title: Accounts of carers' satisfaction with health care at the end of life: a comparison of first generation black Caribbeans and white patients with advanced disease.
abstract: While much research has described experiences at the end of life, no studies have explored the black Caribbean perspective. This paper compares the final year of life of first generation black Caribbeans and white patients with advanced disease in an inner London health authority, focusing on their satisfaction with service provision in both primary care and acute settings using face-to face interviews with carers of deceased patients. Of the 106 black Caribbean patients and 110 white deceased patients identified as dying during the study period 50 interviews per ethnic group were conducted with family members or close friends, a response rate of 47% and 45%. Even though examples of excellent and good care were cited, a larger proportion of negative satisfaction ratings of health care was recorded among respondents representing black Caribbean patients. This was true for all health care settings, particularly primary care, but less so for specialist palliative care nurses. However, few black Caribbean patients accessed specialist palliative care nurses or hospices. Qualitative data provided a deeper insight into the black Caribbean experience care at the end of life. We recommend that where examples of best practice in palliative care and culturally sensitive provision are evident they be extended to more health care professionals through education and training. Access to specialist palliative care services needs to be improved.
authors.affiliation: Department of Palliative Care and Policy, Guy's, King's and St Thomas' Schools of Medicine, St Christopher's Hospice, London, UK. jonathan.s.koffman@kcl.ac.uk
authors.forename: J
authors.initials: J
authors.lastname: Koffman
authors.forename: I J
authors.initials: IJ
authors.lastname: Higginson
mesh_terms: D000293:Adolescent; D000328:Adult; D001741:Black or African American; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D044383:Black People; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006282:Health Personnel; D006761:Hospitals / Q000592:standards; D006801:Humans; D008131:London; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000592:standards*; D011320:Primary Health Care / Q000592:standards; D011369:Professional-Patient Relations; D011787:Quality of Health Care; D019037:Urban Health Services / Q000592:standards; D044465:White People