Initial education for parents of children with diabetes: effort and outcomes in children and parents

Introduction: Parents are responsible for the therapy and prognosis of their child with diabetes. Thus a structured initial education covering medical and psychosocial aspects of diabetes for parents offered by a multidisciplinary paediatric diabetes team is essential. Methods: Quality of educational process and outcomes were assessed in 10 German paediatric diabetes units with parents of 81 children (4-14 yrs). A structured diabetes education programme for parents was used. Outcome parameters were parental satisfaction with education, diabetes knowledge (DWT: Typ1), children's quality of metabolic control and health related quality of life (QoL) (KINDL-R) and both parents' well-being (WHO-5) at onset (t0) and 6 (t1) and 12 (t2) months later. Results: On average 30.6 +/- 10.1 lessons were required. Parents were highly satisfied with the education. Their diabetes knowledge at t0 and t1 exceeded the T-norms of the best educated adult patients. Children's QoL at t1 and t2, assessed by their parents, didn't differ from representative healthy norms. Mean HbA1c at t1 was 6.8 +/- 1.0% and 7.2 +/- 1.2% at t2. Compared to standard values of WHO-5 mothers' psychological well-being was poor. Scores < 13 (indicating depression) were seen at 50% (t0), 41% (t1) and 29% (t2) of the mothers. Discussion: The comprehensive diabetes education leads to high levels of diabetes knowledge and satisfaction with care. 12 months after diabetes onset the target of metabolic control (HbA1c < 7.5%) was met by 71% of the children, while their QoL was good. However, the great psychological burden of mothers at onset indicates their need for ongoing specialized care.