Oncologische zorg in multicultureel Vlaanderen : ervaringen van zorgverleners en beleving van familieleden

As in other West-European countries, Belgium is characterized by an increasing diversity in its population. Care in which provider and patient have a different cultural background is more and more common. For care to be well attuned to patients of foreign descent, gaining insight in the perspective of the provider and that of the care receiver is important. Considering the existential meaning of oncology care, these insights are certainly a matter of importance within the context of oncology. However, little is known about how health professionals experience and perceive their work with care users of diverse ethnic origins. With regard to family members of ethnic minority cancer patients also relatively little research has been undertaken. This dissertation aims to provide insight in both the experiences of oncology health workers in caring for ethnic minority care users and in the experiences of family members of older adult cancer patients of Turkish or Northwest African descent. As family members play an essential role in the cancer trajectory, insight in their perspective is valuable. The insights were gained by means of a systematic literature review and qualitative empirical research, based on constructivist grounded theory. First it is investigated what published research reveals about the views and experiences of oncology health workers when caring for ethnic minority patients. The limited literature reports mostly about challenges or barriers when caring for these patient groups. Views and experiences of participating oncology health workers are characterized by a willingness to provide proper care, but providing such care is hampered by a tangle of interrelated issues such as linguistic barriers, fear and uncertainty, and assumptions about cultural matters. Organizational aspects were shown to have a strong influence on healthcare workers caring for ethnic minority patients. Experiences and perceptions of oncology health providers in caring for patients of non-Western descent in Flanders are studied in a qualitative research, using focus group interviews. Barriers and difficulties appear to be paramount in the provision of care to patients of non-Western descent. Participants want to act according to their professional standards, which call for treating all patients equally and providing appropriate care. However ‘cure’ takes precedence over ‘care’ when participants are not willing or not fully able to overcome barriers. This results in feelings of inadequacy in those participants who equate professional standards to care of equal quality. Participants who interpret the professional standard as calling for equivalent care are irritated by ‘these’ patients who restrain them from providing appropriate care. The findings indicate that professional standards provide protection against possible discrimination that may result from personal beliefs. Extending professional standards from ‘treating all patients equally’ to ‘care attuned to each patient’ might be a way to prevent ‘cure’ taking precedence over ‘care’. Insight in the experiences of family members of older adult cancer patients of Turkish or northwest African descent is provided in a subsequent study. Analysis of the individual interviews yields insight in the strong moral meaning of care giving and in the way family members balance truth-telling when translating for their older relative. Cancer appears to be a family matter. Care giving has a strong moral meaning for all participants, particularly for children providing care to a parent. Care giving can be described as “guiding”: family members lead the patient through, or familiarize the patient with, the health care system. Despite shared values of the importance of family and family care giving, there are strong differences in the extent to which family members believe they should provide care, as well as the kind of professional care considered desirable. Hence shared cultural or religious normative values do not predict day-to-day care practices. Therefore, individualized approaches of care are essential. Following from the strong moral meaning care giving has, most relatives consider it their responsibility to contribute to a positive attitude of the patient. Based on several motives and embedded in their assessment of the patient’s emotional strength, understanding, and need to be informed, relatives decide to what extent they inform the patient. Some consider it best to omit medical information while others consider it best to inform the patient fully. What they decide influences the way they act as a translator or a contact person. The results emphasize the importance for healthcare providers to take into account the complexity and unpredictable character of the process of balancing truth-telling when family members translate for their ill older relative. Furthermore, it shows the importance of conversations between oncology healthcare providers and patients, together with close relatives, about views and attitudes to sharing information. Taken together, this dissertation indicates that an overarching professional standard of ‘care attuned to each patient’, indiscriminately, might prevent individuals receiving less qualitative care when being counted among a specific group. Attuned care requires gaining insight in what is really at stake for patients and their loved ones and to attune care to that information. Such a professional standard might improve oncology care for all care users