Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Clinical Research Article
  • Published:

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

Pediatric Research (2024)Cite this article

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.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Similar content being viewed by others

Data availability

The data that support the findings are available for this study.

References

  1. Lyman, B., Rempel, G., Windsor, K. & Guenter, P. Use of nasogastric feeding tubes for children at home: a template for caregiver education. Nutr. Clin. Pract. 32, 831–833 (2017).

    Article  PubMed  Google Scholar 

  2. Sterni, L. M. et al. An official American Thoracic Society clinical practice guideline: pediatric chronic home invasive ventilation. Am. J. Respir. Crit. Care Med. 193, e16–e35 (2016).

    Article  PubMed  PubMed Central  Google Scholar 

  3. Medical Home Initiatives for Children With Special Needs Project Advisory Committee. American Academy of Pediatrics The medical home. Pediatrics 110, 184–186 (2002).

    Article  Google Scholar 

  4. Mahant, S., Cohen, E., Nelson, K. E. & Rosenbaum, P. Decision-making around gastrostomy tube feeding in children with neurologic impairment: engaging effectively with families. Paediatr. Child Health 23, 209–213 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  5. Remijn, L., Kalsbeek, C. J. C., Platteel, V. & Kindermann, A. How to support parents and healthcare professionals in the decision-making process of tube feeding in children? Disabil. Health J. 15, 101261 (2022).

    Article  PubMed  Google Scholar 

  6. Xue, M. et al. The experience of family caregivers of patients receiving home nasogastric tube feeding in China: a descriptive qualitative study. J. Hum. Nutr. Diet. 35, 14–22 (2022).

    Article  PubMed  Google Scholar 

  7. Rehm, R. S. Nursing’s contribution to research about parenting children with complex chronic conditions: an integrative review, 2002 to 2012. Nurs. Outlook 61, 266–290 (2013).

    Article  PubMed  Google Scholar 

  8. Toly, V. B., Musil, C. M. & Carl, J. C. Families with children who are technology dependent: normalization and family functioning. West J. Nurs. Res 34, 52–71 (2012).

    Article  PubMed  Google Scholar 

  9. Khalil, S. T. et al. Outcomes of infants with home tube feeding: comparing nasogastric vs gastrostomy tubes. J. Parenter. Enter. Nutr. 41, 1380–1385 (2017).

    Article  Google Scholar 

  10. Evans, S. et al. Monitoring of home safety issues in children on enteral feeds with inherited metabolic disorders. Arch. Dis. Child 95, 668–672 (2010).

    Article  CAS  PubMed  Google Scholar 

  11. Evans, S., MacDonald, A., Daly, A., Hopkins, V. & Holden, C. Home enteral tube feeding in patients with inherited metabolic disorders: safety issues. J. Hum. Nutr. Diet. 20, 440–445 (2007).

    Article  CAS  PubMed  Google Scholar 

  12. Evans, S., Holden, C. & MacDonald, A. Home enteral feeding audit 1 year post-initiation. J. Hum. Nutr. Diet. 19, 27–29 (2006).

    Article  CAS  PubMed  Google Scholar 

  13. Page, B., Nawaz, R., Haden, S., Vincent, C. & Lee, A. C. H. Paediatric enteral feeding at home: an analysis of patient safety incidents. Arch. Dis. Child 104, 1174–1180 (2019).

    Article  PubMed  Google Scholar 

  14. Page, B. F., Hinton, L., Harrop, E. & Vincent, C. The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’. Health Expect. 23, 1144–1154 (2020).

    Article  PubMed  PubMed Central  Google Scholar 

  15. Northington, L., Lyman, B., Guenter, P., Irving, S. Y. & Duesing, L. Current practices in home management of nasogastric tube placement in pediatric patients: a survey of parents and homecare providers. J. Pediatr. Nurs. 33, 46–53 (2017).

    Article  PubMed  Google Scholar 

  16. Lyman, B. et al. Use of temporary enteral access devices in hospitalized neonatal and pediatric patients in the United States. J. Parenter. Enter. Nutr. 40, 574–580 (2016).

    Article  Google Scholar 

  17. Loke, S. X. Y., Chew, E. Y. H., Siew, A. L., Glass, G. F. Jr. & Chan, E. Y. Transiting back home: caregivers’ lived experiences in caring for loved ones on the nasogastric tube in the home-setting in Singapore. J. Transcult. Nurs. 34, 343–355 (2023).

    Article  PubMed  Google Scholar 

  18. Quet, J. “Transitioning from NG to GT and working towards safer discharges – part deux “Continuing Medical Education (CME), CHEO, February 3, (2021).

  19. Connected Care @ SickKids [Internet]. [cited 2023 May 18]. Available from: https://www.connectedcare.sickkids.ca/

  20. Zhu, W. & Jiang, Y. A meta-analytic study of predictors for informal caregiver burden in patients with stroke. J. Stroke Cerebrovasc. Dis. 27, 3636–3646 (2018).

    Article  PubMed  Google Scholar 

  21. Ames, H., Glenton, C. & Lewin, S. Purposive sampling in a qualitative evidence synthesis: a worked example from a synthesis on parental perceptions of vaccination communication. BMC Med. Res. Methodol. 19, 26 (2019).

    Article  PubMed  PubMed Central  Google Scholar 

  22. Saunders, B. et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual. Quant. 52, 1893–1907 (2018).

    Article  PubMed  Google Scholar 

  23. Hsieh, H. F. & Shannon, S. E. Three approaches to qualitative content analysis. Qual. Health Res. 15, 1277–1288 (2005).

    Article  PubMed  Google Scholar 

  24. Tong, A., Sainsbury, P. & Craig, J. Consolidated Criteria for Reporting Qualitative Research (Coreq): a 32-item checklist for interviews and focus groups. Int. J. Qual. Health Care 19, 349–357 (2007).

    Article  PubMed  Google Scholar 

  25. O’Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A. & Cook, D. A. Standards for reporting qualitative research: a synthesis of recommendations. Acad. Med. 89, 1245–1251 (2014).

    Article  PubMed  Google Scholar 

  26. Chan, Y. H., Lim, C. Z., Bautista, D., Malhotra, R. & Østbye, T. The health and well-being of caregivers of technologically dependent children. Glob. Pediatr. Health 6, 2333794x18823000 (2019).

    PubMed  PubMed Central  Google Scholar 

  27. Lyman, B., Peyton, C. & Healey, F. Reducing nasogastric tube misplacement through evidence-based practice: is your practice up-to-date? Am. Nurse Today 13, 6–11 (2018).

    Google Scholar 

  28. Koch, K. D. & Jones, B. L. Supporting parent caregivers of children with life-limiting illness. Children 5, 85 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  29. Keilty, K., Cohen, E., Ho, M., Spalding, K. & Stremler, R. Sleep disturbance in family caregivers of children who depend on medical technology: a systematic review. J. Pediatr. Rehabil. Med. 8, 113–130 (2015).

    PubMed  Google Scholar 

  30. Fernández-Medina, I. M. et al. Socio-family support for parents of technology-dependent extremely preterm infants after hospital discharge. J. Child Health Care 26, 42–55 (2022).

    Article  PubMed  Google Scholar 

  31. Toly, V. B., Blanchette, J. E., Al-Shammari, T. & Musil, C. M. Caring for technology-dependent children at home: problems and solutions identified by mothers. Appl. Nurs. Res. 50, 151195 (2019).

    Article  PubMed  PubMed Central  Google Scholar 

  32. Onofri, A. et al. Telemedicine in children with medical complexity on home ventilation during the Covid-19 pandemic. Pediatr. Pulmonol. 56, 1395–1400 (2021).

    Article  PubMed  PubMed Central  Google Scholar 

  33. Gonçalves-Bradley, D. C., Lannin, N. A., Clemson, L. M., Cameron, I. D. & Shepperd, S. Discharge planning from hospital. Cochrane Database Syst. Rev. 2016, Cd000313 (2016).

    PubMed  PubMed Central  Google Scholar 

  34. Abrahamson, V., Jensen, J., Springett, K. & Sakel, M. Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: a qualitative study. Disabil. Rehabil. 39, 1683–1694 (2017).

    Article  PubMed  Google Scholar 

  35. Hestevik, C. H., Molin, M., Debesay, J., Bergland, A. & Bye, A. Hospital nurses and home care providers’ experiences of participation in nutritional care among older persons and their family caregivers: a qualitative study. J. Hum. Nutr. Diet. 33, 198–206 (2020).

    Article  CAS  PubMed  Google Scholar 

  36. Gillick, M. R. The critical role of caregivers in achieving patient-centered care. JAMA 310, 575–576 (2013).

    Article  CAS  PubMed  Google Scholar 

Download references

Funding

Funded by the Canadian Institute for Health Research, FRN#: 165590.

Author information

Authors and Affiliations

  1. Division of Respiratory Medicine, Department of Pediatrics, The Hospital for Sick Children, Toronto, ON, Canada

    Samantha Mekhuri, Anam Shahil-Feroz, Natalie Pitch, Munazzah Ambreen & Reshma Amin

  2. Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada

    Anam Shahil-Feroz & Reshma Amin

  3. Connected Care, The Hospital for Sick Children, Toronto, ON, Canada

    Stephanie Chu & Krista Keilty

  4. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada

    Stephanie Chu & Krista Keilty

  5. Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada

    Krista Keilty, Julia Orkin & Reshma Amin

  6. Department of Pediatrics, Children’s Hospital of Eastern Ontario, Ottawa, ON, Canada

    Naomi Dussah & Nathalie Major

  7. Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, ON, Canada

    Julia Orkin

  8. Department of Pediatrics, University of Toronto, Toronto, ON, Canada

    Julia Orkin & Reshma Amin

Authors
  1. Samantha Mekhuri
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Anam Shahil-Feroz
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Natalie Pitch
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Munazzah Ambreen
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Stephanie Chu
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Krista Keilty
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Naomi Dussah
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Nathalie Major
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Julia Orkin
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Reshma Amin
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

R.A., N.M., J.O., and M.A. conceived and designed the analysis. S.M., N.D., and N.P. collected the data. S.M. and A.S.F. performed the qualitative analysis and wrote the manuscript. All other authors provided feedback and revisions. All authors approved the final manuscript.

Corresponding author

Correspondence to Reshma Amin.

Ethics declarations

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Consent Statement To adhere to ethical approval, the caregivers provided written consent for participation.

Supplementary information

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Mekhuri, S., Shahil-Feroz, A., Pitch, N. et al. Family caregivers of children transitioning hospital to home receiving nasogastric feeding: descriptive qualitative study. Pediatr Res (2024). https://doi.org/10.1038/s41390-024-03256-7

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1038/s41390-024-03256-7

Search

Advanced search

Quick links