'So often they do not get recruited': exploring service user and staff perspectives on participation in learning disability research and the barriers that inhibit it. (16th January 2015)

• Record Type: Journal Article
• Authors: Crook, Bradley; Tomlins, Rose; Bancroft, Ann; Ogi, Laura
• Is Part Of: British journal of learning disabilities. Volume 44:Number 2(2016:Jun.)
• Page Start: 130
• Page End: 137
• Publication Date: 2015-01-16
• Subjects: Accessible research -- barriers -- inclusion -- learning disability -- research participation -- service user involvement; Learning disabilities -- Periodicals; Learning disabled -- Periodicals; Learning disabled children -- Periodicals; Learning disabled youth -- Periodicals; 362.3
• DOI: 10.1111/bld.12120
• Languages: English
• ISSNs: 1354-4187

Abstract

Abstract : Accessible summary: The government and NHS say it is important for people with learning disabilities to be able to take part in research if they want to. We asked five people with learning disabilities about participating in research. They said they wanted to participate in research to help make things better for other people with learning disabilities. They also said if research is not easy to understand, it can be hard for people with learning disabilities to take part. We also sent a questionnaire to clinicians working in a learning disabilities service. Thirty‐four clinicians replied. They said research with people with learning disabilities was important to help improve services. They said, sometimes it is difficult to find the time, money and support to do research. Summary: The importance of making research participation accessible for people with learning disabilities is emphasised in government and NHS research strategies. This evaluation explored the realities of this goal from the perceptions of people with learning disabilities and clinicians within an NHS learning disability service. People with learning disabilities participated in a focus group ( n = 5), and clinicians completed a questionnaire ( n = 34), to explore each groups' experience of research, and identify barriers that may prevent people with learning disabilities from participating. People with learning disabilities engaging in research was seen as essential to increase knowledge of learning disabilities, as well as promote development of appropriate services. Barriers to participation included ability, ethical considerations, practicalities and restriction by 'gatekeepers'. Clinicians also felt a lack of resources and support prevented them from fulfilling their roles within research. Implications and recommendations are discussed.