Title

EMPOWERING PEOPLE EXPERIENCING USHER SYNDROME AS PARTICIPANTS IN RESEARCH

Authors

Michelle Evans

Document Type

Document

Publication Date

2017

Abstract

Engaging people from marginalized groups such as the deafblind and Usher communities to participate in research has historically proved challenging, mainly due to communication differences between participants and researcher. This British article discusses the use of an approach called “Multiple Sensory Communication and Interview Methods” (MSCIM) during a qualitative research study involving 20 adults with Usher syndrome. Communication and interview methods were participant-led. Communication methods included clear speech, visual frame British Sign Language (BSL), hands-on BSL, deafblind manual, and written communication. Participants were given the choice to be interviewed face to face, over the telephone, via Skype (video or no video), or via email. The approach led to a measure of unexpected equalizing between the researched and the researcher and explored how empowering individuals from marginalized groups as active participants contributes to inclusivity and promotes trustworthiness in research. BRITISH JOURNAL OF SOCIAL WORK.

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