‘Getting involved in research’: a co-created, co-delivered and co-analysed course for those with lived experience of health and social care services

Author:

Blair CarolynORCID,Best Paul,Burns Patricia,Campbell Anne,Davidson Gavin,Duffy Joe,Johnston Anne,Kelly Berni,Killick Campbell,Dermott Denise Mac,Maddock Alan,McCartan Claire Jane,McFadden Paula,McGlade Anne,Montgomery Lorna,Patton Sonia,Schubotz Dirk,Taylor Brian,Templeton Fiona,Webb Paul,White Chris,Yap Jade

Abstract

AbstractBackground‘Getting Involved in Research’ was co-created and delivered by a multi-organisational group to provide an accessible introduction to research for those with lived experience of health and social care services.MethodThe evaluation of participants’ perceptions adopted an exploratory mixed method research design and aimed to gather data to provide an in-depth understanding of the participants’ experience of ‘Getting Involved in Research’ through the co-researchers’ analysis of qualitative data using Participatory Theme Elicitation (PTE). PTE was used with the qualitative data to promote co-analysis by the course development group; analyses from an independent academic was also used to further validate the method of PTE.ResultsThirty-five participants in total participated in ‘Getting Involved in Research’. Age ranges varied from 19 to 73 years old. Participants were predominately female (n = 24), five males participated (n = 5) and there was one participant who identified as non-binary (n = 1). Six core themes were identified using the PTE approach: (1) A Meaningful Participatory Approach (2) Increasing the Confidence of Participants (3) Interactive Online Format (4) An Ambient Learning Environment (5) A Desire for Future Courses (6) A Balance of Course Content and Discussion. Participants in ‘Getting Involved in Research’ reported that the content of the training was applicable, relevant, fostered awareness of research methods and anticipated that it would support their involvement in research.Conclusion‘Getting Involved in Research’ has contributed innovatively to the evidence base for how to engage with and motivate those who have experience of health and social care to become actively involved in research. This study demonstrates that ‘Getting Involved in Research’ may be helpful to train those with lived experience and their care partners however, further research following up on the application of the course learning would be required to ascertain effectiveness.Future directionsFuture research should explore methods to apply research skills in practice to further develop participants’ confidence in using the skills gained through ‘Getting Involved in Research’.

Funder

Disability Research on Independent Living and Learning and from HSC R&D Division, Public Health Agency

Publisher

Springer Science and Business Media LLC

Subject

General Health Professions,Health (social science)

Reference54 articles.

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2. National Institute for Health Research (NIHR). Going the extra mile: Improving the nation’s health and wellbeing through public involvement in research [Internet]. 2015 [cited 2022 Jan 22]. Available from https://www.nihr.ac.uk/documents/about-us/our-contribution-to-research/how-we-involve-patients-carers-and-the-public/Going-the-Extra-Mile.pdf

3. Sandhu B. The Need for Leadership and Organisational Development in the Social Sector The Value of Lived Experience in Social Change: The Lived Experience [Internet]. 2017 [cited 2022 Jan 22]. https://knowledgeequity.org/wp-content/uploads/2021/06/The-Value-of-Lived-Experience-in-Social-Change.pdf

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