Jori Aalders , Esther Hartman, Frans Pouwer, Per Winterdijk, Edgar van Mil, Angelique Roeleveld-Versteegh, Elke Mommertz-Mestrum Henk-Jan Aanstoot, Giesje Nefs

The division and transfer of care responsibilities in paediatric type 1 diabetes: A qualitative study on parental perspectives. J Adv Nurs . 2021 Apr;77(4):1968-1979.

Managing type 1 diabetes requires higher-level cognitive skills (e.g. planning, making calculations, problem solving), fine motor skills (e.g. performing finger pricks, changing pump infusion cannulas) and self-control and emotion-processing skills (e.g. managing disappointment or fear to prevent diabetes care avoidance). Hence, parents are very important in disease management of young people with type 1 diabetes. However, at some stage parents will need to transfer diabetes care responsibilities to their children. This transfer is difficult for many families, is different between families and is dependent on many factors. This study aimed to assess which factors play a role in the division and transfer of diabetes care responsibilities from the parents’ point of view.

 

In this qualitative focus group study, 18 parents of children aged 9–14 years from 3 Dutch hospitals and from Diabeter participated in focused group meetings in 2015-2016 as part of the project ‘Whose diabetes is it anyway?’.

Key findings:
• The transfer of diabetes care responsibilities takes place in a broad context of tasks
• Tasks are divided between parents and children: parents mainly remember and decide about tasks whereas children perform tasks
• There are many differences between families of the same age group
• Timing of transfer is experienced as difficult and stressful by parents and they have different views on what is a ‘successful transfer’
• It helps to structure the environment, give up some parental control and make diabetes care tasks meaningful to the child
• Many child-, parent- and context-related factors seem to play a role
• Novel factors important for the division and transfer :
             o treatment-related variables
             o willingness and motivation of the child
             o hypoglycaemia awareness
             o pre-existing developmental disorders
             o parental tendency to keep checking the child despite adequate child behaviours
             o parental fears

 

More studies are needed to assess if these findings apply to other parent groups.

 

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