RESUMO
This study assessed the provision of education and support to parents of children on home enteral nutrition (HEN), current dietetic support available and perceived challenges facing parents and carers. From the 39 responses (13%), 29 (83%, n = 35) parents suggested services for HEN need improvement. 29 (74%, n = 39) parents wanted more structured follow up and 22 (56%) would like one person to co-ordinate HEN, education and discharge. 7 parents (18%) reported a need for further education of health care professionals (HCP). Hospital dietitians were the most common HCPs reported to provide support to patients following discharge. Specialist paediatric HEN dietetic services working in a dedicated HEN team, who would provide accurate training and education and liaise with both parents and community care services post discharge should be in place. This would facilitate transfer to community care, reduce hospital re-admissions, outpatient department attendances and costs.
