Unequal treatment: health care experiences and needs of patients with cancer from minority ethnic communities

Abstract

What is known • The quality of studies of cancer and palliative care in relation to the health and wellbeing of members of minority ethnic backgrounds is variable. • There are significant issues and challenges facing members of ethnic minority groups when accessing cancer care services. What this paper adds • Evidence of unmet needs among patients with cancer who are members of minority ethnic groups. This evidence includes persistent failure and neglect in terms of cancer care and institutional discrimination which prevent patients from accessing good quality of care and services. • Evidence of poor communication practices between clinicians. • Concerns about informed consent and legal right to interpreting or advocacy services. • Examples of how ethnic and cultural identification give meaning to individual's lives and the positive impact that well-matched advocates can make to patients' knowledge and understanding of various aspects of their illness. ABSTRACT This study aimed to explore the health care experiences of members of minority ethnic groups regarding the patients with cancer. A grounded theory approach and semi-structured interviews were conducted with a purposeful sample of 50 respondents who represented the largest minority ethnic groups in a metropolitan UK city. These included 35 patients with cancer from African-Caribbean, Irish, Pakistani, Indian, Bangladeshi and Chinese communities, eight of their carers; and seven community bilingual advocates involved in supporting members of minority ethnic groups who had cancer. Respondents' experiences of health care were highly variable. Some patients had positive experiences of certain aspects of care, including emotional support from advocates. However, the basic needs of many patients were commonly not met. Effective access to appropriate care, information and communication was compromised, including at critical times such as when imparting a cancer diagnosis or discussing treatment options. Continuing care was characterised by a lack of service responsiveness and flexibility across care pathways and social services, with patients often unaware of their entitlement to support related to their cancer. The study provided continuing evidence of institutional racism and inequality in patients' experience of health care. Service providers and policy makers should focus on improving elementary quality of care for all as a matter of urgency.