‘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

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Abstract

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.

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