«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Two Turkish-origin doctors offered more of their time for my interviews and a subsequent invitation to an evening hosted by a professional society of foreign doctors provided further opportunity to discuss diabetes among the Turkish community of Berlin. Further into fieldwork I met another group of medics, all Turkish-origin, which was very active in raising diabetes awareness within the Turkish community, and whose members were interested in in-depth interviews. This medics’ society is an association of about fifty doctors, dentists, nurses and pharmacists. It was founded 23 years ago when Turkish-speaking healthcare provision was not quite as common in Berlin. In the early 1990s the Senate funded the association quite generously, mostly in order to provide an HIV/AIDS drop-in clinic for testing and consultancy for those affected and their families. The Turkish migrant community had been identified has vulnerable to HIV, but the association also had enough money to employ full time Turkish-speaking staff to attend to various other health problems. Instead of HIV/AIDS, diabetes quickly crystallised as the most pressing issue and when funding got cut despite rising demand, the medics’ society hosted a first information event. The huge audience that turned up surprised everyone, and the idea of a proper patient-led diabetes self-help group was born.
However, still involved in regular health programmes at the local Turkish-speaking TV station and offering Turkish-speaking patient education sessions, the doctors considered themselves an important part of Turkish diabetes care in Berlin.
In my interviews all doctors seemed to agree that Turkish patients struggled with a certain set of problems. Medically speaking, this patient group mostly grappled with obesity, and then at older age diabetes and cardio-vascular conditions were common, often multi-morbid, i.e. suffering from several illnesses also including skeletal illnesses and very widespread depression. Most doctors saw the causes in social conditions and life style choices, highlighting social deprivation, unemployment or hard manual labour but also the rise of cheap fast food and a general lack of “health awareness”. All doctors emphasised that they were only speaking from “mere experience” and could not provide “objective” statistical “hard facts”. In order to back their observations, German doctors liked to quote a study the city Berlin has undertaken recently, which found that obesity rates of Turkish origin children starting school are twice as high as of German 1st year school children (Delekat 2005), whereas Turkish-origin doctors would also frequently mention the Laube et al. (2001) study on high diabetes rates among Turks in Germany. In summary, doctors’ experience with diabetes among Turkish migrants suggested that a complex combination of socio-economic status, education and illiteracy, migrant status and lacking German language skills contributed not only to the cause of illness but also hindered treatment and management. Additionally, doctors stressed that their surgeries were situated in the very same socially deprived area and were therefore chronically underfunded and understaffed considering such high maintenance patients.
Participants: diabetes consultants The first months of fieldwork left me with a rather bleak picture of migrant diabetes care in Berlin. Encouragingly, some of the Turkish-origin doctors told me they offered Turkish-speaking diabetes education sessions for their patients and I could sit in on them – but after months of chasing them up I realised that the surgeries did not seem to find time to offer these sessions any time soon. Dealing with my own disappointment I could only imagine the patients’ frustration being confronted with a diagnosis of diabetes without receiving much explanation or information for months.
I was finally invited to attend the Turkish-language diabetes patient education sessions of a locally well-known family doctor who specialised in diabetes care and who I had first met during a medical congress where he gave a presentation on diabetes self-management and illiteracy.
Patient education sessions are typically held by practice nurses or nutritionists who have undergone special training as diabetes consultants. Later I also attended a regular (German-speaking) patient education programme in a more middle-class borough of Berlin. Participating in such sessions not only gave me an insight into clinical expectations of patient knowledge and patients’ reactions but (subsequent interviews) also provided me with an alternative “health profession” perspective to doctors’ experiences and opinions. Somewhat acting as intermediates within diabetes care, these diabetes consultants gave frank assessments on both their patients’ ability to manage their illness and doctors’ actual efforts to provide adequate care. Access to the attending patients’ opinions, however, was difficult as the short period of a set of education sessions was not enough time to establish rapport and conversations remained sketchy.
Participants: diabetes self-help group Attending several local medical congresses I finally came across a Turkish-speaking diabetes self-help group, founded in 2003, that was recommended to me if I were interested in getting to know some patients. Most doctors I spoke to before did not mention that such a group existed, and later explained that they did not know about it. While the group seems invisible for many of Berlin’s healthcare professionals, it was very noticeable to Turkish Berliners, as they frequently advertised on Turkishlanguage radio and TV and on leaflets in benefit offices. Meeting their group leader on several occasions I was invited to join their group meetings. Over the following months the self-help group became the main focus of my research, providing me with access to Turkish migrant experiences in Berlin, friendships, and an entirely different perspective on migrant diabetes management. The members of the self-help group ticked all the boxes I had been hearing about Turkish first generation migrants with diabetes: often recipients of social welfare, early retired or unemployed, many women had not attended school or only primary school, and many spoke only little German (or only with people they knew well). Nonetheless, my informants demonstrated excellent knowledge of diabetes and therefore good levels of diabetes control – something health professionals seemed to have deemed impossible.
The group’s leader Mr Yılmaz15 is a forty-eight year old first generation immigrant who was born in a town in West Turkey and was diagnosed with type 2 diabetes in Germany many years ago. He has been living in Berlin for over twenty years and is a well known and highly respected member of the Turkish community of Berlin. He told me that through his job as an undertaker and later door-to-door salesman he got to know thousands of Turkish families in Berlin (and through them the diversity of his homeland Turkey) and that had made him the perfect candidate to jump-start such a project. Yılmaz led his group with an authoritative yet compassionate hand. He had undergone training with the German Diabetes Union which was organised with the help of some doctors. Involved were members of the medics’ society as well as the German doctor who practices in the dialysis ward of the private hospital that hosted the self-help group meetings. On his own initiative, Yılmaz also travelled to Turkey to be trained there and visit Turkish self-help groups for “an alternative perspective”, as he explained to me.
The group meetings were held in a small lecture room in the dialysis centre at a hospital every Saturday afternoon at 2pm. The eight ascending rows of chairs were usually well occupied by an eclectic group of people. Some well-dressed women in All names in this thesis are anonymised.
their forties to sixties, with smart hairstyles, elaborate jewellery and make-up would always sit next to each other exchanging latest news. Some men formed similar groups, often discussing latest Turkish and/or German politics – or simply sharing how they got on with their diabetes management. Young women accompanied their mothers, and brought their children along too who kept themselves busy with homework. Elderly couples attended the sessions, some very traditionally clothed, the men in formal jackets, with head caps, beards and prayer beads in their hands, the women in long, wide coats and colourful headscarves, some couples looked more urban or “modern”.
Usually, a group of ten to twenty people met, depending on the weather and the time of the year. In good weather, some members seemed to prefer their allotment gardens to the stuffy lecture hall, in the early summer and autumn months many members were already or still on their annual leave in Turkey. These about twenty people were the core member group that not only seemed devoted regulars at normal group meetings but also helped with organisations tasks and fund raising. Not everyone gathered, not even of the regulars, had type 2 diabetes, there were also family members, friends, neighbours, and simply those who were interested.
I was the only one without a Turkish background and while my Turkish surname sparked discussions on the close history of Turkey and Germany, my broken Turkish gained me many compliments on the commendable attempt to learn this difficult language. I did not receive much translation help, however, but was “left to it”, to make my own sense of their meetings. Only every now and then we had little discussions of clarification when several of us struggled with Yılmaz’s tables, for example of elevated risk percentages (“If you are xx kg overweight, your risk of stroke rises xx %.”). Despite occasional difficulties to follow Yılmaz’s elaborate presentations, Yılmaz had an extraordinary talent to explain rather complex issues on nutritional values, anatomy, organ function, and bio-chemical mechanisms in very simple terms. As Yılmaz also hosted community information events with his group and appeared on local Turkish TV to give presentations, the group meetings attracted a much larger crowd of people at times. At these occasions these firsttimers filled the entire lecture hall and while all were made to fill in a membership form and thus added to the substantial list of around 8000 official members, only some would return at subsequent meetings and become new regulars.
On a final note, Yılmaz and the medics’ society had explained to me that the self-help group mainly addressed patients with type 2 diabetes as type 2 diabetes had been identified as a burden within this populations group.16 Yılmaz’s training was on type 2 diabetes and recommendations were targeted at people with type 2 diabetes.
However, the membership form did not specifically inquire about the type of diabetes people had; Yılmaz merely asked at times how many people were insulin users, especially how many had recently progressed to insulin. Therefore there may have been also members with type 1 diabetes and I can imagine that Yılmaz was helpful to find more specific information for such members. Community gatherings were specifically advertised as type 2 diabetes information events.
Participants: diabetes patients The self-help group was the focal point of my ethnographic research in Berlin and offered me access to everyday practices of diabetes control. Although these practices were extensively discussed in the group, it ultimately proved more enlightening to explore them in actual practice – following people into their homes. Through my regular attendance of group gatherings, I slowly got to know the members of the selfhelp group but it took several months until I felt confident enough to suggest meeting outside the group setting. I began to visit some group members in their homes and some of them became my key informants. I not only learned about their two major life narratives: the story of their migration and the story of diabetes, but I could also observe their daily practices of managing diabetes.
I followed 7 people with diabetes into their everyday lives. All, with the exception of one, were women, in their 40s to 60s; disease duration ranged from twenty years to the year I met them; all were first generation migrants from both urban and rural Turkey, east and west; some spoke little German, the youngest in their 40s were fluent and accent-free in German; all had children living with them or nearby, some grandchildren in Berlin; all spend some time each summer in Turkey, some owned property there.
For a more detailed discussion, see Chapter 7.1.
Narrative interviews dominated these first encounters. I was invited to their home – or homes, for example their allotment garden – where I would meet family and friends. There we would chat, have tea, various snacks, lunches or dinners, browse through photo albums or consult maps. During such visits, “lived diabetes practice” could be observed without difficulty as food dominated any visit and checking of blood glucose levels, injecting of insulin or limiting food portions intruded any conversation. Nonetheless, participant observation proved difficult in such an urban setting. My initial intention to follow people through their daily lives did not turn out to be practicable and feasible. While being welcome in their private homes or within the context of self-help group meetings, further exploration of their lives, even diabetes-related, was out of the question. For example, I did not accompany any research participants to their doctor’s consultations and would only discuss them prior and after their visits to the doctor. Anxieties over test results – anticipated or confirmed – were the subject of several phone conversations and chats over tea. I would be shown their diabetes diaries that list test results but at no time did I feel comfortable enough to ask if I could join the actual consultations.
Furthermore, my informants spent several months during my fieldwork period in Turkey. I did not accompany any of them to their home country but met them after returning to Berlin to look back on their trip and experiences while there.