Majority and Minority Ethnic Family Carers of Adults with Intellectual Disabilities: Perceptions of Challenging Behaviour and Family Impact
Chris Hatton,
Eric Emerson,
Suzanne Kirby,
Homayra Kotwal,
Susannah Baines,
Christine Hutchinson, Catherine Dobson, Bob Marks,
Chris Hatton
Centre for Disability Research, Lancaster University, Lancaster, UK
Search for more papers by this authorEric Emerson
Centre for Disability Research, Lancaster University, Lancaster, UK
Search for more papers by this authorSuzanne Kirby
Centre for Disability Research, Lancaster University, Lancaster, UK
Search for more papers by this authorHomayra Kotwal
Centre for Disability Research, Lancaster University, Lancaster, UK
Search for more papers by this authorSusannah Baines
Centre for Disability Research, Lancaster University, Lancaster, UK
Search for more papers by this authorChris Hatton,
Eric Emerson,
Suzanne Kirby,
Homayra Kotwal,
Susannah Baines,
Christine Hutchinson, Catherine Dobson, Bob Marks,
Chris Hatton
Centre for Disability Research, Lancaster University, Lancaster, UK
Search for more papers by this authorEric Emerson
Centre for Disability Research, Lancaster University, Lancaster, UK
Search for more papers by this authorSuzanne Kirby
Centre for Disability Research, Lancaster University, Lancaster, UK
Search for more papers by this authorHomayra Kotwal
Centre for Disability Research, Lancaster University, Lancaster, UK
Search for more papers by this authorSusannah Baines
Centre for Disability Research, Lancaster University, Lancaster, UK
Search for more papers by this authorAbstract
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.
References
- J. Blacher & B. L. Baker (eds) (2002) The Best of AAMR: Families and Mental Retardation: A Collection of Notable AAMR Journal Articles Across the 20th Century. American Association on Mental Retardation, Washington DC.
- Blacher J. & Baker B.L. (2007) Positive impact of intellectual disability on families. American Journal on Mental Retardation 112, 330–348.
- Blacher J. & Hatton C. (2007) Families in context. In: Handbook on Developmental Disabilities (eds S. Odom, R. Horner, M. Snell & J. Blacher), pp. 531–551. Guilford, New York.
- Blacher J. & McIntyre L. L. (2006) Syndrome specificity and behavioural disorders in young adults with intellectual disability: cultural differences in family impact. Journal of Intellectual Disability Research 50, 184–198.
- Chamba R., Ahmad W., Hirst M., Lawton D. & Beresford B. (1999) On the Edge: Minority Ethnic Families Caring for a Severely Disabled Child. The Policy Press, Bristol.
- Creswell J. (1998) Qualitative Inquiry and Research Design Choosing Among Five Traditions. Sage Publications, London.
- Eisenhower A. & Blacher J. (2006) Mothers of young adults with intellectual disability: multiple roles, ethnicity and well-being. Journal of Intellectual Disability Research 50, 905–916.
- Emerson E. (2003) Mothers of children and adolescents with intellectual disability: social and economic situation, mental health status, and the self-assessed social and psychological impact of the child’s difficulties. Journal of Intellectual Disability Research 47, 385–399.
- Emerson E. & Hatton C. (2009) Socio-economic position, poverty, and family research. International Review of Research in Mental Retardation 37, 97–129 .
- Emerson E. & Llewellyn G. (2008) The mental health of Australian mothers and fathers of young children at risk of disability. Australian & New Zealand Journal of Public Health 32, 53–59.
- Emerson E., Robertson J. & Wood J. (2004) Levels of psychological distress experienced by family carers of children and adolescents with intellectual disabilities in an urban conurbation. Journal of Applied Research in Intellectual Disabilities 17, 77–84.
- Emerson E., Graham H. & Hatton C. (2006a) The measurement of poverty and socio-economic position in research involving people with intellectual disability. International Review of Research in Mental Retardation 32, 77–108.
- Emerson E., Hatton C., Blacher J., Llewellyn G. & Graham H. (2006b) Socio-economic position, household composition, health status and indicators of the well-being of mothers of children with and without intellectual disability. Journal of Intellectual Disability Research 50, 862–873.
- Emerson E., Fujiura G. & Hatton C. (2007) International perspectives. In: Handbook on Developmental Disabilities (eds S. Odom, R. Horner, M. Snell & J. Blacher), pp. 593–613. Guilford, New York.
- Emerson E., McCulloch A., Graham H., Blacher J., Llewellyn G. & Hatton C. (under review) The mental health of parents of young children with and without developmental delays. British Journal of Psychiatry (under review).
- Fujiura G. T. & Yamaki K. (1997) Analysis of ethnic variations in developmental disability prevalence and household economic status. Mental Retardation 35, 286–294.
- Gabel S. (2004) South Asian Indian cultural orientations toward mental retardation. Mental Retardation, 42, 12–25.
- Garg A. (2007) Racism at work: Indian doctors’ and their wives’ well-being. PhD dissertation, Lancaster University, Lancaster, UK.
- Harry B. (1992) An ethnographic study of cross-cultural communication with Puerto Rican-American families in the special education system. American Educational Research Journal 29, 471–494.
- Hastings R. P. (2002) Parental stress and behaviour problems in children with developmental disability. Journal of Intellectual & Developmental Disability 27, 149–160.
- Hatton C. (2002) People with intellectual disabilities from ethnic minority communities in the US and the UK. International Review of Research in Mental Retardation 25, 209–239.
-
Hatton C. (2004) Cultural issues. In: The International Handbook of Applied Research in Intellectual Disabilities (eds
E. Emerson,
C. Hatton,
T. Thompson &
T. Parmenter), pp. 41–60. Wiley, Chichester.
10.1002/9780470713198.ch2 Google Scholar
- Hatton C. & Emerson E. (2009) Does socio-economic position moderate the impact of child behaviour problems on maternal health in South Asian families with a child with intellectual disabilities? Journal of Intellectual and Developmental Disabilities 34, 10–16.
- Hatton C., Azmi S., Caine A. & Emerson E. (1998) People from the South Asian communities who care for adolescents and adults with intellectual disabilities: family circumstances, service support and carer stress. The British Journal of Social Work 28, 821–837.
- Hatton C., Akram Y., Robertson J., Shah R. & Emerson E. (2003) The disclosure process and its impact on South Asian families with a child with severe intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 16, 177–188.
- Hatton C., Akram Y., Shah R., Robertson J. & Emerson E. (2004) Supporting South Asian families with a child with severe disabilities. Jessica Kingsley, London.
-
Hensel E.,
Krishnan M.,
Saunders K.,
Durrani N. &
Rose J. (2005) Impact of policy shifts on South Asian carers in the United Kingdom.
Journal of Policy & Practice in Intellectual Disabilities
2, 10–17.
10.1111/j.1741-1130.2005.00003.x Google Scholar
- Llewellyn G., Dunn P., Fante M., Turnbull L. & Grace R. (1999) Family factors influencing out-of-home placement decisions. Journal of Intellectual Disability Research 43, 219–241.
- Magana S. (1999) Puerto Rican families caring for an adult with mental retardation: the role of familism. American Journal on Mental Retardation 104, 466–482.
-
McCubbin H. I. &
Patterson J. M. (1983) The family stress process: The double ABCX model of family adjustment and adaptation.
Marriage and Family Review
6, 7–37.
10.1300/J002v06n01_02 Google Scholar
- Neely-Barnes S. & Marcenko M. (2004) Predicting impact of childhood disability on families: results from the 1995 National Health Interview Survey Disability Supplement. Mental Retardation 42, 284–293.
- Noble M., Wright G., Dibben C., Smith G., McLennan D. & Anttila C. (2004) Indices of Deprivation 2004. Report to the Office of the Deputy Prime Minister. Neighbourhood Renewal Unit, London.
- Olsson M. B. & Hwang C. P. (2008) Socioeconomic and psychological variables as risk and protective factors for parental well-being in families of children with intellectual disabilities. Journal of Intellectual Disability Research 52, 1102–1113
- Park J., Turnbull A. P. & Turnbull H. R. (2002) Impacts of poverty on quality of life in families with children with disabilities. Exceptional Children 68, 151–170.
- Seltzer M. M., Floyd F. J. & Hindes A. R. (2004) Research methods in intellectual disabilities: the family context. In: International Handbook of Applied Research Methods in Intellectual Disabilities (eds E. Emerson, C. Hatton, T. Thompson & T. Parmenter). Wiley, Chichester.
- Singer G. H. (2006) Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. American Journal on Mental Retardation 111, 155–169.
- Skinner D. & Weisner T.S. (2007) Sociocultural studies of families of children with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews 13, 302–312.
-
Smith J. A. (1995) Semi-structured interviewing and qualitative analysis. In: Rethinking Methods in Psychology (eds
J. A. Smith,
R. Harre &
L. Van Langenhove), Pp. 9–26. Sage, London.
10.4135/9781446221792.n2 Google Scholar
- Smith J. A. (1996) Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychology and Health 11, 261–271.
-
Smith J. A.,
Jarman M. &
Osborn M. (1999) Doing interpretative phenomenological analysis. In: Qualitative Health Psychology: Theories and Methods (eds
M. Murray &
K. Chamberlain), pp. 218–240. Sage, London.
10.4135/9781446217870.n14 Google Scholar
- Todd S. & Shearn J. (1996) Struggles with time: the careers of parents of adult sons or daughters with learning disabilities. Disability & Society 11, 379–402.
- Turnbull A.P., Summers J.A., Lee S.-H. & Kyzar K. (2007) Conceptualization and measurement of family outcomes associated with families with individuals with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews 13, 346–356.
