505 - Embedding Parent Voices in Cerebral Palsy Research: The Establishment and Impact of a Parent Advisory Group

Publication Number: 1485.505

Mary Anne Ryan, INFANT Research Centre, Cork, Cork, Ireland; Geraldine Boylan, University College Cork, Cork, Cork, Ireland; Brian H. Walsh, INFANT Research Centre, Cork, Cork, Ireland; Deirdre M. Murray, University College Cork, Cork, Cork, Ireland

Background: Engaging families in research enhances its relevance, ethical integrity and real-world applicability. Within a national ELEVATE program for cerebral palsy (CP) research, early involvement of parents was identified as critical to ensuring studies are inclusive, impactful and aligned with family priorities. Lived experience offers unique insights that help bridge the gap between clinical aims and family needs, promoting outcomes that are both meaningful and actionable.

Objective: To embed a parent voice early in a national cerebral palsy research programme through the establishment of a Cerebral Palsy Parent Advisory Group (CP-PAG)
To assess the impact and contributions of the CP-PAG in its first two years of activity.

Design/Methods: Formation of a cerebral palsy parent advisory group (CP-PAG)
Parents of children with CP were invited to join the CP-PAG through social media and newsletters. Expressions of interest were received via email. Applicants received a copy of the terms of reference and required to complete a consent form and a questionnaire seeking demographic information and parent’s motivation for participation. Membership was limited to ten participants ensuring diversity in gender, ethnicity, geographical location, child’s age and level of disability. Meetings were held every 6-8 weeks during term time (1.5 hours), primarily via Mictosoft Teams, with one in-person meeting annually. Researchers seeking feedback on study protocols or materials were invited as guests.

Results: To date, parents have
Reviewed 18 research documents including study protocols, participant information sheets, and consent forms.
Provided structured feedback on study design, recruitment and ethics.
- Co-designed the first national information booklet for parents at the time of a CP diagnosis, tailored to the Irish context and distributed nationally.
Research Impact:
- Parent input directly informed revisions to study protocols, improving the clarity and family-centred design.
- Sustained engagement has been achieved, with all members active after two years. The visibility of family perspectives has been amplified in research forums and has influenced future research designs.

Conclusion(s): The CP-PAG demonstrates that structured, sustained parent involvement in early CP research is both feasible and transformative. Their engagement has enhanced the accessibility, ethical soundness and real-world relevance of research activities, while amplifying the parent voice in academic and clinical contexts. This model provides a replicable framework for inclusive, co-designed research across paediatric and neonatal disciplines.

Table 1: The Activity of the Cerebral Palsy Parent Advisory Group ( CP-PAG) to date
Table 1.pdf

Understanding Cerebral Palsy: A Guide for Parents and Carer's in Ireland
Figure 1.pdf