Final published version
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Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
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TY - JOUR
T1 - Barriers to Healthcare for People With a Learning Disability From Ethnic Minorities
T2 - Perspectives of Self‐Advocates and Carers
AU - Cooper‐Moss, Nicola
AU - Umpleby, Katie
AU - Roberts, Christina
AU - Garner, Christie
AU - Edwards, Aisha Hazel
AU - Ditzel, Nicola
AU - Butt, Jabeer
AU - Clark, Samantha
AU - Hatton, Christopher
AU - Chauhan, Umesh
PY - 2024/12/11
Y1 - 2024/12/11
N2 - Background: People with a learning disability from ethnic minorities experience barriers in their access to healthcare services and poorer health outcomes. This study aimed to explore the factors that contribute to these barriers and to better understand how they can be reduced. Methods: Twenty ‘experts by experience’ took part in experience‐based co‐design workshops to ascertain how lived experiences related to findings from a co‐designed scoping review. Audio recordings were transcribed and analysed using framework analysis. Findings: Self‐advocates and carers experienced discrimination within a range of healthcare settings; however, recognising and understanding the source was difficult. Many people reported a lack of reasonable adjustments or support services that considered their ethnic identities. Participants also experienced isolation and stigma within their own family and community networks. Access to healthcare was adversely affected by COVID‐19. Many people were unaware of the Learning Disability Register and there was insufficient support when transitioning between healthcare services. Conclusions: Services can be improved by effective communication, continuity of care and an enhanced understanding of the experiences of learning disability across different ethnic groups. Understanding an individual's needs and preferences from the first point of contact is important for the allocation of resources.
AB - Background: People with a learning disability from ethnic minorities experience barriers in their access to healthcare services and poorer health outcomes. This study aimed to explore the factors that contribute to these barriers and to better understand how they can be reduced. Methods: Twenty ‘experts by experience’ took part in experience‐based co‐design workshops to ascertain how lived experiences related to findings from a co‐designed scoping review. Audio recordings were transcribed and analysed using framework analysis. Findings: Self‐advocates and carers experienced discrimination within a range of healthcare settings; however, recognising and understanding the source was difficult. Many people reported a lack of reasonable adjustments or support services that considered their ethnic identities. Participants also experienced isolation and stigma within their own family and community networks. Access to healthcare was adversely affected by COVID‐19. Many people were unaware of the Learning Disability Register and there was insufficient support when transitioning between healthcare services. Conclusions: Services can be improved by effective communication, continuity of care and an enhanced understanding of the experiences of learning disability across different ethnic groups. Understanding an individual's needs and preferences from the first point of contact is important for the allocation of resources.
KW - health inequalities
KW - discrimination
KW - ethnic minority
KW - learning disability
KW - intellectual disability
U2 - 10.1111/bld.12636
DO - 10.1111/bld.12636
M3 - Journal article
JO - British Journal of Learning Disabilities
JF - British Journal of Learning Disabilities
SN - 1354-4187
ER -