Food for thought: Investigating parents'perspectives of the impact of their child's home enteral nutrition (HEN)

Jennifer Fereday, Chris Thomas, Alison Forrest, Philip Darbyshire

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)


Children with severe feeding problems present unique challenges as they may fail to thrive despite parents' best efforts and require additional nutritional support. Comparatively few studies have examined the impact of tube-feeding on the lives of children and parents from the parents' perspective. This study redresses this imbalance by providing a detailed interpretive account of parents' experiences of their child's home enteral nutrition (HEN). A sample of 34 parents in South Australia were interviewed individually or in focus groups. Data were analysed using a data-driven thematic analysis technique. Participants were parents of children in the HEN service at a tertiary paediatric hospital. The impact of tube-feeding a child at home pervaded all areas of family life. This ranged from administering dietary formulas to their child often over 24 hours, constantly planning ahead to accommodate activities, being the child's 'case manager' and primary communicator between health professionals, curtailing social activities due to lack of respite care, and coping with the negative, prejudiced attitudes of people when going out in public with their child. This study highlights the extensive physical and psychological demands that HEN places on families, and underscores support needed from health professionals to help ease the demands of caring for such a child at home. Parents'accounts of their HEN experiences provide opportunities for all children's services and professionals to improve services and approaches, for example by placing more emphasis on psychological support for parents and creating greater awareness of HEN among the general public.

Original languageEnglish
Pages (from-to)9-14
Number of pages6
JournalNeonatal, Paediatric and Child Health Nursing
Issue number1
Publication statusPublished - Mar 2009
Externally publishedYes


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