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Feeding after congenital heart surgery: a mixed-methods study of the caregiver experience

Published online by Cambridge University Press:  20 October 2023

Emily Wright Open the ORCID record for Emily Wright [Opens in a new window] ,
Chelsea Phillips ,
Saria Matthews ,
Dio Kavalieratos ,
William G. Sharp  and
Nikhila Raol Open the ORCID record for Nikhila Raol [Opens in a new window]
Emily Wright*
Affiliation:
Department of Otolaryngology-Head and Neck Surgery, Emory University School of Medicine, Atlanta, USA
Chelsea Phillips
Affiliation:
University of North Carolina at Chapel Hill, Chapel Hill, USA
Saria Matthews
Affiliation:
Department of Otolaryngology-Head and Neck Surgery, Emory University School of Medicine, Atlanta, USA
Dio Kavalieratos
Affiliation:
Department of Family and Preventive Medicine, Emory University School of Medicine, Atlanta, USA
William G. Sharp
Affiliation:
Department of Pediatrics, Emory University School of Medicine, Atlanta, USA
Nikhila Raol
Affiliation:
Department of Otolaryngology-Head and Neck Surgery, Emory University School of Medicine, Atlanta, USA
*
Corresponding author: E. Wright; Email: emily.wright@emory.edu
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Abstract

Objectives:

Feeding difficulties after congenital heart surgery are a common concern for caregivers of children with CHD. Insight into the intricacies of their experience is lacking. With a better understanding, healthcare providers can continue to optimize the approach and support mechanisms for these families. This study will explore the psychosocial impacts on caregivers, define barriers to care, and identify areas to improve their care.

Study Design:

This mixed-methods study combined semi-structured interviews with surveys. Purposive sampling targeted caregivers of a child who underwent heart surgery and was discharged with alternative enteral feeding access. A hybrid inductive-deductive methodology was used to analyse interview transcripts. Survey scores were compared to interview content for concordance.

Results:

Fifteen interviews were conducted with socio-demographically diverse caregivers. Feeding difficulties were often identified as their greatest challenge, with the laborious feeding schedule, sleep deprivation, and tube management being common contributors. Most caregivers described feeling overwhelmed and worried. Time-intensive feeding schedules and lack of appropriate childcare options precluded caregivers’ ability to work. Barriers to care included imperfect feeding education, proximity of specialist clinics, and issues with medical supply companies. Caregiver proposals for improved care addressed easing the transition home, improving emotional support mechanisms, and intensifying feeding therapy for expedited tube removal.

Conclusion:

This study describes the psychosocial toll on the caregiver, typical barriers to care, and ideas for improved provision of care. These themes and ideas can be used to advance the family-centered approach to feeding difficulties after heart surgery.

Keywords

Feeding difficultiesCHDcongenital heart surgerycaregiver experience
Type
Original Article
Information
Cardiology in the Young , Volume 34 , Issue 4 , April 2024 , pp. 822 - 830
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Copyright
© The Author(s), 2023. Published by Cambridge University Press

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