Parent Partnership in Neonatal Research: Facilitators, Barriers and Contributions of the Irish PADDINGToN Parent Advisory Group.
S Giva, B Cleary, M Daly and 8 others
PMID 42713804WHAT IT FOUND
Seven parents who advised a neonatal medicine-information study said flexible, offline feedback, clear communication, and advance materials kept them engaged.
Their input simplified documents, improved inclusive wording, and informed recruitment and retention plans.
Key findings
01Clear communication, flexible participation, offline contribution, and advance materials helped parents stay involved despite other commitments.
02Parent feedback helped simplify study documents and make wording more inclusive, including birth parent and non-birth parent terms.
03Some recruitment ideas, such as champion nurses, were not implemented because of time constraints and staff shortages.
STILL TO COME
How it was doneWhat they found
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What it does not show
Only seven parents were involved, so the themes may not reflect the wider diversity of neonatal parent experiences in Ireland. All members were English-speaking mothers or birthing parents, so families with limited English or other family structures were not represented. The group was embedded in one feasibility study, so the findings may not transfer to other neonatal research settings. The study describes advisory group processes and perceived contributions, not patient or parent outcomes from the neonatal medicine-information resources. Some recommendations were not implemented in this phase, so their practical effect was not shown.
Declared interests
Partly funded by Royal College of Surgeons in Ireland seed funding, including grant codes 23569A01 and 20317A04. The authors declare no conflicts of interest.