Reports launch today outlining new recommendations for engaging Somali and South Asian communities in planning ahead
Two new reports (Tie Your Camel First and Tea, Talk and Samosas) are launching today, detailing findings and recommendations from two pioneering projects aimed at engaging Somali and South Asian communities in planning ahead for their future care and treatment.
The projects were part of Compassion in Dying’s ambitious, two-year My Life, My Decision programme, which aimed to engage people aged over 50 to think about and plan their care in advance, helping to ensure they have the end-of-life care, and the death that’s right for them.
The reports are the culmination of two projects, one working with a group of older Somali women living in Tower Hamlets, London and one with a group of older South Asian women in Great Harwood, Lancashire. Compassion in Dying partnered with Women’s Health and Family Services for the former and with Age UK Lancashire for the latter. In both groups, the women were Muslim and most were unable to read or write in English. The projects aimed to inform the women about their rights to plan ahead for their future care and treatment and the benefits of doing so, and to develop new culturally appropriate approaches and resources in order to engage these and other Black, Asian and Minority Ethnic (BAME) and faith groups in Advance Care Planning.
The reports set out key recommendations for health and social care providers and other organisations working with Somali and South Asian communities, in order to better engage individuals and groups in planning ahead for their end-of-life care and treatment. The recommendations include a need for:
- Better awareness of religious and cultural beliefs
- Clearer communication between healthcare professionals and communities about organ donation and post-mortem examinations
- Greater access to interpreters in healthcare settings and written information in a range of languages
- Focusing on visual methods of communicating and recording information
- Acknowledging that different Advance Care Planning tools will be appropriate for different people and groups
Stacey Halls, My Life, My Decision programme manager at Compassion in Dying said:
“We knew before embarking on these projects that people from certain faiths and BAME groups have lower awareness of their rights to plan ahead and more difficulty accessing information about their health and care that the wider population.
“These hugely rewarding projects provided us with rich insights into the values held and barriers faced by the Somali and South Asian communities in terms of end-of-life care and treatment. We hope that our recommendations go some way to demonstrate what needs to be done to ensure that people from these and other BAME and faith groups are able to engage in Advance Care Planning so that they receive the end-of-life care that’s right for them.
“The project also allowed us to support two groups of women who had no prior awareness of their rights and choices for end-of-life care. As a result of the workshops, the majority of the Somali women recorded their wishes and preferences using a Visual Advance Statement Form that was developed as part of the project. Of the South Asian women, most completed a short Advance Statement form and all of them were clear that they would consider making a Lasting Power of Attorney for Health and Welfare to give family members legal authority to make decisions on their behalf if they were to lose capacity in future.”
Fousia Duale, a Community Development Worker at Women’s Health and Family Services, explained:
“Many of the Somali women we work with haven’t got family and have no one to speak for them. Having something written down is very useful. They thought the only person who can make a decision is the doctor. They felt they had no choice at all... now they know they have a choice for everything. It has built up their confidence and they have been given voices.”*
One of the members of the South Asian women’s group added:
“We thought we had to obey orders, whatever has been said… Now we are more confident. We know our rights. First we didn’t know we had any options – now we know we have got a say.”
The reports can be accessed in full and downloaded from the following links:
Tie Your Camel First: Planning ahead for the end of life with the Somali community
Tea, Talk and Samosas: Planning ahead for the end life with the South Asian community
