Peer-reviewed article
Parent Partnership in Neonatal Research: Facilitators, Barriers and Contributions of the Irish PADDINGToN Parent Advisory Group.
Giva S, Cleary B, Daly M, Bracken L, Bradley P et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study describes how a Parent Advisory Group was set up to involve parents in a neonatal research study in Ireland. Seven parents contributed to research materials, recruitment strategies and interpretation of findings through meetings and feedback. The study found that flexible engagement approaches and appropriate support helped parents participate meaningfully, though sustaining involvement over time and managing emotional impact were challenges. The research shows how parent involvement can improve study design and recruitment planning.
Key points
- Seven parents contributed to study materials, recruitment strategies and interpretation of findings
- Flexible engagement approaches supported meaningful parental participation
- Sustaining involvement over time presented a significant challenge
- Managing the emotional impact of participation was difficult for parents
- Parental involvement informed study design, recruitment and retention planning
Limitations
This is a descriptive qualitative study of a single Parent Advisory Group in Ireland, so findings may not generalise to other settings or countries. The document does not measure whether parental involvement actually led to improved research outcomes or child health benefits.
Abstract
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 optimise 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.