Abstract: This article describes the experience of involving Deaf people who use sign language in a project about Deaf people's lived experience of dementia. The researchers report how they overcame the challenges they faced in following best practice in involvement. Firstly, because there is very little recorded knowledge in sign language (any information written in English is effectively in a different language), it was difficult to share evidence of the issue being studied. The researchers also had to go to great lengths to develop trust with the community. One of the researchers is Deaf and uses sign language, which helped to create new relationships. However she didn’t have direct experience of dementia and therefore needed to involve people with both types of experience to design a project that would reflect their interests and needs. She consulted the community to inform her involvement practice, which helped to reveal the scale of the challenges involved. The authors conclude with a series of recommendations for authentic public and patient involvement practice with Deaf sign language users, as well as considering more generally the barriers to Deaf people's involvement in health and social care research.
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Categories: journal article researchers general principles of good practice lessons from direct experience of involvement involving seldom heard groups people with communication difficulties
Date Entered: 2019/01/08
Date Edited: 2019/01/08