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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
Link to publication
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
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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.
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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
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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
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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
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16 Chapter 1
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Yerden I: Zorgen over zorg.
Traditie, verwantschapsrelaties, migratie
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woonsituatie, mantelzorg en professionele
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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
22 Chapter 2
-
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).
24 Chapter 2
-
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.
26 Chapter 2
-
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
28 Chapter 2
-
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
30 Chapter 2
-
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
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Instituut voor Sociaal Economisch Onderzoek, Rotterdam, 1997. CBS, Central Bureau of Statistics
in the Netherlands, Statline, consulted on
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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
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London. Accounts for bereaved carers, Palliative‐Medicine, 1999:119–129. Strauss
AL, Corbin J: Basics of
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FC, Ten Have ML, Philipsen H,
Serpenti L, Elmas T: Familiezorg
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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,
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34 Chapter 2
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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
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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