«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
The consequences of this therapeutic breakthrough were unexpected. Many believed that insulin could cure diabetes or at least replace strict dietary recommendations. Little was it anticipated that insulin merely turned an acute disease into a chronic condition that ultimately took its toll on the body’s organs (ibid. 244ff). Complications such as cardio-vascular diseases had previously gone unnoticed as diabetes patients simply did not reach older age. It soon became clear that dietary advice should remain at the core of diabetes control. Insulin was further developed with the advance of genetic engineering which developed human insulin and solved the problem of insulin supply. Moreover, with increasing wealth and life expectancy in industrial countries, there was also a rise in type 2 diabetes, much like it is now experienced by low- and middle-income countries (Unwin and Zimmet 2009). For the therapy of type 2 diabetes, oral blood-sugar lowering agents were developed, but none ever made dietary control obsolete. Modern medicine achieved increasing understanding of the complexities of diabetes but even this latest era in diabetes research – now increasingly genetic research – still raises more questions than it can answer.
Doing diabetes: on self-care After this long history of medical attention, research and innovation, diet remains the most important feature of diabetes management (Wallace and Matthews 2002: 1706).
Day-to-day patient self-management is essential in diabetes care which ideally requires knowledgeable, responsible and dedicated diabetes patients. People living with diabetes do not only negotiate their own care but their lives, in turn, are fundamentally shaped by their illness and their strategies to control it. This thesis will explore these practices of diabetes control, the “doing diabetes”.
The central aim of diabetes therapy is to keep blood glucose levels down to a level that minimises the risk of diabetes complications. Newly diagnosed type 2 diabetes patients are often initially prescribed oral anti-diabetic drugs which have hypoglycaemic agents, i.e. they chemically lower blood glucose levels. There are five different kinds of drugs that either enhance insulin activity, increase insulin release (stimulating the pancreatic beta cells), delay insulin absorption in the bowel, or reduce insulin resistance in order to enable better glucose absorption (Wirges 2002: 18, 35, 89,185ff). Doctors can mix and match these tablets – also with insulin – (though not all can be combined) to achieve good diabetes control. Patients eventually tend to progress to insulin, and today, there are different forms of insulin available. Human insulin has replaced the original animal source insulin with the emergence of DNA recombination (Bliss 1996: 247), and human insulin, in turn, is increasingly replaced by so called insulin analogues (whose molecular structure is modified to enhance certain properties) (Wirges 2002: 109ff).
A careful diet and physical activity can help to manage the illness without any medication, at least at the early stages of the illness (Wallace and Matthews 2002). An excessive intake of sugary and low-fibre food can trigger and worsen the management of type 2 diabetes mellitus. Traditionally patients were cautioned to watch their carbohydrate intake, while current dietary advice, as a rule of thumb, recommends a healthy balanced diet, high in fibre, fruit and vegetables. Having said this, food becomes a highly complex issue for diabetics once they learn more about nutrition. Chapter 6 will explore the avenues of understanding why one should prefer brown to white bread and cottage to feta cheese. People living with diabetes must learn the complex and varied workings of food on their metabolism. As Allen knew in the early 20th century, fat and protein intake need to be watched as closely as carbohydrates, and today, salt intake is discouraged in those with and without diabetes. In short, diabetes patients need to know more about their diet than simply how to identify carbohydrates.
Another core element of diabetes management is physical activity. Exercise
can lower blood glucose levels and enhance insulin activity (Kraus and Levine 2007:
424). Patients are therefore encouraged, for example according to IDF’s Global Guideline for Type 2 Diabetes (IDF 2005) to be physically active at least 30 to 45 minutes on three to four days a week. Part of these recommendations is also to instruct the patient to adjust “medications (insulin) and/or adding carbohydrate for physical activity”, as physical activity is very effective to lower blood sugar and can therefore lead to too low blood glucose levels (IDF 2005). As with diet, physical exercise is far from straight-forward and needs to be individually assessed for each patient. There are different recommendations for different kind of exercise and medication, patients who are already suffering from complications should refrain from certain exercise, and researchers still struggle to assign specific types, frequency and intensity of exercise their effect on glycaemic control (Sigal, Kenny et al. 2004; Kraus and Levine 2007: 423).
All these components of diabetes therapy, diet, physical activity and medication, will be explored in this thesis as their ambiguities and uncertainties require a highly individualised therapeutic approach that not only places the patient at its centre but also puts them in charge of administering it. Key to diabetes control is diabetes self-management (Day 2004). People living with diabetes must be conversant with controlling their blood glucose levels as, most of the time, patients are left to their own devices to handle it. As the thesis will explore, diabetes control is not confined to clinical spaces; rather, everyday life is shaped and negotiated around the concern of keeping one’s blood glucose levels at normal levels. And this is not an easy task. One size does not fit all, and patients have to become experts of their own diabetic bodies. Moreover, different sites of the body are at stake.
Controlling constant blood glucose levels aims to avoid, or at least, delay diabetes complications. Patients must be aware of and knowledgeable about the consequences of high blood glucose levels on their organs. Diabetes self-management includes watching those body parts at risk through diabetes: feet, kidneys, heart, and eyes.
Health professionals’ role is not only to provide check-ups to prevent complications and clinical care of such complications but also to support patient selfmanagement at home. There is a growing body of health science literature that aims to understand what it means to self-manage diabetes as a patient and what the facilitators and barriers are. Acknowledging the considerable psycho-social aspects of diabetes care, these studies use social research methods and analysis in order to interrogate patients’ experiences with diabetes self-management and improve outcomes of self-management. While some of this research focuses on quantitative social research methodology such as surveys (e.g. Johnson-Spruill et al. 2009;
Melkus et al. 2009; Scollan-Koliopoulos et al. 2007), there is also an increasing number of health science researchers, often with a background or borrowing from medical sociology, that conducts qualitative studies. Methods used are sometimes described as ethnographic but overwhelmingly comprise interviews and focus groups.
As improving diabetes control outcomes is central to these clinically driven studies, often an emphasis is placed on compliance or adherence, the management of everyday diabetes self-care according to care plans and recommendations, in short, “doing what the doctor told”. Research questions focus on evaluating how well patients comply and what reasons lie behind possible non-compliance. Kelleher (1988) conducted interviews with thirty patients with diabetes in the UK. He divided them into three distinct groups according to their responses to their illness. While “worriers” were anxious about their diabetes as well as the task to self-manage, “normalisers” took some degree of control over their diabetes, made some adjustments to their routines but played down symptoms and disruptions to their lives. A third group was identified as “copers” who showed a high degree of control over their illness, made individual and active management choices and alterations to their lives. Maclean (1991) also looked at people’s responses to diabetes in regards to adherence and non-adherence to dietary recommendations, conducting interviews in Canada with 34 people. Like Kelleher (1988) she found that while some worried about their diabetes, felt out of control or burdened by their illness, others were much more confident. However, she allowed for a more fluent account that did not placed people in fixed groups but on a continuum from strict adherence, strategic indulgences or “cheating” to non-adherence. She also identified various factors that influenced dietary management and self-care: individual factors (food preferences, lifestyle preferences, character traits, ease of adjustment), diabetes-related factors (severity, experience, threat of complications) and contextual factors (family/peer support, professional support, social stigma, equipment, cultural norms, occupation).
Another example is a US study conducted by O’Connor and colleagues (1997). In focus groups and interviews with 34 people participating at an education programme they also identified positive responders who tended to “cheated” strategically but did not feel guilty about such transgressions, were knowledgeable about diet and not fearful of medication/insulin. Interestingly, they considered diabetes a serious illness but accepted lifestyle changes in their everyday lives. Conversely, negative responders did not view diabetes as serious and were more casual about diet but they were also fearful of insulin and tended to dwell on lifestyle changes.
Increasingly studies acknowledged varied and highly emotional responses to diabetes in the last two decades, research has shifted somewhat away from concentrating on patient adherence towards exploring patients’ assessment of their needs. Maclean (1991), for example, emphasised the importance of personal interpretations of health and suggested that health professionals must accept personal decision making and autonomy in diabetes control self-care. This paradigm shift to an “empowerment philosophy” (Funnell and Anderson 2003: 457) placed emphasis on patient-centred studies, interventions and education programmes. Murphy and Kinmonth (1995) conducted interviews with diabetes patients in the UK to compare their interpretations of diabetes and perceived seriousness with the degree of lifestyle changes and how these are rationalised. Murphy and Kinmonth (1995: 184) suggested that health professionals should respect such rationalisation, even on “nonadherence”, and a greater understanding of patients’ perceptions could lead to better “therapeutic alliances”. Such studies that take patient perspectives into account also increasingly emphasise well-being as a separate issue than health (also see Cohen et al. 1994). Furler and colleages (2008), for example, propose not to measure success solely in terms of clinical success and compliance but to take patients’ evaluation of quality of life and well-being into consideration (also see Karas Montez and Karner 2005). In their Australian study, they conducted four focus groups with Englishspeaking, Turkish and Arabic-speaking people with diabetes in order to explore the emotional context of and impact on diabetes self-care. A much earlier Swedish study by Wikblad (1991) also concluded that diabetes care should be less about monitoring and more about achieving a balance of diabetes treatment and personal life choices and well-being. In this study in which 55 patients were interviewed patients distinguished between health and well-being and demanded more from health professionals than only check-ups and medication but that they recognised individual needs.
Within this literature that explores patient perspectives, there is a range of research that specifically focuses on lay understandings of diabetes causation and its impact on self-care practices. Parry and colleagues (2006) interviewed forty newly diagnosed diabetes patients in the UK about their perceptions on illness causation.
Those who described diabetes causation mainly in terms of their own behaviour engaged actively in diabetes management (“down to me”). Those patients, however, who referred to external causes such as hereditary factors relinquished more responsibility to the health professionals (“down to them”). While most participants did not represent such polar opposites, Parry et al. (2006) highlighted that understanding such discursive accounts of causation can put these patients in a disadvantaged position in regard to their illness management. Illness lay beliefs, especially in connection with health inequality, seem of particular interest in the case of ethnic minority diabetes patients. Lawton and colleagues (2007) reassessed in secondary analysis interviews with 32 white and 32 Pakistani and Indian participants about their understandings of diabetes aetiology and while white respondents tended to emphasise internal behavioural causations, the Pakistani and Indian respondents externalised the causes of diabetes to stressful events, life circumstances and risky environments. Hunt et al.’s (1998) study with 49 Mexican Americans explored in interviews how varied illness causation beliefs resulted in three forms of treatment activity: self-active, other-active (someone else takes responsibility for care) and non-active, much like Parry et al. (2006) concluded. Interestingly, the level of activeness not only depended on perceptions of lay causation (heredity and diet, but also personal events and behaviours as provoking factors) but self-care experiences were also used to (re-)interpret illness causation beliefs.