Experiences of parents with very premature-born children at risk of neurodevelopmental disorders: A qualitative study.
Carmen Ropero-Padilla, Miguel Rodriguez-Arrastia, José Enrique Bernabé-Zuñiga and 3 others
PMID 39385349WHAT IT FOUND
Parents of babies born very or extremely prematurely described not being told what to expect, lacking emotional support, and having to chase early-care referrals.
These gaps left families feeling stressed and unsupported.
Key findings
01Parents said they were not told what to expect about prematurity, NICU admission, or early-care follow-up.
02Parents described missing psychological and emotional support in hospital and after discharge, and often relied on parents' associations, other families, or their own research.
03Parents reported privacy problems and difficulty getting children referred to early care, sometimes having to ask for the referral themselves.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was recruited by convenience sampling from one parents' association, so it may not represent parents who did not join an association. Most participants were mothers (19 of 21), so fathers' experiences were limited. The study reports parents' perceptions, not effects of any care model or referral pathway.
The easy way to misread this
Do not treat these themes as evidence that structured information, emotional support, or early-care referral improves neurodevelopmental outcomes. The study interviewed 21 parents, mostly mothers, and reports perceptions only.