Family preferences for home or hospital care at diagnosis for children with diabetes in the DECIDE study

AIMS: A diagnosis of Type 1 diabetes in childhood can be a difficult life event for children and families. For children who are not severely ill, initial home rather than hospital‐based care at diagnosis is an option although there is little research on which is preferable. Practice varies widely, with long hospital stays in some countries and predominantly home‐based care in others. This article reports on the comparative acceptability and experience of children with Type 1 diabetes and their parents taking part in the DECIDE study evaluating outcomes of home or hospital‐based treatment from diagnosis in the UK. METHODS: Semi‐structured interviews with 11 (pairs of) parents and seven children were conducted between 15 and 20 months post diagnosis. Interviewees were asked about adaptation to, management and impact of the diabetes diagnosis, and their experience of initial post‐diagnosis treatment. RESULTS: There were no differences between trial arms in adaptation to, management of or impact of diabetes. Most interviewees wanted to be randomized to the ‘home’ arm initially but expressed a retrospective preference for whichever trial arm they had been in, and cited benefits relating to learning about diabetes management. CONCLUSIONS: The setting for early treatment did not appear to have a differential impact on families in the long term. However, the data presented here describe different experiences of early treatment settings from the perspective of children and their families, and factors that influenced how families felt initially about treatment setting. Further research could investigate the short‐term benefits of both settings.