ArticleChild: care, health and development2026
Parent Partnership in Neonatal Research: Facilitators, Barriers and Contributions of the Irish PADDINGToN Parent Advisory Group.
Article in Child: care, health and development, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
introductionPatient and public involvement (PPI) is increasingly recognised as integral to high-quality neonatal research, yet practical guidance on its implementation remains limited. PURPOSE: The primary aim of this paper is to describe the establishment and operation of a Parent Advisory Group (PAG) embedded within a national neonatal medicines feasibility study, including facilitators and barriers for ongoing PPI involvement in research. The second aim is to describe how the group's involvement informed study design, recruitment and retention strategies to optimise the research study.
methodsA qualitative descriptive study was undertaken and reported in accordance with the GRIPP2 checklist. Parents with recent neonatal unit experience were recruited through national neonatal networks and institutional PPI platforms. Feedback from meeting transcripts, reflective notes and questionnaires was analysed using an inductive descriptive thematic approach.
resultsSeven parents contributed to study materials, recruitment strategies and interpretation of findings through group meetings and asynchronous feedback. Flexible engagement approaches supported participation, although sustaining involvement over time and managing the emotional impact of participation presented challenges.
conclusionStructured and flexible models of engagement, paired with appropriate supports, can support meaningful parental involvement in neonatal research. This study highlights how parental involvement can inform study design, recruitment and retention planning, and strategies for sustaining parent engagement.
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