The ASC-LD project builds on previous work by the group. Kuljit Heer, for her doctoral thesis, has explored the experiences of South Asian carers, caring for children with learning disabilities.
The project is titled:
The cultural context of caregiving: A phenomenological exploration of the experiences of South Asian carers caring for children with intellectual/developmental disabilities
Background and aims of this Study
Government reports such as Valuing People Now (2009) and other research have suggested that South Asian families caring for children with intellectual/developmental disabilities in the United Kingdom do not always get the help they need from services such as health and social care. In order to improve this we need to know more about South Asian families and their needs. This includes thinking about people’s cultures and how culture influences the way in which families provide care. Previous research had not looked at culture in detail.
This study aimed to fill this gap by looking specifically at the experiences of South Asian families caring for a child with intellectual/developmental disabilities to find out more about the importance of culture and how this impacts caring and coping in families. The aim of the study was to use the information from discussions with South Asian parents to make recommendations for improving services for this ethnic group.
The study involved different participants. Participants are people who took part in the study. Four different studies were carried out:
- Study one: Group discussions with two South Asian parents support groups
- Study two: Individual interviews with South Asian parents
- Study three: Group discussions with Indian parents from a specialist autism service in Delhi
- Study four: Group discussions with staff from learning disability services
All the information collected from all four studies was analysed using a method called interpretative phenomenological analysis. This involved focusing on what participants were saying and trying to understand and make sense of the things that were important to them when caring for their disabled child. After the analysis, themes (things that were important to the participants) were created by looking for similarities and differences in what different people were saying.
The things that were most important to the participants were:
The importance of religion - Older parents talked about the importance of religion in giving them the strength to care for their children.
Difficult relationships with services - Some parents talked about their struggle to get an early diagnosis of their children’s delays, their difficulties in accessing services and being treated poorly by staff, especially GPs who they felt were very dismissive of their concerns.
Negative attitudes from communities - Many parents talked about friends and families thinking about their children’s disabilities in a negative way, which led to isolation and little support and help.
Coping with caregiving - Parents talked about working very hard to provide care for their children even though they were receiving little help or support. However, some parents did talk about how difficult it is to cope alone.
South Asian parents born in the UK - South Asian parents who were born in the UK talked about how they sometimes struggled to make sense of their children’s disabilities and their caregiving duties, because they felt influenced by two different cultures (South Asian & British).
Adapting to a new culture - Some parents from India and Pakistan talked about having to adapt to a new way of life in the UK. This included them having to learn to speak English and gaining confidence to talk to services.
Parents from a specialist autism service India - These parents talked about the positive impact the specialist service had in helping them to understand their child’s autism better and providing support through carers groups.
Staff thoughts – Some staff from learning disability services talked about difficulties in using interpreters when trying to communicate with South Asian families who do not speak English. They also talked about the importance of trying to understand and respect cultural and religious beliefs when working with South Asian families. In contrast to the views of carers, staff thought they were working hard to try and provide good services to South Asian families but found it difficult because they had limited resources and insufficient training.
Discussion and Possible Implications
The findings of this study are consistent with other research (Hatton et al., 2003, 2010; Katbamna et al., 2001; 2002) and government documents such as Learning Disability and Ethnicity: Updating a Framework for Action (2012) and Valuing People Now (2009). These papers show that people from ethnic communities still need more support. The results of this research will be fed back to the services where the study was carried out so that they are aware of the things that are important to South Asian families and they can think about what needs to be improved and how.
We would like to thank the Ehsas carers group for taking the time to participate in the study.
Heer, K., Larkin, M. And Rose, J. (2012) Understanding the experiences and needs of South Asian families caring for a child with learning disabilities in the UK: an experiential-contextual framework. Disability and Society. 27, 7, 949 - 963.
Heer, K., Larkin, M., Rose, J. And Burchess, I. (2012) The cultural context of care-giving: qualitative accounts from South Asian parents who care for a child with intellectual disabilities in the UK, Advances in Mental Health and Intellectual Disabilities 6:4, 179 - 191