Experiences of diabetes care - patients' and nurses' perspectives

Sammanfattning: Background: In order to provide good diabetes care it is important for the health care professionals to share patients’ personal understanding of living with diabetes, which differs from a professional understanding of the illness. Patients’ beliefs about health, illness, control and cure are predictive of the outcome of lifestyle changes and pharmacological treatment. Narratives about illness could be used to elucidate what people believe to be central to their experience of an illness and its management. The overall aim of this thesis was to investigate experiences of diabetes and diabetes care among people with type 2 diabetes and district nurses responsible for diabetes care within primary health care.Methods: Forty-four patients diagnosed with diabetes during the previous 2 years were interviewed about their personal understanding of illness and experiences of care. They also participated in an intervention study consisting of group sessions during 9 months. The intervention focused on the patients’ understanding of living with diabetes and was directed at the patients and their nurses (n = 5). The outcome variables haemoglobin A1c (HbA1c), lipids, blood pressure (BP) and body mass index (BMI) as well as well-being, treatment satisfaction and diabetes symptoms of the intervention group were compared with those in a control group (n = 60). Another ten patients were interviewed about their views of their lives. Seventeen nurses in diabetes care were interviewed about their views of their work with patients. The narrative, thematic interviews and focus group interviews were analysed using qualitative content analysis.Findings: Patients’ personal understanding of illness included the categories “image of the disease”; “meaning of the diagnosis”; “integration of the illness”; “space for the illness”; “responsibility for care”; and “future prospects”. Patients’ narratives about their lives included views of knowledge, and capacity, motivation and courage, aspects important for effective self-management. Patients’ views on clinical encounters in diabetes care, interpreted as satisfying or not, included the themes “being in agreement v. in disagreement about the goals”; “being autonomous and equal v. being forced into adaptation and submission”; “feeling worthy as a person v. feeling worthless”; “being attended to and feeling welcome v. being ignored”; and “feeling safe and confident v. feeling unsafe and lacking confidence”. The results of the intervention study with group sessions showed improvements in metabolic balance and treatment satisfaction in the intervention group. At the 1-year follow-up the mean difference between groups in HbA1c was 0.94% (95% confidence interval (CI) 0.58–1.29).Nurses’ views of their work included the themes “Perspectives on illness and caring are not easily integrated into views of disease and its treatment”; “Nurses view their knowledge as more important than the patients’ knowledge”; Nurses’ conscience is challenged by some of their nursing decisions”; “The individuality of each patient is undermined when patients are regarded as a collective group”; and “Nurses are confirmed in their role of nurses by patients who assume a traditional patient role”.Conclusion: These results demonstrate that the understanding of illness and care differs between patients and nurses working in diabetes care; furthermore, that an intervention involving patients and their nurses based on patients’ personal understanding of illness is effective with regard to metabolic control and treatment satisfaction. The cost of the intervention is moderate. Also, we believe that it is possible to clinically implement this intervention within the existing resources for primary health care.