EARLY-ONSET DIABETES - PARENTS VIEWS

During 1990-91 postal questionnaires were sent to the parents of 309 c hildren 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 questionna ires were returned by 85% of parents. The children had a mean age of 1 4 (range 9-19) years and diabetes for a mean duration of 13 (range 9-1 8) years. The cohort's mean age for starting self-injection was report ed to be 8 years and most of the children (82%) were still attending f ull-time education. Diabetes-related difficulties at school were repor ted 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 anx iety about practical aspects of management such as injections and moni toring, but concern about hypoglycaemia and long-term vascular complic ations remained high. Parents of girls were more likely to express wor ries compared to parents of boys, and this excess was significant for worry about diet (chi2(1df) = 17.021, p < 0.001). The paediatric diabe tes team caring for early diagnosed children should be aware of the ne ed to discuss the long-term implications of the disorder and be sensit ive to the transition period when the child takes progressively more r esponsibility for self management and the parent's role diminishes.