Experiences of Black and Ethnic Minority Carers

Healthwatch Greenwich wanted to understand the extent to which the needs of Black carers and those from ethnic minority backgrounds are being met by current service provision.  They recruited eight co-researchers who were carers and from Black and ethnic minority backgrounds to undertake 38 interviews with carers and two with professional stakeholders.

The report found that carers view their role as both rewarding and challenging. Initially, carers view their role supporting their loved one as a natural part of life. However, as time progresses, they undergo a shift in awareness, recognising the evolution from offering support to assuming the full responsibilities of an informal carer. This includes coordination of medical care, practical and domestic help, and offering personal care. Over time, managing both carer responsibilities and work or family commitments, becomes increasingly challenging. 

Carers’ experiences are influenced by cultural sensitivity and intersectionality as they relate to factors such as language, ethnicity, judgment/bias, immigration status, disability, dietary preferences, gender-related preferences, and cultural expectations associated with being a carer. These intersecting identities shape how carers navigate their roles and access support. For instance, language barriers can hinder effective communication leading to misunderstandings and inadequate support. Ethnicity and cultural background can influence care expectations and beliefs about health and illness, directing the types of support sought and accepted by carers. Moreover, judgment and bias from others, whether based on race, disability, or other factors, can lead to feelings of isolation and discrimination among carers, reducing their ability to seek help and support. Failure to consider cultural and intersectional perspectives in the provision of support and services further marginalises carers from Black and ethnic minority backgrounds and perpetuates disparities in access to information, services, and support. 

The health and wellbeing of carers is affected across all aspects of their lives, personal, emotional, social, and financial. On a personal level, the demanding nature of being a carer can lead to physical exhaustion, and carers often neglect their own health needs. Emotionally, the constant stress and worry associated with caring for a loved one can take a significant toll. Moreover, finding out which services are available and how to access them is also problematic. Carers spoke of feelings of guilt, frustration, and helplessness, as well as anxiety and depression because of the challenges they face. 

The emotional burden of being a carer can erode self-esteem and overall wellbeing. Socially, the demands of being a carer can lead to withdrawal from previously enjoyed activities. Carers find it difficult to maintain social connections and engage in leisure pursuits due to time constraints and the demands of being a carer. This can lead to feelings of loneliness and disconnection, impacting mental well-being and their overall quality of life. Financially, carers find it hard to access information about their benefits, rights, and entitlements. Carers often use their own money to look after their loved one, putting a strain on their financial resources. In addition, the need to reduce or stop paid employment to look after their loved one results in loss of income and further financial instability. Financial stressors add to the overall burden on carers' health and wellbeing.

Insights from professional stakeholders highlight the need for greater awareness of existing services, and more community outreach and engagement. However, it is disheartening to see that despite awareness of the need to improve information, support, and services for carers from Black and ethnic minority communities, little substantive action has been taken. Indeed, instead of proactively addressing barriers that prevent many Black and ethnic minority carers from accessing information, support and services, emphasis is often placed on these communities as being difficult to reach out to/engage with and wilfully choosing not to use existing resources. However, our report suggests that it is not that Black and ethnic minority carers do not want to use available resources; it is that the available resources do not meet their needs, perpetuating a cycle of exclusion and marginalisation. 

Despite facing challenges, carers appreciate the help received from health and social care professionals and support agencies. However, support for Black and ethnic minority carers should be strengthened with greater cultural sensitivity, recognition of the impact of intersectionality, improved communication, greater consistency in support offered, and more accessible and equitable services.