Participation chances and access to information
for Kurdish migrant women in health services
By Theda Borde (*)
When we look at the process of integration of Kurdish women in the countries of the European Union, health services are a setting, where integration processes, specific needs of immigrant groups and the question of how health services adapt to patients with different social and cultural background can be observed. Most Kurdish people living in Germany migrated from Turkey in the 1960s and 1970s when the so called “guest workers” arrived, followed by their wives and children in the 1980s, who then settled in the following years. Other Kurdish men, women and families came as asylums seekers from Turkey, Iran, Irak and Syria, some also in order to study in Germany and again others - men and women - as wives and husbands of second and third Kurdish immigrant generation. As there are no statistic data on Kurds in Germany available, we need to refer to estimated numbers, which show, that the Kurdish population in Germany counts up to approx. 500.000 people, and for Berlin 50.000 persons (Lötzer 1998, Komkar). Generally in Germany ethnicity is not registered in statistics, but citizenship of the countries named above. Also a large percentage of the Kurdish population in Germany has acquired German citizenship.
Access to health services and health literacy
Most immigrants are like the majority of the German population members of the compulsory health insurance system. Still studies on the access to and the outcome of health care show that migrant patients are confronted with various problems in German health services. Language barriers, socio-cultural misunderstandings in the doctor-patient-relationship, differences in the expectations and a low patient satisfaction among migrant patients compared to Germans have been observed (Borde 2002, David et al 2001). Requirements like diversity management that are necessary to promote equal opportunities in a multicultural society, are presently not being solved in a satisfactory manner.
Health literacy has become a keyword in the global discussion on health promotion and participation. The World Health Organization defines health literacy as „The cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health.“ (WHO Glossary).
Health literacy is a fundamental aspect, when concepts, that are agreed to be important concerning patients’ rights, their role in the co-production of health in the compliance and coping with the illness. Although the informed consent is an obligatory requirement before surgical operations and certain diagnostic measures in the hospital, the real extent of actual knowledge and understanding of patients is not always known. The legally binding consent of a patient is actually guaranteed only in cases where the medical information is oriented to the individual level of understanding of the patient. The importance of individual knowledge for the process of treatment, healing and coping with illness has long time been neglected but is now being discussed in the sense of shared decision-making (Coulter 1997). Up to now, there is hardly any evaluation of the outcome of the information process for immigrant patients.
Study on the health care situation of migrant and German patients in the hospital
In the gynaecological ward of the Charité University Clinic, in Berlin we investigated the health care situation of migrant women from Turkey and German women (Borde 2002, David et al 2001). In this clinic 41% of the women in the obstetric ward and 27% in the gynaecological ward are non-German citizens, most of them are from Turkey. In the comparative study, which was financed by the Federal Ministry of research and Education for 3 years, we included all in-patients with background from Turkey and German women in the age of 15-75 years. 582 patients (320 German women and 262 migrant women from Turkey) have been questioned by questionnaires; additionally 50 women of each group were interviewed.
To include a large proportion of migrant patients in the study and to reach a similar response rate of 95% in both study collectives a qualitative pilot study, bilingual questionnaires (German and Turkish) as well as reading and writing assistance for illiterate women were necessary. Since the pilot study showed, that Kurdish women from Turkey who were literate, had either learned to read and write in German or in Turkish language, we renounced on translating the questionnaire into Kurdish. For basic data on diagnosis and medical treatment we referred to in-patients records and compared it with the reported diagnosis and treatment of the women in the survey.
Some results on the variety within the migrant sample
Self reported ethnicity
Kurdish women, who originally migrated from Turkey, were included in the migrant sample as well. Not only ethnic differences but also the integration process is reflected in the answers, the migrant patients gave to the question on self reported ethnicity. 68% of the patients with migration background indicated, that they identified themselves as “rather Turkish”, 13 % as Kurdish, 17 % as Turkish as well as German and 2 % as “rather German”. Those, who partly identified themselves as German were mostly younger, were born or grew up in Berlin. Whereas there was not statistic significance in age differences for those who had a Kurdish self-identification.
Language spoken in the family
Since language barriers are a major obstacle for many migrants accessing information in health services, we also asked about the language spoken in the family. Here about half (48%) of the migrant patients answered Turkish, 33% German and Turkish, 5% German, 8% Kurdish, 5% Kurdish, Turkish and German and 1% Kurdish and German.
Besides ethnic, language and cultural differences between Turkish and Kurdish women, the study revealed other notable differences within the migrant group regarding
(a) Duration of living in Germany,
The large majority of the migrant patients included in the study (74%) had been living in Germany for more than 10 years, half of the sample even for more than 15 years.
23% were German citizens
(c) Migration status
32 % first migration generation, 43 % second generation, 19 % migrated to Germany after marriage and 6 % came as political refugees.
(d) Language fluency in German
Of the women surveyed approximately one third estimated their language ability as „good/very good“ (32.8%), another third as „fairly good“ (30.1%) and yet another third as „poor/none“ (37.1%).
(e) Literacy and Language preference
Certain conclusions concerning health literacy, language preference and competencies, as well as reading and writing ability were drawn simply from the copy of the questionnaire chosen by the patient (in either German or Turkish). While the majority of the Turkish women chose the questionnaire version written in Turkish (61.4%), the remaining 38.6% preferred the German language version. 45% of the migrant patients indicated in the questionnaire, that during their stay in hospital they depended on language interpretation, which was mainly realised by their visiting husbands, relatives and rarely by bilingual staff members (physicians, nurses and cleaning staff). Professional interpreters where only ordered by the staff in two cases.
Socioeconomic differences between the German and the migrant patient group
- The comparison of the German and the migrant patients showed significant differences in the age distribution, the educational and the socio-economic status. The migrant patients in the study was considerably younger (median of 30 years compared to the median of 41 years of the German patients), which reflects the demographic differences in the populations.
- While all German patients had attended school for at least 8 years, 10% of the migrant patients had never been to school and 40% had only attended primary school in Turkey for 5 years. The proportion of illiterate women averaged 30% in the migrant sample.
- Significant differences were also demonstrated with respect to employment patterns. 70.8% of the questioned migrant women vs. 44.7% of the German patients were unemployed. While up to 40.6% of the German women worked in mid-level to top-level positions, this was the case for only 6.8% patients with migrant background. 38.8% of the migrant and 9.4% of the German women declared to be housewives.
Impact on patient satisfaction and outcome of the communication process
The study shows that socio-economic and socio-cultural differences have a large impact on the outcome of the information process and patient satisfaction, since the hospital has not developed concepts and policies tailored to specific needs of migrant women. While the expectations and claims connected with a good health care and information in the hospital were similar in both study groups compared, the migrant women were significantly less satisfied with medical care, information and the psycho-social care. 35 % of the migrant vs. 5 % of the German women admitted not having understood the information given in the hospital. Before and after informed consent migrant patients knew notably less about their diagnosis and the clinic therapy than German patients. Asked on the day of discharge from the hospital only 55% of the migrant vs. 79% of the German women were able to report their final diagnosis correctly and only 66% vs. 83% knew details about the clinical therapy they received. Lower educational status and (for migrant women) less knowledge of the German language correlated significantly with insufficient knowledge about diagnosis and therapy. Comparable results were found in a study in US-American emergency departments, where more than 80% of the English-speaking patients knew their diagnosis and therapy but only 60 % of the Hispanic patients (Crane 1997). Our results indicate that the method in which information is given to patients in German hospitals presently is hardly appropriate to reach patients, who have good proficiency in German language and good basic health knowledge. To patients with more need for information and education it is not beneficial.
Basic knowledge of the female body
Additional to unsolved problems in respect to informed consent and language barriers the basic health knowledge differed between the study collectives significantly. In order to determine the actual health relevant knowledge our survey concentrated on questions concerning the anatomy of the female genitalia, their functions, contraception and examinations for the early detection of cancer. Only a small portion of the general female populace (approximately 13% of the study population, 22% of German patients) had good-to-very-good basic knowledge, among the migrant patients this proportion was even smaller (3% of the migrant women surveyed). 62% of the migrant and 15% of the German patients showed only little knowledge about anatomy and functions of the female body and were less informed about preventative health care. Within the migrant group, women who had attended school in Germany (2nd migrant generation) had notably better knowledge, however the proportion of patients who demonstrated less sophisticated understanding in this group was still twice as high (32.5%) as compared to that of the German group (15%).
Kurdish women’s voices about understanding the information in a gynaecological ward
I now want to present some examples reflecting some of the specific needs of Kurdish women in the hospital. As you will see from the short extracts from much longer in depth interviews, there is a variety of aspects that have an impact on the understanding of the information. Education, language, basic health knowledge as well as socio-cultural aspects mark the specific of their needs – or rather each individuals needs.
Hatun: “I can only think what it may be, with my own head.”
Hatun is 69 years old. In hospital she had a hysterectomy due to a myom. She grew up in a Kurdish village near Elazig and has no school education. She is married and has 6 children, who were all born in Berlin. She has been living in Berlin for 27 years and used to work in a factory for 20 years, now she is unemployed. She speaks Kurdish, a little Turkish and very little German.
(… )Why did you come to the hospital? What do you know about your illness?
The doctor said that there is something inside of me that has grown within the last three months. He said that it was not really something to worry about, but if it had not been removed, something bad could have happened. That’s why I was told to have my uterus removed and so I came here. They investigated me here too and said: “Yes, it is the uterus. The operation will be done from below.” They don’t need to cut from above. “There is no reason to be worried.“ But what it was, that was in the uterus, if it was something dangerous or what, I don’t know anything about.
What could it be?
I don’t know anything about it. I can only think what it may be, with my own head. I think - please excuse me – it could be something made out of thick blood or maybe hat another gathering of water or something else. I don’t know it. (…)
Fatima: “… if a normal person had spoken to me - I would have understood much more.”
Fatima is 55 years old. In the hospital she had a hysterectomy and an excision of the ovaries due to postmenopausal bleeding as was written in the patient dossier. She was born in Ankara, where she left school with a high school diploma. After her marriage she was a housewife. She has two children, who were born in Ankara. She has been living in Berlin for 17 years and works here as a cleaning lady. She speaks Kurdish, Turkish and says that her German is fairly well.
(…) Why did you come to the hospital? What do you know about your illness?
My doctor told me, that I had to go to the hospital to have an operation to get my uterus and the ovaries removed. My uterus was enlarged and then they said, that they would recommend taking away the ovaries as well, because it could be, that there would be cancer. And that is why they have removed both together. They asked me also and then I thought, that it should better be removed, before another problem occurs.
Who informed you about the operation?
The doctor told me. The head doctor of the hospital was here. I have - actually, if somebody else would have told me, if a normal person had spoken to me - I would have understood much more. But in front of me there was a big doctor and other doctors and then I was very nervous. I wanted to understand everything myself, and in that moment I could have said, that I don’t understand and that I need an interpreter. I understood a little. If I hadn’t understood anything, I would have asked for an interpreter. Also my gynaecologist, who is Turkish told me something before, that this and that would be done. But still – it is better, if you understand yourself and if you can ask your questions.
I saw your husband in the hospital, did he translate for you?
My husband did not come into the doctor’s room with me. When the doctor came into my room, we talked together, but my husband’s knowledge of the German is not much better than mine.
Zeynep: “In my case everything was too late…”
Zeynep is 43 years old. She was in the hospital because of a very large myom and had a hysterectomy. She was born in Diyarbakir, where she went to school for 5 years. After that she was living with her parents taking care of the household. 1½ year before she was hospitalized, she got married to a Kurdish widower, who has been living in Berlin for 25 years. Since then she lives in Berlin. She has no children.
(…) Why did you come to the hospital?
I had a surgery, because I had a myom in my uterus. My uterus was extracted.
How were you informed about this?
Since I was married I have seen several doctors. [because she wanted to get pregnant.] They told me that I had a myom and that I needed an operation. That is quite a while ago now, because I didn’t want the operation for some time. But I had pain and I went to my doctor again and he said that I had to go to the hospital urgently.
[Her husband comes into the patient room and adds to the interview explaining, that the myom had a weight of 3 kg and that it was “as big as a cauliflower”. Then she continues]
In my case everything was too late. That is, why I didn’t know, what was going on in my body. Everything was too late. Maybe you know, how it is in Turkey. When you are a girl you don’t go to a doctor because of this woman’s thing – not if you are a virgin. Maybe because of other things you can go, that is possible, because of stomach pain, kidney pain - but not because of this thing. That is how it is, that is the custom. That is not at all a good thing. (…) When I imagine, I had a daughter, then I would not think about anything like that and I would certainly send her to a doctor. Today we think differently – but sure the people then think completely different and they are changing only slowly. (…)
Aynur: “… my father doesn’t have any sons.”
Aynur is 18 years old. After bleeding during pregnancy in the 14th week and miscarriage she had a curettage. She migrated from Urfa to Berlin with her mother when she was a small child and went to school in Berlin, which she finished after the 10th grade. She is married, has no children and is a housewife.
[Aynur says that she understood everything the doctors explained but she is not satisfied for another reason:]
Are there any questions that you still have?
Actually, I wanted to know, if the child was a girl or a boy – that was important to me and I was very angry because they didn’t take care of this.
Why was this so important for you?
I heard from everybody, that it would be a boy. I had all the symptoms that women have, when they are pregnant with boys, like a sore tongue. We say, that this appears only, if it is a boy. So I only thought about boys names – girls names didn’t come to my mind. I put together the names of my grandfather and of my father and wanted to take these names, because my father doesn’t have any sons. That is why it was important for me. My mother has five daughters.
The interviews show, that Kurdish women are very interested in knowing and understanding the diagnosis and the treatment and other information relevant for coping with illness and illustrate some of the obstacles such as educational lacks, language barriers, shame and other culturally determined aspects that prevent them from reaching the information they need to participate and to access good quality of health care.
Our study results indicate, that only half of the migrant patients questioned received the necessary information about their diagnosis and therapy that would enable them to participate in the process of shared decision making. The informational lacks observed for migrant women are caused by massive problems in the communication process (e.g. ignored language barriers, elaborated code of medical explanations and obviously inappropriate approaches in exchanging information and neglecting socio-cultural aspects) at least for migrant patients. While hospitals these days focus on offering safe and highly technological medicine, we are still facing persisting unequal opportunities when looking at the access to health care and here especially the access to information. Deficits in the process of informed consent may influence compliance, may cause legal problems for care givers as well, when inadequate doctor-patient-communication leads to inappropriate treatment or surgery and may provoke extra costs for health insurances. Concepts of care and information should seriously consider patients rights for migrants and ethnic minorities.
In order to enhance participation and health chances, it is substantial to focus on the causes of informational lacks and to develop on one hand adequate concepts, structures and competencies to optimize communication in the hospital. The explanation as required by law prior to any diagnostic or therapeutic measure can only be successful if the communicated information and the explanatory written materials respect the level of education, socio-economic and socio-cultural aspects as well as values of different patient groups. General structural measures need to be taken, to enable the health services to respond adequately to socio-cultural diversity and differing needs. Concepts of diversity management are necessary to enhance more equal opportunities and to guarantee patients rights for all. These are at least the systematic inclusion of ethnic minorities in measures for quality assurance and research, availability and consequent use of qualified professional interpreters, distribution of information materials in relevant migrant languages, representation of ethnic minorities in the hospital staff and training cultural and communicative competencies of the personnel. Health insurances should be interested in fostering policies of diversity management not only for economical reasons but also to ensure quality of care. Health workers should be sensitised and trained to get a picture of the individual situation of their patients, considering the specific communication situation, educational status, gender and the socio-cultural background. Health care institutions are obligated to provide the appropriate structures.
Promoting the information process for groups with lower levels of education – not only in case of surgery but also in the ambulatory health care sector - requires the creation and application of information materials that reach these groups on their level of basic knowledge (e.g. illustrations, bilingual sexual education brochures, videos). The integration of these types of materials into the informational routine of medical information and treatment at clinics and practices could greatly improve the patients’ understanding and increase their active part in shared decision making and compliance. In addition a doctor-patient consultation could also be used as an opportunity for more comprehensive health education. Of course, this should not be performed by health professionals solely. To reach migrants with preventive and health promoting activities and health education measures, specific communication patterns and networks of immigrant communities, intensive interdisciplinary cooperation with social work should be practiced.
Borde, T. (2002) Patientinnenorientierung im Kontext der soziokulturellen Vielfalt im Krankenhaus. Berlin
Coulter, A.: Partnerships with patients: the pros and cons of shared clinical decision-making. J Health Serv Res Policy, 2, 1997:112-121
David, M. & T. Borde (2001) Kranksein in der Fremde? Türkische Migrantinnen im Krankenhaus. Frankfurt/Main: Mabuse Verlag 2001
David, M., T.Borde, H. Kentenich: Knowledge among German and Turkish women about specifically female bodily functions, contraception, preventive medical examinations and menopause.
Ethnicity and Health, 5, 2000: 101-112
Lötzer, Rüdiger: Kurdischer Alltag in Berlin – Geschichte und Gegenwart. In: Lötzer, R. & Sayan, G. (1998) Kurden in Berlin. R + V Verlag. Berlin