Parent experiences of infant feeding in congenital hyperinsulinism: a thematic analysis
4 affiliations
- 1Department of Paediatric Endocrinology, Royal Manchester Children’s Hospital
- 2Department of Paediatric Dietetics, Royal Manchester Children’s Hospital
- 3Department of Health Professions, Faculty of Health and Education, Manchester Metropolitan University
- 4Faculty of Biology, Medicine and Health, University of Manchester
Abstract
Introduction: Congenital Hyperinsulinism (CHI) is a rare condition of hypoglycaemia due to excess insulin secretion. Feeding problems are frequent, and often persistent, in patients with CHI. The range, extent and persistence of feeding problems has been described, but parent and family perspectives are lacking. As feeding is a key aspect of the maintenance of glycaemic stability, and a vital part of infant development and family bonding, it is important to understand the impact of feeding problems on parents and caregivers. This qualitative study explored caregivers’ experiences of feeding during the initial years following diagnosis.
Methods: We conducted semi-structured interviews with caregivers of patients with CHI, from a single international centre of excellence. Patients had received a confirmed genetic diagnosis of CHI between 2015 and 2025. All interviews were completed using Microsoft Teams, recorded and transcribed. Transcriptions were analysed using thematic analysis to identify themes.
Results: Thematic analysis identified four main themes; Theme 1: Medical Management Disrupts Feeding: Frequent feeding schedules, enteral tube feeding and medication regimens were perceived to interfere with the establishment of typical feeding behaviours and family mealtime routines. Theme 2: Feeding Aversion and Delayed Oral Development: Parents described feeding aversion and delays in oral feeding skill development, with many children demonstrating reduced interest in eating, reluctance to try new foods and prolonged dependence on enteral feeding. Theme 3: Feeding Driven by Glycaemic Control: Feeding was consistently described as being targeted to maintain glycaemic stability rather than respond to hunger and satiety cues. Theme 4: Psychosocial Impact on Families: Feeding challenges had a substantial psychosocial impact on families, contributing to parental stress and anxiety, increasing caregiver burden, and affecting family routines, social activities and confidence around mealtimes.
Conclusion: This study identified the complex, demanding and distressing challenges faced by families of infants with CHI, adversely affecting family wellbeing. Early multidisciplinary input, including dietetics, speech and language therapy, and psychological support, along with practical CHI-specific feeding guidance may reduce burden and improve outcomes. The findings of this study highlight the need for training and education in local healthcare teams managing CHI.
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BibTeX
@article{worthington2026parent,
title = {{Parent experiences of infant feeding in congenital hyperinsulinism: a thematic analysis}},
author = {Sarah Worthington and Eleanor Ginbey and Osarugue Otabor and Caroline Hall and Bethany Allchin and Sameera Hannah Auckburally and Maria Salomon-Estebanez and Indraneel Banerjee and Chris Worth},
journal = {Frontiers in Endocrinology},
year = {2026},
month = oct,
doi = {10.3389/fendo.2026.1955679},
url = {https://www.frontiersin.org/articles/10.3389/fendo.2026.1955679/full},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Parent experiences of infant feeding in congenital hyperinsulinism: a thematic analysis
AU - Sarah Worthington
AU - Eleanor Ginbey
AU - Osarugue Otabor
AU - Caroline Hall
AU - Bethany Allchin
AU - Sameera Hannah Auckburally
AU - Maria Salomon-Estebanez
AU - Indraneel Banerjee
AU - Chris Worth
PY - 2026
DA - 2026/10/20
JO - Frontiers in Endocrinology
DO - 10.3389/fendo.2026.1955679
UR - https://www.frontiersin.org/articles/10.3389/fendo.2026.1955679/full
AB - Introduction: Congenital Hyperinsulinism (CHI) is a rare condition of hypoglycaemia due to excess insulin secretion. Feeding problems are frequent, and often persistent, in patients with CHI. The range, extent and persistence of feeding problems has been described, but parent and family perspectives are lacking. As feeding is a key aspect of the maintenance of glycaemic stability, and a vital part of infant development and family bonding, it is important to understand the impact of feeding problems on parents and caregivers. This qualitative study explored caregivers’ experiences of feeding during the initial years following diagnosis. Methods: We conducted semi-structured interviews with caregivers of patients with CHI, from a single international centre of excellence. Patients had received a confirmed genetic diagnosis of CHI between 2015 and 2025. All interviews were completed using Microsoft Teams, recorded and transcribed. Transcriptions were analysed using thematic analysis to identify themes. Results: Thematic analysis identified four main themes; Theme 1: Medical Management Disrupts Feeding: Frequent feeding schedules, enteral tube feeding and medication regimens were perceived to interfere with the establishment of typical feeding behaviours and family mealtime routines. Theme 2: Feeding Aversion and Delayed Oral Development: Parents described feeding aversion and delays in oral feeding skill development, with many children demonstrating reduced interest in eating, reluctance to try new foods and prolonged dependence on enteral feeding. Theme 3: Feeding Driven by Glycaemic Control: Feeding was consistently described as being targeted to maintain glycaemic stability rather than respond to hunger and satiety cues. Theme 4: Psychosocial Impact on Families: Feeding challenges had a substantial psychosocial impact on families, contributing to parental stress and anxiety, increasing caregiver burden, and affecting family routines, social activities and confidence around mealtimes. Conclusion: This study identified the complex, demanding and distressing challenges faced by families of infants with CHI, adversely affecting family wellbeing. Early multidisciplinary input, including dietetics, speech and language therapy, and psychological support, along with practical CHI-specific feeding guidance may reduce burden and improve outcomes. The findings of this study highlight the need for training and education in local healthcare teams managing CHI.
SN - 1664-2392
ER -