Background The 2020 national review of deaths of people with learning disabilities (LeDeR) found that there are significant inequalities in the experiences of people with learning disabilities from minoritised ethnic groups compared to white British people, including earlier death. Also, within the general population, patients and families from minoritised ethnic groups are under-represented within palliative care services. Approaches to end-of-life care planning (EOLCP) are particularly culturally sensitive and diverse.
Aims To explore and understand the characteristics of effective and preferred EOLCP approaches and resources for people with learning disabilities from minoritised ethnic groups, their families and support staff.
Methods Focus groups and individual interviews were held with people with learning disabilities, family members, and support staff from minoritised ethnic groups. Data were analysed deductively using a framework matrix, organising and discussing the data in a visual way, thus enabling full-team involvement including four co-researchers with learning disabilities.
Results Study participants had a diverse range of ethnic backgrounds and nationalities. They expressed various perspectives on what EOLCP involves, when it should start, who should be involved, and how to do it. EOLCP was deemed very important as it was essential to respect the wishes of the person with a learning disability. Different cultural aspects were important to consider such as certain religious practices when someone approaches the end-of-life and different types of funerals depending on the person’s culture and ethnicity. The need for staff training in cultural awareness was highlighted, as was the importance of staff exploring the person’s culture and cultural needs rather than making assumptions.
Conclusions Including perspectives from minoritised ethnic groups are crucial to ensure that EOLCP interventions with people with learning disabilities are culturally sensitive and appropriate. Study findings will be used to inform a wider project developing an EOLCP toolkit for learning disability support staff.
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