Currently published as: Journal of Intellectual Disabilities and Offending Behaviour
Online from: 2010
Subject Area: Health and Social Care
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|Title:||Ten top tips for effectively involving people with a learning disability in research|
|Author(s):||Pamela Inglis, (Academic Head in Pre-registration Nursing School of Health Community and Education, Northumbria University, Newcastle, UK), Tina Cook, (Reader, Inclusive Methodologies, Northumbria University, Newcastle, UK)|
|Citation:||Pamela Inglis, Tina Cook, (2011) "Ten top tips for effectively involving people with a learning disability in research", Journal of Learning Disabilities and Offending Behaviour, Vol. 2 Iss: 2, pp.98 - 104|
|Keywords:||Consent, Ethics, Intellectual disability, Learning disabilities, Participation, Understanding research|
|Article type:||Research paper|
|DOI:||10.1108/20420921111152441 (Permanent URL)|
|Publisher:||Emerald Group Publishing Limited|
|Acknowledgements:||With acknowledgment to the men and staff from the medium secure unit.|
Purpose – Historically, people with learning disabilities have been the subjects of research, rather than true participants or contributors. Common approaches used to inform people with learning disabilities about research include simplifying information sheets and reading out the information. Literature to date suggests that little is known about what people with learning disabilities understand about research. This paper aims to address this issue.
Design/methodology/approach – A total of seven men and ten staff members were invited to become co-researchers with two academic researchers from Northumbria University, over 20 months. Lessons learned can now be used to: educate other adults; show how it can be helpful; and how it can make a difference in the lives of people with learning disabilities. This study used a facilitated collaborative action research approach involving participants becoming researchers in their own right, enabling collaborative discussions, and using multiple ways of engaging with, presenting and collecting information. A longitudinal and recursive process added breadth and depth to the data.
Findings – The findings showed that the men required some training including; research, consent and ethics and benefited from opportunities they otherwise may not have been offered such as; intellectual stimulation; extra staff attention; being accredited for their work; realising their own capabilities; increased self-esteem and confidence; pride in their achievements; skills development; and enjoyment. Importantly they have shown how valuable people with learning disabilities are to academic activity and research.
Research limitations/implications – The results suggest that the fun, longitudinal, recursive and collaborative approach, was key to developing understandings of research for the men.
Practical implications – From this research a framework was developed for engaging similar populations in research – entitled Understanding Research, Consent and Ethics: A Participatory Research Methodology in a Medium Secure Unit for Men with a Learning Disability, including accessible information; and ten top tips for effectively involving people with a learning disability in research.
Originality/value – This study discovered how men with learning disabilities and living in a medium secure unit understand research, consent, and ethics and what enables them to learn about these concepts.