People from diverse backgrounds must be included in the development of healthcare policies to ensure all groups’ needs are met, new research into palliative care for the Muslim community has found.
The study investigated the experience of British Muslim people and their families who were accessing palliative care services during the COVID-19 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 this problem.
The researchers say that this highlights the need for people from minoritised ethnic groups to be involved in the design and delivery of health and care policies and messaging, to ensure that people from all backgrounds can access health care services, understand how to get the help they need, and advocate for their own and their family members’ needs, no matter what their background.
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 revealed 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 whilst also advocating for and supporting them to access the care they required.
The research team made several recommendations to address inequities in palliative care access, including:
- Research, services and policy should be developed in partnership with people experiencing inequity
- Healthcare providers and organisations must endeavour to understand their local context and population and consider this in the development, delivery and communication about their services.
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.”
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.”
The research project was a collaboration between the University of Leeds, University College London (UCL), Marie Curie and the Muslim Council of Britain. It was funded by Marie Curie and was led by Dr Briony Hudson from UCL.
Co-author Dr Nuriye Kupeli, Principal Research Fellow in the UCL Division of Psychiatry’s Marie Curie Palliative Care Research Department, said: “Our work highlights that while families and those closest to people living with life limiting illness took on additional caring responsibilities, they faced many challenges in accessing healthcare.
“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.”
