Impact of Policy Shifts on South Asian Carers in the United Kingdom

Abstract

The aim of this study was to assess how the introduction of new service policies in the United Kingdom – such as person‐centered planning and the active development of support networks – was impacting the lives of carers of people with intellectual disability from South Asian backgrounds. Using a semistructured interview schedule, 19 families of South Asian background living in an urban conurbation were interviewed about their service use and needs with respect to providing care for their family member with an intellectual disability. The families experienced material disadvantage, poor health, and did not access services to the same extent as did the general population in the UK. Overall, community participation was low and only two individuals with an intellectual disability had a care plan as outlined in the latest UK government policies. The introduction of these new policies did not appear to have positively impacted the lives of the individuals interviewed in this study. The results were similar to findings of studies in other parts of Britain: that is, the culture of caring and protecting the individual with an intellectual disability, combined with the importance of family life over an outside social life, ran somewhat counter to the underlying principles of current national disability policy (i.e., promoting individual rights and independent living). It is suggested that attempts to implement these policies risks alienating carers of South Asian descent from service providers and their implementation must be done in a culturally sensitively context.

The complex role of social care services in supporting the development of sustainable identities: Insights from the experiences of British South Asian women with intellectual disabilities

“…With the exception of two participants, who were no longer living at home, none were dissatisfied with services. This is in contrast with the views of parents from previous research, who have expressed dissatisfaction with services ( Hatton et al, 1998, Hensel et al, 2005and Raghavan & Waseem, 2007.…”

Social networks of adults with an intellectual disability from South Asian and White communities in the United Kingdom: A comparison

“…Perhaps as a symptom of systemic discrimination, whereby information is not appropriately provided, McGrother et al (2002) found that South Asians tend to underutilise services available to them due to their own lack of knowledge of the cause or concept of having an ID, often interchanging it with mental health problems. In a study by Hensel, Krishnan, Saunders, Durrani, and Rose (2005) a large proportion of families had different understandings about ID, many were unable to provide diagnostic information on their child and only able to give vague descriptions. This issue may be confounded by belief structures within south Asian culture which include, for some, alter-casting (Goffman, 1963) linked to the fear parents from south Asian backgrounds have of being stigmatised for having a child with ID, as well as beliefs of 'past life wrong-doings', termed as 'karma' in the Hindu religion (Gabel, 2004).…”

“…Linked to fear of stigma of having ID, is the cultural norm of 'shame' attached to accessing health and social care provision and a fear that other people will 'find out' that a family member has an ID (Hensel et al, 2005). Although it is questionable as to whether this relates to all South Asian families (with no concrete data proving this), Gable (2004) suggests that overall South Asians' cultural desire for privacy is demonstrated in the ways they approach (and avoid) health professionals.…”

“…Social networks in south Asian ID groups have also been found to be limited compared to those from a white background. Hensel et al (2005) found that south Asian individuals with ID were only able to go out if accompanied with another individual (normally a family member), with the rest of their time spent at home or in an ID day care centre; having a 'social life' was deemed as culturally inappropriate, unless it entailed visiting family, family-friends or attending places of worship. Again, this was explained by parents' fear of the public's reaction and stigma.…”

Majority and Minority Ethnic Family Carers of Adults with Intellectual Disabilities: Perceptions of Challenging Behaviour and Family Impact

“…Qualitative research, typically within specific minority ethnic communities, has tended to look to cultural factors to account for these elevated levels of parental risk (e.g. Harry 1992;Magana 1999;Gabel 2004;Hensel et al 2005).…”