Kuljit Heer (PhD Researcher) Supervisors: Michael Larkin, John Rose & Ivan Burchess

1. The cultural context of care giving: South Asian carers’ experiences of caring for a child with developmental disorders. Kuljit Heer (PhD Researcher) Supervisors: Michael Larkin, John Rose & Ivan Burchess

2. Why this study? • Prevalence of Developmental Disabilities in South Asian communities in UK, three times higher (Azmi et al 1997). • 19% more than one member of family. • Why? > Genetic risk factors. > Poor maternal health. > Social & material disadvantage. • Despite high prevalence service uptake remains low. • Previous Studies: • Concentrated on interactions & attitudes towards services. • Have not explored to cultural context of care-giving.

3. The Influence of culture • Culture- shared set of values, beliefs, attitudes, behaviours shared by a group of people (Pachter & Harwood, 1996). • In their process of meaning-making, parents draw on cultural models of disability (Skinner & Weisner, 2007): • Cultural symbols, and modes of production. • This in return can influence experiences of care-giving: • Beliefs about cause. • Expectations of parents as caregivers. • What services, and interventions are understood to be effective in that community.

4. Aims • How much impact does culture have in the experiences of British South Asian families caring for a child with developmental disabilities? • Interpretative Phenomenological Analysis (IPA, Smith, Flowers & Larkin 2009) – Focus on exploring how parents make sense of their experiences (caring for child with developmental Disabilities).

5. Method Participants: • Focus Groups. • 2 South Asian carers support groups: • Sikh – (2 male, 2 female). • Muslim – (2 male, 3 female). • Child with DD (autism, severe DD). • Lived in UK over 10 years. Data collection: • A semi-structured interview in order to determine: • Understanding of the Child’s DD • What support systems they had. • How they managed with care-giving.

6. Master Themes • Being isolated through the negative reactions of extended families. • Feeling let down by Asian service providers. • Dealing with negativity.

7. Being isolated through the negative reactions of extended families • Disabilities as contagious • Disabilities as a punishment from God “…I’m sorry to say that our people have a negative, they think negative. That their child is like that. That we don’t want ours to become like that, they move away. They move away.” “Pakistani families, if they had the opportunity they’d want to add fuel to the fire. No it’s just our family.... they say that you have committed sins and God has given punishment for these deeds, it’s daft. We are supposed to remember it is God’s will and he will remember us in return.”

8. Feeling let down by Asian service providers “In hospital our Asian people, Indian or Pakistani I do not know who they were but they were Asian. They told me you know what the problem with your son is and why do you keep bringing him to hospital time and again. Why do you not keep him at home? Keep him at home and look after him...” • Feeling let down • Culture blaming services “The main, the main thing they say to us, they side track the issue by saying you people do marriages in the relations.” • Preferences for “White” service providers “These people help is a lot, the ones that are white. If some time they do not help us we do not mind it, sometimes we think they do not like us, but they help us a lot, they are better than our people.”

9. Dealing with negativity • Relief in the form of religion “… we do not take any notice of these things, whatever our family says we have full faith in God and accepted his will.... this is a special person, you are a special person because God has chosen you, that you have patience that you can look after them that’s why you should have this gift.” • Numbing out the pain “I don’t really bother now, I just my child, now my uncle said bring the little on to the house, I called him but he never called back. No, we don’t bother either, about anyone. We don’t bother about anyone.”

10. Additional interesting points… • Issues with research in minority ethnic groups: • Cynicism about the benefits of research. • Action / Reciprocity. • Highlights the need for alternative ways of researching: • Participatory Research? (Lewando-Hundt & Draper, 2000). • Involvement of marginalised groups in research, with the object of empowerment.

11. Clinical Implications • Reducing stigma: • Promoting awareness. • More culturally appropriate labels of disability? • Staff & training: • Avoid making assumptions. • More support for families: • Practical & emotional. • Specialised or integrated?

12. Thank you for listening.

13. References Azmi, S., Hatton, C., Emerson, E., & Caine, A. (1997) Listening to adolescents and adults with disabilities from South Asian communities. Journal of Applied Research in Intellectual Disabilities, 10, 250-263. Lewando- Hundt, G., & Draper, A. (2000) Participatory approaches in health promotion and health planning: A literature review. NHS, Health Developmental Agency. Pachter, L., & Harwood, R. (1996) Culture and child behaviour and psycho-social development. Journal of Developmental & Behavioural Pediatrics. 17, 191-198. Skinner, D., & Weisner, T.S. (2007) Socio-cultural studies of families of children with intellectual disabilities. Mental retardation and developmental disabilities, 13, 302-312. Smith, J.A., Flowers, P., & Larkin, M. (2009) Interpretative Phenomenological Analysis: Theory, method & Research. London: Sage.