Majority and Minority Ethnic Family Carers of Adults with Intellectual Disabilities: Perceptions of Challenging Behaviour and Family Impact

Abstract

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.

The experiences of British South Asian carers caring for a child with developmental disabilities in the UK

“…Interestingly, the parents described getting a diagnosis and seeking medical help early on. This emphasis on early intervention and diagnosis is very distinct from other research in which South Asian parents often have low service uptake and receive later diagnoses of disabilities (Bywaters et al, 2003;Hatton et al, 2010). This may be influenced by the fact that the parents in the current study demonstrated higher levels of integration with British culture.…”

System‐Wide Information About Family Carers of Adults With Intellectual/Developmental Disabilities—A Scoping Review of the Literature

“…Some studies have found that parents and individuals with I/DD considered service accessibility, availability, flexibility of family‐focused services and staff who allow families and individuals with I/DD to maintain their independence as much as possible to be important (Barelds, van de Goor, Bos, van Heck, & Schols, ; Bigby, ; Caldwell & Heller, ; Gallivan‐Fenlon, ; Herman, Marcenko, & Hazel, ; Knox & Bigby, ; Freedman & Boyer, ; Rourke, Grey, Fuller, & Mcclean, ; Weller, ). Qualified, empathetic and culturally sensitive staff have also been identified as factors influencing satisfaction with services (Barelds, van de Goor, van Heck & Schols, , Grant, McGrath, & Ramcharan, ; Hatton et al., ; Hatton et al., ; Larsson & Larsson, ; Rourke et al., ; Shapiro, Monzo, Rueda, Gomez, & Blacher, ).…”

Family carers' perspectives on post‐school transition of young people with intellectual disabilities with special reference to ethnicity

“…Many South Asian communities face inequality in housing, employment and economic disadvantage. Higher levels of unemployment, lack of benefits and racism also adds greater psychological stress to these families (see Hatton et al . 2011).…”

“…2001). Higher rates of psychological distress among South Asian carers of children with ID have been found (Hatton et al . 2011).…”

“…Parental awareness of specialist services is low and hence there is low usage of family support services, respite care and short breaks (Hatton et al 1998;Mir et al 2001). Higher rates of psychological distress among South Asian carers of children with ID have been found (Hatton et al 2011). The combination of disadvantaged circumstances and difficulties in securing access to appropriate services, which are found for the majority of families with a disabled child, was particularly acute for the minority ethnic families (Fazil et al 2002;Hatton et al 2004).…”