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

BACKGROUND: Our understanding of children and childhood has changed over the last few decades, which may have an impact on children’s conditions in hospitals. Children’s rights have been strengthened by the “Convention on the Rights of the Child” and ward regulations. The aim of this Norwegian study was to identify potential characteristics of children's lived experience of being hospitalized diagnosed with type 1 diabetes today and from a retrospective view in the period 1950–1980, despite the many obvious external changes. METHODS: This study presents a further analysis of data from two previous phenomenological studies. The first had a retrospective perspective, and the second assumed a contemporary perspective. Twelve adults and nine children who had been hospitalized for newly diagnosed type 1 diabetes at the age of approximately 6–12 years old participated. The adults relayed narratives from their childhood memories through interviews, and the study with the children was designed as a combination of observations, in-depth interviews, and photographs. A hermeneutic phenomenological method was used in the analysis. RESULTS: The analysis revealed a meaning structure that described a tension between vulnerability and agency in the experiences of being hospitalized as a child, both past and present. The experiences may further be characterized as alienation versus recognition and as passivity versus activity, relating to both the hospital environment and the illness. CONCLUSIONS: To a greater extent than ever, children today tend to experience themselves as active and competent individuals who can manage their own illness. Previously, children seemed to experience themselves as more vulnerable and less competent in relationship to their environment and illness. Presently, as before, children appear to desire involvement in their illness; however, at the same time, they prefer to share responsibility with or hand over responsibility to adults. However, living with diabetes was and remains demanding, and it affects children’s lifeworld. Balancing the children’s vulnerability and agency seems to be the best way to care for children in hospitals. In this article, we thus argue for a lifeworld-led approach when caring for hospitalized children, paying attention to both their vulnerability and agency.