Home and Community Care Digest

Home and Community Care Digest June 2004 : 0-0

Caregiving Experiences Differ Between Those Providing Care To Black Caribbean Versus Native-Born White Care Recipients

Abstract

This UK study compares the experience of those providing unpaid care at home to first-generation Black Caribbean versus native-born White care recipients in their last year of life. Caregivers of Black Caribbean care recipients reported more interference with their daily activities, higher levels of burden, more health problems, and less contact with support organizations. Tailoring public homecare support programs to the unique needs of different cultural groups may improve both the quality of care provided by caregivers, and their caregiving experiences. Ensuring equal access to formal support networks is particularly important and outreach activities may have to be targeted to minority groups.
Background: Despite a growing literature on the demographic characteristics and support needs of informal caregivers, little attention has been paid to ethnicity, either in Canada or elsewhere. In particular, little is known about caregivers belonging to ethnic minorities or first-generation immigrants, whose cultural experiences may influence their caregiving experience. This UK study compares the experience of those providing unpaid care at home to first-generation Black Caribbean versus native-born White care recipients in their last year of life.

Methods: Data on all deaths recorded in a one-year period spanning 1997-1998 were collected for three inner-city neighborhoods in London with high concentrations of Black Caribbeans in the population (10.4%). Care recipients from the Caribbean were identified from the country of birth indicated on death records, and ethnic group membership was validated via contact with family in order to retain only those who self-identified as Black. All those who were expected to have died from a disease characterized by a period of advanced illness were included. Letters were sent to the person who registered the care recipient's death requesting study participation. A sample of native-born White care recipients was randomly selected for comparison. One hundred structured interviews (50 per ethnic group) explored the deceased care recipient's final year of life and the impacts of caring on the lives of family and friends.

Findings: Similar numbers of care recipients of both ethnic groups died at home, although more Black Caribbeans died in hospital than in hospices. Relatively equal numbers in both groups required personal care and support in performing at least five daily tasks during their last year of life. Of 100 survey respondents, 59 indicated that they were primary caregivers for the care recipient (31 Black Caribbean and 28 White). Among those 59, caregivers for White care recipients were more likely to be the care recipient's spouse, much older, more likely to own their homes, and had more contact with formal organizations offering support. Caregivers for Black Caribbean care recipients were more likely to be close relatives and under 55 years of age. While the majority of primary caregivers in both groups were female, there were more female caregivers among the Black Caribbean group than the White group (84% versus 54%).

More primary caregivers of Black Caribbeans expressed that caregiving had severely restricted their daily activities, and found caring to be a burden. The authors speculated that increased level of burden may have been attributable to the interaction effect of not being the care recipient's spouse. Following care recipient death, caregivers of Black Caribbean care recipients also reported more problems of sleeplessness, depression, loss of appetite, and other health problems, and were less likely to consult their physician for care and advice.

Conclusions: Though the sample size was relatively small, tailoring public homecare support programs to the unique needs of different cultural groups may improve both the quality of care provided by caregivers, and their caregiving experiences. Ensuring equal access to support (via organizations and health care professionals) is particularly important and outreach activities may have to be targeted to minority groups.

Reference: Koffman, JS and Higginson, IJ. "Fit to care? A comparison of informal caregivers of firstgeneration Black Caribbeans and White dependents with advanced progressive disease in the UK." Health and Social Care in the Community, (2003); 11 (6), 528-536.

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