Skip to main content Accessibility help
×
Home

Development of feeding information for infants with CHD

  • Luise V. Marino (a1) (a2) (a3), Mark J. Johnson (a2) (a3), Natalie J. Davies (a1), Catherine Kidd (a1), Trevor Richens (a4), Tara Bharucha (a4) and Anne-Sophie Darlington (a5)...

Abstract

Introduction:

Infants with CHD often experience growth failure. Ensuring optimal growth before surgery is associated with improved outcomes and has emerged as a significant cause of parental stress. Parents have reported a perceived lack of accessible feeding information for infants with CHD. To address this gap, the aim of this study was to develop feeding information to better support parents.

Materials and methods:

A search for existing material on six electronic databases and an internet search for unpublished (grey) literature on feeding information for infants with CHD were carried out. Following the development of feeding information, semi-structured interview(s) with parents/health-care professionals were completed, focusing on whether the information was easy to understand, relevant, provided sufficient information around feeding/feeding difficulties, and whether there were any information gaps. Iterative changes were made to the information following each interview. The process was completed until thematic saturation was achieved.

Results:

A total of 23 unique articles were identified of which 5 studies were included. From the grey literature, four web pages were reviewed. A total of 22 parents and 25 health-care professionals were interviewed. All parents/health-care professionals felt that the feeding information developed provided sufficient information; however, many wanted information on how to introduce complementary food, particularly if weaning was delayed.

Conclusions:

This study describes the development of feeding information for infants with CHD. From parent interviews, gaps identified focused on the introduction of complementary foods and uncertainty regarding the feeding journey beyond surgery.

  • View HTML
    • Send article to Kindle

      To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

      Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

      Find out more about the Kindle Personal Document Service.

      Development of feeding information for infants with CHD
      Available formats
      ×

      Send article to Dropbox

      To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

      Development of feeding information for infants with CHD
      Available formats
      ×

      Send article to Google Drive

      To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

      Development of feeding information for infants with CHD
      Available formats
      ×

Copyright

This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.

Corresponding author

Author for correspondence: L. V. Marino, University Hospital Southampton NHS Foundation Trust, Southampton, JK S016 6YD, UK. Tel: + 44 (0) 23 8079 6000; Fax: 023 8120 3087. E-mail: Luise.marino@uhs.nhs.uk

References

Hide All
1. van der Linde, D, Konings, EE, Slager, MA, et al. Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol 2011; 58: 22412247.
2. Townsend, N, Bhatnagar, P, Wickramasighe, K, Williams, J, Vujcich, D, Rayner, M. Children and Young People Statistics 2013. London: British Heart Foundation Health Promotion Research Group, 2013.
3. Petersen, S, , P.V., Rayner, M. Congenital Heart Disease Statistics. London: British Heart Foundation Health Promotion Research Group 2003.
4. Connor, JA, Kline, NE, Mott, S, Harris, SK, Jenkins, KJ. The meaning of cost for families of children with congenital heart disease. J Pediatr Health Care 2010; 24: 318325.
5. Hehir, DA, Rudd, N, Slicker, J, et al. Normal interstage growth after the norwood operation associated with interstage home monitoring. Pediatr Cardiol 2012; 33: 13151322.
6. Marino, LV, Magee, A. A cross-sectional audit of the prevalence of stunting in children attending a regional paediatric cardiology service. Cardiol Young 2016; 26: 787789.
7. Toole, BJ, Toole, LE, Kyle, UG, Cabrera, AG, Orellana, RA, Coss-Bu, JA. Perioperative nutritional support and malnutrition in infants and children with congenital heart disease. Congenit Heart Dis 2014; 9: 1525.
8. Vaidyanathan, B, Nair, SB, Sundaram, KR, et al. Malnutrition in children with congenital heart disease (CHD) determinants and short term impact of corrective intervention. Indian Pediatr 2008; 45: 541546.
9. Eskedal, LT, Hagemo, PS, Seem, E, et al. Impaired weight gain predicts risk of late death after surgery for congenital heart defects. Arch Dis Child 2008; 93: 495501.
10. Mitting, R, Marino, L, Macrae, D, Shastri, N, Meyer, R, Pathan, N. Nutritional status and clinical outcome in postterm neonates undergoing surgery for congenital heart disease. Pediatr Crit Care Med 2015; 16: 448452.
11. Tregay, J, Brown, K, Crowe, S, Bull, C, Knowles, R, Wray, J. “I was so worried about every drop of milk” – feeding problems at home are a significant concern for parents after major heart surgery in infancy. Matern Child Nutr 2017; 13.
12. Davis, D, Davis, S, Cotman, K, et al. Feeding difficulties and growth delay in children with hypoplastic left heart syndrome versus d-transposition of the great arteries. Pediatr Cardiol 2008; 29: 328333.
13. Tregay, J, Wray, J, Crowe, S, et al. Going home after infant cardiac surgery: a UK qualitative study. Arch Dis Child 2016; 101: 320325.
14. Marino, LV, Johnson, MJ, Hall, HJ, et al. The development of a consensus-based nutritional pathway for infants with CHD before surgery using a modified Delphi process. Cardiol Young 2018; 28: 938948.
15. Kallio, H, Pietila, AM, Johnson, M, Kangasniemi, M. Systematic methodological review: developing a framework for a qualitative semi-structured interview guide. J Adv Nurs 2016; 72: 29542965.
16. Srivastava, A, Thomson, SB, Framework analysis: a qualitative methodology for applied policy research. JOAAG 2009; 4: 7.
17. Clemente, C, Barnes, J, Shinebourne, E, Stein, A, et al. Are infant behavioural feeding difficulties associated with congenital heart disease? Child Care Health Dev 2001; 27: 4759.
18. Lobo, ML. Parent-infant interaction during feeding when the infant has congenital heart disease. J Pediatr Nurs 1992; 7: 97105.
19. Idesoe, Y, Obata, F, Ishikawa, Y. Difficulties mothers have when feeding their infants who have Congenital Heart Disease. JJSE 2006; 43: 6.
20. Medoff-Cooper, B, Naim, M, Torowicz, D, Mott, A. Feeding, growth, and nutrition in children with congenitally malformed hearts. Cardiol Young 2010; 149–153.
21. Association, AH. Feeding Tips for Your Baby with CHD, 2019. Retrieved January 18, 2019, from: https://www.heart.org/en/health-topics/congenital-heart-defects/care-and-treatment-for-congenital-heart-defects/feeding-tips-for-your-baby-with-chd
22. Org, HT. Feeding Problems and Congenital Heart Disease, 2014. Retrieved January 18, 2018, from: http://www.healthtalk.org/peoples-experiences/heart-disease/parents-children-congenital-heart-disease/feeding-problems-and-congenital-heart-disease
23. Count, S. Feeding a Baby Who Has Congenital Heart Disease, 2019. Retrieved January 18, 2019, from: http://www.secondscount.org/pediatric-center/pediatric-detail?cid=c14b51c7-e10b-4aec-ae36-636aff48990c.
24. Physicians, A.A.o.F. Congenital Heart Disease: How to Care for Your Baby and Yourself. Retrieved January 18, 2019, from: https://familydoctor.org/how-to-care-for-your-baby-and-yourself/
25. Federation, C.s.H. Feeding Children with Heart Conditions, 2014. Retrieved January 19, 2019, from: http://www.chfed.org.uk/how-we-help/information-service/caring-for-heart-children/feeding-children-with-heart-conditions/.
26. Lobo, ML, Michel, Y. Behavioral and physiological response during feeding in infants with congenital heart disease: a naturalistic study. Prog Cardiovasc Nurs 1995; 10: 2634.
27. Duff, AJ, Wolfe, SP, Dickson, C, Conway, SP, Brownlee, KG. Feeding behavior problems in children with cystic fibrosis in the UK: prevalence and comparison with healthy controls. J Pediatr Gastroenterol Nutr 2003; 36: 443447.
28. Hill, G, Silverman, A, Noel, R, Bartz, PJ. Feeding dysfunction in single ventricle patients with feeding disorder. Congenit Heart Dis 2014; 9: 2629.
29. Ross, ES, Browne, JV. Developmental progression of feeding skills: an approach to supporting feeding in preterm infants. Semin Neonatol 2002; 7: 469475.
30. Kerzner, B. Clinical investigation of feeding difficulties in young children: a practical approach. Clin Pediatr (Phila) 2009; 48: 960965.
31. Indramohan, G, Pedigo, TP, Rostoker, N, Cambare, M, Grogan, T, Federman, MD. Identification of risk factors for poor feeding in infants with congenital heart disease and a novel approach to improve oral feeding. J Pediatr Nurs 2017; 35: 149154.
32. West, C. Introduction of complementary foods to infants. Ann Nutr Metab 2017; 70: 4754.
33. Fewtrell, M, Bronsky, J, Campoy, C, et al. Complementary feeding: a position paper by the European Society for Paediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) Committee on Nutrition. J Pediatr Gastroenterol Nutr 2017; 64: 119132.
34. WHO Working Group on the Growth Reference Protocol and the WHO Task Force on Methods for the Natural Regulation of Fertility. Growth of healthy infants and the timing, type, and frequency of complementary foods. Am J Clin Nutr 2002; 76: 620627.
35. Vogt, KN, Manlhiot, C, Van Arsdell, G, Russell, JL, Mital, S, McCrindle, BW. Somatic growth in children with single ventricle physiology impact of physiologic state. J Am Coll Cardiol 2007; 50: 18761883.
36. Manary, MJ, Ndkeha, MJ, Ashorn, P, Maleta, K, Briend, A. Home based therapy for severe malnutrition with ready-to-use food. Arch Dis Child 2004; 89: 557561.
37. Cavell, B. Gastric emptying in infants with congenital heart disease. Acta Paediatr Scand 1981; 70: 517520.
38. Hehir, DA, Easley, RB, Byrnes, J. Noncardiac challenges in the cardiac ICU: feeding, growth and gastrointestinal complications, anticoagulation, and analgesia. World J Pediatr Congenit Heart Surg 2016; 7: 199209.
39. Zhang, H, Gu, Y, Mi, Y, Jin, Y, Fu, W, Latour, JM. High-energy nutrition in paediatric cardiac critical care patients: a randomized controlled trial. Nurs Crit Care 2019; 24: 97102.
40. Cavell, B. Effect of feeding an infant formula with high energy density on gastric emptying in infants with congenital heart disease. Acta Paediatr Scand 1981; 70: 513516.
41. Shine, AM, Finn, DG, Allen, N, McMahon, CJ. Transition from tube feeding to oral feeding: experience in a tertiary care paediatric cardiology unit. Ir J Med Sci 2019; 188: 201208.
42. Barnard, K Nursing child assessment feeding scales. In: Nursing Child Assessment Feeding Scales. University of Washington, School of Nursing, Seattle, 1978.
43. Denniss, DL, Sholler, GF, Costa, DSI, Winlaw, DS, Kasparian, NA. Need for routine screening of health-related quality of life in families of young children with complex congenital heart disease. J Pediatr 2019; 205: 2128.e2.
44. Abassi, H, Gavotto, A, Picot, MC, et al. Impaired pulmonary function and its association with clinical outcomes, exercise capacity and quality of life in children with congenital heart disease. Int J Cardiol 2019; 285: 8692.
45. Shackleford, JL, Kelley, SJ, Spratling, R. Applying the self-determination theory to health-related quality of life for adolescents with congenital heart disease. J Pediatr Nurs 2019; 46: 6271.

Keywords

Metrics

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed