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Partners in palliative care? Perspectives of Turkish and Moroccan immigrants and Dutch professionals’
Partners in palliative care. Perspectives of Turkish and Moroccan immigrants and Dutch professionals.
This study explores palliative care provided to immigrants with a Turkish or Moroccan background, in The Netherlands. It shows that several factors influences access of Dutch care. At the individual level, patients’ limited knowledge of their disease played an important role. At the family level, mostly female relatives bore the heavy burden of caring for the patient. They often recognized the need for professional help, but male family members were less convinced. When communication is coordinated by male relatives, the family often refuses outsiders’ help. At the community level this attitude is reinforced as family care is seen as a duty. Finally, at the institutional level, care services did not always correspond with the care needs of the families. Overall, the preference for family care influenced all factors. The greatest problems for care providers were communication problems.
It is found that that palliative care may be a contradiction in terms for patients and relatives who see ‘care’ as treatment towards recovery. Another contradictory value regarded patient information: Dutch care providers prefer complete openness to the patient to attain shared decision making, while relatives oppose this as they feel that the patient should never lose hope. Relatives also reject pain relief that diminishes the patient’s consciousness as they insist that the patient should enter the hereafter with a clear mind. Miscommunication around palliative care can also be the result of translation barriers. Relatives often hold a key position in triadic conversations, while many (particularly young) Dutch care providers prefer the patient to be the primary communication partner. They are often not accustomed to deal with lay intermediaries whose roles are threefold: interpreter, spokesperson and personally affected.
The findings emerging from the international literature study largely confirm the former observations. Family care for incurably ill Turkish and Moroccan patients is considered a duty, even when this care becomes a heavy burden for the - usually female - family caregiver. Hospital care is often preferred as patients and relatives usually strive for curative care until the end. Decisions on withdrawing or withholding treatment are seldom discussed with the patient and relatives often withhold information about the diagnosis. Communication about pain and mental problems is limited. Language barriers and family dominance may amplify communication problems.
The study ends with recommendations to members of the Turkish and Moroccan communities, to care providers and for follow-up research.
Thesis (dowload pdf)
Perspectives on care and communication involving incurably ill Turkish and Moroccan
patients, relatives and professionals: a systematic literature review
Fuusje M de Graaff, Patriek Mistiaen, Walter LJM Devillé and Anneke L Francke
In BMC Palliative Care 2012, 11:17 http://www.biomedcentral.com/1472-684X/11/17
Background: Our aim was to obtain a clearer picture of the relevant care experiences and care perceptions of incurably ill Turkish and Moroccan patients, their relatives and professional care providers, as well as of communication and decision-making patterns at the end of life. The ultimate objective is to improve palliative care for Turkish and Moroccan immigrants in the Netherlands, by taking account of socio-cultural factors in the guidelines for palliative care.
Methods: A systematic literature review was undertaken. The data sources were seventeen national and international literature databases, four Dutch journals dedicated to palliative care and 37 websites of relevant national and international organizations. All the references found were checked to see whether they met the structured inclusion criteria. Inclusion was limited to publications dealing with primary empirical research on the relationship between socio-cultural factors and the health or care situation of Turkish or Moroccan patients with an oncological or incurable disease. The selection was made by first reading the titles and abstracts and subsequently the full texts. The process of deciding which studies to include was carried out by two reviewers independently. A generic appraisal instrument was applied to assess the methodological quality.
Results: Fifty-seven studies were found that reported findings for the countries of origin (mainly Turkey) and the immigrant host countries (mainly the Netherlands). The central themes were experiences and perceptions of family care, professional care, end-of-life care and communication. Family care is considered a duty, even when such care becomes a severe burden for the main female family caregiver in particular. Professional hospital care is preferred by many of the patients and relatives because they are looking for a cure and security. End-of-life care is strongly influenced by the continuing hope for recovery. Relatives are often quite influential in end-of-life decisions, such as
the decision to withdraw or withhold treatments. The diagnosis, prognosis and end-of-life decisions are seldom discussed with the patient, and communication about pain and mental problems is often limited. Language barriers and the dominance of the family may exacerbate communication problems.
Conclusions: This review confirms the view that family members of patients with a Turkish or Moroccan background have a central role in care, communication and decision making at the end of life. This, in combination with their continuing hope for the patient’s recovery may inhibit open communication between patients, relatives and professionals as partners in palliative care. This implies that organizations and professionals involved in palliative care should take patients’ socio-cultural characteristics into account and incorporate cultural sensitivity into care standards and care practices.
Keywords: Palliative care, Communication, Immigrants, Ethnic minorities
Artreview (download pdf)
Understanding and improving communication and decision-making in palliative care for Turkish and Moroccan immigrants: a multiperspective study
Fuusje M. de Graaff, Anneke L. Francke, Maria E.T.C. van den Muijsenbergh and Sjaak van der Geest
Ethnicity & Health, 2012, 1_22, iFirst article
Objective. The aim of this study is to explore how communication and decisionmaking
in palliative care among Turkish and Moroccan patients is influenced by
different styles of care management between Turkish and Moroccan families and
Dutch professional care providers. Problems as well as solutions for these
roblems are highlighted.
Design. A qualitative design was used, totally interviewing 83 people (6 patients,
30 relatives and 47 care providers) covering 33 cases of incurable cancer patients
receiving palliative care. Data were analysed thematically and contextually.
Results. The analysis reveals that problems in decision-making are partly related
to differences in ethnic-cultural views on ‘good care’ at the end of life: Dutch
palliative care providers prefer to focus on quality of life rather than on
prolonging life, while Turkish and Moroccan families tend to insist on cure.
Another barrier is caused by conflicting views on the role of the ‘care management
group’: Dutch care providers see the patient as their primary discussion
partner, while in Turkish and Moroccan families, relatives play a major part in the
communication and decision-making. Moreover, the family’s insistence on cure
often leads to the inclusion of additional care providers in communication, thus
complicating joint decision-making.
Conclusion. Care providers need to understand that for Turkish and Moroccan
patients, decision-making is seldom a matter of one-to-one communication. Next
to acknowledging these patients’ different cultural backgrounds, they must also
recognise that the families of these patients often function as care management
groups, with an ‘equal’ say in communication and decision-making. In addition,
professionals should optimise communication within their own professional care
Talking in triads: communication with Turkish and Moroccan immigrants in the palliative phase of cancer
Fuusje M De Graaff, Anneke L Francke, Maria ETC Van den Muijsenbergh and Sjaakvan der Geest
In Journal of Clinical Nursing 21, 3143–3152, doi: 10.1111/j.1365-2702.2012.04289.x
Aims and objectives. To gain insight into the factors that influence communication between health professionals andTurkish and Moroccan immigrants in the palliative phase of cancer.
Background. In palliative care, communication is crucial. The question, however, is whether Dutch healthcare providers, on the one hand, and Turkish and Moroccan patients and their family members, on the other, agree on what is constituted by good communication.
Design. A descriptive qualitative method is used.
Methods. Data of semi-structured interviews with 83 persons (six patients, 30 relatives and 47 professional care providers) were analysed to determine perceptual communication differences about care and treatment during the palliative phase of 33 cases.
Results. As many patients with a Turkish or Moroccan background speak little Dutch, conversations often take place in triads, which makes it difficult for the actors to understand and resolve communication problems arising from diverging perceptions of ‘good communication’.
Conclusion. Miscommunication around palliative care cannot solely be explained by the different cultural backgrounds of patients and their care providers. The multilingual communication triangle of patient – family – care provider often also complicates the bridging of differences in care perceptions.
Relevance to clinical practice. Professional care providers should develop adequate strategies to handle triads, explore their own conventions and those of patients and relatives.
Key words: cancer, communication, immigrants, palliative care, triads
Accepted for publication: 15 May 2012
Article (download pdf)
‘Palliative care’: a contradiction in terms? A
qualitative study of cancer patients with a Turkish
or Moroccan background, their relatives and care
Fuusje M de Graaff, Anneke L Francke, Maria ETC van den Muijsenbergh, Sjaak van der Geest
Background: Palliative cancer care aims to improve quality of life and ultimately quality of dying, while prolonging
life is not an objective anymore when death nears. The question is, however, whether these perspectives on
palliative care are congruent with the perspectives of immigrant families with a Turkish or Moroccan background.
Methods: A qualitative design was used as we were looking for the personal views of ‘very ill’ cancer patients with
a Turkish or Moroccan background, their family members and their Dutch care providers. We interviewed 83
people, involved in 33 cases to obtain information about their views, values and norms on ‘good care’.
Results: The main concerns about ‘good care’ expressed by Turkish and Moroccan families were: maximum
treatment and curative care until the end of their lives, never having hope taken away, devoted care by their
families, avoiding shameful situations, dying with a clear mind and being buried in their own country. Their views
conflict, to some extent, with the dominant principles in palliative care, for example, the emphasis on quality of life
and advanced care planning, which includes discussing diagnosis and prognosis with the patient.
Conclusions: Patients and their families with a Turkish or Moroccan background often have different ideas about
‘good care’ than their Dutch care providers. As many of them are aiming at cure until the end of life, they find
‘good palliative care’ a contradiction in terms.
Available in English
Barriers to home care for terminally ill Turkish and Moroccan migrants, perceived by GPs and nurses: a survey.
De Graaff FM, Francke AL,BMC Palliative Care 2009, 8:3.
Background: Palliative cancer care aims to improve quality of life and ultimately quality of dying, while prolonging life is not an objective anymore when death nears. The question is, however, whether these perspectives on palliative care are congruent with the perspectives of immigrant families with a Turkish or Moroccan background.
Methods: A qualitative design was used as we were looking for the personal views of ‘very ill’ cancer patients with a Turkish or Moroccan background, their family members and their Dutch care providers. We interviewed 83 people, involved in 33 cases to obtain information about their views, values and norms on ‘good care’.
Results: The main concerns about ‘good care’ expressed by Turkish and Moroccan families were: maximum treatment and curative care until the end of their lives, never having hope taken away, devoted care by their families, avoiding shameful situations, dying with a clear mind and being buried in their own country. Their views conflict, to some extent, with the dominant principles in palliative care, for example, the emphasis on quality of life and advanced care planning, which includes discussing diagnosis and prognosis with the patient.
Conclusions: Patients and their families with a Turkish or Moroccan background often have different ideas about ‘good care’ than their Dutch care providers. As many of them are aiming at cure until the end of life, they find‘ good palliative care’ a contradiction in terms.
Available in English.
Home care for terminally ill Turks and Moroccans and their families in the Netherlands: carers’ experiences and factors influencing ease of access and use of services
De Graaff F.M. , Francke, AL International Journal of Nursing Studies, 2003 (40) 797-805
The aim of this study was to explore the experiences of relatives of elderly terminally ill Turks and Moroccans regarding Dutch professional home care and the barriers to the use this care. Nine Turkish and ten Moroccan family members, who recently looked after dying members of their families, were interviewed using a semi-structured topic list. The data was analyzed using the method described by Glaser and Strauss. The results of this study make it clear that there is no uniform pattern in the use of home care. However, family members who did use home care facilities were all satisfied. Furthermore, on the basis of this study, several factors influencing access to and use of home care were discerned, e.g., illness, family structure, decision making, pressure from the community, information and formal referrals. In addition, the authors found that ‘preferences regarding family care’ influenced all former factors.
Available in English.
How to link health research to policy makers, practitioners and patients. Use of Dutch health services by non-Dutch patients
Fuusje de Graaff, MEDISCHE ANTROPOLOGIE 21 (2) 2009 223-234
This article presents experiences with research-related implementation activities in the
field of intercultural communication in palliative health care in the Netherlands. It is
argued that sharing research aims with relevant stakeholders, organizing resulting feedback,
translating findings into educational programs and other products that suit the needs
of policy makers, practitioners and (immigrant) patients will facilitate the implementation
Available in English.
Home care for terminally ill Turks and Moroccans, experiences and opinions of their families and of professionals.
F.M. de Graaff, T. van Hasselt en A.L. Francke, 2005, Nivel, Utrecht.
This report is a compilation of different studies: it gives an idea of experiences and views of Turkish and Moroccan families who make use of home care services for terminally ill patients, but also of the experiences of family doctors, home-care nurses and indication consultants in this field. It has become clear that the use of home-care services is determined by different factors:
- relatives’ lack of insight in the course of the patient’s illness
- the expectation ( with families as well as the family doctor) that the family will and wants to supply all necessary care
- lack of knowledge about what to expect of Dutch home-care nurses
- home-care organization limitations.
Two fact sheets and a brochure have also appeared on the results of the research.
Available in Dutch