Effective palliative care for minority ethnic groups: the role of a liaison worker

As the issue of equality of access to health-care services becomes more important, there is increasing concern that specialist palliative care services in the UK are under-used by minority ethnic groups (Haroon-Iqbal et al, 1995; Karim et al, 2000). Research into the provision of such services for black and minority ethnic communities identified a number of factors that contribute to a perceived low take-up of services (Hill and Penso, 1995). A strategy to promote ethnic and racial sensitivity in palliative care service delivery, and policies to improve access to, and take-up of, services was recommended. This article presents the important elements relating to equal access to specialist palliative care and the provision of culturally sensitive services, and examines the role of the Macmillan Ethnic Minorities Liaison Officer in the Bradford community palliative care team.     

Specific health issues in ethnic minority groups

The study of disease patterns in ethnic minority groups offers insights into the causation of disease. Ethnic minorities have wide variations in health conditions and behaviors, and stereotyping can lead to spurious assumptions in caring for patients. This article presents basic information relating to major illnesses such as cardiovascular disease, diabetes, and cancer and common health disorders observed among ethnic groups primarily in the United Kingdom and United States.     

Working with older people from minority ethnic groups

Living in a multi-cultural community means nurses in all specialties must have an understanding of the diverse ethnic backgrounds of their patients. This applies equally to nurses working with older people, who can enhance the care they give by facilitating adequate, appropriate and accessible services for all patients, irrespective of ethnic origin.     

Caring for minority ethnic older people in nursing care homes

This article aims to identify best practice guidance in relation to caring for minority ethnic older people in UK care homes that provide nursing care, highlighting key issues and identifying gaps that require redress. Current best practice guidance focuses on client issues, such as the recognition of cultural preferences, and organizational issues, such as workforce and the environment. However, while there is some best practice guidance regarding the care of minority ethnic older people in care homes, it is not sufficiently explicit. The article concludes by suggesting key strategies to help address the needs of minority ethnic older people in care homes.     

Breast health information needs of women from minority ethnic groups

BACKGROUND: For women from minority ethnic groups to make informed decisions about their health, and particularly about whether to participate in breast cancer screening programmes, access to a range of appropriately designed high quality, culturally-specific and sensitive health information is needed. AIMS: Through a critical review of the literature, this paper aims to determine the breast health and breast cancer screening information needs of women from minority ethnic groups and to discuss the implications of cultural difference for nurses in relation to the development and dissemination of health information. METHODS: A critical review of the research literature published in English between 1996 and 2002 was conducted. Electronic and the relevant Cochrane Collaboration databases were searched using a range of search terms to retrieve literature specifically relevant to the aims of the review. The use of personal contacts and posting a request for information on the mailing list at minority-ethnic-health@jiscmail.ac.uk facilitated the retrieval of grey literature. All references retrieved were entered on a bibliographic database. The title and abstract of each was examined to assess it for inclusion in the review. FINDINGS: There was little published information about specific breast cancer screening information needs from the perspective of women from minority ethnic groups. In comparison with the indigenous population, the information needs of people from minority ethnic groups differ in relation to their cultural beliefs and values and the effects of these on health care practices. Inadequate knowledge about breast health and breast cancer screening may be a consequence of the provision of insufficient or culturally inappropriate information. CONCLUSIONS: There is a dearth of research highlighting breast health and breast cancer screening information needs of women from minority ethnic groups. In providing information, their needs appear to have been an 'add on'. Health care professionals' lack of understanding about cultural beliefs, values and knowledge, together with racial stereotyping and misconceptions about cancer in minority ethnic groups, pose challenges to information dissemination. Health care professionals need to work collaboratively with women from minority ethnic groups, identifying culturally-specific beliefs and values about breast cancer, breast cancer risk and screening, in order to develop appropriate and acceptable information and dissemination strategies.     

Understanding dementia amongst people in minority ethnic and cultural groups

AIM: This paper is a report of a study to explore perceptions of ageing, dementia and ageing-associated mental health difficulties amongst British people of Punjabi Indian origin. BACKGROUND: People from ethnic minorities are often under-represented in mental health services. Contributing factors may include lack of knowledge of dementia in these communities, lack of detection in primary care, expectations of family care and lack of appropriate services. For this to change, greater knowledge is needed about awareness and conceptualization of dementia in minority ethnic communities. METHOD: A focus-group study was conducted between 2001 and 2003 with 49 English-, Hindi- and Punjabi-speaking British South Asians, aged 17-61 years. Views of ageing and ageing-associated difficulties were explored in initial groups. In a second set of groups, vignettes were used for more specific exploration of awareness and understanding of dementia. Data were subjected to thematic analysis. FINDINGS: Ageing was seen as a time of withdrawal and isolation, and problems as physical or emotional; cognitive impairment was seldom mentioned. There was an implication that symptoms of dementia partly resulted from lack of effort by the person themselves and possibly from lack of family care. Therefore people should overcome their own problems and family action might be part of the solution. There was a sense of stigma and a lack of knowledge about mental illness and services, alongside disillusionment with doctors and exclusion from services. CONCLUSION: Health promotion and health interventions delivered with respect for the cultural context are needed, as well as education of healthcare professionals about South Asian conceptualizations of dementia.     

The health care needs of ethnic minority groups: are nurses and individuals playing their part?

The UKCC Code of Professional Conduct for nurses, midwives and health visitors stresses the need to have an understanding of the social and cultural determinants of health and illness There is as yet little evidence of what might constitute good practice in this area and it is difficult to ascertain why this basic philosophy is not translated into action Indeed, the nursing and midwifery professions' ability to deliver adequate and appropriate health care more generally to Britain's multiracial, multicultural population has been questioned This literature review presents evidence which strongly suggests that although we are living in a multicultural society patients from minority ethnic groups are additionally disadvantaged because the initiatives by nurses, and others working in the National Health Service, to meet their health care needs are inadequate and often inappropriate     

Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom

ContextPatients from minority ethnic groups experience lower rates of referrals to end-of-life (EoL) care services, higher levels of dissatisfaction with services, and perceive some services as culturally inappropriate.ObjectivesTo systematically review original studies of minority ethnic groups and EoL care in the U.K. and appraise their quality.MethodsSearches were carried out in 13 electronic databases, eight journals, reference lists, and the gray literature. Studies of minority ethnic groups and EoL care in the U.K. were included. Studies were graded for quality and key themes were identified.ResultsForty-five studies met inclusion criteria. Study quality was good on average. Identified key themes included age structure; inequality by disease group; referrals; caregivers; place of care and death; awareness of services and communication; and cultural competency. Strategies described for the reduction of inequities were partial and reactive. The format of 10 studies prevented quality grading; these were, however, reviewed as they provided unique insights. Variations in terminology and sampling frames complicated comparison across studies.ConclusionThe results highlight the multiple and related factors that contribute to low service use and substandard quality of services experienced by minority ethnic groups, and the need for authors to clarify what they mean by “culturally competent” EoL care. The synthesis of diverse and disparate studies underpins a number of key recommendations for health care professionals and policymakers. Tackling these epidemiological, demographic, institutional, social, and cultural factors will require a systematic and organization-wide approach rather than the current piecemeal and reactive interventions.     

End-of-life care for infants

Carey, diagnosed with Trisomy 13, was 4 months old when he died. The moment of his death was really quite beautiful. He looked so peaceful resting in his mother's arms. She kissed him softly and said her good-byes. Tears stained her cheeks as Carey's father gently put his arms around both of them. They relaxed as he took his last breath, confident that they had done their best in caring for him. They had given Carey the best 4 months he could have. They will always remember him.After a few moments alone with Carey, they handed him to the hospice nurse. She and the social worker took care of the last-minute arrangements while the extended family members consoled one another. That night, the family began a new phase of their journey, carrying the memories of Carey and his life with them forever.     

End-of-life care for older adults

Caring for elderly patients and their families at the end of life gives physicians the opportunity to have a meaningful impact on the lives of others. By expanding our clinical expertise beyond the arena of cure and the preservation of life, we can discover new ways to encounter our patients as full human beings and to share a profound life passage that many of us might otherwise ignore. The skills that are needed to enter this new arena are well within the grasp of the office-based clinician, and physicians who employ them are rewarded with the fulfillment of knowing they have provided an invaluable service at a time of greatest need.     

The palliative care needs of ethnic minority patients: staff perspectives

The aim of this study was to assess palliative care staff's perceptions of multicultural care provision and explore the barriers and facilitators to culturally sensitive care. Qualitative semi-structured interviews with five palliative care staff were conducted. Staff showed awareness of inter-cultural diversity and the importance of individualized care. It also became apparent that staff did not possess ethnocentric attitudes. Facilitators of multicultural care that emerged from the data included training, learning from experience, the use of culturally specific literature and resources, and effective communication channels in the team. However, barriers were present, including limited interpreting services, and some staff and other patients' negative behaviours towards ethnic minority patients. The findings lead to recommendations for better resourcing and expansion of interpreting services, and for more training, based on staff's desire for limited culturally specific knowledge in sensitive combination with an individualized care philosophy.     

End-of-life care for the hospitalized patient

The majority of Americans die in hospitals where shortcomings in end-of-life care are endemic. Too often, patients die alone, in pain, their wishes unheeded by their physicians. Because hospitalists care for many of these dying patients, they can dramatically improve end-of-life care in hospitals. Hospitalists must first relieve distressing symptoms such as pain, dyspnea, nausea, vomiting, delirium, and depression. In addition, they should communicate clearly with patients and families, and provide them psychosocial support. Hospitalists can increase the number and the timeliness of hospice referrals, thereby allowing more patients to die at home. Finally, all physicians must attend to their own senses of grief and loss to avoid burnout and to continue to reap the rewards end-of-life care provides.     

End-of-life care for patients with dementia

Studies have shown that people with dementia receive sub-optimal end-of-life care (McCarthy et al, 1997; Morrison and Siu 2000; Mitchell et al, 2004). The National Institute of Clinical Excellence (NICE) and the National Council for Palliative Care (NCPC) have highlighted the importance of palliative care for people with dementia (NICE 2006; NCPC 2007). This article explores the palliative care needs of older people with dementia and considers how they may be addressed.