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Parents' care for kids with type 1 diabetes

Published: 07th April 2021 Last updated: 07th April 2021

Parents of children with type 1 diabetes (T1D) struggle with the question of whether and how their child is able to gradually take over his/her own diabetes care. T1D requires the necessary care, knowledge, skills and discipline to prevent potentially life-threatening complications. Jori Aalders investigates the question in his thesis 'Whose diabetes is it anyway', which he will defend at Tilburg University on Wednesday April 7.

Due to the complexity and extent of diabetes care tasks, many (young) children are unable to take responsibility for those tasks themselves at the time of diagnosis, and parents take over some of them. However, these tasks must be passed on gradually by parents so that the child can take responsibility for diabetes care at the end of the adolescence.

Complicated process

This transfer from parent to child turns out to be a complicated process, depending also on individual factors and circumstances. Factors that influence this transfer process are the age of the child, the extent to which skills and knowledge have been developed, the duration of diabetes, fear of pricks, suboptimal blood glucose levels, belief in one's own abilities, the control and autonomy stimulating behavior of the parents.

Diabetes

T1D is a demanding chronic condition often diagnosed at a young age (<18 years). To avoid life-threatening complications, blood glucose must be monitored and controlled via insulin injections or pumps. Medical material should always be available for this purpose.

Group interviews

Aalders investigated, among others, which measuring instruments were used in previous studies and which child factors played a role in this. He also conducted group interviews with parents of children with T1D (9-14 years) and questionnaires were administered to children with T1D (6-17 years) and their parents.

Recommendation

Aalders concludes, contrary to what he expected, that the distribution of care responsibilities is not related to important outcome measures in the care of T1D children. The interviews also showed that families experience the transfer of diabetes care as a difficult process. Aalders recommends investing more in diabetes teams in guiding families with a T1D child.

Jori Aalders: Whose diabetes is it anyway; the division and transfer of diabetes care responsibilities between children with type 1 diabetes and their parents. Supervisor: Prof. Frans Pouwer (Dept. Medical and Clinical Psychology). PhD Defence: April 7, 2021, 4:00 PM, Tilburg University. Contact: jori.aalders@rsyd.dk

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