Improving Access to Palliative Care for South Asian Communities
Support for the South Asian community in Wolverhampton
Compton Care recently carried out two projects that assessed the uptake of palliative or end of life care amongst the South Asian community. One of our studies identified that only 3% of our patients were from a South Asian background. Below you can find out more about the two projects: CCUES and SOCH.
At Compton we believe that everyone should have access to care for an incurable condition, no matter your background. We have produced a variety of resources that should help people from a South Asian background to access palliative or end of life care. You can find documents about grief and support available in Urdu, Punjabi and Hindi. A film was also produced that can be used by family and friends to start the conversation about palliative and end of life care with someone with an incurable condition.
Advance Care Planning film - SOCH project
Complex and Incurable Conditions: Understanding the Views and Experience of the South Asian Community (CCUES)
Through a series of one-on-one conversations, focus groups, roadshows and events, Compton uncovered core challenges facing the South Asian community. These include deep-rooted stigma and shame associated with gaining external support, while others face intergenerational differences in opinion on what level of outside support is acceptable from outside the family. Language barriers and limited understanding of the types of services available, including Compton’s community care services (70%), also prevent this community from exploring palliative care options for themselves or a loved one.
In response, Compton Care has developed a series of industry recommendations, highlighting changes to practice designed to give greater access to services in a wider range of care settings. These span: increased investment into community engagement activities; ensuring literature is culturally appropriate and disseminated correctly; appointing dedicated employees to boost engagement with the South Asian community; nurturing and empowering champions and ambassadors responsible for providing support; delivering more personalised care and leading more targeted events for specific communities. Since completing the study, Compton has already begun to implement these changes in its services.
Rachel Overfield, CEO at Compton Care, said: “Compton Care is operating in one of the most diverse areas in the country, but patient data highlighted that we weren’t fully reaching and serving all the full breadth of our community, so it was really important to look at why and how we can change this. The findings gave us a clear understanding of the issues and the evidence to start making the right changes.
“I’d like to thank the National Lottery Community and Hospice UK, our specialist team and all those who got involved in the project for helping us to get to this point, enabling us to better educate and empower those in the South Asian community, while addressing the misconceptions about what we do so that more people will explore how we can help them.
“We have a strong desire to set a new standard for the services on offer to people with complex and incurable conditions, delivering person centred care through community designed services. We hope this project helps inform other palliative care organisations on what they can do or inspire them to look at their own communities and how they can best improve access to their services.”
Download the report and recommendations here.
In 2019, Compton Care carried out the CCUES study (further details in the CCUES drop down box below) enabling us to understand the views and opinions of palliative and end of life care in the South Asian community. The study identified several issues that act as a barrier for South Asian individuals to access this type of care. As a result of this study, Compton Care has produced a short video encouraging people from the South Asian community to plan for any type of incurable condition, any end of life care and funeral arrangements. This is called Advance Care Planning (ACP)
What is the video about?
The four minute Advance Care Planning awareness film, has been created with the intention of being used as a tool for professionals to begin conversations with people about Advance Care Planning. The video is also there to encourage the community to talk to family and friends about opportunities available to them in the form of Compton Care and other palliative care providers. The film has actors speaking in four South Asian languages and includes subtitles in English.
You can find the video here.