«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
As a final note, I mostly refer to diabetes control instead of diabetes management or care. I chose it as the clinical term “diabetes control” incorporates a whole range of meanings and therefore seems to be simply much more interesting.
Diabetes control refers to the process of managing diabetes; it also denotes the patient’s illness status (an average blood glucose level of 7 certifies “good diabetes control” as opposed to 10, which would mean very poor health); and it therefore records achievement (or failure in the case of “poor diabetes control”) and alludes to the ability and accomplishment of both patient and doctor.
Chapter 4: Learning diabetes
Diabetes control requires knowledge. People who are faced with the diagnosis of diabetes often seek information as a first coping strategy to make sense of the news and grasp how their lives might change (Peel et al. 2004). Such knowledge seeking is indeed part of the first therapeutic strategy from a clinical perspective (Day 2004). In diabetes patient education sessions, people (ideally newly) diagnosed with diabetes learn a range of expertise, from basic anatomy and organ function to the complex biochemical workings of pancreatic cells and the glucose metabolism. Nutrition is at the centre of diabetics’ skills as a careful diet (plus physical activity) is an important element of diabetes control. People with diabetes also need to acquire knowledge on medication and, if required, insulin, dose adjustment, blood glucose monitoring, to read test results, and to detect complications. Equally, it is important to learn what services they need, and which ones they are entitled to. Considering the complexities of diabetes and its care, diabetes patient education is part of any clinical diabetes care plan and is considered imperative to diabetes treatment. Diabetes education’s aim is to create “self-sufficient”, “responsible” patients and is often framed around notions of “empowerment” and “expert patients” (Lupton 1995; Nettleton 1997). Such expertise is required as diabetes control is not only complex and complicated, but most crucially as diabetes control is a self-management exercise in the hands of the patients. This self-management often means a complete change in lifestyle, immensely amended diets, cooking practices and consumption patterns, adoption of physical activity in formerly often sedentary lives, and alterations to sociality and socialising. Aside from providing (admittedly often quite crucial) medication and screening for and managing complications, the clinical responsibility in diabetes care is thus confined to the rather low-tech role to offer education on how to go about such self-management.
This thesis also starts its analysis with knowledge, as diabetes education appears to be the main provision gap for the Turkish diabetic population in Berlin.
To put it simply, most education is provided in a foreign language for these patients.
However, the issue of knowledge is more complex than lacking translation services or native language provision. This chapter looks at patient education and the selfhelp group’s peer education and explores that there are all kinds of knowledge and levels of knowledge, and that these are inevitably linked to power relations, are guarded or deliberately sought. Knowledge, here, is not merely an abstract entity that we have or not, are given or refused, but it is a practical and social engagement of seeking knowledge, making sense of it within the group and applying knowledge in the everyday.
The first subchapter examines the avenues to access to knowledge and the demanding exercise of acquiring knowledge when it is guarded. In doing so, I will particularly focus on the members of the Turkish-language diabetes self-help group who succeeded to assume the role of expert patients. Guarded education provision evokes Foucault’s concept power/knowledge (1980), and the way this self-help group contest this, suggests that “the ill” can challenge authority over knowledge. In light of that, the other subchapter then has a closer look at how knowledge itself is negotiated and considered practical in the everyday by these well-informed patients.
Here, the emphasis is on knowledge as practice, rather than separating knowledge from action (cf. Mol and Law 2004). It will explore the different kinds of knowledge, clinical, lay, unorthodox, Turkish, embodied knowledge, that are relevant to diabetes control, and the practical engagement with knowledge that gives meaning to one’s experience and that makes knowledge itself meaningful.
4.1 Accessing knowledge
During one of my first interviews with a family doctor I was shown a chart he frequently used for his Turkish-language diabetes patient education sessions. The chart took me by surprise and I tried to hide delicately that I was choking on my coffee while the doctor elaborated on the usefulness of illustrative teaching material in the case of illiterate, uneducated patients. The chart depicted what can only be described as a Mussulman, a crude drawing of a red-nosed, big-moustached man in bulky trousers, waistcoat and red fez hat, holding prayer beads and looking somewhat dim-witted. I was still trying to figure out if this Turkish-origin doctor, who previously complained about the xenophobic culture in Germany’s society, had any reservations about this clearly racist (or in his case class-snobbish?) depiction of a Turk so generously provided by a Swiss drug company, while he pointed out the separately drawn organs heart, kidneys and brain, as well as eyes, an “opened leg” exposing its arteries and nerves, and a foot covered in yellow stars that should represent tingling nerve pain. With this illustration, he continued explaining, he could teach about the secondary complications of diabetes.
It remained beyond me as to why illiterate patients would need the help of a Mussulman to understand the information given to them. Later, that drug company sent me their “target-group appropriate” training pack for diabetes educators that explained that this Temel Amca (uncle Temel) was a Turkish cartoon character that at least older Turkish migrant patients should recognise.19 I could not help but doubt that this attempt of cultural reference would go down well with your average Turkish-origin patient. Then again it might be my anthropologist’s oversensitivity towards what might in fact be a rather humorous contribution to otherwise dull patient education. Rather more significant is the fact that the knowledge provided to patients in order to understand their illness and master its management is shaped and skewed by assumptions about these patients, their lives and experiences.
I asked the company employee who sent me the material for permission to use it in this thesis but chose not to disclose the company’s name as I use the illustration as a negative example rather than the positive one that the company might expect.
My aim in this subchapter is to trace the discrepancies between the ideal of the empowered expert patient and the way access to education is guarded and limited. Certain marginalised patient groups seem to be excluded from the expert patient ideal. It should be explored how knowledge is made accessible and under which assumptions. At first sight, this is in accordance to Foucault’s concept power/knowledge (1980) and his idea that knowledge is always intrinsically linked to power, for example that medical knowledge is produced, guarded and disseminated by medical institutions and professions. However, seeking access to restricted knowledge is not only a matter of power and domination but becomes a practical pragmatic exercise. Being challenged by and challenging the barriers and gatekeeping of knowledge, my research participants were constantly actively engaged in knowledge acquisition, production and negotiation. In self- and peer-education they assume their own active roles in the relations of power/knowledge.
Educating patients Part and parcel of every diabetes diagnosis is the subsequent offer to undergo diabetes education. The newly diagnosed should learn that diabetes is a chronic illness that can only be “managed” rather than “cured”, and that this means lifestyle management rather than medical intervention. They are confronted with the prospect that medication – and in severe cases insulin – does not suffice without dietary discipline, while a carefully devised nutrition could altogether supplant any medication.
A diabetes consultant explained to me that in the German healthcare system every diabetes patient has the right to education and that any general health practice can refer their patients in case they are not able to offer such education session themselves (interview transcripts 26.06.2007). Germany has an insurance-based social security system in which all employed residents (including students, retired and those on social and unemployment benefits, and non-citizens) are covered by a state health insurance while self-employed, high earners (and civil servants) are “opting out” into a private health insurance. As much as this system has always spurred debates of a two-class-system which provides better services to those who can afford the more comprehensive insurer, it nonetheless offers basic healthcare (including dental and various complementary medicines) to every person. Recent health reforms have attempted to rectify the problem that rising healthcare costs challenge this solidarity-based insurance system (the healthy pay into a health insurance to finance today’s ill – and expect their costs covered once in need) by introducing “out-of-pocket” contributions for certain services. In return, structured care schemes for those with chronic illness have been developed that would exempt from contributions to reflect their more serious and frequent care demand.
Undeniably, any discussion on health inequalities seem to falter in the light of a system that at least sets out to provide comprehensive if basic diabetes care to every patient regardless of their funds – at least in comparison to settings where the poor are denied access to help. The devil, of course, is in the detail.
The diabetes consultant, who advised me about the German diabetes care provision, offered patient education sessions in two general health practices in Berlin, in a middle-class suburb and a socially-deprived, multi-ethnic district. From the very beginning of her career she realised that as much as diabetes care provision is guaranteed on paper, it is exclusively targeted at a “model patient” that she hardly encountered in Berlin’s urban landscape. Only her middle-class patients in the shiny, newly refurbished practice complex responded to her state-of-the-art teaching material straight from the Diabetes Union’s educational repertoire. The most obvious problem – a daily occurrence during her work – at the her council estate surgery turned out to be that educating in a language that is not native to the patient or advising Muslim migrants against too many pork sausages, schnitzel and potatoes yielded only limited success. She became involved in founding a working group for migrants and diabetes at the national diabetes union that set out to train educators with migrant backgrounds and language skills and raise awareness among practitioners about the need to consider patients’ heterogeneous backgrounds (from interview transcripts 26.06.2007).
Negotiating formal education: Turkish-language patient sessions Berlin’s by now numerous Turkish-origin family doctors have started a similar project in recent years to provide more appropriate patient education sessions. Their efforts to account for “ethnic diversity” or “cultural sensitivity” were certainly more practicable than the clumsy if commendable attempts of the German Diabetes Union.
It did not, however, prevent a stereotyping that I encountered again and again when speaking with health professionals about their working class patients (which might explain the uncritical use of the above shown Uncle Temel). I was invited to attend a medical conference when I first met Dr. Zahedi who was recommended to me for his interest in diabetes care. Some weeks later he spoke at another congress on Diabetes Day on his work on diabetes education, migrants and illiteracy. He introduced himself as the son of an Iranian father and a Turkish mother who had arrived in Germany as a little boy when there were not even 300 Turks living in Berlin. In his talk Zahedi presented statistics on Berlin’s heterogeneous residents, and epidemiological data that suggest over-proportionally high rates of obesity among Turkish-origin children and of diabetes among Turkish adults. Even more alarming, he emphasised, were the fact that 70 per cent of Turkish diabetes patients were badly cared for with blood glucose control much worse than the German average. The remedy for such atrocious health inequalities would be more appropriate patient education that should not only take into account the patients’ Turkish language, diet and lifestyle but also the very low educational levels and often illiteracy of these first generation immigrants from rural Turkey.