The involvement of individuals with lived experience in research is thought to bring a number of benefits. For instance, lived experience in the research cycle has been found to improve: the relevance of research, the use of accessible language in research, the specificity of outcome measures, participant recruitment and retention, dissemination of findings and the chances of grant success (Brett et al., 2012; Clarke et al., 2017; Cooper et al., 2016; Domecq et al., 2014).
Despite the rise of state-wide (e.g. Sustainable Health Review, 2019), national (e.g. Australian National Mental Health Commission, 2022) and international (e.g. World Health Organisation, 2017) guidelines which emphasise the importance of involving people with lived experience, there still exists a gap in the lived experience research workforce.
McEvoy and colleagues in the current study aimed to investigate research capacity (‘developing enduring skills and abilities that enable both individuals and institutions to execute high-quality, evidence-based research to improve quality of care and outcomes for healthcare consumers’) and research culture (‘the research environment, including how institutions perceive research and allocate relevant resources’) in people with lived experience of mental health challenges. The authors aim to achieve this by developing a quantitative tool that measures capacity to engage in research.
This study aimed to develop a tool to measure individuals with lived experience capacity to engage with research.
Methods
Phase 1: Item development
15 consumers, carers and peer support workers took part in consultation focus groups investigating barriers and enablers of engagement with mental health research.
Phase 2: Item refinement
The research team used the information gathered from phase one to develop questionnaire items assessing each of the identified barriers and facilitators. Items from a previous research capacity and culture tool (Holden et al., 2012) were also added or adapted if relevant. The participants from phase one, as well as the project’s lived experience advisory group (N=5) reviewed the initial list of items to ensure language was appropriate and understandable.
Phase 3: Survey dissemination
The survey was finalised and distributed online to 112 individuals with lived experience. The survey asked participants to: provide demographic information, endorse which specific barriers and enablers were relevant to them engaging in mental health research, respond to a series of statements about research capabilities and skills using a Likert scale (1 = no success / skill, 10 = highest possible success / skill, 11 = unsure).
Results
- The 3 most common barriers to engaging with mental health research were limited experience in research, work commitments and being uncertain how to contribute
- The 3 most common enablers to engaging with mental health research were a desire to turn a challenging experience into one that benefits others, promoting positive change and a healthy culture and improving quality of services
- On average, participants rated their individual research capacity and culture skills as moderate (5.4/10)
- The 3 individual domain skills with the highest mean rating were finding, reading and understanding relevant literature, critically reviewing the literature and using a computer referencing system
- The 3 individual domain skills with the lowest mean rating were securing research funding, leading the development of a research proposal and contributing to ethics applications
- Those with higher levels of education (undergraduate and postgraduate study) rated their individual research capacity and culture skills higher than those whose highest level of education was high school
- There was a positive correlation between individual-level research capacity and culture scores with research engagement (total number of research activities and individual activities), though there was no relationship with contributing to research as a participant
The 3 most common barriers engaging with mental health research were limited research experience, work commitments and uncertainty on how to contribute.
Conclusions
This study found that individuals with lived experience face a wide range of barriers and enablers to engaging in mental health research. These tend to fall under practical, health, technical and interpersonal domains.
Individuals with lived experience rated themselves as having moderate research capacity and culture, though this was more common amongst those who had completed university degrees.
Finally, the greater an individual’s sense of research culture and capacity, the more likely they were to engage with mental health research, though not as a research participant.
Barriers and enablers to individuals with lived experience engaging in mental health research fall under practical, health, technical and interpersonal domains.
Strengths and limitations
A clear strength of this study is its involvement of individuals with lived experience. As the author notes, many of the most frequently endorsed barriers and enablers were derived from the consultation work completed as part of this study, as opposed to the tools that were already in existence. This highlights the importance of placing lived experience at the heart of the research cycle.
The authors highlight a number of limitations with the present study including the correlational design of the study and the small and potentially biased sample. Moreover, through reporting only on individual responses, the authors have not achieved their aim of describing research ‘culture’, and future research should aim to address this gap in the literature.
Whilst the authors have adequately captured the skills that may enable an individual to possess capacity to engage in research, I feel that this tool is largely missing key contextual factors. For instance, having the skills to do something is not the same as having the confidence to do it, and this feels too important to miss in the context of the power imbalance which exists between mental health services / research institutions and those with lived experience. I can’t help but feel that a more dynamic and nuanced tool is needed to assess research capacity. Roses in The Ocean, for instance, uses the concept of readiness’, whereby trained professionals ask peer workers whether they are comfortable with the amount of time that has passed since their lived experience, their motivations for becoming engaged in the work and their understanding of the work they are about to embark on. Perhaps a more qualitative approach such as this is appropriate for assessing research capacity and culture in those with lived experience.
Could a more dynamic and nuanced qualitative tool be more appropriate for assessing research culture and capacity?
Implications for practice
The authors report on some clear implications for practice including raising awareness of research opportunities beyond those of participation, capitalising on enablers by disseminating information about how research engagement may benefit others and providing resources such as seminars, workshops and mentoring to develop research skills in people with lived experience – particularly those without university degrees.
We need to raise awareness of research opportunities beyond just participating in research projects.
Statement of interests
Laura Hemming does not have any affiliation with the authors of this study.
Links
Primary paper
McEvoy, P. M., Horgan, B., Eadon, O. L., Yong, M. J., Soraine, J., & Chiu, V. W. (2022). Development of a research capacity and culture tool for people with lived experience of mental health challenges. Australian & New Zealand Journal of Psychiatry, 00048674221125597.
Other references
Australian National Mental Health Commission (2022) Consumer and carer engagement.
Brett J, Staniszewska S, Mockford C, et al. (2012) Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations 17: 637–650.
Clarke D, Jones F, Harris R, et al. (2017) What outcomes are associated with developing and implementing co-produced interventions in acute healthcare settings? A rapid evidence synthesis. BMJ Open 7: e014650.
Cooper K, Gillmore C and Hogg L (2016) Experience-based co-design in an adult psychological therapies service. Journal of Mental Health, 25, 36–40.
Domecq JP, Prutsky G, Elraiyah T, et al. (2014) Patient engagement in research: A systematic review. BMC Health Services Research 14: 89.
Holden L, Pager S, Golenko X, et al. (2012) Validation of the research capacity and culture (RCC) tool: Measuring RCC at individual, team and organisation levels. Australian Journal of Primary Health 18: 62–67.
Sustainable Health Review (2019) Sustainable Health Review: Final report to the Western Australian Government. Department of Health, Western Australia.
World Health Organization (2017) Helping people with severe mental disorders live longer and healthier lives.
Photo credits
- Photo by Clay Banks on Unsplash
- Photo by Diana Polekhina on Unsplash
- Photo by Kelly Sikkema on Unsplash
- Photo by Claudio Schwarz on Unsplash
- Photo by Tamara Bellis on Unsplash
- Photo by Volodymyr Hryshchenko on Unsplash
Using a tool to assess the ability of people with lived experience to take part in research, is demeaning and does nothing to open the academic world to those willing to use their mental health experience to expand research in that area. An assessment tool, judges the value of your experience and then you pass or fail. Not a great boost to confidence. I am part of a team of researchers who all have experience of mental health problems.We do not assess academic experience. We teach and show aspects of research to inexperienced researchers as they work as part of our team. The world of research can be accessible without higher levels of education.