Don’t assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups
Abstract Background People with intellectual disabilities are less likely to have access to palliative care, and the evidence shows that their deaths are often unanticipated, unplanned for, and poorly managed. Within the general population, people from minoritised ethnic groups are under-represented...
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| Format: | Article |
| Language: | English |
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BMC
2025-01-01
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| Series: | BMC Palliative Care |
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| Online Access: | https://doi.org/10.1186/s12904-025-01646-0 |
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| author | Andrea Bruun Leon Jordan Jo Giles Rhidian Hughes Rebecca Anderson-Kittow Irene Tuffrey-Wijne |
| author_facet | Andrea Bruun Leon Jordan Jo Giles Rhidian Hughes Rebecca Anderson-Kittow Irene Tuffrey-Wijne |
| author_sort | Andrea Bruun |
| collection | DOAJ |
| description | Abstract Background People with intellectual disabilities are less likely to have access to palliative care, and the evidence shows that their deaths are often unanticipated, unplanned for, and poorly managed. Within the general population, people from minoritised ethnic groups are under-represented within palliative care services. End-of-life care planning with people with intellectual disabilities from minoritised ethnic groups may be a way to address these issues. There is a huge gap in the evidence regarding intersectionality of intellectual disability and ethnicity within end-of-life care planning. This study explored the characteristics of effective and preferred end-of-life care planning approaches and resources for people with intellectual disabilities from minoritised ethnic groups. Methods Nine focus groups and three semi-structured individual interviews were held with 41 participants from minoritised ethnic groups (11 family carers; 25 support staff; and five people with intellectual disabilities). Session recordings were transcribed verbatim and analysed using the framework analytical approach. Results Participants thought that end-of-life care planning practices were dependent on the person’s culture, ethnicity, and religion, and that it was important to follow these at the end-of-life. They deemed it important to discover and respect (and not assume) the individual’s perspectives, values, needs, and wishes through a person-centred approach. Cultural attitudes to talking about death could hinder end-of-life care planning as participants perceived it as taboo. Disagreement was described as hindering end-of-life care planning, particularly when strong feelings about cultural and religious practices were involved. Staff highlighted the need for cultural and religious awareness, which could involve seeking information and receiving training. Opening the conversation about death and dying was seen as a potential facilitator for exploring end-of-life care planning. Conclusions The study was committed to addressing issues of equity, diversity, and inclusion. It is the first study to explore perspectives on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups. It was deemed important that staff did not assume but discovered and respected the views and preferences of people with intellectual disabilities regarding culture and religion. There is an urgent need for more research into end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups. |
| format | Article |
| id | doaj-art-c34125299a564026a5beb447bb1bb8ec |
| institution | Kabale University |
| issn | 1472-684X |
| language | English |
| publishDate | 2025-01-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj-art-c34125299a564026a5beb447bb1bb8ec2025-01-19T12:43:11ZengBMCBMC Palliative Care1472-684X2025-01-0124111210.1186/s12904-025-01646-0Don’t assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groupsAndrea Bruun0Leon Jordan1Jo Giles2Rhidian Hughes3Rebecca Anderson-Kittow4Irene Tuffrey-Wijne5Kingston University LondonKingston University LondonKingston University LondonVoluntary Organisations Disability GroupKingston University LondonKingston University LondonAbstract Background People with intellectual disabilities are less likely to have access to palliative care, and the evidence shows that their deaths are often unanticipated, unplanned for, and poorly managed. Within the general population, people from minoritised ethnic groups are under-represented within palliative care services. End-of-life care planning with people with intellectual disabilities from minoritised ethnic groups may be a way to address these issues. There is a huge gap in the evidence regarding intersectionality of intellectual disability and ethnicity within end-of-life care planning. This study explored the characteristics of effective and preferred end-of-life care planning approaches and resources for people with intellectual disabilities from minoritised ethnic groups. Methods Nine focus groups and three semi-structured individual interviews were held with 41 participants from minoritised ethnic groups (11 family carers; 25 support staff; and five people with intellectual disabilities). Session recordings were transcribed verbatim and analysed using the framework analytical approach. Results Participants thought that end-of-life care planning practices were dependent on the person’s culture, ethnicity, and religion, and that it was important to follow these at the end-of-life. They deemed it important to discover and respect (and not assume) the individual’s perspectives, values, needs, and wishes through a person-centred approach. Cultural attitudes to talking about death could hinder end-of-life care planning as participants perceived it as taboo. Disagreement was described as hindering end-of-life care planning, particularly when strong feelings about cultural and religious practices were involved. Staff highlighted the need for cultural and religious awareness, which could involve seeking information and receiving training. Opening the conversation about death and dying was seen as a potential facilitator for exploring end-of-life care planning. Conclusions The study was committed to addressing issues of equity, diversity, and inclusion. It is the first study to explore perspectives on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups. It was deemed important that staff did not assume but discovered and respected the views and preferences of people with intellectual disabilities regarding culture and religion. There is an urgent need for more research into end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups.https://doi.org/10.1186/s12904-025-01646-0End-of-life care planningPalliative careIntellectual disabilityDeathSocial careSocial services |
| spellingShingle | Andrea Bruun Leon Jordan Jo Giles Rhidian Hughes Rebecca Anderson-Kittow Irene Tuffrey-Wijne Don’t assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups BMC Palliative Care End-of-life care planning Palliative care Intellectual disability Death Social care Social services |
| title | Don’t assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups |
| title_full | Don’t assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups |
| title_fullStr | Don’t assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups |
| title_full_unstemmed | Don’t assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups |
| title_short | Don’t assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups |
| title_sort | don t assume ask a focus group study on end of life care planning with people with intellectual disabilities from minoritised ethnic groups |
| topic | End-of-life care planning Palliative care Intellectual disability Death Social care Social services |
| url | https://doi.org/10.1186/s12904-025-01646-0 |
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