Res Involv Engagem. 2024 Jun 25;10(1):66. doi: 10.1186/s40900-024-00596-w.

ABSTRACT

BACKGROUND: Lived experience researchers draw on their lived and living experiences to either lead on or inform research. Their personal experiences are relevant to the research topic and so they must manage the interplay of their health and healthcare experiences with the research, population, and data they work with, as well as the more general challenges of being a researcher. Lived experience researchers must navigate these dilemmas in addition to queries over their competency, due to issues relating to intersectionality and epistemic injustice. This justifies a motivation to better understand the experiences of lived experience researchers and develop appropriate and personalised supervision based on their preferences and needs.

METHODS: Q methodology was used to identify a collection of identity-related issues that impact lived experience researchers during PhD research in the context of the UK. These issues were presented in the form of 54 statements to 18 lived experience researchers to prioritise as topics to explore in supervision.

RESULT: It was found that lived experiences researchers could be grouped into three distinct factors following an inverted factor analysis: Factor 1: Strengthening my identity, skills, growth, and empowerment; Factor 2: Exploring the emotional and relational link I have with the research and Factor 3: Navigating my lived and professional experiences practically and emotionally. The findings suggest that there may be three types of lived experience researchers, each with different needs from supervision, suggesting the population is heterogeneous.

CONCLUSION: The research identified a deeper understanding of the needs of lived experience researchers and highlights the importance of personalised supervision according to the individual needs of the researcher and their preferences for supervision. The findings reinforce the importance of integrating a clinical dimension into supervision to support the needs of all lived experience researchers.

PMID:38918822 | DOI:10.1186/s40900-024-00596-w