Involvement of People with Intellectual Disabilities and Their Carers in Research
Journal of Psychosocial Rehabilitation and Mental Health - Trang 1-7 - 2023
Tóm tắt
The Black, Asian and/or minority ethnic (BAME) community is greatly underrepresented in research. This underrepresentation is further emphasised in the Intellectual Disability (ID) population. As people with ID (PWID) are already underrepresented in research, people with ID from BAME communities could be experiencing a double jeopardy (a disadvantage incurred from two sources at the same time). Barriers could include stigma, lack of awareness and skills among researchers, feelings of being judged, concerns about confidentiality and lack of awareness among researchers with a lack of meaningful inclusive approaches. This article describes the views of carers of PWID from BAME communities. It discusses their view of participation in research and additional support and approaches needed to promote meaningful inclusion of PWID from BAME communities. During focus groups, the Carers provided a number of suggestions which include considering diversity, additional measures to improve inclusivity and accessibility of the content of a training programme designed to involve PWID in research. Overall, the feedback gained indicates the need for a personalised approach where participants and researchers are able to get to know each other well enough before this population can openly share experiences without fear of being judged. This suggests the need for a sustained effort in creating a diverse community of PWID and their Carers who can contribute to research and service developments in a meaningful way.
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