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Fit to care? A comparison of informal caregivers of first-generation Black Caribbeans and White dependants with advanced progressive disease in the UK

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Abstract

The present survey aimed to describe and compare the main needs and problems experienced by informal caregivers of Black Caribbean and White native-born patients in their last year of life. Out of the 106 Black Caribbean and 110 White patients identified as dying during the survey period, 50 interviews per ethnic group were conducted, a response rate of 47% and 45%. Out of these, 31 respondents representing Black Caribbean and 28 representing White dependants said that they bore the brunt of caregiving. Compared with those who cared for White dependants, those who cared for Black Caribbean dependants were more likely to be women (84% versus 46%, 2 = 9.21, 1 d.f., asymptotic P = 0.002) and younger than 55 years of age (73% versus 37%, 2 = 7.60, 1 d.f., asymptotic P = 0.006). The personal-care tasks which caregivers assisted their dependants with were similar, as were the informal resources they drew on. Many caregivers reported restrictions in their daily lives; this was more pronounced for those who cared for Black Caribbean dependants (2 = 6.40, 2 d.f., asymptotic P = 0.041, exact P = 0.039). Research is required to provide a qualitative narrative of the meaning caregivers from different communities ascribe to caring, and the formal and informal resources which they need to support them.
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Keywords: ethnicity; informal caregivers; palliative care

Document Type: Research Article

Affiliations: Department of Palliative Care and Policy, Guy’s, King's and St Thomas’ Schools of Medicine, King's College London, London, UK

Publication date: November 1, 2003

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