"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 and 4 others
PMID 38729894WHAT IT FOUND
Caregivers of infants with craniofacial microsomia described breastfeeding attempts as distressing due to poor latch and weight loss, often feeling judged by providers.
Many switched to formula or tube feeding with guilt, citing unmet needs for practical support, clear information, and emotional validation.
Key findings
01All participants initially attempted breastfeeding, but most faced significant difficulties with latch and infant weight loss, leading to emotional distress and feelings of failure.
02Caregivers reported a lack of timely information and support regarding feeding options, which led some to seek advice online or act against medical advice.
03Tube feeding was described as demanding, requiring caregivers to learn new skills and manage significant financial and social burdens.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPsWhat it means for RNs
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What it does not show
The sample was primarily White, non-Hispanic, and higher socioeconomic status, which may not reflect the experiences of all families. Fathers were significantly underrepresented. Data was collected retrospectively from caregivers of children aged 3 to 17, introducing potential recall bias. The narrative method did not specifically prompt for feeding issues, so some families' challenges may not have been reported.
Declared interests
The authors declared no known conflicts of interest.
The easy way to misread this
Do not interpret these narratives as evidence that specific feeding interventions are effective. The study describes caregiver experiences and perceptions of care, not clinical outcomes or the efficacy of the treatments they received.