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.

Characteristics of being hospitalized as a child with a new diagnosis of type 1 diabetes: a phenomenological study of children’s past and present experiences

“…Perhaps efforts to improve feelings of recognition are taken more seriously with respect to environment rather than the lived body. However, facing and living with a chronic illness remains demanding, as was underscored by the participants in our studies; this findings is also in line with several other studies [30,59,60]. …”

The Experience of Living with Type 1 Diabetes and Attending Clinic from the Perception of Children, Adolescents and Carers: Analysis of Qualitative Data from the DEPICTED Study

“…The impact of a diagnosis of T1D on children, parents and other family members can be significant due to the complex, invasive and relentless nature of diabetes management (Lowes, 2008;Wennick & Hallstrőm, 2006). The National Institute for Clinical Excellence (NICE) (2004) recommends a glycosylated hemoglobin (HbA 1c ) target of 58 mmol/mol (7.5%) or less.…”

Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences

“…In a systematic review, Whittemore, Jaser, Chao, Jang, and Grey (2012) revealed a prevalence of parental psychological distress at diagnosis of between 20% and 30%. Parents have described a feeling of being overwhelmed by the management demands, a feeling that persisted over time when experiencing the complexity of daily management, the constant fear of especially hypoglycaemic events and of new situations coming up (Smaldone & Ritholz, 2011; Sullivan-Bolyai et al, 2003; Wennick & Hallström, 2006). The fear of nighttime hypoglycaemia has been reported as extra challenging among parents of the youngest children (Monaghan, Hilliard, Cogen, & Streisand, 2009).…”