The cultural context of care‐giving: qualitative accounts from South Asian parents who care for a child with intellectual disabilities in the UK
| Published date | 13 July 2012 |
| Date | 13 July 2012 |
| Pages | 179-191 |
| DOI | https://doi.org/10.1108/20441281211236580 |
| Author | Kuljit Heer,Michael Larkin,Ivan Burchess,John Rose |
| Subject Matter | Education,Health & social care |
The cultural context of care-giving:
qualitative accounts from South Asian
parents who care for a child with intellectual
disabilities in the UK
Kuljit Heer, Michael Larkin, Ivan Burchess and John Rose
Abstract
Purpose – This study aims to explore the cultural context of care-giving amongst South Asian
communities caring for a child with intellectual disabilities in the United Kingdom.
Design/methodology/approach – In the context of the United Kingdom’s Children’s Intellectual
Disability Services, the study set out to develop a culturally sensitive account of Sikh and Muslim
parents’ experiences of caring for a child with intellectual disabilities. Focus groups were conducted
with parents from Sikh and Muslim support groups who were all accessing intellectual disability services
for their children. Transcripts were ana lyzed using interpretative phenomenological analysi s,
a qualitative technique.
Findings – Three master themes emerged from the analysis which were: Making sense of the disability;
Feeling let down by services and Looking to the future. These themes reinforce findings from previous
research particularly in relation to difficulties when making sense of the disabilities and difficult
interactions with services.
Practical implications – The study makes recommendations for service delivery to ethnic minority
groups including being aware of intra-group variations in the interpretations and responses of
South Asian parents.
Originality/value – Ultimately, the study makes recommendations for developing culturally sensitive
support and interventions for ethnic minority groups which is important given the increase in multi-ethnic
populations in the UK.
Keywords Care-giving, National cultures, Intellectual disability, South Asia, Social care,
Learning disabilities, United Kingdom, Children (age groups), Ethnic minorities
Paper type Research paper
Introduction
British South Asian communities and intellectual disabilities
In the UK the term South Asian usually refers to people who originate from India, Pakistan,
Bangladesh and Kashmir (British Sociological Association, 2005). The prevalence of
intellectual disabilities amongst South Asians aged between five and 32 has been shown to
be three times higher than any other community in the UK with 19 per cent of families caring
for more than one member with an intellectual disability (Azmi et al., 1997). This high
frequency has been linked to a poor uptake of maternity services, higher genetic risk factors
as well as pervasive social and material disadvantage amongst South Asian communities in
the UK (Emerson and Hatton, 2004; Mir et al., 2001; Hatton et al., 2010).
The experiences of South Asian families caring for a child with intellectual disability in the UK
can be very distinct from those of White families. Each culture often has its own cultural
models of child development, which can influence interpretations of disability (Skinner and
DOI 10.1108/20441281211236580 VOL. 6 NO. 4 2012, pp. 179-191, QEmerald Group Publishing Limited, ISSN 2044-1282
j
ADVANCES IN MENTALHEALTH AND INTELLECTUAL DISABILITIES
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PAGE 179
Kuljit Heer and
Michael Larkin are based in
the School of Psychology
at the University of
Birmingham,
Birmingham, UK.
Ivan Burchess is based at
Ivan Burchess Applied
Psychological Services,
Wolverhampton, UK.
John Rose is based in the
School of Psychology,
University of Birmingham,
Birmingham, UK.
The authors would like to
thank the two carers support
groups, the parents and staff
who made the research study
possible.
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