Parent Perspectives of School/Daycare Experiences in Young Children Newly Diagnosed With Diabetes

Authors

Alexa Stern
Brenda Duran
Randi Streisand
Christine H Wang
Carrie Tully
Lauren Clary
Katherine Gallagher
Fran Cogen
Lefkothea Karaviti
Maureen Monaghan
Marisa E Hilliard

Publication Date

5-20-2023

Journal

Journal of Pediatric Psychology

DOI

10.1093/jpepsy/jsad011

PMID

36888882

PMCID

PMC10199729

PubMedCentral® Posted Date

3-8-2023

PubMedCentral® Full Text Version

Post-print

Published Open-Access

yes

Keywords

Adult, Child, Child, Preschool, Humans, Diabetes Mellitus, Type 1, Parents, Schools, Social Class, Students, coping skills and adjustment, diabetes, preschool children, qualitative methods, school functioning

Abstract

OBJECTIVE: A central part of family adjustment to a new diagnosis of type 1 diabetes (T1D) is integrating T1D management into the child's school/daycare. This may be particularly challenging for young children who rely on adults for their diabetes management. This study aimed to describe parent experiences with school/daycare during the first 1.5 years following a young child's T1D diagnosis.

METHODS: As part of a randomized controlled trial of a behavioral intervention, 157 parents of young children with new-onset (<2 >months) T1D reported on their child's school/daycare experience at baseline and at 9- and 15-month post-randomization. We used a mixed-methods design to describe and contextualize parents' experiences with school/daycare. Qualitative data were collected via open-ended responses, and quantitative data were collected from a demographic/medical from.

RESULTS: While most children were enrolled in school/daycare at all time points, over 50% of parents endorsed that T1D affected their child's enrollment, rejection, or removal from school/daycare at 9 or 15 months. We generated five themes related to parents' school/daycare experiences: Child factors, Parent factors, School/Daycare factors, Cooperation between Parents and Staff, and Socio-historical factors. Parents of younger children and those with lower subjective socioeconomic status were significantly more likely to endorse challenges with school/daycare enrollment.

CONCLUSIONS: School/daycare settings present challenges for parents of young children with T1D. Changes may need to occur across contexts to support early childhood education, including advocacy resources for parents to navigate school policies, increased training for school staff, and healthcare team outreach initiatives to parents and schools.