Views and experiences of older family carers with special reference to ethnicity

Raghu Raghavan, Reader in Disability and Mental Health
Northumbria University, Newcastle upon Tyne

The White Paper Valuing People (Department of Health, 2001) estimates that one third of people with learning disabilities living in the family home are living with a carer aged 70 or over. Many of these older carers have often been caring for years with very little support from services. There is considerable evidence that inequality and exclusion are characteristics of the experiences of South Asian communities in the United Kingdom. Many South Asian families may have more than one disabled child in the family, and some of these people may have severe and complex learning disabilities which place the families under severe stress. The prevalence of severe learning disability in the Asian community is approximately three times higher than the non-Asian community. Many South Asian families supporting a child or adult with learning disabilities at home often do so in the face of considerable social and economic adversity, poverty and poor housing and carers having little support outside the family.

Although people from Black Minority and Ethnic (BME) background have been present in large numbers in the UK since the second World War, research in the last two decades show that many of these people face inequalities, discrimination and disadvantage in our society. The UK is a multi-cultural society which consists of diverse family and cultural patterns and these differ among ethnic groups. The multi-cultural nature of the UK population means that there are diverse perspectives on family responsibilities where norms and beliefs about family responsibilities are not easily identifiable. What we do know about family responsibilities and obligations are based on social class and gender differences. Family life is an important and integral part of South Asian life but is rarely explored in the British context.

This paper will explore the views and experiences of older carers (50+) from White and South Asian community in a metropolitan city in the North of England with a son/daughter with learning disabilities. A total of twenty five older carers from White and South Asian communities (Indian, Pakistani and Bangladeshi) were interviewed to explore their experiences of caring for their son/daughter. The themes explored consisted of accommodation, friendships and relationships, social life, short term breaks for the carer and their son/daughter, day activities of the carer, support from services, racism and stigma, information and understanding about services and future planning. This paper will compare the views and experiences of the family carers with a son/ daughter with learning disabilities from White British families and South Asian families.