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Partners in palliative care? Perspectives of Turkish and Moroccan immigrantsand Dutch professionals
de Graaff, F.M.
Publication date2012Document VersionFinal published version
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Citation for published version (APA):de Graaff, F. M. (2012). Partners in palliative care? Perspectives of Turkish and Moroccanimmigrants and Dutch professionals.
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Partners in palliative care?
Perspectives of Turkish and Moroccan immigrants and Dutch professionals
Fuusje de Graaff
ISBN: 978‐94‐6122‐121‐6 ©2012 F.M. de Graaff, The Hague, The Netherlands Illustrations: Jan Hein Schouw Word processing: Herma van den Brink Printing: Uitgeverij AMB, Diemen The research described in this thesis was partially carried out at NIVEL ‐ Netherlands Institute for Health Services Research in Utrecht, and partially carried out at the Faculty of Social and Behavioural Sciences of the University of Amsterdam. The study was financed by ZonMw, the Netherlands Organisation for Health Research and Development, program 'Palliative Care'. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior written permission of F.M. de Graaff. Exceptions are allowed in respect of any fair dealing for the purpose of research, private study or review.
Partners in palliative care?
Perspectives of Turkish and Moroccan immigrants and Dutch professionals
ACADEMISCH PROEFSCHRIFT
ter verkrijging van de graad van doctor aan de Universiteit van Amsterdam op gezag van de Rector Magnificus
prof. dr. D.C. van den Boom ten overstaan van een door het college voor promoties
ingestelde commissie, in het openbaar te verdedigen in de Agnietenkapel
op donderdag 23 februari 2012 te 10:00 uur
door
Fusina Maria de Graaff
geboren te Den Helder
Promotiecommissie Promotores: Prof. dr. J.D.M. van der Geest Prof. dr. A.L. Francke Co‐promotor: Dr. M.E.T.C. van den Muijsenbergh Overige leden: Prof. dr. D.L. Willems Prof. dr. E.H. Tonkens Prof. dr. K. Stronks Prof. dr. W.L.J.M. Devillé Prof. dr. R. Reis Dr. J. de Lange Faculteit der Maatschappij‐ en Gedragswetenschappen
Contents 5
Contents Chapter 1 Introduction 7 Chapter 2 Home care for terminally ill Turks and Moroccans and 19
their families in the Netherlands: carers’ experiences and factors influencing ease of access and use of services
Chapter 3 Barriers to home care for terminally ill Turkish and Moroccan 35
migrants, perceived by GPs and nurses: a survey Chapter 4 ‘Palliative care’: a contradiction in terms? A qualitative study 53
of cancer patients with a Turkish or Moroccan background, their relatives and care providers
Chapter 5 Talking in triads: communication with Turkish and Moroccan 79
immigrants in the palliative phase of cancer Chapter 6 Understanding and improving communication and decision 95
making in palliative care for Turkish and Moroccan immigrants: a multiperspective study
Chapter 7 Perspectives on care and communication involving incurably 121
ill Turkish and Moroccan patients, relatives and professionals: a systematic literature review
Chapter 8 General Discussion 191 Summary 205 Samenvatting 209 Dankwoord 215 Curriculum Vitae 217
Contents 6
1 Introduction
Introduction 7
Introduction Caring for the incurably ill is of all times, but palliative care in its current guise is a relatively new phenomenon. Since 1990 palliative care has been an explicit focus of attention in many countries. Specific care facilities and clinical guidelines have been developed for patients needing palliative care, inspired by the pioneers in the hospice movement, such as the English Cicely Saunders and the Swiss‐American Elisabeth Kübler‐Ross. The World Health Organisation has recognized palliative care as a specific form of care and defines this as: “an approach that improves the quality of life of patients and their families facing the problems associated with life‐threatening illness.” (WHO, 2002). In the Netherlands, palliative care is provided by a wide range of institutions and professionals. Hospices and volunteer institutions have sprung up, while generic care providers such as physicians, home care organizations, nursing homes and hospitals, too, also offer palliative care (see www.palliatief.nl). As the majority of Dutch patients at the end of life prefer to be cared for in their own familiar surroundings, general practitioners and home care providers often play a central role in the provision of palliative care (Van den Muijsenbergh, 2001; De Korte‐Verhoef & Teunissen, 2009), with the support of specialized palliative care consultants (Klinkenberg & Middelburg‐Hebly, 2010). Palliative care emphasizes a holistic approach aimed at patients and their families, their physical wants and their social, psychological and spiritual needs. Meeting these needs demands interdisciplinary cooperation between care providers and good communication with the patient and the patient’s family on a plethora of subjects (Osse et al., 2002). Often, many problems can be avoided with timely consultations and proactive approach (Francke & Willems, 2005). Not for all patients, however: elderly people often find it difficult to process all the information they receive and sometimes prefer to leave the decision making to a trusted caregiver (Posma et al., 2009). This trust is lacking in some cases, as, for example, when resentment against a caregiver had already developed during the curative phase (Osse et al., 2001), or, as is the case among certain migrants, the gatekeeper role of the general practitioner in health care is an unknown and unwanted phenomenon (Feldman et al., 2007). Although The Netherlands is home to many immigrants, until a few years ago remarkably little was known about the palliative care given to them. In the first instance, neither the Dutch care providers nor the immigrants themselves felt that insight into the palliative care needs of people from Turkey and Morocco, currently the largest immigration population groups, was particularly relevant, as they were expected to remigrate to their country of origin. The dream of returning home, however, often failed to become reality: Turkish and Moroccan first‐generation immigrants are aging in the Netherlands, and more and more need to make use of
8 Chapter 1
palliative care. It is therefore essential to examine how palliative care can be attuned to this group of patients. This thesis is the result of a study of the palliative care delivered to patients with a Turkish or Moroccan background, of the factors that determine their use of these services, of the communication between them, their families and their Dutch care providers, and of their specific care needs and opinions. The results of the study are presented in chapters 2 through 7. First, however, this introductory chapter will address a number of developments and signals that underscore the importance of this research, such as the expected changes in population demographics, in incidence of illnesses requiring palliative care, and the known specific care needs of Turkish and Moroccan patients and their families. Demographic and epidemiological developments In the Netherlands, the origins of the immigrant population are registered in the population registers up through the second generation. A person with a Moroccan or Turkish background is defined as a person who is either born in Turkey or Morocco himself or of whom at least one of the parents is born there. In 2010, the approximately 385,000 persons with a Turkish background made up 2.2 percent of the Dutch population, while the approximately 350,000 persons with a Moroccan background accounted for 2.0 percent of the total population (http://statline.cba.nl/StatWeb/publication). Population data further show that – unlike the native Dutch elderly population group – the group of men between the ages of 60 and 80 is relatively large (see Table 1.1). The high number of older men ‐ especially among Moroccan migrants – is related to their migration history. The Turks and Moroccans came to the Netherlands in response to shortages in the labour market in this country. The new arrivals were mainly young men who initially left their families in their country of origin. Their wives, who arrived later, tended to be younger. Table 1.1 Number of people of 50 years or older with a Turkish or Moroccan background in the Netherlands Age Total Turks
in 2010 Of whom men Total Moroccans
in 2010 Of whom men
50‐59 23,430 12,016 2,151 10,094 60‐69 17,499 8,915 15,469 9,819 70‐79 7,402 4,275 7,347 4,768 80‐89 666 217 487 321 90 + 41 5 18 7 50+ 49,048 25,228 44,472 25,009 80+ 717 220 505 328 Source: http://statline.cba.nl/StatWeb/publication/ 2‐8‐2010
Introduction 9
Earlier research has shown that many older Turks and Moroccans feel less healthy than does the elderly Dutch population (Meyboom & Van Eekelen, 1999; Stronks, 2001; Devillé et al., 2006; Lamkaddem et al., 2008). Turkish and Moroccan patients have also been observed to make more frequent use of the general practitioner, who in the Netherlands acts as a gatekeeper to secondary care facilities (Stronks, 2001; Uiters et al., 2006). However, older Turks and Moroccans do not make more frequent use of specialised care in hospitals (Uiters et al., 2006), and actually make less use of professional home care (Denktaş, 2009). The relatively high GP use by these groups may partly be explained by the fact of their poorer perceived health. Their often low socioeconomic position and limited acculturation may pose obstacles to finding the way to home care services. However, comparative research shows that the differences in health care consumption are not due to such factors alone, rendering the search for specifically culture‐bound health care needs more than justified (Uiters et al., 2006; Denktaş, 2009). People with cancer make up the largest target group in palliative care (Van der Velden et al., 2008). The Dutch Cancer Society has carried out research into the epidemiological characteristics of migrant patients with cancer. This revealed that, for now, migrants from Turkey and Morocco have lower cancer rates than found for the native Dutch population (SCK‐KWF, 2006). In the period 1995‐2000, the relative risk of dying from cancer (relative to the native Dutch mortality rate, with a confidence interval of 5%) was estimated at 0.95 for Turkish migrants and 0.44 for migrants from Morocco. However, the incidence of cancer among ‘non‐Western allochtones’ in the major Dutch cities is expected to rise from 6% in 2005 to 19% in 2030 (SCK‐KWF, 2006). Mortality from cancer and other chronic diseases among non‐Western allochtones – including people of Turkish or Moroccan descent – will also grow throughout the coming years (Van der Velden et al., 2008; SCK‐KWF, 2006). This increase in non‐acute mortality is attributable not only to the growth in number of elderly migrants, but also to the fact that younger generations are adopting bad Western lifestyle habits, such as smoking and an unhealthy diet (Pacemaker, 2008). Addressing cultural diversity issues is therefore an increasingly important factor in palliative health care. Specific care needs of Turkish and Moroccan immigrants Various studies have been conducted on the general care needs of elderly Turkish and/or Moroccan migrants and their informal caregivers (e.g. Moree et al., 2002; Yerden, 2000; Van den Brink, 2003). The care needs of elderly Turks and Moroccans have been found to correspond in part with those of needy Dutch elderly: their deteriorating physical condition interferes with their daily functioning, which means they must more and more turn to family members and professional care services for help with the shopping, domestic and personal care. In general, elderly Turkish and Moroccan migrants have only a patchy command of Dutch and
10 Chapter 1
therefore require help from the family with correspondence, telephone conversations and consultations with Dutch care providers. Hence Turkish and Moroccan family members are expected to provide support over a broader range of areas than Dutch informal caregivers. Moreover, the duty of care in Turkish and Moroccan families is far greater than in Dutch families (Yerden, 2000; De Graaff and Francke, 2002). Earlier research revealed that the care roles are often gender based: Turkish and Moroccan sons have a duty of maintenance towards their parents (‘bakim’ in Turkish), but care is mainly provided by the daughters (‐in‐law) (‘yardim’ in Turkish). This duty of care is so taken for granted in many Turkish and Moroccan families that the often heavily burdened daughters or daughters‐in‐law find it very difficult to hand over to or share this care with professional care providers (Frederiks & Korstanje, 2007; Yerden 2003; Van den Brink, 2003; Van Buuren et al., 2005). Turkish and Moroccan families tend not to be well informed about the various Dutch care services, such as home care, that are available. Moreover, many Turkish and Moroccan family members find the application procedures they need to go through to make use of these services difficult to understand (Moree et al., 2002). Recent studies have also shown differences between Moroccan and Turkish patients. Turkish patients in general seem to present the poorest health situation (Denktaş, 2006; Devillé at al., 2006) and Moroccans to make less use of Dutch healthcare facilities (Denktaş, 2011; Uiters, 2006). We examined these two groups together, as, in the Netherlands, they share a similar minority position and immigration history. We also thought that it would be interesting to include both groups, as we expected to find some variation between the two. For example, there are indications that Turkish women more often have jobs outside the home (Keizer & Keuzenkamp, 2011). They may consequently more often be ‘doubly’ burdened, but are also better informed about the available facilities in the Netherlands. The above‐mentioned studies examined the care needs of elderly Turkish and Moroccan patients and/or their families. At the start of the study less was known about the specific care needs of incurable ill Turkish and Moroccan patients and their family members in the Netherlands. Research elsewhere has shown, however, that the cognitions and attributions pertaining to incurable illness and dying are strongly culturally determined (Dogan & Deger, 2001; Vincent, 2001; Cetingoz et al., 2002). Previous research indicated that Turkish and Moroccan migrants view cancer as being caused by physical processes, but also by supernatural powers. The disease is preferably not talked about and should the physicians have given up on recovery, people with cancer and their families focus their hopes on Allah. This may be part of the reason Turks and Moroccans are less likely to make use of professional services such as home care (De Meyere, 2004; Koppenol‐van Hooijdonk et al., 2007).
Introduction 11
Structure and content of the book This book has a loosely chronological structure that illustrates how in each case the questions in the sub studies are a logical consequence of previous sub studies. As there were indications that Turkish and Moroccan immigrants made little use of home care during the terminal stage (the final part of the palliative stage), initially a qualitative study (see Chapter 2) on the use of home care for terminal Turkish and Moroccan patients was conducted. Based on interviews with family members, the following questions were to be answered: 1. What experiences do the Turkish and Moroccan families of terminally ill patients have of Dutch home care in the terminally phase? 2. What factors influence the access to and use of home care in the terminal phase according to these family members? The perspective of family members appeared to be different from that of professional care providers, and hence a survey was conducted among Dutch general practitioners and home care nurses. The central questions of this survey study were: 3. What experiences and perceptions do general practitioners and home care nurses have with regard to home care for terminally ill Turkish and Moroccan migrants and their families in the Netherlands? 4. What factors, according to them, influence the access to and use of home care in the terminal phase? The answers to these questions are presented and discussed in Chapter 3. Exploring the perceptions of Turkish and Moroccan family members (Chapter 2) and Dutch care providers (Chapter 3) yielded relevant insights, yet was at the same time encumbered by the methodological constraint that interviewees and respondents based their experiences on different case histories. Further qualitative research was therefore conducted on a specific target group, namely that of 33 patients with incurable cancer, in which per case several perspectives – of patients, family members and/or professionals ‐ were explored. The focus of the interviews was mainly on communication and decision making during the palliative phase. This topic was addressed, as the previous sub studies had shown that patients, family members and care providers all felt that communication and decision making concerning palliative care management was often inadequate. The various research questions arising in this study of 33 cases may be summarized as follows: * How does communication and decision making about the care and treatment of Turkish and Moroccan patients with cancer function during the palliative stage? * To what extent do ideas and expectations of patients, family members and care providers differ with regard to communication and decision making, and how do they handle possible differences?
12 Chapter 1
The results are presented in Chapters 4, 5 and 6. Chapter 4 looks at the differences in opinion about the desired communication and decision making. Dutch care providers often consider a timely discussion with the patient about the options for care and treatment when no cure is possible a matter of course. In many cases, this does not correspond with the notions of Turkish and Moroccan patients about what constitutes ‘good care’. Chapter 5 describes, on the basis of interviews with patients, family, physicians, nurses, pastoral care and social workers the way in which often complicated triad conversations take place between the patient, relative and care provider during the palliative stage In Chapter 6, the communication process of the patients, their family and their care providers are discussed and related to their divergent care management styles. Various communication variants occur, ranging from smooth communication and shared decision making amongst all actors to situations where both the communication within families and between care providers is fraught with difficulties. Lastly, the final sub study, a systematic literature study, was conducted to investigate the status quo of the research into palliative care for Turkish and/or Moroccan patients in 2010. When we started out in 2001/2002, little other relevant research had been carried out on palliative care for these target groups (De Graaff & Francke, 2002). But was this still the case? To find out, the Dutch and international literature databases and websites were searched. The questions posed in the systematic literature study are: What is known from previous research about 1. care experiences and care perceptions of incurable ill Turkish and Moroccan patients, their relatives and care professionals? 2. communication between these patients, relatives and care professionals regarding care and treatment in the palliative phase? The results of the systematic review are presented in Chapter 7, providing insight into the extent to which the findings of the sub studies presented in earlier chapters are corroborated by other academic studies. Chapter 8 discusses the results of the sub studies and reflects on the research process. The chapter closes with conclusions and recommendations for researchers, care providers and Turkish and Moroccan concerned parties.
Introduction 13
References Bruntink R: VPTZ reikt allochtonen de hand, [VPTZ holds out hand to immigrants]. Pallium 2008, 10(2):8‐11. Cetingoz R, Kentli S, Uruk O, Demirtas E, Eyiler F, Kinay M: Turkish people’s knowledge of cancer and attitudes toward prevention and treatment. Journal of Cancer Education 2002,17:55‐58. De Graaff FM, Francke AL: Zorg voor Turkse en Marokkaanse ouderen in Nederland, een literatuurstudie naar zorgbehoeften en zorggebruik [Care for Turkish and Moroccan elderly in The Netherlands; a literature study on their care needs and use of care]. Verpleegkunde 2002, 17(3):131‐139. De Meyere V: Verwerking van borstkanker bij Turkse vrouwen: op zoek naar een cultureel aangepaste ondersteuning [Turkish women dealing with breast cancer: in search of culturally congruent support]. Cultuur Migratie Gezondheid 2004, 2:2‐13. Denktaş S, Koopmans G, Birnie E, Foets M, Bonsel G: Underutilization of prescribed drug use among first generation elderly immigrants in the Netherlands. BMC Health Services Research 2010, 10:176. De Korte‐Verhoef MC, Teunissen, SCCM: Beter thuis sterven? Vroegsignalering door de thuiszorg bij patiënten in de palliatieve fase [Better die at home? Home carers’ early identification of palliative needs]. Utrecht, Palliatie Centrum/ NPTN, 2009. Denktaş S: Health and health care use of elderly immigrants in the Netherlands, a comparative study. Dissertation, Rotterdam, Erasmus University, 2011. Denktaş S, Koopmans G, Birnie E, Foets M, Bonsel G: Ethnic background and differences in health care use: a national cross‐sectional study of native Dutch and immigrant elderly in the Netherlands. International Journal for Equity in Health, 2009, 8:35‐43. Devillé WLJM, Uiters E, Westert GP, Groenewegen PP: Perceived health and consultation of GPs among ethnic minorities compared to the general population in the Netherlands, in: Morbidity, performance and quality in primary care; Dutch general practice on stage, Eds Westert GP, Jabaaij L, Schellevis FG, Oxon: Radcliffe Publishing ltd, 2006:85‐97. Dogan H, Deger M: Informed consent, surrogate decision makers, conflict of autonomy and the paternalistic approach, a case report from Turkey. Nursing Ethics, 2001, 8:556‐558. Feldmann CT, Bensing JM, De Ruijter A, Boeije: Afghan refugees and their general practitioners in The Netherlands: to trust or not to trust? Sociology of Health & Illness 2007, 4:515‐535. Francke AL, Kerkstra A: Palliative care services in The Netherlands: a descriptive study. Patient Education and Counseling 2000, 4(11):23‐33.
14 Chapter 1
Francke AL, Willems DL: Palliatieve zorg, vandaag en morgen. Feiten, opvatttingen en scenario’s [Palliative care, today and tomorrow. Facts, views and scenarios]. Maarssen, Elsevier, 2000. Francke AL, Willems DL: Terminal patients’ awareness of impending death. The impact on requested adequate care. Cancer nursing 2005;28(3)241‐247. Frederiks L, Korstanje M: “Ik had eigenlijk wel heel veel meer willen vragen”. Een verkennende studie naar de behoeften van mantelzorgers van allochtone patiënten, [“I had liked to ask much more questions”. An explorative study on immigrant patient relatives’ needs]. Utrecht, Hogeschool Utrecht HBOV, 2008. Keizer M, Keuzenkamp S: Gezondheid en arbeidsdeelname van migrantenvrouwen [Health and labour participation of female immigrants]. Den Haag, Sociaal Cultureel Planbureau, 2011. Klinkenberg M, Middelburg‐Hebly M: Consulentendiensten palliatieve zorg: meer eenduidigheid en kwaliteit [Consultancy in palliative care: more clarity and quality]. Utrecht, VIKC, 2010. Koppenol‐van Hooijdonk, MAGJ, Francke AL, Vlems FA, Nijhuis HGJ: Kanker bij patiënten met een Turkse of Marokkaanse achtergrond. Ziektebeleving, communicatie en zorggebruik [Cancer in Turkish and Moroccan patients. Disease perception, communication and use of care], IKR bulletin 2007, 31(1)10‐12. Lamkaddem M, Spreeuwenberg PM, Devillé WLJM, Foets M, Groenewegen PP: Changes in health and primary health care use of Moroccan and Turkish migrants between 2001 and 2005: a longitudinal study. BMC Public Health, 2008 Jan 29;8:40. Meulenkamp TM, Van Beek APA, Gerritsen DL, De Graaff FM, Francke AL: Kwaliteit van leven bij migranten in de ouderenzorg, een onderzoek onder Turkse, Marokkaanse, Surinaamse, Antilliaanse/Arubaanse en Chinese ouderen [Quality of elderly care for immigrants, a study among Turkish, Moroccan, Surinam, Antillean/Aruban and Chinese elderly], Utrecht, NIVEL, 2010. Moree M, Lyke S van der, Jong Y de, Lier W van: Interculturele familiezorg: een literatuurverkenning [Intercultural family care, a literature search], Utrecht, NIZW, 2002. Osse BHP, Vernooij‐Dassen MJFJ, Schade E, De Vree B, Van den Muijsenbergh METC, Grol RPTM: Problems to discuss with cancer patients in palliative care: a comprehensive approach. Patient Education and Counseling, 2002;47:195‐204. Pacemaker in Global Health: Gezondheidszorg en etnische diversiteit in Nederland. Pacemaker in Global Health [Health care and etnic diversity in The Netherlands], Amsterdam, 2007.
Introduction 15
Posma ER, Van Weert JCM, Jansen J, Bensing JM: Older cancer patients’ information and support need surrounding treatment: An evaluation through the eyes of patients, relatives and professionals. BMC Nursing 2009, Jan 19;8:1. Signaleringscommissie Kanker van KWF kankerbestrijding: Allochtonen en kanker, sociaal‐culturele en epidemiologische aspecten [Immigrants and cancer, socio‐cultural and epidemiological aspects]. Amsterdam, KWF Kankerbestrijding, 2006. Stronks K, Ravelli ACJ, Reijneveld SA: Immigrants in the Netherlands: Equal access for equal needs? J Epidemiol Community Health 2001, 55:701‐707. Tesser PTM, Dugteren FA van, Merens JGF: Rapportage minderheden 1998, de eerste generatie in de derde levensfase [Minorities report 1998, older immigrants of the first generation], Den Haag, Sociaal Cultureel Planbureau, 1998. Uiters E, Devillé WLJM, Foets M, Groenewegen PP: Use of health care services by ethnic minorities in the Netherlands: do patterns differ? European Journal of Public Health, 2006, 16:388‐393. Van Buren L, Hallich B, Cleven M, Joung IMA, Van Koutrik J, Yerden I: Mantelzorg in de Turkse cultuur. Zorg aan chronisch zieke Turkse ouderen in Nederland [Informal care in Turkish culture. Care for chronically ill Turkish elderly in The Netherlands], Rotterdam, GGD Rotterdam e.o. en PRIMOnh., 2005. Van den Brink P, Adlim T: Interculturele palliatieve zorg, vraaggericht en individueel. Achtergrondinformatie, adviezen en tips voor zorgondernemers, managers en zorgverleners [Intercultural palliative care, demand‐ and individual‐oriented. Background information en advices for care managers and professionals]. Utrecht, ACTIZ, 2009. Van den Brink Y: Diversity in care values and expressions among Turkish family caregivers and Dutch community nurses in the Netherlands. Journal of Transcultural Nursing, 2003, 14:146‐154. Van den Muijsenbergh METC: Palliatieve zorg door de huisarts [Palliative care of GPs], Nijmegen SSN, 2001. Van der Velden LF, Francke AL, Hingstman L, Willems DL: Dying from cancer or other chronic diseases in the Netherlands: ten‐year trends derived from death certificate data. BMC Palliative Care 2009, Feb 4;8:4. Van Hooijdonk C, Droomers M, Seerenberg M, Mackenbach JP, Kunst AE: Higher mortality in urban neighbourhoods in the Netherlands: who is at risk? J. Epidemiol Community Health 2008, 62:499‐505. Vincent JL: Cultural differences in end‐of‐life care. Critical Care Medicin,2001, 29(2):Suppl.N52‐55.
16 Chapter 1
Yerden I: Zorgen over zorg. Traditie, verwantschapsrelaties, migratie en verzorging van Turkse ouderen in Nederland [Concerns about care. Tradition, family ties, migration and care of Turkish elderly in The Netherlands], Amsterdam, Spinhuis, 2000. Yerden I: Blijf je in de buurt?: woonsituatie, mantelzorg en professionele zorg bij zorgafhankelijke en bedlegerige Turkse ouderen, Amsterdam, Aksant, 2003.
Introduction 17
18 Chapter 1
2 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 This chapter has been published as: De Graaff FM, Francke AL: 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. Int J Nurs Stud 2003, 40:797‐805.
Home care for terminally ill Turks and Moroccans 19
Abstract 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.
20 Chapter 2
Introduction Although the Netherlands has been a haven for immigrants for decades, little is known about the experience of care and preferences of elderly immigrants in the Netherlands. At the moment Moroccans and Turks are interesting groups of immigrants, because the number of elderly Moroccans and Turks over the age of 55 is increasing very fast. In 1996 15,380 Turks and 13,875 Moroccans over 55 years of age were living in the Netherlands, in 2001 their numbers were 23,315 and 20,470 (Central Bureau of Statistics, 2002), an increase over 5 years of 49%. The study presented was carried out in order to provide more insight into clients’ experiences regarding the home care of terminally ill Turks and Moroccans and their families. Professional home care organizations suppose that terminally ill Turks and Moroccans and their families do not use the care available very often. However, these organizations are not sure of this because the ethnicity of their clients is not recorded by all home care organizations, and care research with a focus on terminally ill Turks and Moroccans in the Netherlands is not available. Some studies have looked at the experience of care and preferences of elderly Turks or Moroccans in the Netherlands in general, though these do not focus on terminal patients. Two of these studies were carried out among intermediaries, e.g., social workers, and indicate that the use by Turks and Moroccans of home care services is limited because they are unacquainted with the Dutch home care system (Beljaarts, 1997; Maravelias, 2000). Studies performed by Van Toorn (1994) among elderly immigrants in Rotterdam, and by Yerden (2000) among elderly Turkish people in the province of North Holland suggest that feelings of honour and shame in the immigrant communities, financial constraints, and the fact that care available is not adapted to the needs of immigrant families also inhibit the use of professional home care. The studies mentioned emphasize the importance of increased data on the experience of Turkish and Moroccan terminally ill patients and their families of home care services. This is particularly important because Turkish and Moroccan terminally ill elderly sometimes suffer from care problems, e.g., decubitus ulcers (Van den Brink, 2000) which can be solved if treated properly, and there is some indication that the relatives can easily become overburdened with the care needs of these clients (Yerden, 2000). Although Moroccans and Turks are quite different in language and cultural background, both groups are included in this study because their situation in the Netherlands is to a large extent comparable in that immigration from Turkey and Morocco started in 1965 as a response to labour shortages in the Netherlands. Most immigrants from Turkey and Morocco were young at that time and have now reached pensionable age. Although many immigrants dream of returning to their home country, most of them stay in the Netherlands. They are the first cohort of Turkish and Moroccan elderly who, on becoming terminally ill, are potential users of the palliative services of Dutch home care organizations.
Home care for terminally ill Turks and Moroccans 21
In this study the following research questions were addressed: 1. What experiences do the Turkish and Moroccan families of terminally ill
patients have of Dutch home care in the terminal phase? 2. What factors influence the access to, and use of home care in the terminal
phase? In this article ‘home care’ means the home care, home nursing, health education and supply of technical aids offered by a professional home care organization in the Netherlands to terminally ill patients and their families at home. Home care is mostly financed by the Dutch government via the General Act on Exceptional Medical Expenses (AWBZ), which is financed by tax revenue. In addition patients pay a small amount per hour or per service. Home care providers are defined according to educational level and specialization as district nurses, enrolled nurses and home helps (Adam and Hutten, 2001), though this article will use the term ‘nurses’ for all home care providers. These nurses often work closely with the general practitioner, who is responsible for the medical care of terminally ill patients, while they are living at home. Often the general practitioner is the person who initially refers patients to home care, though, independent regional assessment agencies have responsibility for carrying out a formal needs assessment. The system of primary health care based on home care and general practice is well developed in the Netherlands, resulting in a higher percentage of the elderly dying at home than elsewhere (Francke & Willems, 2000). Method Sample and recruitment Although the care experiences of terminal patients themselves are very important, for ethical and practical reasons it was decided to interview relatives. Only relatives of terminally ill Turkish or Moroccan patients, or relatives of Turkish or Moroccan patients who had died after a chronic terminal illness, were included in this study. Relatives of patients who died before the terminal phase were not included. To find enough respondents, the researcher sent written information about the study to more than 100 relevant care organizations (some professional home care organizations, voluntary terminal care organizations, hospices, healthcare centres and general practices in the areas with large numbers of immigrants) and asked to be introduced to potential respondents. In addition, more than 90 Turkish and Moroccan teachers, social workers, active members of mosque organizations and health advisers who were personally known to the researcher, were asked to recruit respondents. The latter procedure had more success than the approach via the formal organizations. As a result 19 respondents were accrued, with a fair distribution of Turkish and Moroccan families and including users and non‐users of home care. The researcher also tried to recruit families living in mainly Turkish or Moroccan neighbourhoods in the Netherlands as well as families living in ‘white
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areas’ as the former may have different experiences than the latter. Table 2.1 shows some social and demographic data of the respondents. Table 2.1 Characteristics of the relatives and their terminally ill patients No Nat.
patient Sex Relation of
respondent to patient
Use of inter‐preter
Illness and cause of death
Patient living with respondent
Place of death care
Use of home
1 T w D‐in‐law ‐ Liver sickness + Turkey ‐ 2 T w D‐in‐law ‐ Kidney
sickness + Hospital ‐
3 T w Son ‐ Stroke ‐ Still alive + 4 T m Daughter ‐ Cerebral
haemorrhage ‐ Still alive +
5 M m Daughter + Heart failure + Hospital ‐ 6 M m Wife + Liver cancer + Hospital ‐ 7 M m Wife + Liver sickness + Hospital ‐ 8 M m Wife ‐ Heart
disease + Morocco +
9 M w Daughter + Cervical cancer
+ At home +
10 M w Son + Infirmities of old age
+ At home +
11 T m Daughter + Lung cancer Partly Turkey + 12 T w Daughter ‐ Brain tumour ‐ Nursing
home ‐
13 T w Daughter ‐ Heart failure Partly Nursing home
‐
14 T w Son and D‐in‐law
‐ Sickness of kidney. lung and heart
+ At home +
15 M m Wife ‐ Lung cancer + At home + 16 T m Parents
and sister ‐ Brain disease ‐ Hospital ‐
17 M w D‐in‐law ‐ Intestinal cancer
Partly At home +
18 M m Children ‐ Liver cancer + Hospital ‐ 19 M m Wife + Liver sickness + At home ‐ T = Turkish, M = Moroccan, m= man, w = woman, D‐in‐law = daughter‐in‐law + = positive in this characteristic; ‐ = negative in this characteristic Informed consent was obtained from each respondent verbally after the first meeting with the interviewing researcher. The respondents’ verbal consent and the rest of the interview were recorded on tape. Only one respondent did not give permission for the interview to be recorded on tape. In this case the researcher made notes. If relatives preferred to talk in their own language rather than in Dutch, an interpreter was organized. Although the researcher speaks Moroccan Arabic and a
Home care for terminally ill Turks and Moroccans 23
little Turkish, she has not mastered the Berber languages, and prefers not to misinterpret the data. Six interviews were held with the help of an interpreter: one Turkish and five Moroccan. Nine families in the research sample had used professional home care in the terminal phase of their family members’ illness. Only six families had experience of hospital care or nursing home care instead of home care. Two interviews were with the families of terminally ill patients who were still alive. The other interviews were held several months after the death of the patient. Data collection and analysis The qualitative method used in this study was based on the principles of the ‘grounded theory’ developed by Strauss and others (Glaser & Strauss, 1967; Strauss & Corbin, 1990). The grounded theory approach means that the researcher has no clear‐cut hypotheses beforehand, but is open to new insights and starts data collection with broad research questions. Based on this information the researcher can devise more accurate research questions. Data collection and analysis are alternating elements of this cyclic research process. The respondents received some written information about the aim of the study and the topics that would be discussed in the interview. The interviews lasted between 1 and 2 h. Respondents first described the health situation of their terminally ill family member and how the family care was organized. In this context they told the researcher about their experiences (or the lack of experiences) with Dutch home care. Their stories revealed which factors influenced the access to and use of home care. Finally they were invited to evaluate the care process, to describe their care needs and those of their terminally ill family member and to say what types of care (would have) met these needs. In accordance with the principle of ‘‘theoretical saturation’’ (Glaser and Strauss, 1967), it was decided to stop data collection after 19 interviews, because the last interviews did not give any new information. The verbatim texts were typed and qualitatively analyzed. The texts were read through many times and codes assigned to important text fragments using Winmax, a computer program for arranging qualitative data. Examples of these codes are: ‘personal characteristics’, ‘family characteristics’, ‘actions of family carers’, ‘rituals in terminal phase’, ‘consciousness being terminally ill’, etc. Interviews were read and coded by the co‐author and other researchers to prevent one‐sided interpretations of the research data. To improve the quality of the data analysis, interim analyses were discussed with Dutch, Moroccan and Turkish experts. Furthermore, analyses were discussed with members of the steering committee, colleagues and a working group of qualitative researchers, a process known as peer debriefing (Lincoln & Guba, 1985).
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Results Experiences of Dutch professional home care for the terminally ill Use of home care The sample included nine users and ten non‐users of home care in order to observe the experiences of both groups and to get insight into the differences between the characteristics or living conditions of both groups. The user characteristics of the families appeared to be quite different, ranging from deliberate non‐users to the reluctant and elective users. It appeared that non‐users intentionally preferred to rely on family care only. They tried to care for the terminally ill within the family, but were often forced to bring the patient to the hospital or nursing home in his last days because they were unable to provide appropriate care at home. The reluctant group included respondents who would have used the facilities of home care if they had been better informed about them. These respondents said that they regretted that they had not used home care, because they felt it would have been better for their patient and for themselves. The elective users had enough information about the home care facilities and accepted professional home care for the care needs of the patient and relatives. This group gave us a lot of information about the experience of home care. They felt that professional home care supplements family care and enhanced the quality of care. None of the users regretted using home care. Some users gave lively descriptions of the loaned nursing aids, such as the movable bed, the trapeze, the decubitus mattress, wheelchair, or alarm. Users were also satisfied with the support they received from the home care personnel. Most nurses who worked in these families were Dutch. Only one Turkish respondent got help from a professional with a Turkish background. In general, professional support meant short home visits by a nurse. Only one Moroccan patient used a special offer of night care for terminal patients. Several respondents said they were pleased that the nurses instructed them how to manage decubitus ulcers, wounds, injections, etc. They were grateful for the nurses’ assistance in supporting the patient in daily activities of living and said that they gave them more information about the illness and its treatment, as the wife of a Moroccan lung cancer patient demonstrated:
I was looking on while she was dealing with treating the wound. Twice or three times a night I cleaned it myself. The nurse showed up to check on the wound, three times a day she came by to clean it and then I said: ‘‘I’ll take care of the rest’’.
The home care users viewed most of the nurses as ‘helping friends’. Some users were disappointed that these ‘friends’ did not visit following the death of their terminally ill family member. Some respondents also argued that home care organizations should employ more Turkish professionals: ‘‘This enables my very ill mother to communicate directly with the professional without my interference. She likes to express her feelings and chat to the nurse’’. The terminally ill Turkish
Home care for terminally ill Turks and Moroccans 25
and Moroccan patients could not converse easily in Dutch. However, severe communication problems were mentioned more often in connection with doctors than with nurses. Many respondents reported that they had difficulty with the contradictory questions of their family member and the doctors. In one case a general practitioner asked the daughter in law of a terminal patient to tell the patient that she would die soon. Being only the daughter in law, it was difficult and culturally inappropriate for her to relay this message when other family members were gathered in the same room. Access to home care Respondents remembered that the home care started with a formal needs assessment interview, and a lot of questions about the needs of the patient and the family. However, in their view it was their general practitioner who usually suggested the use of home care and they were grateful to the general practitioner for this. Other families received home care after being discharged from hospital. They observed that their medical specialist in the hospital referred them for home care. Families who were not informed about the availability of home care blamed their general practitioner for the lack of this information.
He just thinks it’s sad. He really regrets the fact that his mother didn’t die at home, surrounded by her family. He says: ‘‘The doctor might have known, that this woman didn’t have long to live anymore, and why couldn’t he inform the family’’ [about the fact this woman might have died at home with the aid of home care services] (Interpreter rendering the words of a Moroccan respondent whose mother died at the hospital without any of her family).
Factors influencing the access and use of professional and voluntary home care In analyzing the data, some factors influencing access to and use of home care were discerned such as ‘illness and cause of death’, ‘family structure’, ‘decision making in the family’, ‘pressure from the community’, ‘information and support from informal and professional care providers’ and ‘formal referrals’. In addition another factor, namely ‘family preferences regarding family care’, was highlighted as affecting these other variables. Figure 2.1 illustrates the relationship between the factors that influence access to and use of home care. It appeared that all factors playa role in the Turkish and the Moroccan terminal care‐situation, but the influence of some factors is stronger in one of these groups. In the subsequent paragraphs the different factors and their effects on the care situation in Turkish and Moroccan families will be further explained, and how the general factor ‘family tied preferences regarding family care’ affects all other variables.
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Figure 2.1 Variables affecting access to and use of home‐care
Needs Wishes
Considerations about family care
Lack of understanding of illness and cause of death
Family structure Decision making patterns Values and norms about care
Social environment Living conditions Informal information
Formal information Referrals Supply of home care Quality of home care
Access to and use of professional homecare
Access to and use of voluntary homecare
(Lack of) understanding of illness and cause of death Several Turkish and Moroccan respondents said that their terminally ill family member had not understood the diagnosis and prognosis of their disease, while they themselves did not understand it either. The diagnosis was often given by the GP just before death, so they were not prepared to organize home care. Some blamed the general practitioner for not acknowledging the seriousness of their patient’s illness. In acute situations, the patient was often brought to the hospital, where seven out of 19 died. Half of them were not aware that terminal home care might have been provided in order to let them die at home. The other half had been informed, and two patients had left the Netherlands because they preferred to die in their home country whilst another died in Turkey on his last holiday there. It appeared that the factor ‘cause of death’ is also relevant to the use of home care, because some types of illness are more identifiable than others. When it was clear that the illness had progressed and the patient required the use of technical aids and nursing care, general practitioners or medical specialists made more referrals to home care and, if necessary, assisted the Turkish and Moroccan families in their request for these facilities. But when the cause of the illness was less clear, or the
Home care for terminally ill Turks and Moroccans 27
patient’s health deteriorated rapidly, doctors and family members had often not discussed what could be done best and by whom. In those uncertain circumstances one of the special wishes of Turkish and Moroccan patients to die in their home country (which is their cultural background), could not be considered effectively.
But when the doctor mentioned she was actually dying, he immediately added that she could not be transported anymore, as a trip reduces a patients’ life with 20 days—she wouldn’t even make it to the hospital in Turkey (Turkish woman, having taken care of two mothers‐in‐law until their death).
The fulfilling of such a wish was dependent on other factors, for example, the ties that the patient still had in his home country, and the health care facilities in that region. Some patients were welcomed by their family in Turkey or Morocco. Other patients, however, realized that the family care situation in their home country was not reliable enough. This latter group was more likely to use home care.
We then had a talk with our GP and my father‐in‐law, and he immediately organized a ticket, right there within 5 min, in order to take her back to Turkey. That’s where she died three weeks later (Turkish woman, having taken care of two mothers in‐law until their death).
Family structure One might expect that in large extended families there would be enough family members to share the responsibility of care. The interviews revealed, however, that this is not a true assumption. There was limited support of family members in Morocco or Turkey and of members of the community living in the Netherlands. In some cases many relatives visited the terminally ill patient, bringing and sharing food and social talk. However, the daily physical caring was almost always carried out by one female family member.
Whenever something had to be done, it always came down to me. ‘‘Just you come to the hospital’’. It’s true I’ve always been helpful. A tradition has been built up, for me doing this now. I feel like a social worker and a little nurse at the same time (Young mother, taking care of her Moroccan mother‐in‐law, besides having her own 6 children).
The respondents said that seeing a naked body is considered a shame in their culture and therefore is often reserved for one intimate person. In most families the physical care was a women’s job. Men could provide support by shopping, organizing and transporting, but they seldom assisted the patient with activities of daily living. The principal family care giver was sometimes the patient’s wife, but usually his or her daughter, or daughter‐in‐law. The factor ‘family structure’ appeared to be quite relevant for the access to and the use of home care. The structure of Turkish and Moroccan families is different from the average Dutch family: Turks and Moroccans often have stronger ties to family members in the extended family than Dutch people. Younger members feel obliged
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to obey the older family members and to care for them in time of need (Van den Brink, 2000; Yerden, 2000). If necessary the daughter, or daughter‐in‐law, who is responsible for the personal care of the terminally ill family members will move into the home of the patient, or the patient will stay in the home of his/her children. One Moroccan respondent told us that her terminally ill mother‐in‐law left the hospital to be cared for in her daughter‐in‐law’s house. She did not return to her own house, because her husband was not able to care for her. The interviews confirmed the impressions that the Moroccan families are still more self‐reliant while the need to use professional home care is already more prominent in Turkish families, which maybe because more Turkish women have jobs outside their home.
My four sisters work, I work part‐time, I must therefore look after my parents. It was really difficult, as I also had a job. I stopped work after four months. My health worsened and I have neglected my children (Turkish woman, having taken care of her very ill mother for years).
Decision making in the family According to the respondents their choice to use or not to use home care was strongly related to the capacity of the extended family to supply informal care. The question whether to use home care or not was often not taken by the patient, but by the (male) head of the family or the principal (female) care provider. When the decision to use home care was delegated to the men in the family, they often argued that their family did not need any help from outside. When women were active in the decision making process, they were far more willing to ask for professional support. The illness and caring needs of the terminally ill patient sometimes evoked internal family problems. For example, when the head of the family did not want to use professional home care because this would be inviting a ‘stranger’ into the family home, while the principal family care giver wanted help with the daily caring activities. Some respondents regarded this tension as a cultural conflict: Turkish and Moroccan elderly will not adopt ‘Dutch’ mores.
My father’s brother wanted to decide, as he felt he was the closest family member. I said, ‘‘No, first comes my mother and then the children, you don’t have anything to do with this.’’ I was maybe thinking in Dutch and he in Turkish (Turkish woman taking care for her terminally ill father).
Pressure from the community Decision making in many Turkish and Moroccan families in the Netherlands is not a matter of personal responsibility, but a family affair. As the family is part of a local and ethnic community, this social environment influences the choices made about the (home) care of terminally ill family members. Many Turkish respondents suggested that they took in sick relatives for fear of social pressure.
Ties between us are very strong. Too strong. That’s why I say we sometimes need to turn ourselves into hypocrites, because many children have their in‐
Home care for terminally ill Turks and Moroccans 29
laws come and live with them and have them cared for— not because they want it, but because of our values and traditions. Social pressure from amongst Turkish people also plays a role (Turkish man whose wife took care of his mother until her death)
The social control of the Turkish and Moroccan community is probably stronger in the areas where a lot of Turkish and Moroccan families live. Those respondents who lived in mainly ‘white’ areas seem to be more open to using Dutch facilities such as home care, while respondents living in immigrant areas had to take their neighbours’ opinions into account more. Information and support from informal and professional health workers The choice of whether or not to use home care was also influenced by the information the Turkish and Moroccan families received about home care and other alternatives. Some of the respondents were fully informed by their general practitioner or by Turkish and Moroccan health educators. But for many respondents the most important source of information was provided by informal ‘intermediaries’: family members, colleagues or close friends working in the health care sector. The intermediaries not only kept these families informed, but often assisted in the process of channelling the families through the labyrinth of the Dutch health care system. This support was especially needed if the patient and his principal family care giver did not speak Dutch. The intermediaries’ strength appeared to be their confidential relationship with the family, their weakness was that they were not able to inform the families about all Dutch care facilities in detail. The factor ‘(lack of) information’ will have greater influence on the access to and use of home care if the Turkish or Moroccan family members are not able to read or understand the Dutch language. Formal referrals The introduction to Dutch home care is often given by the general practitioner. Patients who had first been in hospital, were sometimes referred to home care by their medical specialist. The respondents assumed that doctors who could refer them to home care, sometimes did not do so because they had the impression that these Turkish and Moroccan patients could be cared for sufficiently by their family. Perhaps they did not realize that although a lot of family members were gathered when they visited the family, each family member had his own reason to be present. For example, to represent the family officially, or to interpret the discussions or to drive other family members to this meeting. Doctors, however, often did not meet the female family member who was responsible for providing physical care giving, so they were unable to measure the home care burden on the principal care giver. The female respondents in this research felt that general practitioners and other assessment consultants should take their needs into account. In the experience of some respondents their general practitioner was committed to informing the family and to organizing tailor made home care. One very dedicated
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general practitioner made it possible for her heart and lung patient on holiday in Morocco, to get extra bottles of oxygen, via the Social Health Insurance Office in Rabat, up to the airport at Oujda near the border of Algeria, so that he could die in his village near Oujda, united with all his children some of whom lived in the Netherlands, some in Morocco. This general practitioner not only informed her patient very well, she also obtained all the necessary information for herself in order to treat the patient optimally. Her dedication to this patient and her advice to use home care to ease the family situation in the terminal phase is well known in the Moroccan community in this town. Conclusions and discussion Our study indicates that those Turkish and Moroccan terminal patients and their relatives who do use Dutch professional home care are often satisfied with the care received. In particular, they appreciate the loan of equipment and the practical support of the home care personnel. Although some Turkish and Moroccan respondents observed friendly and less friendly professionals, in general they were positive about the nurses delivering home care. In fact, the Moroccan and Turkish respondents were often more satisfied with the communication of the nurses of the home care organization, than with general practitioners. Within the Turkish and Moroccan families unwritten rules tell everybody when to speak and to whom (for example, when speaking about imminent death). General practitioners were often not aware of these culturally defined patterns of behaviour, nor of their giving offence to the patients and their families. Nurses had more understanding of these unwritten codes. Perhaps nurses prevent communication problems by taking more time to share the family sorrows, taking part in daily life and to comfort the relatives and patient. In this process the non‐verbal physical contact with the patient may have played an important role. More contact over a longer period may have resulted in the positive opinion of the respondents about the nurses compared to their critical judgement of some general practitioners. The data also revealed that terminally ill Turks and Moroccans and their relatives are often restrained about using professional home care. This is caused by several factors. An important factor which inhibits their access to and use of Dutch home care is the fact that the patients and relatives are often not aware that the patient will die soon. They are unaware that the symptoms and problems in the terminal phase will probably worsen, which will make professional home care necessary. Whether this is specific for Turkish and Moroccan immigrants is, however, questionable. In the study of Francke & Willems (2000) among Dutch terminally ill patients it was found that many patients and their relatives were not aware of the fact that the patient would soon die, which sometimes also resulted in crisis situations in which no home care was organized. Another main factor which inhibits Turks and Moroccans from using Dutch home care is the wish of the terminally ill patient to die in their home country. Although many patients are unable to fulfil this wish, this can be a reason for the fact that
Home care for terminally ill Turks and Moroccans 31
patients and relatives do not consider the possibilities of Dutch (home) care facilities. In addition, the belief in Turkish and Moroccan communities that (female) family members are obliged to care for terminally ill relative seems to be related to a limited use of professional home care, men in particular often arguing that their family does not need any outside help. Women however are more open to receive support from external professionals, as they often carry the heaviest responsibility for physical care. The social environment also strongly influences the use or non‐use of professional help. This study and the studies performed by Van Toorn (1994) and Yerden (2000) suggest that feelings of honour and shame may inhibit the use of professional home care. The study also reveals that social control seems to be weaker in ‘white’ areas, where Turkish and Moroccan families maybe more willing to accept professional home care than their brethren in areas with a larger Turkish and Moroccan population. This study, and the studies of Beljaarts (1997) and Yerden (2000) show that Turkish and Moroccan patients and relatives are not well acquainted with the Dutch (home) care system, and that where they had received information about home care, it was often delivered by informal intermediaries. General practitioners often do not refer Turkish and Moroccan families to home care, even when the burden of care is too heavy for the family caregivers, possibly because they think that close family ties ensure that there are enough family members to care for the terminal patient. This study indicates, however, that despite the often large families and the close ties within the family, the direct care is often provided by one female family member for whom this experience is a hard and stressful duty. General practitioners should arguably inform terminal Turkish and Moroccan patients and their relatives about the possibilities of professional home care, which may help prevent Turkish and Moroccan patients being admitted to hospital to die, when home care is not organized in time. An important question is whether these findings are specific to the situation of Turkish and Moroccan terminally ill patients and their relatives in the Netherlands? Are there similarities to (a) terminally ill Turkish and Moroccan patients and their relatives living in their home country or in other countries, and (b) other immigrant groups living in the Netherlands or in other European countries? Despite an intensive literature search the author found no studies which addressed the former, whilst there were a few relevant studies in relation to the latter (Gaffin et al., 1996; Spruyt, 1999). Stevens et al. (1994) describe the willingness and expectations for giving family care in Moroccan and Dutch families. They concluded that in general the Moroccan were more willing to care for their elderly (including terminally ill) family members than Dutch people, but many potential family carers expected problems in combining family life, a job and the care of their parents. This seems in line with the results of this study which shows that female family carers were very willing to take care of their terminally ill relative, but experienced this as
32 Chapter 2
a very heavy task which was often difficult to combine with the care of their own children or household. Another relevant study is the one performed by Gaffin et al., (1996). These researchers described the results of a campaign of the National Council for Hospice and Specialist Palliative Care Services in London, to provide specialist palliative care by a network of home care, day care and hospital care in three areas with high ethnic populations. The study also concluded that a more culturally sensitive service provision is recommended. Finally, in a study of Spruyt (1999) into the palliative care experiences of 18 Bangladeshi patients and family carers in London were described. As in this study, Spruyt found that family carers sometimes do not agree with the disclosure of the diagnosis to the patient. Nearly all patients mentioned communication problems with professional staff, because they did not understand the English language and had to rely on family members for translation. Spruyt concluded that many patients suffered from poorly controlled symptoms and pain. It is remarkable that all studies mentioned indicate that terminally ill patients of ethnic minorities face serious care problems, which often cannot be fully dealt with by their relatives. As a result of these findings, it is recommended that home care organizations and referrers (e.g. general practitioners) provide more information about the available home care to terminally ill patients and their relatives with a Turkish, Moroccan or other immigrant background.
Home care for terminally ill Turks and Moroccans 33
References Adam SGM., Hutten JBF: The Netherlands, In: Philp, I. (Eds.), Family Care of Older People in Europe. IOS Press, Amsterdam, 2001. Beljaarts MAMM: Zorg voor allochtone ouderen [Care for immigrant elderly]. Instituut voor Sociaal Economisch Onderzoek, Rotterdam, 1997. CBS, Central Bureau of Statistics in the Netherlands, Statline, consulted on internet on 9‐4‐2002. Francke AL, Willems DJ: Palliatieve zorg vandaag en morgen: feiten, opvattingen en scenario’s [Palliative care today and tomrorrow: facts, views and scenarios]. Elsevier, Maarssen, 2000. Gaffin J, Hill D, Penso D: Opening doors: improving access to hospice and specialist palliative services by members of the black and minority ethnic communities. Commentary on palliative care. British Journal of Cancer Supply 1996, 29:51–53. Glaser BA, Strauss AL: The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine Publishing Company, Chicago, IL, 1967. Lincoln YS, Guba EG: Naturalistic Inquiry. Sage, BerverlyHills, 1985. Maravelias S: Allochtoon personeel en allochtone cliënten bij algemene ouderen‐voorzieningen in de stad Utrecht [Immigrant workers and clients in elderly care provisions in Utrecht]. Gemeente Utrecht, Utrecht, 2000. Spruyt O: Community‐based palliative care for Bangladeshi patients in east London. Accounts for bereaved carers, Palliative‐Medicine, 1999:119–129. Strauss AL, Corbin J: Basics of Qualitative Research, Grounded Theory Procedures and Techniques. Newbury Park, Sage Publications, London, 1990. Stevens FC, Ten Have ML, Philipsen H, Serpenti L, Elmas T: Familiezorg voor Molukse en Nederlandse ouderen: een vergelijkend onderzoek naar bereidheid en verwachtingen [Family care for Moluccan and Dutch elderly: a comparative study of their expectations], Tijdschrift Sociale Geriatrie 1994: pp. 184–191. Van den Brink Y: Transculturele Familiezorg Thuis, Zorgpraktijken en ‐opvattingen van Turkse mantelzorgers in Rotterdam [Transcultural care at home, practices and views of Turkish relatives]. KCW Rotterdam, Rotterdam, 2000. Van Toorn M: Allochtone ouderen: een zorg(e)loze toekomst? Onderzoek naar de ervaringen in Rotterdamse zorg‐,hulp en dienstverlenende instellingen [Immigrant elderly: a care‐free future? The experiences of care institutions in Rotterdam], Rotterdam, 1994. Yerden I: Zorgen over zorg. Traditie, verwantschapsrelaties, migratie en verzorging van Turkse ouderen in Nederland [Worrying about care: tradition, family ties, migration and care]. Amsterdam, 2000.
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3 Barriers to home care for terminally ill Turkish and Moroccan migrants, perceived by GPs and nurses: a survey This chapter has been published as: De Graaff FM, Francke AL: Barriers to home care for terminally ill Turkish and Moroccan migrants, perceived by GPs and nurses: a survey. BMC Palliat Care 2009, 8:3.
Barriers to home care for Turks and Moroccans 35
Abstract Background Previous qualitative research proved that relatives of elderly terminally ill Turkish and Moroccan immigrants experience several barriers to the use of Dutch professional home care. The aim of this study was to explore how general practitioners and home care nurses perceive the home care for terminally ill Turkish and Moroccan migrants and their families in the Netherlands. Methods Questionnaires were sent to home care organizations and GPs working in areas where most of these migrants are living. 93 nurses and 78 GPs provided information about their experiences and opinions regarding home care for this group of patients. The data were analyzed by descriptive statistics. Results GPs refer relatively few patients from these migrant groups to home care. They often find it difficult to assess the needs of these patients and their families. In 40% of the GPs’ cases in which terminally ill Turkish and Moroccan migrants were not referred to home care, the GP regretted this afterwards: the patients had not received sufficient qualified care, and their informal carers had often become overburdened. In addition, home care nurses often express dissatisfaction with the home care given to terminally ill Turkish or Moroccan patients, because of communication problems, the patients’ lack of knowledge of the disease, or difficulties in making suitable appointments with the patient or with the family. Conclusions Nurses and GPs cite chiefly similar factors influencing access to and use of home care as family members did in a previous study. However, according to GPs and nurses, the main barrier to the use of home care concerns communication problems, while relatives cited the preference for family care as the main reason for abstaining from the use of home care.
36 Chapter 3
Background Many studies indicate that care at the end of life does not reach all patients equally: migrants for example tend to receive less end‐of‐life care in hospices or at home (MacGrath et al., 2001; Krakauer et al., 2002; Niroshan & Clark, 2004; Enguidanos et al., 2005; Francoeur et al., 2007; Haas et al., 2007; Doorenbos & Schim, 2004). Moreover, when they do receive care, the c
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