Early Onset Diabetes: Parents' Views

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Abstract
During 1990-91 postal questionnaires were sent to the parents of 309 children living in the United Kingdom who developed diabetes before the age of 2 years during 1972-1981. The aim of the survey was to explore how they had coped with their child's condition. Completed questionnaires were returned by 85% of parents. The children had a mean age of 14 (range 9-19) years and diabetes for a mean duration of 13 (range 9-18) years. The cohort's mean age for starting self-injection was reported to be 8 years and most of the children (82%) were still attending full-time education. Diabetes-related difficulties of school were reported for 34% (95% C I 28-40) of the children and 70 (27%, 95% C I 22-32) were estimated to have missed more schooldays than their peers. With increasing duration of diabetes, parents expressed a reduction in anxiety about practical aspects of management such as injections and monitoring, but concern about hypoglycaemia and long-term vascular complications remained high. Parents of girls were more likely to express worries compared to parents of boys, and this excess was significant for worry about diet (chi 2 1df = 17.021, p < 0.001). The paediatric diabetes team caring for early diagnosed children should be aware of the need to discuss the long-term implications of the disorder and be sensitive to the transition period when the child takes progressively more responsibility for self management and the parent's role diminishes.