Meeting the needs of severely disabled Pakistani and Bangladeshi children and their families
John Carpenter, Centre for Applied Social and Community Studies, University of Durham
Abstract
This study addressed the poor uptake and utilisation of services by Pakistani and Bangladeshi families with severely disabled children. It investigated possible reasons, including linguistic and cultural barriers which impede communication between families, professionals and agencies and limit knowledge and understanding of services; professional stereotyping; lack of sensitivity to 'race' and culture; and the poor coordination of services.
We used initial structured interviews to collect data on awareness and use of services and subsequent semi-structured interviews, drawings and worksheets to explore the experiences and understandings of parents, disabled children and their siblings. We hypothesised that minority ethnic families having a disabled child would share some similar experiences to White English-speaking families in the same position, but that there will be important differences and additional issues. In order to distinguish these, a sample of White families from the same area was included. Thematic content analysis of interview transcripts and children's worksheet was undertaken using NVIVO software. The findings from these interviews were then used to formulate semi-structured interviews which were conducted with health and social care professionals practicing in the area.
The study took place in a Northern city with above average South Asian populations and significant social deprivation and child poverty. The sample comprised 27 families, 10 Pakistani, 9 Bangladeshi and 8 White. Between them they had 33 disabled children. In addition, 7 professionals (3 Asian, 4 White) were interviewed.
We concluded that the low uptake of services by Pakistani and Bangladeshi families is due more to social and linguistic barriers than to parental beliefs and attitudes about disability. These barriers operate at the agency/institutional level as well as at the level of families and communities. There are many practical steps which agencies can and should take, both singly and together. These include, better provision of information and the development of culturally sensitive services.