PATHFINDER study

Why the research is needed?

Unpaid carers are central to supporting unwell and disabled people. They look after or/and support loved ones and friends because of long-term physical, mental health conditions and problems related to old age. The recent Family Resources Survey indicates that 4.2 million people, 6% of the UK population, provided unpaid care in 2020/21. According to the 2011 Census, there were approximately 600,000 Black and minority ethic carers in England and Wales. Of all ethnic groups, the Gypsy or Irish Traveller ethnic group had the highest percentage who identified as unpaid carers; accounting for 15.4% of females and 10.7% of males in England. However, there is a lot we do not know about the caring practices of isolated ethnic minority, Gypsy, Roma, and Travellers (GRT) carers. Our previous work with individuals from these communities, suggests that these caregivers face barriers in accessing support services, over and above those experienced by other carers. 

What is already known about the subject?

The health and wellbeing of many Somali and GRT carers deteriorates due to increased caring duties and other daily responsibilities. Additionally, ethnic minorities families place greater caring responsibilities on family members and themselves due to cultural perceptions that ‘caring for your own’, is an expected practice. The research also shows that lack of self-identification as a carer is a major issue amongst the carer’s population, but this is particularly noticeable amongst unpaid carers from ethnic minority communities. 

Who we will be working with? 

We will be working with community organisations and support groups that represent diverse groups of carers. 

How will patients and the public be involved?

This research is being led by the Centre for Ethnic Health Research who have done extensive work on several research programmes to reach and involve carer networks representing diverse often under presented populations. We will engage and undertake PPIE activities with these groups to co-produce and inform the research design related to study design (recruitment methods/location, feedback of research findings).

What will we do?

We have planned a two-phase approach to carry out this work. Following PPIE activities, we will conduct storytelling interviews with isolated carers (n=20) from ethnic minorities groups and GRT community to explore informal caring practices by those groups. We will ask broad questions about their experiences with support services (e.g., barriers/facilitators to access and engagement) with appropriate prompts. The second phase will engage with key stakeholders (e.g., health and social care commissioners and providers, social prescribers, and VCS partners), and work together to produce a good practice guide on how to consider approaches to make services more culturally appropriate for isolated carers from an ethnic minority background through two workshops. 

What will the benefits be for non-academic audiences?

The good practice guide will provide guidance and support to health and social care providers on conversations, approach and support that is relevant to minority communities, easing the burden on both carers and provider organisations. 

How will the research make a difference outside of academia? 

Findings from this research will be shared with Integrated Care Boards, social care providers, charities and community networks to shape future commissioning arrangements and service delivery for carers from marginalised groups.

When the findings will be available?

The findings from this research will be available in March 2026. 

Contact

Barbara Czyznikowska, Community Engagement and Inclusion Manager,Centre for Ethnic Health Research, bmc15@leicester.ac.uk.