«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Two months later I sat in Dr. Zahedi’s practice awaiting the start of his patient education session. A nurse, a young Turkish-origin woman casually dressed in jeans and a woollen jumper, led us in into a tiny box room filled with education charts and material such as plastic food. Next to me squeezed four men and three women (some in traditional clothing with head scarves) into the little space. This first lesson featured basic knowledge about diabetes: what is diabetes, what symptoms are common and which co-morbidities are expected. The nurse used very illustrative language, for example explained the difference of type 1 and 2 diabetes in terms of a factory. We should imagine the pancreas to be a factory and the insulin producing islet cells to be the machinery. With type 1 diabetes the whole factory is not working at all. Their condition, type 2, means that only some machines do not work properly – and probably different machines depending on each person in the room. With good nutrition and exercise one can improve how well the machines are working. Despite the easy language, the nurse gave quite detailed information within the course of one hour: why we need insulin, how insulin helps to get sugar into our cells, the types of cells that need sugar, the various involved organs and why they feel thirsty and have to urinate so frequently as their kidney registers far too much glucose. After the session, I commended her on her teaching style, how she
managed to put complex issues into simple language. She was pleased and explained:
“Many of these people will have worked in a factory, you know, so they can relate to this kind of language. Many have little education and come from rural backgrounds – some are Kurdish. They have difficulties understanding
complex issues and even ‘high Turkish’.” And closing the door, she added:
“Most doctors, you know, don’t explain anything to their patients. They don’t have time but they also couldn’t care less – find it tiresome. They think these patients wouldn’t understand it anyway. But you know, these people aren’t stupid. They can understand if you take the time to explain everything in simple language with many examples. I think that is the least one can do. You present these patients with the diagnosis of diabetes and then leave them alone with it. That’s inhumane!” [Field notes 22.01.2007] The nurse explained that she was trained at the German Diabetes Union and tried to combine both German and Turkish approaches. Turkish seems to be very authoritative, the “German way” is much more interactive; but she also considered that Turks do not read much, many are illiterate and that she had to consider this special “consumer group”.
Over the course of the week this group of patients attended three more hours of teaching to cover a whole range of topics, learning about diet, the importance of regular check-ups, how to detect bodily changes that suggest the onset of complications, and how to handle insulin injections and blood glucose monitoring.
People attended eagerly, participated admirably but had far more questions than the daily hour in Zahedi’s practice could answer. It left a sour taste of introducing people to a whole new world and leaving them to explore it without any further guidance. In fact, many doctors complained to me that a one-off module of patient education that a state health insurance would cover has little impact on most patients’ ability to manage their diabetes.
Dr. K: I always struggle against beliefs people bring to the sessions. This wrong knowledge is much more persistent than attempting a one-off education. If you teach 100% during an education session, the patient will only remember 20%, tops. Knowledge from outside sticks around.
C: What do you mean from outside? Where does this knowledge come from?
Dr. K: From everywhere. Pubs – men really from pubs, from the neighbourhood. There are always ill people in the neighbourhood. Here and there was said this and that. All hearsay.
C: And what is it about? Nutrition, medication?
Dr. K: Also medication: that [they heard that] another medication would be better. Or nutrition: can’t you do it like this too? They get it all mixed up.
That’s why during patient education session... the lecturer [at the training workshop] said: you shouldn’t be upset if people don’t get it, if they only remember 30% - although even that’s hardly the case – at least you’ve done something.
C: And how do you do your patient education sessions?
Dr. K: You are only allowed to do patient education once [per patient] – but I spread them over five sessions. You can’t cramp all the learning material into one session. That’s not possible. Five times. But only one [module] per case [is covered by the health insurance].
[Interview transcript 17.10.2006] There is an obvious discrepancy between the commonly shared opinion that patientled illness management, and therefore patient education, lies at the heart of diabetes care and the limited resources and time allocated to such education. A paradigm of healthcare that hands responsibility and therapeutic power to an informed “expert” patient also presumes the patients’ ability to obtain the necessary knowledge to be an “expert” largely on their own, ideally after the initial guidance of a patient education module. This shows that the “expert patient” is a highly problematic notion.
Guarding knowledge There are two specific problems with above described Turkish-language diabetes education (besides the rather limited time frame to deliver such education). First, Turkish education sessions are barely available, and second, if education was available the content was very basic.
Several Turkish-origin doctors told me about diabetes education in their practice – no doubt a very low number considering the estimated 20,000 Turkish Berliners with diabetes20 – and although all invited me to participate, I was cautioned that they would currently not be available due to staff shortage or time constrains. To Various health professionals and charity workers in Berlin shared this estimation with me: they take the about 200,000 Turkish Berliners and the (conservative, estimated) diabetes prevalence rate of 10%.
my and, more importantly, many patients’ annoyance, a practice’s autumn education sessions were repeatedly postponed due to illness (we were only told after turning up at the practice at the given times) and the whole module was finally called off altogether. In fact, only Zahedi’s practice (which had a good reputation for their education programme) finally provided me with the opportunity to participate in a series of sessions.
My research participants from the self-help group shared many stories of frustration with me. Their illness narratives contained mere side notes of their initial patient education sessions – if they had attended one at all. Their lives with diabetes began with the diagnosis which was only in some cases preluded by more or less discomforting symptoms. Rana told me that she could not really remember anymore what it was like to receive the diabetes diagnosis. It had been over ten years ago and at first she did not really know how to deal with it anyway. She commented, “My doctor was quite useless. He didn’t even tell me that there are diabetes specialists!
Can you imagine?” (Field notes 13.03.2007) Similarly, her self-help group colleague Mehtap did not receive any patient education sessions. After her diagnosis seven years ago, she got several oral drugs but did not feel well controlled at all. She did not receive any education sessions. Finally an acquaintance advised her to go to a diabetologist where she found the help she needed. The specialist referred her to a nutritionist who, as Mehtap noted, only spoke German but tried very hard to explain well in plain German. Sevim told me a similar story and highlighted the difference her final contact with the self-help group made. Sevim had to go to hospital because of a hernia and after that she felt quite tired, thirsty and had to urinate frequently.
With these symptoms she went to see her family doctor – a Turk – who diagnosed diabetes and prescribed her oral medication. Because of the hernia she was on sick leave anyway and was sent into rehab (Kur21) and at the health spa she also received some diabetes education sessions. “I didn’t really pay much attention”, she told me.
“There were some quite boring talks on diabetes – and there were nutritionists telling us about diet. It wasn’t very appropriate anyway – the wrong kind of foods, you Part of Germany’s post-war social welfare provision are health spa holidays (Kur) every citizen is entitled to on a regular basis, e.g. mother (or father)-child-rehab, that is based on a rehabilitation medicine of bathing, relaxation and environmental stimuli (Maretzki 1987).
know – potatoes and schnitzel.” I later found out that diabetes did not really come as such a surprise as she had “a touch of sugar” during her pregnancies – the last one was ten years ago – but she “always got it down again – just reduced my sugar intake”. Her family doctor was not too helpful though. She had never been offered education sessions, he had never explained much to her. “All he did was giving me medication.” (Field notes 17.05.2007) Those people who have the rare opportunity to attend Turkish-language patient education, experience a second kind of “provision gap”. They seem to receive a very basic form of diabetes education, one that could raise the concern as to whether it is “expert knowledge” that is taught. Many doctors expressed their concern to me that particularly the group of first generation Turkish migrants from rural backgrounds lacked basic understanding of their bodies, and even the language to refer to their body parts. As a result “appropriate” knowledge for these patients’ education was identified as on a very basic level.
Dr. B [Turkish-origin family doctor]: Well, my personal...well...speculation, I can only call it as it is not at all scientific, I mean, I can’t show you any hard evidence for this...but in Turkish we only know few terms regarding the body. It’s not an issue for a German – even for your average Joe – it’s not too difficult to apprehend his body, its “content” and topography. Let’s say we say cheekbone, a German knows what that is and where in his body to find it.
But that is not really the case with Turks. [...] In Turkish there are not that many [terms for body parts or organs] and there are regional differences. Let’s say, a term used at the Black Sea coast for “thigh”, is used to refer to the lower leg in the North East regions. That’s why such words are not consistent and that’s why a Turk doesn’t know his body.
And especially with diabetes you have to know your body well. If we consider what is standard education material in Germany. A patient will learn about mechanisms, a little bit of anatomy, a little bit of physiology. Let’s say we mention the pancreas – no one [no Turk] will know what that is or where it is. There is no word for this in Turkish – just “pankreas”. There is no other term. That’s why it’s hard. You can, of course, teach all this but it takes a lot of time and effort.
[Interview transcript 28.06.2007] Such clinical preconceptions of patients’ knowledge bases and learning abilities seemed to stem from a combination of stereotyping the rural migrant labourer and actual experience with patients. Those diabetes educators who told me that they aimed to account for common problems of illiteracy, limited active vocabulary or anatomical understanding envisioned a limited yet well understood knowledge base for their patients assuming and therefore rendering more complex comprehension unfeasible. Diabetes education could therefore take on a range of “learning outcomes” and indeed would convey very different forms of knowledge and therefore often limited understandings of diabetes. It certainly raises doubts if the object of this education is to qualify “expert patients” that could confidently selfmanage their illness. In any case, it seems to be the doctor’s individual decision what patient expertise should be.
That knowledge or expertise is a contested category, has been addressed elsewhere in similar contexts. Karen Lutfey (2005) conducted ethnographic fieldwork in two American diabetes clinics exploring notions of “good doctoring” of ensuring patient adherence. The study reveals that practitioners regard themselves as “educators” and “salesmen” who consider it pivotal for complex diabetes management to have informed and autonomous patients. Patients should actively learn to become experts of their condition. However, not all information is considered good. Patients are expected to subscribe to the biomedical model of diabetes care. For practitioners, those patients resisting this imperative are acting “irrationally by not protecting one’s health and best interests” whereas “good patients” are “acting intelligently” (Lutfey 2005: 438). Lutfey’s (2005) study shows that as much as it is desired by medical professionals to acquire expertise as a patient, it has to be the right kind of expertise. While knowledge is normatively scrutinised in terms of right and wrong information and beliefs, there is then a choice of what levels of right or good knowledge should be considered or conveyed. And this choice is locally and idiosyncratically negotiated by healthcare professionals.
Carter (1995: 139), for example, explored the technological culture of risk assessment in clinical settings, looking at cholesterol screening and how scientific knowledge is permeated by social meaning. He suggested that it is local, individual and informal choices that decide on what passes as “expert”, “formal” knowledge (ibid. 138).