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“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
Author(s) -
Commissariat Persis V.,
Harrington Kara R.,
Whitehouse Amanda L.,
Miller Kellee M.,
Hilliard Marisa E.,
Van Name Michelle,
DeSalvo Daniel J.,
Tamborlane William V.,
Anderson Barbara J.,
DiMeglio Linda A.,
Laffel Lori M.
Publication year - 2020
Publication title -
pediatric diabetes
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.678
H-Index - 75
eISSN - 1399-5448
pISSN - 1399-543X
DOI - 10.1111/pedi.12956
Subject(s) - medicine , type 1 diabetes , worry , thematic analysis , diabetes mellitus , glycemic , insulin pump , diabetes management , qualitative research , quality of life (healthcare) , perception , family medicine , gerontology , type 2 diabetes , nursing , anxiety , psychiatry , psychology , social science , neuroscience , sociology , endocrinology
ABSTRACT Background Across 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. Methods Semi‐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. Results Youth (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. Conclusions In 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.