Bruun, Andrea;
Jordan, Leon;
Giles, Jo;
Hughes, Rhidian;
Anderson-Kittow, Rebecca;
Tuffrey-Wijne, Irene;
(2025)
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
, 24
(1)
, Article 13. 10.1186/s12904-025-01646-0.
Preview |
Text
s12904-025-01646-0 (1).pdf - Published Version Download (1MB) | Preview |
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.
| Type: | Article |
|---|---|
| Title: | Don’t assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1186/s12904-025-01646-0 |
| Publisher version: | https://doi.org/10.1186/s12904-025-01646-0 |
| Language: | English |
| Additional information: | Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. |
| Keywords: | End-of-life care planning Palliative care, Intellectual disability, Death, Social care, Social services, Minoritised ethnic groups |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Language and Cognition |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10203518 |
Archive Staff Only
 |
View Item |
