Parents of children with type 1 diabetes value remote monitoring and being able to take ‘time out’ with less worry

Parents of children with type 1 diabetes value remote monitoring and being able to take ‘time out’ with less worry

ACBRD

A recent study asked parents of young children with type 1 diabetes about their experiences using a hybrid closed-loop system

By Amelia Williams

Over 1.2 million young people across the globe live with type 1 diabetes (T1D).  Parents play a vital role in managing a young child’s diabetes. This is because the daily tasks are too complex for children to do on their own. These include checking glucose, calculating insulin doses, injecting insulin, preventing and managing low glucose levels.

Caring for a child with T1D can be challenging. Parents often talk about it as being like a ‘full-time job’. Growth, sickness, and daily changes in food and activity, are all normal experiences in childhood. For children with T1D, these factors can affect blood glucose. Also, younger children often cannot tell their parents when they are feeling unwell. This can make keeping glucose in the healthy range difficult, even with close monitoring.

Low or high glucose can affect both health and well-being. Many parents worry about their child’s glucose levels, especially overnight, or when their child is away from them. Some parents manage their worries by getting up in the night to check glucose levels or taking on full-time caregiving. This can be physically, mentally, and emotionally demanding for both parents and children. It can may affect their well-being and quality of life.

Researchers are looking at whether diabetes technology can provide some support to parents. 

The ‘hybrid’ closed-loop (HCL) is a system that monitors glucose in real-time, calculates the insulin required, and delivers it via an insulin pump. The system can send data to a smartphone app. Parents can access these data remotely, via the app. This can relieve some of the emotional burden of managing their child’s glucose levels.

Researchers at the KidsAP Consortium ran a clinical trial showing that HCL is safe and effective for children aged seven and under. Researchers also wanted to know about parents’ experiences and how using the HCL affected family life. They conducted two qualitative interview studies with parents whose children participated in the trial.

What did they find?

There were several benefits:

      • Managing their child’s diabetes is easier.
      • Parents experience less worry, which means they can engage in other activities and daily tasks more comfortably.
      • Remote monitoring helps parents to be more comfortable leaving children in another person’s care.
      • Children are able to attend more play dates or parties.
      • Parents’ stress levels reduce, and sleep quality improves.

There was also a problem:

      • For some, being able to access data all the time means that they feel unable to get a break. They suggest scheduling ‘time out’. This can be done by turning off notifications when their child is with the other parent or a trusted caregiver.

These studies show that HCL can support parents to manage their child’s diabetes. It helps to reduce parents’ stress and worry. Also, it enables parents and children to focus more on life beyond diabetes.

Real-world experiences can be different from taking part in a clinical trial. Parents in this trial only had access to using the HCL for 16 weeks. More research is needed to find out whether HCL is helpful over a longer period.

For information for about caring for a child with T1D, visit as1Diabetes

If you found this blog interesting, check out our other posts about families and diabetes technology.

References:

Hart RI, Kimbell B, Rankin D, Allen JM, Boughton CK, Campbell F, de Beaufort C, Fröhlich-Reiterer E, Ware J, Hofer SE, Kapellen TM, Rami-Merhar B, Thankamony A, Hovorka R, Lawton J; KidsAP Consortium. Parents’ experiences of using remote monitoring technology to manage type 1 diabetes in very young children during a clinical trial: Qualitative study. Diabetic Medicine, 2022;39(7):e14828. doi:10.1111/dme.14828

Kimbell B, Rankin D, Hart RI, Allen JM, Boughton CK, Campbell F, Fröhlich-Reiterer E, Hofer SE, Kapellen TM, Rami-Merhar B et al. Parents’ experiences of using a hybrid closed-loop system (CamAPS FX) to care for a very young child with type 1 diabetes: Qualitative study. Diabetes Research & Clinical Practice. 2022;21(1):109877. doi:10.1016/j.diabres.2022.109877

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