LIVING WITH CHILDHOOD DIABETES - Family Experiences and Long-term effects

The overall aim of this thesis was to investigate families’ experiences when a child is diagnosed as having type 1 diabetes, and at one and three years after diagnosis. Since childhood health and the circumstances around it in the family have been shown to have a lasting impact on adult health and circumstances, an additional aim was to examine the long-term effect of childhood diabetes on education level attained and self-assessed health. The work described in this thesis was carried out using a combination of qualitative and quantitative methods. In study 1, a longitudinal qualitative study design was used with interviews for data collection, and in study 2 a cross-sectional quantitative study design was used with register data based on structured interviews for data collection. The sample of the first study (papers I–III) was made through a consecutive series of families with children diagnosed with type 1 diabetes in 2003, who were interviewed individually in 2003 (n=12), 2004 (n=11), and then again in 2006 (n=11). Data collected in 2003 and 2004 was analysed using a hermeneutic phenomenological approach, whereas data from 2006 was analysed using latent content analysis. The sample from the second study (paper IV) was made through a set of pooled cross-sectional population survey data, supplemented with register data. It comprised 106 individuals diagnosed with diabetes before age 19 and 20,564 individuals not diagnosed before age 19, aged 19–38, who were interviewed for the Swedish Biennial Survey of Living Conditions (Undersökningar om Levnadsförhållanden, ULF). The data were analysed using two multiple regressions: one for educational level attained and one for self-assessed health, using a human-capital model as a theoretical framework. Findings in study 1 demonstrate that after the affected child had been diagnosed with type 1 diabetes, the family entered an ongoing learning process where they learnt about the inevitable and the extent. The learning process was a recurrent phenomenon whenever the families were exposed to new situations and contexts. One year after diagnosis the family described that they were living an ordinary yet different life, and the family experienced acceptance, health, independence and confidence during periods of well-balanced blood glucose levels. The integration of the illness into the family’s everyday life was, however, obstructed during episodes of unbalanced blood glucose levels, which affected the whole family negatively. Three years after diagnosis all family members had acquired a sound basis for managing the diabetes regimen. They had learnt more about diabetes, which was a natural element of the families’ everyday life, although still affecting the family members differently in their daily life. Furthermore, in study 2, controlling for a set of independent variables, childhood diabetes was found to be associated with lower levels of attained education and self-assessed health in comparison with the general population. More educated individuals reported better health, though. Hence, further research is needed to decide which method of treatment is most beneficial for the individual family when a child is striken with type 1 diabetes. The importance of showing receptivity to each family member’s needs and experiences was further suggested when the families were interviewed three years after the diagnosis, as it revealed that the illness affected the daily life of family members to a different degree. It is also important early in life to strengthen the possibility of having and reaching an agreeable level of attained education for children diagnosed with diabetes, as this may lead to increased health for the child later in life