Written by Andrea Bruun, Research Associate, Kingston University.
Is end-of-life care planning the same in every culture and religion? As you might have guessed, the correct answer is: No. As with everything else in life, the way we see the world is influenced by our culture and beliefs. To make sure our end-of-life care planning toolkit works for everyone (with different backgrounds, cultures, and religions), we held focus groups with people from minoritised ethnic groups. Here's a sneak peek of what we learned from these focus groups.
What did we do?
Our collaborator, VODG (Voluntary Organisations Disability Group), helped us out with this study, particularly with finding people to take part in the focus groups.
Nine focus groups and three interviews were held with people with learning disabilities, family carers, and support staff from minoritised ethnic groups.
We asked them about their views and experiences of end-of-life care planning. Our questions included specific ones about ethnicity, culture, and religion.
We video- or audio-recorded our conversations and got them transcribed. After having heard and looked at the transcripts of what everyone said, we found different themes.
What did we learn?
Here are six lessons we learned after having analysed the data:
End-of-life care planning is dependent on the person’s culture and religion; significant differences were found between different cultures and religions.
Culture and religion are important at the end-of-life and should be respected and followed.
A person-centred approach is needed to meet the cultural and religious preferences, needs, and wants of people with learning disabilities; assumptions should not be made, instead preferences should be explored.
Talking about death is difficult and a taboo in many cultures, hindering end-of-life care planning.
Learning disability support staff need to have cultural and religious awareness, which may involve them seeking information, getting training, and reaching out to community leaders.
Opening the conversation about death and dying was a potential facilitator for end-of-life care planning.
What are we doing next?
These lessons have helped us understand what our final toolkit of resources and approaaches need to involve to support learning disability staff in doing end-of-life care planning with people from a variety of backgrounds and cultures.
We are presenting our study findings as a poster at the Hospice UK Conference 2023 in Liverpool on 6-8th November. At the moment, we are also writing up the findings as a paper to be published in an academic journal. So watch this space!