ESPE Abstracts

Background and aims: Congenital hyperinsulinism (CHI) is a rare condition causing severe and recurrent hypoglycaemia in children. Feeding is a key aspect of glucose delivery; however, with severe illness causing nausea and frequent use of parenteral and non-oral feeding, infants with CHI often develop a range of feeding problems. Previous studies have shown persistence of feeding problems in this group but there is limited data on families’ experiences and perspectives. We aim ed to explore parents’ perspectives of feeding to better understand and support this population.

Methods: Using a randomly selected cohort of patients with a confirmed genetic diagnosis of CHI between 2015 to 2020, semi structured interviews exploring parents’ perspectives of feeding their child with CHI during ages 0-2 years (n = 4), were conducted by a non-CHI specialist doctor and dietitian to minimise prior assumptions and reduce bias. Themes were identified and explored through inductive thematic analysis.

Results: Most parents reported weaning earlier than the recommended age of 6 months; once solids were introduced, feeding was generally an easier experience than milk feeding. Mothers were not able to breastfeed; one felt they would worsen feeding problems and compromise glucose status. Most parents reported that their child did not experience hunger and so feeds often felt forced. Families commented that feeding was experienced as clinical or functional, rather than a nurturing and enjoyable experience. The majority of children had nasogastric tubes for varying periods of time; all were removed by 12 months. Most parents found the feeding experience challenging, but felt it had not affected their child’s development. Families were mostly happy with the support they received although one reported a desire for more advice about maintaining blood glucose levels through use of solid foods at weaning.

Conclusion: Our study confirms previous reports of feeding problems being common amongst CHI patients. Parental perspectives indicated concerns over the lack of hunger in children and difficulty in breast feeding with a preference for early weaning to ameliorate feeding problems. Further interviews are planned to investigate the breadth of parent experiences and improve care and advice.