Reflections on embedding patient and consumer involvement in the PaReNt project

Article type
Authors
Hunt H1, Whear R1, Boddy K1, Wakely L2, Bethel A1, Morris CM1, Abott R1, Thompson Coon J1
1NIHR CLAHRC South West Peninsula (PenCLAHRC), University of Exeter Medical School, St Luke’s Campus, Exeter EX1 1TE
2Manager of SNUG (Supporting Neonatal Users and Graduates) and Royal Devon & Exeter Hospital Volunteer, Royal Devon & Exeter Hospital, Barrack Road, Exeter, EX2 5DW
Abstract
Background:
Parents of babies admitted to neonatal units experience an emotional journey, and support from a parent peer with similar experiences may help. Researchers from the University of Exeter Medical School and Royal Devon and Exeter Foundation Trust, the Royal Cornwall Hospitals NHS Trust and local charity SNUG (Supporting Neonatal Users & Graduates) are conducting a systematic review and impact conference to explore these issues. This project has been coproduced with parents of babies with experience of neonatal care.

Objectives:
The aim of this abstract is to reflect upon the involvement of parents in the PaReNt project to date, highlight things we have learnt that might be useful for others, and consider opportunities for future research with embedded patient and public involvement.

Methods:
Parents with experience of babies in neonatal care have been involved within the PaReNt project as a co-investigator within the core project team and through our Parent Advisory Group (PAG). The PAG meets every three months to discuss progress and advise the research team. In between meetings the Group advises on specific questions or issues via a closed Facebook group.

Results:
So far PAG discussions have influenced outcome selection, search terms and other aspects of the final protocol; a plain language summary of the research; a plain language version of the research protocol; a telephone survey topic guide; and a project communication and dissemination plan.

Conclusions:
Public and patient involvement has substantially enriched the PaReNt research project. We reflect upon learning points from coproduction within the project so far, and present a parent perspective on being involved in this research.

Healthcare consumer involvement:
Within our core project team is an expert by experience. Our research is coproduced with an advisory group of parents with experience of babies in neonatal care. We will be holding an impact conference later in the year with the PAG, aimed at local and national neonatal staff and charities, to discuss findings, maximise impact on services and family outcomes, and guide future research in this area.