"The challenge of managing insecurities": Parents' experiences with the care for their child with congenital diaphragmatic hernia.
Violet Petit-Steeghs, Carina A C M Pittens, Magda J M Barnhoorn and 1 others
PMID 31025826WHAT IT FOUND
Parents of children with congenital diaphragmatic hernia said unclear updates, waiting times, transfers, and team disagreement caused distress.
They wanted predictable information, involvement in decisions, and help with long-term needs.
Key findings
01Parents said unclear information and inability to manage insecurity caused distress.
02Parents wanted more involvement in decisions about transfers, treatment options, and steps.
03Parents rated expertise at local hospitals and first-line care, especially for eating problems, as less valued.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study used digital recruitment and online focus groups, which may have selected for parents comfortable with online tools. Weblogs were public, so parents may have left out difficult experiences; some social network problems appeared only in focus groups. Online focus groups had limited interaction, and several probing questions were not answered, so it is unclear how widely some themes were shared. Mothers were overrepresented in the focus groups (30 mothers and 10 fathers). The study was done in the Netherlands and one Belgian expert centre, so findings may not apply elsewhere. It reports parents' experiences and wishes, not outcomes from a care intervention. The paper did not collect direct data from nurses or care providers about their own practice.
Declared interests
The authors declared no conflicts of interest.
The easy way to misread this
Do not read these recommendations as proof that timed updates or parent involvement reduce distress. The study reports parents' experiences and wishes, not a tested care intervention.