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Early onset diabetes: parents' views
Insights
Parents of children with early-onset diabetes reported fewer practical management worries over time. However, concerns about hypoglycemia and long-term complications persisted, especially regarding diet for girls.
Area of Science:
- Pediatric Endocrinology
- Child Psychology
- Public Health
Background:
- Type 1 diabetes diagnosed before age 2 presents unique lifelong management challenges.
- Understanding parental coping strategies is crucial for supporting children with early-onset diabetes.
Purpose of the Study:
- To investigate how parents coped with their child's early-onset diabetes (diagnosed before age 2).
- To identify long-term parental concerns and challenges associated with childhood diabetes management.
Main Methods:
- A postal questionnaire survey was conducted in 1990-91.
- Parents of 309 children diagnosed with diabetes between 1972-1981 (before age 2) participated.
- 85% parental response rate achieved, with children aged 9-19 years at survey.
Main Results:
- Parents reported reduced anxiety regarding practical diabetes management (injections, monitoring) as duration increased.
- Concerns about hypoglycemia and long-term vascular complications remained significant.
- Diabetes-related school difficulties affected 34% of children; 27% missed more school days.
- Parents of girls reported significantly more worries, particularly about diet, compared to parents of boys.
Conclusions:
- Paediatric diabetes teams must address long-term implications and support the transition of self-management responsibility.
- Sensitivity is needed regarding parental role changes as children gain independence in managing their diabetes.
- Ongoing psychological support is vital, particularly concerning diet and potential complications.
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.