'They don't know what to do with our children': Experiences and views on feeding and swallowing from parents of children who use long-term ventilation.
Sabrena Lee, Jeanne Marshall, Michael Clarke and 1 others
PMID 38590229WHAT IT FOUND
Parents of children who use long-term ventilation said feeding problems disrupted family meals, outings and bonding.
They reported gaps in speech and language therapy, especially expertise in ventilation-related swallowing and clear plans after assessments.
Key findings
01Parents described feeding difficulties affecting family bonding, social participation, emotional stress and time/resources.
02The most frequently reported barriers were lack of speech and language therapy expertise in long-term ventilation and limited information from other health professionals.
03Five children had a videofluoroscopic swallow study; three parents reported adequate swallowing, but two children's oral feeding plans were not progressed.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The analysed sample was seven mothers, all White British, living in the UK, so it does not represent fathers or families from other backgrounds. Participants were recruited by convenience sampling and social media, which may favour families already connected to a charity or online groups. Interviews were conducted online, which may have excluded some families and made sensitive discussion harder in some settings. One recruited parent withdrew, and two participants requested further individual interviews, so the discussion may reflect those most willing to share.
Declared interests
The authors declared no potential conflicts of interest. The first author was funded by Health Education England and the National Institute for Health Research for a pre-doctoral clinical academic fellowship.
The easy way to misread this
Do not read this as evidence that any feeding or swallowing intervention works. It reports seven mothers' experiences and service gaps, not measured child outcomes.