Family caregivers of children transitioning hospital to home receiving nasogastric feeding: descriptive qualitative study

Samantha Mekhuri; Anam Shahil-Feroz; Natalie Pitch; Munazzah Ambreen; Stephanie Chu; Krista Keilty; Naomi Dussah; Nathalie Major; Julia Orkin; Reshma Amin

doi:10.1038/s41390-024-03256-7

Family caregivers of children transitioning hospital to home receiving nasogastric feeding: descriptive qualitative study

Pediatr Res. 2024 May 15. doi: 10.1038/s41390-024-03256-7. Online ahead of print.

Authors

Samantha Mekhuri¹, Anam Shahil-Feroz^{1

2}, Natalie Pitch¹, Munazzah Ambreen¹, Stephanie Chu^{3

4}, Krista Keilty^{3

4

5}, Naomi Dussah⁶, Nathalie Major⁶, Julia Orkin^{5

7

8}, Reshma Amin^{9

10

11

12}

Affiliations

¹ Division of Respiratory Medicine, Department of Pediatrics, The Hospital for Sick Children, Toronto, ON, Canada.
² Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada.
³ Connected Care, The Hospital for Sick Children, Toronto, ON, Canada.
⁴ Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.
⁵ Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada.
⁶ Department of Pediatrics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
⁷ Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, ON, Canada.
⁸ Department of Pediatrics, University of Toronto, Toronto, ON, Canada.
⁹ Division of Respiratory Medicine, Department of Pediatrics, The Hospital for Sick Children, Toronto, ON, Canada. reshma.amin@sickkids.ca.
¹⁰ Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada. reshma.amin@sickkids.ca.
¹¹ Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada. reshma.amin@sickkids.ca.
¹² Department of Pediatrics, University of Toronto, Toronto, ON, Canada. reshma.amin@sickkids.ca.

PMID: 38750294
DOI: 10.1038/s41390-024-03256-7

Abstract

Background: Nasogastric tube (NGT) feeding is used for children unable to tolerate adequate nutrition orally to sustain growth and development. This vulnerable population is at risk of gaps in care because they often lack a medical home due to the transitional nature of the technology. This study explores perspectives and challenges of family caregivers (FCs) of children requiring NGTs transitioning from hospital to home.

Methods: Semi-structured qualitative interviews were conducted with FCs at the Hospital for Sick Children and Children's Hospital of Eastern Ontario. Research ethics approval was obtained (SK REB# 1000064641, CHEO REB# 19/133X). Written informed consent was obtained.

Results: Thirteen interviews revealed FCs feeling overwhelmed and uncomfortable with first communication of the NGT but learned to manage NGTs with training and virtual care support over time. Initial transition home was described as challenging due to physical, emotional, and financial strain associated with constant management of NGTs.

Conclusions: Our study describes the importance of emotional support and additional time for decision making during initial communication to FCs of their child's NGT need, and access to specialized healthcare professionals after transitioning home. Future programs should focus on personalized education and psychosocial support for FCs of children with NGTs at home.

Impact: This study delves into the challenges faced by family caregivers (FCs) of children requiring nasogastric tube (NGT) feeding when returning home from the hospital. There is a pressing need for more time for FC decision-making and emotional support during the initial communication of the need for an NGT for their child. In addition, FCs require ongoing 24/7 support including access to healthcare professionals specialized in NGT care after the initial transition home. The study highlights the need for personalized education and psychosocial supports for FCs of children with NGTs to improve their experiences at home.