Majority and minority ethnic family carers of adults with intellectual disabilities: Perceptions of challenging behaviour and family impact

Background A health service in an English city was concerned about its support to families with adults with intellectual disabilities and challenging behaviour. Methods Semi-structured interviews were conducted with seven minority ethnic and seven majority ethnic family members to explore perceptions of challenging behaviour, support and the impact of the person on the family. These were analysed using interpretative phenomenological analysis. Results Four themes emerged: (i) A broad range of difficulties with the adult with intellectual disabilities. (ii) Varied relationships with local communities in acceptance and support. (iii) Varied but largely negative relationships with services. (iv) Varied relationships with the person with intellectual disabilities, from highly dependent relationships with negative consequences to more fulfilling relationships. Families from minority ethnic communities were more likely to report negative experiences. Conclusions 'Challenging behaviour' services need to be considered within a much broader social and community context.