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Majority and minority ethnic family carers of adults with intellectual disabilities: perceptions of challenging behaviour and family impact
- Authors:
- HATTON Chris, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(1), January 2010, pp.63-74.
- Publisher:
- Wiley
A health service in an English city was concerned about its support to families with adults with intellectual disabilities and challenging behaviour. 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. 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. 'Challenging behaviour' services need to be considered within a much broader social and community context.
Informal carers of adolescents and adults with learning difficulties from the south Asian communities: family circumstances, service support and carer stress
- Authors:
- HATTON Chris, et al
- Journal article citation:
- British Journal of Social Work, 28(6), December 1998, pp.821-837.
- Publisher:
- Oxford University Press
This article describes a survey in two metropolitan boroughs of people from the south Asian communities caring for people with learning difficulties aged 14 or over who were interviewed regarding family circumstances, service supports and levels of stress. In general, families were living in circumstances of material disadvantage and reported a high need for services, due to a lack of informal support and the considerable support needs of many of the people with learning difficulties. The implications of the findings for services are discussed.
The disclosure process and its impact on South Asian families with a child with severe intellectual disabilities
- Authors:
- HATTON Chris, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 16(3), September 2003, pp.177-188.
- Publisher:
- Wiley
Although several research studies have investigated parental experiences of the disclosure process in White families with a child with severe disabilities, little work has focused on the experiences of South Asian families. This study aimed to provide a rich picture of the disclosure experiences of South Asian parents of a child with severe intellectual disabilities, using semi-structured qualitative interviews with 26 parents over two time points, and structured quantitative interviews with 136 parents. Parents reported variable experiences of the disclosure process, with many parents experiencing disclosure in the wrong language for them and most parents reporting little post-disclosure support. Parents identified good practice in disclosure as prompt disclosure in the appropriate language, with the partner present (where possible), with emotional support as part of the process, with clear and practical information, and linked to post-disclosure support from a keyworker. Good practice in disclosure was also associated with parental understanding of their child, and parents being more likely to mobilize informal and formal supports. The implications of these findings are discussed.