Investigating health risk : people with learning disabilities and carers research questions Anita Young & Rosemary Chesson Health Services Research Group

Background  Involvement in research  Risk reduction in cardiac disease

Main aims  To determine the feasibility of involvement through a critical case  To develop and evaluate methods for inclusion early in the research cycle

Study design Qualitative methodology selected

Research methods  Interviews boardmaker pictures and photographs vignettes

Talking mats and vignette

Findings (1)  Willingness to take part  Research topic of interest to all  Methods effective  Confusion re ‘research’

Research example

Findings (2)  All participants identified: - health risks - research questions  78 questions developed

Findings (3)  Main topics included in questions - 21: understanding of symptoms/illness/risks - 18: staff assistance with healthy choices - 15: communication - 9: relationship of symptoms to disease

Findings (4)  Key themes emerging from questions 1support for healthy living 2communication about health 3access to healthcare 4health information sharing 5healthy behaviour/choice 6recognising and interpreting symptoms

Findings (5)  Themes validated using focus groups  6 final research questions  Voting for top question Validating themes

Findings (6) ‘Find out how everybody who looks after a person with learning disabilities can be told the important things for keeping that person healthy. (Find out how this can be done so that private things are kept private.)’ The Top Question

Conclusion  Users/carers identified research questions  Questions recognised the complexity of factors impacting on health  Methods were effective for inclusive research

Discussion ?Acceptability of user/carer questions to research community ?Fit with funding environment

Acknowledgements Thanks are due to:  all the participants  The Robert Gordon University and NHS Grampian who have provided funding