The Practice of Regulating Insulin Dependent Diabetes : An Empirical Study With a Cultural Historical Activity Theory (CHAT) Perspective

Abstract

Resumé Kandidatspecialet tager udgangspunkt i en underen omkring diabetesregulering, mere specifikt reguleringen af blodsukkeret hos insulinkrævende diabetikere. Ved at tale med diabetikere, for hvem regulering er en del af hverdagen, og med folk der arbejder med diabetes regulering, stod det klart for os, at det er en krævende opgave at regulere diabetes. Det førte til at vi stillede spørgsmålet som har dannet vores problemformulering: Med den tilgængelige diabetes teknologi, samt viden om diabetes, hvordan kan det så være, at det stadig er en krævende opgave for mange diabetikere at holde et stabilt blodsukker i deres hverdag? Derfra begyndte vi at kigge på de forskellige grupper, der er involveret i diabetesregulering; diabetikere, kommuner, ambulatorier, leverandører og medico og medicinalvirksomheder. Da vi havde dannet os et overblik, begyndte vi at indsamle empirisk data om praksissen at regulere diabetes, i form af observationer, dagbog: dagbogs-interviews og semistrukturerede interviews. Til at analysere vores data, besluttede vi at bruge Kulturhistorisk Aktivitetsteori (CHAT) i et praksisteoretisk perspektiv på grund af CHATs stærke kapaciteter til at kigge på sociomaterialitet og relationer. Ud fra det teoretiske perspektiv analyserede vi 8 forskellige aktivitetssystemer med forskellige CHAT værktøjer, et af dem er hovedsystemet ”Praksissen at regulere diabetes”. I analysen har vi fundet modsætninger og relationer som er i og mellem aktivitetssystemer. Disse har bragt ny indsigt på praksissen. Vi har også fundet ud af at udviklingen af den bærbare blodsukkermåler, har ændret praksissen drastisk. Det er blevet muligt for diabetikere at måle deres blodsukker, men samtidig har det også skabt en mere kompleks praksis med mange variabler, der kan påvirke blodsukkeret på den ene eller anden måde. Den historiske udvikling har også medført en ændring i konsultationspraksissen. Tidligere fik diabetikerne få instruktioner på, hvor meget insulin de skulle tage, og hvad de måtte og ikke måtte spise, hvor der nu er et behov for kompetent målrettet vejledning. Et andet fund er, at retningslinjer kan opfattes forskelligt af diabetikere eller andre i diabetikernes omgivelser. Det kan nogle gange skabe vanskeligheder for diabetikerne og danne grundlag for misforståelser af reguleringspraksissen, som kan komme til udtryk som fordomme. Vi blev også opmærksomme på at begrænsninger i adgang til diabetes teknologi kan påvirke reguleringspraksissen. Fundene har ført til følgende svar på problemformuleringen: Reguleringspraksissen er kompleks og der er mange elementer som kan påvirke den. For at være i stand til at kontrollere reguleringen til perfektion, ville diabetikeren være nødt til at fokusere på alle disse elementer på samme tid. Det er ikke muligt når et liv samtidig skal leves, hvilket forklarer hvorfor reguleringen bliver nødt til at blive en del af diabetikerens daglige aktiviteter og andre praksisser. Nogle af aktiviteterne harmonerer godt med reguleringen, andre knap så godt, hvilket kan gøre reguleringen til en svær opgave. Når diabetikerens daglige aktiviteter ændres, er reguleringspraksissen nødt til at følge med, ellers vil de adskilles, hvilket kan resultere i at en aktivitet som gik fint sidste gang den blev udført, pludseligt medfører et ustabilt blodsukker en anden gang. Så til trods for udviklingen indenfor diabetesteknologi og forskning, er det at regulere sin diabetes en svær linegang. Vi ser dog potentielle områder for udvikling af praksissen.

This Master Thesis takes its point of departure in a wondering about diabetes regulation, more specifically the regulation of blood glucose levels in insulin dependent diabetics. By talking to diabetics, to whom regulation is a part of everyday life, and to people involved with regulation professionally, it became clear to us, that it is a demanding task to regulate diabetes. This led us to ask the question that has formed our problem statement: With the diabetes technology at hand, as well as knowledge of diabetes, how come it is still a demanding task for many diabetics to keep a stable blood sugar in their everyday lives? From there we started to look into the different groups of people that are involved with the diabetics; the municipalities, outpatient clinics, suppliers and a medico-company. Once we had an overview of the situation at hand, we began collecting empirical data on the practice of diabetes regulation in the form of observations, diary: diary-interviews and semi structured interviews. To analyse the data we decided to use Cultural Historical Activity Theory (CHAT) in a practice theoretical perspective, because of CHAT’s strong capacities for socio-materiality and relations amongst other things. We then produced 8 different activity systems, one of them the main system of the practice of regulating diabetes, and analysed them with different CHAT tools. These tools provided us with analysis on contradictions and relations in and between the activity systems that brought new insights on the practice. Through our analysis we have found that with the development of the portable glucose technology, the practice of regulation has changed drastically. It has become possible for diabetics to monitor their blood glucose level, but at the same time created a more complex practice with many variables, that can affect the blood glucose in one way or another. The historical development of the regulation has afforded a change in the consultation practices. Earlier the diabetic would get instructions on how much insulin they should take and what they could and could not eat, now there is a need for competent individual guidance. Another thing we have found, that can sometimes create difficulties for the diabetics, is when things in the regulation practice, for instance guidelines, are perceived differently by diabetics or others in the diabetics’ surroundings. This can sometimes lay ground for misconception of the regulation practice leading to judgement. We also became aware of that a limitation in access to diabetes technology can affect the regulation practice. These findings have led to the following answer to our problem statement: The practice of regulating diabetes is complex and there are many elements that affect it. Hence to be able to control the regulation to perfection would mean that the diabetics had to focus on all these elements the whole time. This is not possible, when a life is to be lived alongside the disease, which is why the regulation process has to merge into the daily activities and other practices of the diabetic. Some of the daily activities merge well with the regulation practice, others less so, which can make regulation a difficult task. When the diabetics’ daily activities change, the practice of regulation has to follow, otherwise they will disjoin, which can result in that an activity that went well the previous time suddenly results in an unstable blood glucose another time. Therefore in spite of the progress within diabetes technology and medical knowledge, diabetes regulation is still a difficult line to walk, although we see potential areas for facilitation of the practice.

A master thesis from Aalborg University

The Practice of Regulating Insulin Dependent Diabetes : An Empirical Study With a Cultural Historical Activity Theory (CHAT) Perspective

[Praksissen at regulere insulinkrævende diabetes: Et empirisk studie med et Kulturhistorisk Aktivitets Teoretisk (CHAT) Perspektiv]