University of Leeds: Researchers say include minority communities in health policy after British Muslims dealt with 'hidden work' during Covid pandemic

It found that language barriers, problems using or accessing smartphones and uncertainty about how to access information led to a sense of exclusion from COVID-19-related policies and messaging for this population. An apparent lack of consideration of important festivals in the Muslim calendar in the implementation of policies around lockdowns only exacerbated the problem, they found.

The researchers say that this highlights the need for people from minority ethnic groups to be involved in the design and delivery of health and care policies and messaging.

Zara Mohammed, Secretary General of the Muslim Council of Britain, said: “As the elderly population continues to grow, British Muslims face significant challenges due to the increasing need for comprehensive palliative care—an issue made even more urgent by the devastating effects of the pandemic. The disproportionate impact of this issue must be addressed. I commend this important body of research for shedding light on the issue and offering the relevant recommendations to guide the way forward.”

The research project was a collaboration between the University of Leeds, University College London (UCL), the Muslim Council of Britain and Marie Curie, which funded the study, and was led by Dr Briony Hudson from UCL.

To investigate the experiences of British Muslims accessing palliative care during the pandemic, the study team recruited three peer researchers from Pakistani Asian ethnic groups who spoke multiple languages including Urdu, Punjabi, French and English. They were all part of the Muslim Council of Britain Research and Documentation Committee. They conducted 11 telephone interviews between August and September 2021, with five British Muslims with palliative care needs and seven family carers.

The interviews showed that the pandemic had exacerbated existing challenges to accessing health care services for British Muslims with palliative care needs. Family members reported experiencing the cumulative impact of supporting people with palliative needs while also advocating for and supporting them to access the care they required.

Dr Gemma Clarke, Senior Research Fellow in the University of Leeds’ Academic Unit of Palliative Care, said: "Our study provides a unique view on the experiences of British Muslims during the pandemic. It shows the hidden work, challenges and emotional stress taken on by carers during this time. The findings highlight how crucial it is that people from minority backgrounds are consulted when healthcare policies are designed to avoid marginalising populations, especially during vulnerable times in their lives. We hope that our findings will help shape future delivery of culturally aware and inclusive healthcare.”

Co-author Dr Nuriye Kupeli, Principal Research Fellow in the UCL Division of Psychiatry’s Marie Curie Palliative Care Research Department, added: “By exploring and understanding the needs of people from minority backgrounds, including British Muslims, we can work in partnership to build trust, inform future service and policy development and reduce exclusion.”

The research team made several recommendations, including that healthcare providers and organisations must try to understand their local context and population and consider this in the development, delivery and communication about their services.

A Department of Health and Social Care spokesperson said: “We want a society where every person, their families and carers receive high-quality, compassionate care, from diagnosis through to end of life. We recognise the COVID-19 pandemic exposed and, in some cases, exacerbated existing inequalities within our healthcare system, particularly among some ethnic groups. The government is committed to addressing these disparities and ensuring all communities have equal access to healthcare.”