Development of a research capacity and culture tool for people with lived experience of mental health challenges

Abstract

Objective:

This study investigated research capacity and culture in people with lived experience of mental health challenges by developing a quantitative tool that measures capacity to engage in research.

Method:

A cross-sectional, correlational methodology was employed, which comprised of three phases: lived experience consultations for item development (n = 15), item refinement (n = 20) and tool piloting. Items were adapted from, and extended, an existing research capacity and culture tool for healthcare workers. People (N = 112) with lived experience as mental health consumers, carers, peer workers and/or advocates aged 18–75 years took part in the tool piloting survey.

Results:

Overall, participants rated their individual research capacity and culture skills as moderate (mean = 5.41, standard deviation = 2.04). The most commonly reported barriers to research engagement related to lack of knowledge, familiarity or experience with the research process. The most commonly reported enablers were altruistic, such as using their experiences to improve services and help others. Research capacity and culture significantly correlated with current research activities (rs = 0.25–0.41; ps < 0.05), but not with being a research participant (r = 0.09; p > 0.05), suggesting that building research capacity of people with lived experience requires them to be active members of research teams.

Conclusion:

The Lived Experience research capacity and culture tool developed in this study revealed that people with lived experience of mental health challenges are intrinsically motivated to engage in research to improve consumer outcomes. The tool may be useful to assess self, research team and organisational preparedness to conduct genuinely co-designed research, and to assess changes in lived experience research capacities and culture over time.