Caregivers’ experiences with continuous glucose monitoring in pediatric type 1 diabetes: Insights from topic modeling of an online health community
Hyeryoung Kim, Kyungil KwakObjective
Caregivers of children with type 1 diabetes (T1D) face substantial demands related to continuous glucose monitoring (CGM), as young children cannot manage CGM independently. Online health communities (OHCs) provide useful digital spaces where caregivers facing similar challenges share practical information and experiences. This study aims to identify the main topics discussed in an OHC to better understand caregivers’ lived experiences with CGM use in children.
Method
We collected 12,598 documents from a major Korean T1D OHC by filtering CGM-related and caregiver-specific keywords. The study period was between October 27, 2015, and August 22, 2024. After natural language processing of Korean text using the Kiwi morphological analyzer, topic modeling was performed using Latent Dirichlet Allocation in the Python library Gensim (version 4.4.0). The optimal model was selected using coherence and perplexity scores, and topic labels were finalized through independent review and consensus among two researchers.
Results
Nine topics were identified and grouped into four themes: (1) digital CGM ecosystem (35.3%), (2) CGM device use and embodied management (30.0%), (3) daily and clinical management (16.9%), and (4) caregiving across social and institutional contexts (17.7%). While technology management dominated parental discourse, notable findings also included peer-driven technology education, device wearability challenges, school management barriers, and collective information sharing around healthcare access and policy.
Conclusions
The findings contribute to a better understanding of the caregiving experiences and needs of parents managing pediatric T1D with CGM, providing valuable empirical insights for healthcare practitioners and CGM manufacturers to develop more targeted support strategies.