Quality of life of family carers from different cultural backgrounds

Aim: To identify the quality of life of carers/parents who have children with intellectual disabilities (ID) from south Asian and White communities with a view to understanding differences in service access and family/community support.

Method: Thirty-eight carers (16 White and 22 Asian) were interviewed using a mixed-methods approach including adaptive behaviour scale, family quality of life measure, semi-structured interviews and participant observation.

Results: Mothers were the main family carer from both communities. Asian carers reported difficulties around access to services, with too little guidance from an early stage and lack of knowledge of the health system. Generally, services were unsuccessful at trying to match specialists speaking the same language with people with ID and their carers. Carers reported that services were not tailored to specific cultural needs of their children. Both White and Asian carers wanted more support from extended family and from their own community.

Conclusions: In general both communities of carers were not satisfied with their overall quality of life. Literature highlighting the barriers that carers have accessing services was further highlighted in this study, as well as the many differences faced by both Asian and White families.