CCUES: Complex and Incurable Conditions: Understanding the views and Experiences of the South Asian community in Wolverhampton.
Funded by the National Big Lottery Community Fund, this project began in September 2018 and was completed by August 2019.
Role: Project Lead
Uptake of palliative care services amongst Black, Asian and Minority Ethnic (BAME) communities in the UK is significantly low. In concurrence with national findings, Wolverhampton palliative care provider and charity Compton Care observed low uptake of its services amongst the BAME community, most notably from the South Asian community.
To gain further insight and address the inadequacies faced by this group, Compton Care successfully secured funding from the National Big Lottery Community Fund in November 2018 to deliver a project which would capture the views, thoughts and experiences of Wolverhampton’s South Asian community when living with or supporting someone with an incurable illness.
Lead by Dr Karan Jutlla and supported by an Expert Advisory Group comprising representatives from the South Asian community and key service providers, the study captured the views of 596 people via one-to-one conversations, focus groups, roadshows and attendance at various events (of which 184 were Sikh, 82 were Hindu, 48 were Muslim, 34 were White British, 1 Polish and 247 were unassigned but of South Asian descent). Supported by the findings of the toolkit, a documentary was produced by way of feedback to the community and key stakeholders.
Analysis of the conversations revealed four key themes as to why South Asians were not accessing palliative care services:
Language barriers, particularly faced by older people whose first language is not English, caused difficulty when it came to seeking information about services.
Lack of awareness and understanding of services
Many of the South Asian community were not aware of the palliative care services available to them, with some having no knowledge of Compton Care.
When community members were asked what they consider the main challenges for using palliative care services, stigma remained a common answer – commonly known as a mark of disgrace associated with a particular circumstance, quality, or person.
Intergenerational differences and conflict
Evident from the study were the intergenerational differences within the South Asian community. For elder members there was the expectation from their children to care for them should they require it.
A number of recommendations were made based on the study namely; the importance of community engagement activities, working with an expert advisory group and the employment of a South Asian community Engagement worker. The project also revealed that people valued the production of a documentary to raise awareness both in the community and amongst healthcare professionals.