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Development of feeding information for infants with CHD
Luise V Marino1,2,3, Mark J Johnson2,3, Natalie J Davies1
1Department of Dietetics/SLT, University of Southampton, Southampton, UK.
Insights
Parents of infants with congenital heart disease (CHD) now have improved feeding information. This study developed resources addressing parental stress and information gaps, particularly concerning complementary feeding and post-surgery nutrition.
Area of Science:
- Pediatric Cardiology
- Nutritional Science
- Parental Support
Background:
- Infants with congenital heart disease (CHD) frequently experience growth failure, impacting surgical outcomes.
- Optimal pre-surgical growth is crucial, yet parents report a lack of accessible feeding information, causing significant stress.
- Existing feeding guidelines inadequately address the specific needs of infants with CHD.
Purpose of the Study:
- To develop and refine feeding information tailored for parents of infants with congenital heart disease (CHD).
- To address identified gaps in parental knowledge regarding infant feeding challenges and developmental milestones.
- To reduce parental stress associated with managing nutrition for infants with CHD.
Main Methods:
- Conducted a comprehensive literature search across six electronic databases and grey literature sources.
- Developed feeding information and iteratively refined it through semi-structured interviews with parents and healthcare professionals.
- Utilized thematic saturation to ensure the information was comprehensive, relevant, and easy to understand.
Main Results:
- Identified 5 relevant studies from 23 unique articles and reviewed four web pages from grey literature.
- Interviewed 22 parents and 25 healthcare professionals to gather feedback on the developed feeding information.
- Found that while the information was generally sufficient, parents specifically requested guidance on introducing complementary foods and navigating feeding post-surgery.
Conclusions:
- Successfully developed feeding information for infants with congenital heart disease (CHD).
- Key identified gaps include guidance on complementary food introduction and the long-term feeding trajectory after surgery.
- The developed information aims to empower parents with the knowledge needed for optimal infant nutrition and development.
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.
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