"I can't provide what my child needs": Early feeding experiences of caregivers of children with craniofacial microsomia

Bruna Costa; Nicola M Stock; Alexis L Johns; Christy M McKinney; Amelia F Drake; Amy Schefer; Carrie L Heike

doi:10.1016/j.pedn.2024.04.053

"I can't provide what my child needs": Early feeding experiences of caregivers of children with craniofacial microsomia

J Pediatr Nurs. 2024 May 9:S0882-5963(24)00178-7. doi: 10.1016/j.pedn.2024.04.053. Online ahead of print.

Authors

Bruna Costa¹, Nicola M Stock¹, Alexis L Johns², Christy M McKinney³, Amelia F Drake⁴, Amy Schefer³, Carrie L Heike⁵

Affiliations

¹ Center for Appearance Research, University of the West of England, UK.
² Divison of Plastic and Maxillofacial Surgery, Children's Hospital Los Angeles and Keck School of Medicine, University of Southern California, USA.
³ Seattle Children's Research Institute, Seattle, WA, USA.
⁴ University of North Carolina, School of Medicine, Chapel Hill, NC, USA.
⁵ Seattle Children's Research Institute, Seattle, WA, USA. Electronic address: carrie.heike@seattlechildrens.org.

PMID: 38729894
DOI: 10.1016/j.pedn.2024.04.053

Abstract

Purpose: Craniofacial microsomia (CFM) is a congenital condition that can be associated with feeding challenges in infants. As part of the larger 'Craniofacial microsomia: Accelerating Research and Education (CARE)' program, this study described caregivers' early feeding experiences.

Design and materials: US-based caregivers of 34 children with CFM participated in remote narrative interviews. Two authors completed inductive thematic analysis in an iterative process until consensus was reached.

Results: Caregivers' narratives outlined the inherent challenges of feeding an infant with special healthcare needs. The first theme 'Navigating Challenges and Managing Expectations' describes the distress participants experienced when they were unable to breastfeed and the negative emotional effect of switching to formula. The second theme 'Making Adaptations' outlines the methods participants tried, including breast pumps and feeding tubes. The third theme 'Accessing Support' describes participants' interactions with healthcare providers and challenges accessing feeding support. The final theme 'Growing from Adversity' recounts participants' relief once their child established a feeding pattern and the personal growth gained from their experiences.

Conclusions: Caregivers reported several feeding related challenges associated with CFM, many of which negatively affected their wellbeing. Negative consequences were particularly pronounced in cases where caregivers' feeding experiences differed from their expectations. Participants identified challenges in accessing reliable feeding information and support. Despite difficult experiences, caregivers cited some positive outcomes, including increased confidence and resilience.

Practice implications: Holistic feeding information and support for families affected by CFM should be inclusive of several feeding methods to improve care delivery, child health, and the caregiver experience.

Keywords: Breastfeeding; Craniofacial microsomia; Feeding; Rare condition.