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«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»

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In the case of Turkish Berliners, rather worryingly, such choices seem to be made on the basis of ability to understand knowledge rather than “gold standards” of knowledge. Insofar as knowledge is highly guarded, structured and limited according to perceived capacities of patients, this invites Francis Bacon’s “knowledge is power” (1612) taken up among many including Foucault and his conceptualisation of power/knowledge (1980). Following Nietzsche (1969 [1887]) in his opposition to Kant’s understanding that there is a universal essence of knowledge, Foucault (1998 [1976], 2000) explores knowledge (and power) in its historic, institutional and ideological context. For him, knowledge is relational and intrinsically linked to power structures and can thus be not understood as a separate phenomenon.

Medicine is a prominent example for such power/knowledge, as populations’ bodies are controlled and monitored by medicine and its institutions and representatives that produce, utilise and disseminate medical knowledge (cf. Lupton 1997). Knowledge about diabetes control, here, is clearly shaped and withheld according to local assumptions and without consultation with patients; even though it is the patients that are required by the same ideological structures to adopt such expert status. The tension lies both in theory and practice. Although Foucault does not separate theory and practice but considers theory as practice (O’Farrell 2005: 71), his idea of power/knowledge separates the doctor who represents medicine and medical knowledge from the patient who is subject to medical knowledge and practice. Yet even contemporary notions of expert patients are formed within the medical realm, according to a clinical model of what constitutes patient expertise. In the above ethnography, patient expertise seems to be an altogether contested idea in the case of migrant patients: either medical knowledge is entirely unavailable (in mainstream diabetes education that is in the wrong language to teach expertise) or “dumbed down” for illiterate, un-educated migrant “expert” patients.

Challenging expertise: the self-help group However, the story of diabetes power/knowledge is more complex. My evaluation of such simplified educations sessions may seem harsh, but the immediate comparison with the peer education in the self-help group made me question the value of limiting knowledge for certain patient groups. The self-help group – in the true fashion of patient-led support groups (Nettleton 1995) – actively pursued access to the kind of detailed knowledge that some health professionals had presumed this patient group incapable of understanding. The education about cholesterol is an example for such pluralities of knowledge and will be used for the following description of a typical self-help group meeting.

The self-help group gathered every Saturday afternoon for two hours in the small lecture hall in the dialysis centre of a private hospital. After people found their seats and exchanged some words with other members, Yılmaz would ask for their attention and start with a general chat with everyone. How was everyone doing; did anyone have any questions or concerns? At this point people would share their experience about recent doctor’s appointments, possible set-back or success, and often, latest test results were discussed. People would, for example, read their current cholesterol levels to the group from their latest doctor’s letter (Arztbrief). They may double-check that they read the results correctly and inquire how their results compare to the clinical cut-off points of their “good” and “bad” cholesterol; they may ask for advice with levels have worsened or welcome the group’s praise if levels have improved. As diabetes increases risks for cardio-vascular diseases, people with diabetes should watch their cholesterol levels. The patients of Zahedi’s “illiteracysensitive” lessons mainly learned that it is as necessary to avoid fatty meals as sugary or starchy foods (field notes 22.01.2007). A short discussion aimed towards a distinction of “good” and “bad” fats created much confusion among the attendees. At the German “gold standard” middle-class patient education session of my diabetes consultant informant a much longer time slot was allocated to cholesterol and included much more refined teachings of “good” and “bad” cholesterol and, accordingly, how to read and assess blood results (from field notes 26.06.2007). In general, the time constraints of any patient education session added to quite limiting considerations, yet I could not help noticing that some patients received more complex explanations than others. My initial approval that maybe one should not overcomplicate already quite alien clinical information soon faltered after experiencing how the un- or low-(school-)educated self-help group members juggled clinical knowledge, and as a result, managed to understand the clinical information given about their health status.

The self-help group leader actively sought out detailed and current clinical knowledge. After the initial question and answer session at each self-help group meeting, Yılmaz then gave a lecture on a specific topic such as cholesterol. The members learned, for example, that there are good fats (vegetable and fish oils) and bad fats (mainly animal, saturated fats), which produce bad cholesterol (kötü kolesterol) LDL (which should be lower than 100 mg/dL as it clots blood vessels) and good cholesterol (iyi kolesterol) HDL (which should be over 45 mg/dL; it releases fatty deposits in blood vessels and transports them back to the liver). Such clinical cut-off points of cholesterol levels were rehearsed on a regular basis, individual test results discussed within the group and contextualised with the kind of diet or social events that preceded such test results. Knowing to avoid fat as well as refined carbohydrates is one step towards controlling diabetes but it only paints half the picture. Understanding that not every kind of fat has adverse health effects and learning which types are beneficial (after all it is the type of fat so frequently used in their regional cooking), added a whole other way of understanding their body.

Moreover it enabled the members of the self-help group to read further information material, to discuss test results with health professionals, and ultimately and very practically to manage their bodies and keeping (bad) cholesterol levels low. This meant to avoid further clinical intervention in the form of medication and ultimately further illness.

Yılmaz lectures were often intense and tiring. After an hour of group meeting, he would call for a break (that he and many of the male members used for a cigarette outside). During breaks the group members shared snacks such as fruit and cakes with each other. While this part of the group meeting was a nice respite from learning and a chance to catch up on latest gossip, group members also used this time to have more private conversations about how they were doing, possible emotional or physical struggles. Also, women would share their recipes – especially of the cakes they brought in, baked with spelt flour or fruit sugar – or other practical experiences that they had made in their attempt to implement newly acquired knowledge.

Becoming members of the self-help group had surely turned my research participants’ experience with diabetes around. The self-help group members have gained access to a combined wealth of knowledge of peers with similar experience and the trained support of the group’s leader Yılmaz. Such education was available on a weekly basis with the opportunity to revise, rehearse and question without time constraints. What health professionals liked to flag as a patient’s right – the right to knowledge – turned in clinical practice much more into a duty to comply and be satisfied with the limited offer provided by resource-constrained family doctors. The self-help group offered knowledge and, first of all, access to it on a much more egalitarian basis. Rana, Sevim and her colleagues at the Turkish-language self-help group had come a long way from their first encounter with diabetes at the time of diagnosis to their present relation to their illness and care.

Having described their way of social learning (Wenger 1998) within the group as more egalitarian as the severely restricted knowledge offered during the “illiteracy-friendly” patient education session, to an outsider, the group meetings may have appeared far from egalitarian but very authoritarian in style. Yılmaz led the group meetings with a strict hand, swiftly silencing conversations during his lectures which were typically held in a didactic style. After the break, he often allowed for more interaction and involved the group members much more. Sevim was sometimes a bit intimidated during group meetings: “I sometimes just wait until Yılmaz points at me and says: Sevim hanım, tell us what’s this and that… and I freeze.” She was very impressed how some group members such as Sadık always had an answer and could answer so eloquently: “As if he were reading it from a book.” (Field notes 17.05.2007) Sevim had heard of the self-help group through the local Turkish TV station. That was quite a lucky coincidence as the family usually watched satellite TV from Turkey and not Berlin’s local Turkish-language TV. But she watched the health programme with Mr Yılmaz – twice. The second time, Sadık – a devoted regular – was accompanying Yılmaz. He had brought his scales and was telling people how he managed his diabetes. She was so impressed that she decided to come to the group meetings. She had been a member for three years when I met her at the group. Sadık, a 75 year old widower, was a great role model for many in the group and always impressed with his knowledge.

I was at first surprised by this perhaps unusual self-help group model that featured Yılmaz’s lecturing style, as I imagined chairs arranged in a circle as it is often portrayed in film. Newcomers to the group, however, did not share my inital puzzlement. In several conversation, health professionals later explained to me, that it is quite a “Turkish way” to learn this way, as for example the diabetes nurse at Zahedi’s practice Turkish explained her blend of the “German” interactive and the “Turkish” authoritative education model (from field notes 22.01.2007). The more I got used to this self-help group format, I also realised that a large part of the two hours of meeting were indeed devoted to sharing experiences within the whole group rather than simply learning new information from Yılmaz. This is not to say, though, that Yılmaz did not claim authority on this information, as Rana experienced later that year when she challenges this authority by suggesting alternative information on blood sugar test strips; a conflict that only resolved when she left the group. This incident will be discussed in more detail in Chapter 5.1 and Chapter 8.2 that will revisit how power relations and authority intrinsically shape social experiences with diabetes.

Power/knowledge Summing up, knowledge is a central requisite of experiencing diabetes. Knowledge acquisition is considered essential from a clinical perspective in order to manage diabetes, and therefore educating about diabetes – rather than medicating it – is at the heart of clinical intervention and belongs to “best practice” standards (IDF 2005).

Knowledge, however, is locally and idiosyncratically negotiated and shaped and intrinsically linked to power relations (cf. Foucault 1980). What kind of knowledge is made available seems to depend on the ability ascribed to the patient or patient group that should attain such body of expertise – a judgment often left to and cast by the health professionals who put such patient education into practice. While some doctors expressed their view to me that information brochures, translated to accommodate those patient groups who do not share the healthcare provider’s language, fulfil the requirement of educating the patient, others resort to other measures. Some of those health professionals who shared the native language of their migrant patients amended patient education sessions, which every patient should have rightful access to, as they believed that this right included that such sessions should be in a format that is accommodating to patients’ specific needs. This might have been, in theory, a commendable exercise, though did patients seem to have traded their “foreign”, non-native speaking status for that of the uneducated rural dweller. Instead of being confronted with German, they were in turned considered challenged by “standard” (urban Western) Turkish and lacking knowledge such as human biology (without considering that former farmer might have a fairly good grasp of organ anatomy as opposed to urban middle-class academics). Accordingly, the (potential or alleged) illiterate patient received a “dumbed down” version of diabetes knowledge, yet these patients’ “failure” to prove “patient expertise” was put in causal relation to the initial educational gap rather than the limited information provided.

In the light of such access constraints, patients of the self-help group actively sought access to a much more sophisticated and in-depth body of knowledge. Quite contrary to what was assumed about their capabilities to handle such knowledge, they actively engaged in practices of making sense of such information and giving them meaning in their personal illness experience. The group’s success of fostering active self-management was most evidently due to their intense way of group learning, repeatedly hearing information (not facing the same structural constraints of practice hours and staff availability as formal healthcare provision did to provide education), being able to ask many questions, comparing such information with their own test results and attempts of implementation, sharing positive and negative experiences as well as advice and emotional support. The next subchapter explores this practical and social aspect of knowledge. However, while knowledge acquisition was a group effort, within the self-help group knowledge transfer was also shaped by and negotiated through power relations. Yılmaz claimed authority over the clinical knowledge (not so much the women’s knowledge over recipes) and his style of leading the group meetings reflected this hierarchy.

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