Swedish Families’ Lived Experience When a Child Is First Diagnosed as Having Insulin-Dependent Diabetes Mellitus

Abstract

Sweden has the second highest nationwide incidence of childhood diabetes in Europe, and it is rapidly increasing. The diagnosis of Type 1 insulin-dependent diabetes mellitus has been indicated as a crisis in the life of the individual and family. The purpose of this study was to elucidate the whole family’s lived experience when a child in the family is diagnosed as having diabetes. It was designed as a longitudinal, descriptive, inductive study including qualitative interviews. Family members in 12 families were recruited from a children’s university hospital in Sweden to participate in a series of three interviews: when first diagnosed, and 1 and 3 years after diagnosis. This article derives from the first interview. All invited families agreed to participate and were interviewed 1 to 3 months after diagnosis using a hermeneutic phenomenological approach. The family’s lived experience was identified as an ongoing learning process including learning about the inevitable and learning about the extent. The learning process was experienced as a recurrent phenomenon when the family was exposed to new situations or contexts. Therefore, individualized treatment may reduce the difficulties experienced in coping with the diabetic management regimen after discharge, thus making the transition smoother.