , Beth Greenhill  4 , Robert Qi  4 , Stephanie Allan  5 , Alison Bryant  4 , Peter Fisher  4
Affiliations
Review

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

Veenu Gupta et al. Res Involv Engagem. .

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.

Keywords: Conceptual framework; Identity; Involvement; Lived experience; Mental health; Narrative review; Research; Service provider; Service user; Systematic review.

Plain language summary

Patients now commonly help to teach healthcare professionals from their own perspective of what it is like to experience health difficulties and healthcare services. Consequently, the needs of patients are being better recognised by healthcare providers. Patients are also involved in research. These types of patient involvement lead to improved research and care. Patients included in this type of work are frequently referred to as patient providers, service user researchers, peer workers, experts by experience or lived experience researchers and providers. This might mean they are no longer viewed as people who use services but as people who provide a service. This review helps us understand how those in these roles are affected and how they understand themselves. We found they were sometimes described as either patients or professionals. Sometimes they were described as both patient and professional at the same time. Other times they were described as somewhere between a patient or professional. There were other important ideas that affected how they viewed themselves because of these experiences. These included feelings of empowerment and motivation from doing this important teaching and clinical work. The roles gave them a better understanding of their own experiences. These roles led to a personal growth and sense of achievement. The experiences of exclusion, and of being a patient affected how patient providers think of themselves. This understanding can lead to patient providers being better understood and leads to better teaching and training of healthcare professionals.

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Conflict of interest statement

There are no competing interests or declarations to share.

Figures

Fig. 1
Fig. 1
PRISMA Flow diagram of selection process
Fig. 2
Fig. 2
A visual representation and summary of findings in the review
See this image and copyright information in PMC

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