Community-based palliative care for Bangladeshi patients in east London. Accounts of bereaved carers

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Abstract
The aim of this paper is to describe the palliative care experience of Bangladeshi patients and carers in the Tower Hamlets area in the east of London. Semi-structured interviews were carried out in Sylheti, the Bengali dialect of this community, with bereaved primary carers of 18 patients (10 male, eight female) referred to an east London community palliative care team between 1986 and 1993. It was found that patients were young, with a mean age of males of 55 years (range 34–65) and females of 40 years (range 28–57). Communication difficulties were common. The fluency in English of patients was low, with reliance on family members, especially children, for translation. The diagnosis was known by all patients, but only 56% of carers agreed with disclosure. Team dissatisfaction with communication was recorded in 16 cases. Fourteen patients died in London; however, 13 were buried in Bangladesh. Carers often reported symptoms as poorly controlled. Pain was said to be severe for 14 patients, and pain control said to be poor in 11. Family and friends provided most support during the illness and bereavement. Serious financial difficulties occurred in nine families. General practitioners were involved actively in six cases. In conclusion, there are ethno-specific needs in this particular community, many of which arise from socio-economic factors, recent migration and religious beliefs, and which are highlighted by terminal illness.

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