On the Edge: Minority Ethnic Families Caring for a Severely Disabled Child

On the Edge: Minority Ethnic Families Caring for a Severely Disabled Child

On the Edge: Minority Ethnic Families Caring for a Severely Disabled Child

On the Edge: Minority Ethnic Families Caring for a Severely Disabled Child


Despite increased awareness of the needs, circumstances and experiences of families with a disabled child, and the acknowledgement of the need to tackle inequalities and barriers to access in recent NHS reforms, there has been little gain in health or improved access to services for minority ethnic groups. This report presents the findings of the first ever national survey in the UK, in which nearly 600 parents took part, which looked at the needs and circumstances of minority ethnic families caring for a severely disabled child. The quantitative survey was then compared with data on the circumstances and experiences of white families from an earlier survey. The authors highlight the key implications for services to help parents and their children - reducing social exclusion; meeting language, communication and information needs; and bridging and improving informal and formal support. On the edge will inform and influence managers and practitioners within health, education, social services and the voluntary sector about the particular needs and circumstances of minority ethnic families who are caring for a severely disabled child. It will also be a key resource for researchers and students in the fields of disability studies, social policy, social work, ethnic relations, health services research and related fields.


“I am the only one she has…. On a
personal level I feel very, very alone.”

Isolation is one of the most stressful aspects of caring for a disabled child (Beresford et al, 1996), and family members and support groups can be important sources of practical and emotional help for parents (Beresford, 1995). The stereotype of caring minority ethnic families is sometimes used by professionals as the reason for limited provision of services for these families. Research evidence suggests that family care is not always available (Ahmad, 1996; Atkin and Rollings, 1996). Many families from minority ethnic groups do not have relatives nearby, while others find members of their extended family unhelpful (Beresford, 1995; Chamba et al, 1998). This chapter therefore explores our findings about parents' experiences of help from their families and support groups.

“My daughter needs so much care and
attention, I have to be there for her all
the time. I try to make time for my
other two children but it is hard. I do
feel all alone. I ‘phone the school
sometimes to talk but I feel they are
busy. When it is [school] holiday time, I
have very little support from family or
friends. I love my daughter but I feel
tired of always trying to help her and
finding her things to do with little or no
support from anyone.”

Support from the family

Spouses and partners

In two-parent families, spouses or partners tend to be the most important sources of emotional and practical support for the main carer (Beresford, 1995). Among mothers with a partner in this survey, six out of 10 said they received high levels of practical help from their partner. Pakistani mothers were least likely to report high levels of practical support compared to mothers from other groups. Mothers in this survey were less likely to report that they received a lot of practical help from their partners compared to mothers in the Beresford (1995) study.

Like practical support, emotional support is important in coping with the demands of caring. Overall, mothers reported that their partners (mainly husbands) provided more emotional than practical support. About three quarters of Black African/Caribbean, Indian and Bangladeshi married mothers said their spouse gave them a lot of emotional support. This is compared with two thirds of Pakistani married mothers. Again, married mothers received less emotional support from their partners than married mothers in the Beresford (1995) survey.

A final point to note here is that over two thirds of Black African/Caribbean families were headed by a lone parent. These parents will clearly be missing out on a significant source of practical and emotional support.

Support from extended family

A quarter of Pakistani and Bangladeshi parents reported that members of their extended family ‘helped a lot’ with care of their child (Figure 3).

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