Oncology health workers' views and experiences on caring for ethnic minority patients: A mixed method systematic review.

OBJECTIVES: To investigate what published research reveals about the views and experiences of oncology health workers when caring for ethnic minority patients. DESIGN: Systematic review of qualitative and quantitative studies. DATA SOURCES: The following databases were systematically screened: PubMed, CINAHL, Web of Science, and AnthroSource. Reference lists were checked for additional articles. REVIEW METHODS: Empirical studies or systematic reviews (1/2000 to 12/2013) were included if they concerned the oncology setting and the views or experiences of healthcare workers and care users belonging to an ethnic or cultural minority group. The methodological quality of each individual study was assessed using the Critical Appraisal Skills Programme for Qualitative Studies and the Quality Assessment Tool for Quantitative Studies. RESULTS: Eighteen publications met the inclusion criteria. Thirteen articles had a qualitative, four a quantitative, and one a mixed methods design. The results in the individual studies were heterogeneous. Most studies reported challenges or barriers when caring for ethnic minority patients, whereas fewer than half of the articles discussed facilitating factors and opportunities. Oncology health workers participating in the included studies sought to provide professional standards of care and tried to adapt care to the needs of ethnic minority patients. However, they experienced formidable communication barriers and they feared doing things that might be considered culturally insensitive. The organizational aspects of care for the oncology patient appeared to have a significant influence on how healthcare providers view and experience oncology care for ethnic minority patients. CONCLUSIONS: Views and experiences of participating oncology health workers were characterized by a willingness to provide proper care for ethnic minority patients, but this was hampered by a tangle of interrelated issues such as linguistic barriers, fear and uncertainty, and assumptions about cultural matters. Organizational aspects were shown to be a strong influence on healthcare workers caring for ethnic minority patients. Due to methodological limitations of the included studies, conclusions should be viewed with caution.

Caring for Family Members Older Than 50 Years of Turkish and Northwest African Descent: The Meaning of Caregiving.

BACKGROUND: The first generation of immigrants to Belgium from Turkey and Northwest Africa are aging and at risk for developing cancer. Family members play an important role in both illness and old age. OBJECTIVE: The objective of this study was to gain insight into experiences and perceptions of families with Turkish or Northwest African backgrounds who were caring for cancer patients older than 50 years in Flanders, Belgium. METHODS: A qualitative research design with elements of constructivist grounded theory was used. Twenty-eight loosely structured interviews were conducted. Three researchers were involved in data analysis (researcher triangulation), and 6 conversations took place with experts. RESULTS: Cancer appeared to be a family matter. Caregiving had a strong moral meaning for all participants, particularly for children providing care to a parent. Caregiving could be described as "guiding": family members led the patient through, or familiarized the patient with, the healthcare system. There were strong differences in the extent to which family members believed they should provide care, as well as the kind of professional care considered desirable. CONCLUSIONS: Despite shared values of the importance of family and family caregiving, concrete ideas about caregiving differed considerably. The findings imply that shared cultural or religious normative values do not predict day-to-day care practices. IMPLICATIONS FOR PRACTICE: This study provides new insights into the moral and practical meaning of caregiving, which will help professionals understand the roles adopted by family members. Furthermore, individualized approaches to care appear to be essential, because concrete ideas about informal caregiving differ strongly despite shared values.

Perspectives of family members on planning end-of-life care for terminally ill and frail older people.

CONTEXT: Advance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process. OBJECTIVES: To gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process. METHODS: This was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory. RESULTS: Family members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns. CONCLUSION: This study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.

Advance Care Planning in terminally ill and frail older persons.

OBJECTIVE: Advance Care Planning (ACP) - the communication process by which patients establish goals and preferences for future care - is encouraged to improve the quality of end-of-life care. Gaining insight into the views of elderly on ACP was the aim of this study, as most studies concern younger patients. METHODS: We conducted and analysed 38 semi-structured interviews in elderly patients with limited prognosis. RESULTS: The majority of participants were willing to talk about dying. In some elderly, however, non-acceptance of their nearing death made ACP conversations impossible. Most of the participants wanted to plan those issues of end-of-life care related to personal experiences and fears. They were less interested in planning other end-of-life situations being outside of their power of imagination. Other factors determining if patients proceed to ACP were trust in family and/or physician and the need for control. CONCLUSIONS: ACP is considered important by most elderly. However, there is a risk of pseudo-participation in case of non-acceptance of the nearing death or planning end-of-life situations outside the patient's power of imagination. This may result in end-of-life decisions not reflecting the patient's true wishes. PRACTICE IMPLICATIONS: Before engaging in ACP conversations, physicians should explore if the patient accepts dying as a likely outcome. Also the experiences and fears concerning death and dying, trust and the need for control should be assessed.