ArticlePediatric diabetes2020
"I'm essentially his pancreas": Parent perceptions of diabetes burden and opportunities to reduce burden in the care of children <8 years old with type 1 diabetes.
Article in Pediatric diabetes, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 51 papers, 2 of them syntheses that pooled it.
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Who cites it
51 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Parental Psychosocial Variables and Glycemic Control in T1D Pediatric Age: A Systematic Review.Current diabetes reports · 2024Pooled it
- Parental care experience of children with type 1 diabetes: a qualitative meta-synthesis.Revista da Escola de Enfermagem da U S P · 2024Pooled it
- Psychosocial outcomes with the Omnipod® 5 Automated Insulin Delivery System in caregivers of very young children with type 1 diabetes.Diabetes, obesity & metabolism · 2024Trial
- Twelve-month psychosocial outcomes of continuous glucose monitoring with behavioural support in parents of young children with type 1 diabetes.Diabetic medicine : a journal of the British Diabetic Association · 2023Trial
- Long-term Continuous Glucose Monitor Use in Very Young Children With Type 1 Diabetes: One-Year Results From the SENCE Study.Journal of diabetes science and technology · 2023Trial
- Parent Perspectives of School/Daycare Experiences in Young Children Newly Diagnosed With Diabetes.Journal of pediatric psychology · 2023Trial
- Trial
- The Hidden Everyday-Life Burden of Pediatric Type 1 Diabetes: A Household Implementation Framework for Modern Diabetes Technology and Family Care.Current diabetes reports · 2026Review
- Differences and Similarities Between Experiences of Mothers and Fathers of Children With Type 1 Diabetes Mellitus: A Qualitative Study.Nursing open · 2026Article
- Pediatric Diabetes Prevalence Among Medicaid Beneficiaries.JAMA network open · 2026Article
- Impact of COVID-19 pandemic on families of children and adolescents with diabetes: maternal perspective.Revista brasileira de enfermagem · 2026Article
- Glycemic control in children and adolescents with type 1 diabetes: association with parental diabetes distress and anxiety.Frontiers in endocrinology · 2026Article
- Challenges in dietary management: a qualitative study on caregivers of preschool and school-age children with citrin deficiency.Orphanet journal of rare diseases · 2025Article
- Stress and Burden Experienced by Parents of Children with Type 1 Diabetes-A Qualitative Content Analysis Interview Study.Children (Basel, Switzerland) · 2025Article
- Exploring the experiences of mothers of children with type 1 diabetes in Northern Alberta: a qualitative descriptive study.BMC public health · 2025Article
- Inequalities in Access to Diabetes Technologies in Children with Type 1 Diabetes: A Multicenter, Cross-sectional Study from TürkiyeJournal of clinical research in pediatric endocrinology · 2025Article
- Parent Engagement in School Health Decisions for Type 1 Diabetes: Barriers to and Facilitators of Collaboration and Implications for Intervention Design.Diabetes spectrum : a publication of the American Diabetes Association · 2025Article
- Polymer scaffolds delineate healthy from diseased states at sites distal from the pancreas in two models of type 1 diabetes.Biotechnology and bioengineering · 2024Article
- Caregiver burden among parents of children with type 1 diabetes: A qualitative scoping review.Heliyon · 2024Article
- Care of Young Children With Diabetes in the Childcare and Community Setting: A Statement of the American Diabetes Association.Diabetes care · 2023Review
Corrections and comments
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Authors and funding
11 authors.
Funding
Abstract
backgroundAcross all age groups, management of type 1 diabetes (T1D) places substantial responsibility and emotional burden upon families. This study explored parent perceptions of the burdens of caring for very young children with T1D.
methodsSemi-structured qualitative interviews were conducted with parents (85% mothers) of 79 children with T1D, aged 1 to <8 years old, from four diverse pediatric diabetes clinical centers. Interviews were transcribed, coded, and analyzed using hybrid thematic analysis to derive central themes.
resultsYouth (77% White) had T1D for ≥6 months: age (M ± SD) 5.2 ± 1.5 years, diabetes duration 2.4 ± 1.3 years, and A1c 63 ± 10 mmol/mol (7.9 ± 0.9%); 66% used an insulin pump and 61% used CGM. Three major themes emerged related to diabetes burdens: (a) the emotional burden of diabetes on themselves and their children, (b) the burden of finding, training, and trusting effective secondary caregivers to manage the child's diabetes, and (c) suggestions for how more comprehensive, personalized diabetes education from healthcare providers for parents and secondary caregivers could help reduce parent burden and worry.
conclusionsIn families with very young children with T1D, parental perceptions of the burden of managing diabetes are common and could be mitigated by tailored education programs that increase parent knowledge, bolster parents' confidence in themselves, and increase trust in their secondary caregivers to manage diabetes. Reduced parental burden and increased caregiver knowledge may positively impact child's glycemic control, as well as improve parent and child quality of life.
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