Parent partnership in neonatal research: facilitators, barriers and contributions of the Irish PADDINGToN Parent Advisory Group:Parent partnership in neonatal research

Résumé fourni par la source

Introduction Patient 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 optimize the research study. Methods A 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. Results Seven 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. Conclusion Structured 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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