What are the common barriers to managing type 1 diabetes for youth and their families – and how do they affect quality of life?

A US study examines the link between self-management barriers and diabetes-specific quality of life in children and adolescents with type 1 diabetes and their parents.

By Jennifer Halliday

As we approach World Diabetes Day (14 Nov), the theme of which this year is ‘the family and diabetes’, we take a look at a recent study of how type 1 diabetes and its management affects the quality of life of young people and their parents.

Self-management of type 1 diabetes is complex, including both dietary and medical (insulin) management but affecting all areas of life. For children with type 1 diabetes, diabetes management requires parental involvement and support, and adolescents (even as they become independent young adults) often benefit from parents supporting their diabetes management. Living with and managing diabetes is challenging, and barriers to diabetes management are known to affect the quality of life of the young person with diabetes and their parent. Previous research has explored the links between individual barriers to diabetes management with quality of life, but until now, there has not been a comprehensive study of multiple barriers.

Nikita Saoji and colleagues have explored the link between multiple barriers to diabetes self-management and diabetes-specific quality of life in a cross-sectional study recently published in Diabetic Medicine. The participants were 135 children (aged 8–12 years) and 132 adolescents (13–16 years) with type 1 diabetes, and their parents. They all completed questionnaires about the impact of diabetes on their quality of life. Adolescents and parents (of children and adolescents) also completed the PRISM (Problem Recognition in Illness Self-Management) tool to measure their experiences of six common self-management barriers: Understanding and Organizing Care, Regimen Pain and Bother, Denial, Healthcare Team Interactions, Family Interactions, and Peer Interactions.

For all groups (children, adolescents and parents), nearly all of the barriers had a significant negative association with diabetes-specific quality of life (p<0.05). However, there were mixed findings for Healthcare Team Interactions, which was also the least commonly experienced barrier for all groups. The barriers most strongly associated with diabetes-specific quality of life were:

  • Among children: parent-reported ‘Denial’ and parent-reported ‘Understanding and Organizing Care’
  • Among adolescents: their own reports of ‘Regimen Pain and Bother’
  • Among parents of children: their own ‘Denial’
  • Among parents of adolescents: their own ‘Understanding and Organizing Care’

You can find the full statistical details for each of these associations in the paper.

In clinical settings, PRISM (which is free to access here) could be a useful tool for identifying and addressing barriers to type 1 diabetes self-management. In conjunction with use of this tool, interventions for overcoming self-management barriers could be tailored to the needs of individual family members and the family unit. Reducing self-care barriers could help to improve both diabetes management and quality of life, but further research (e.g. in the form of a randomized controlled trial) is needed to confirm this.

Check out our other blog posts about diabetes and adolescents here. You might also be interested in results from the Diabetes MILES Youth Study here.

Saoji N., Palta M., Young H. N., Moreno M. A., Rajamanickam V., & Cox E. D. The relationship of Type 1 diabetes self‐management barriers to child and parent quality of life: A US cross‐sectional study. Diabetic Medicine, 2018, 35: 1523-30

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