Neonatal research: A reflection on the impact of patient and public involvement (PPI) on the Neo-SILT study

Abstract

Integrating parental input into neonatal research development is crucial for producing ethically sound, practi cally applicable, studies with real-world context based on lived experiences. Parents, as primary caregivers, offer invaluable insights into the daily realities and emotional aspects of neonatal care that healthcare professionals may overlook. Their lived experiences can highlight subtle, yet significant, impacts of medical conditions and treatments on their children, thereby enriching the research with a deeper understanding of infant’s needs. Parental involvement ensures that research questions and outcomes are aligned with family priorities, enhancing the relevance and applicability of the studies. Moreover, the ethical design of studies benefits greatly from parental input, as it grounds the research in the lived experiences of those most affected, fostering greater empathy and sensitivity. This approach also helps build trust between researchers and the study participants, which is essential for improving recruitment and retention rates. The Neo-SILT study demonstrated this by significantly revising its Post Traumatic Stress Disorder (PTSD) measurement timelines, shaping the research question, adjusting the methodology and highlighting potential barriers and facilitators to participation based on parental feedback, ensuring a more accurate depiction of symptom onset and trajectory. Additionally, the co design of recruitment materials and parent information leaflets resulted in resources that were not only infor mative but also emotionally mindful and visually appealing, further facilitating parental engagement. Reflective practice has provided the nurse researcher with the framework to share the value and importance of integrating parental perspectives into neonatal research that can address potential oversights and biases, ensuring that studies are scientifically rigorous, ethically sound, and practically relevant.