Parents Are Willing to Support Future Studies: A Cross-Sectional Study on Involvement in Neonatal Research.

Abstract

Aim: The aim of the study was to explore the views of parents of preterm infants regarding their involvement in neonatal research for quality improvement.

Methods: This cross-sectional observational study included German-speaking parents of preterm infants who had previously participated in a web-based randomised controlled trial. The self-developed questionnaire included nine questions about parental involvement in neonatal research in four areas: research priorities, research tasks, availability of participants, and reimbursement of expenses. Data analysis was descriptive.

Results: In total, 187 parents participated. Suggestions for research priorities were primarily related to three areas: infant neurodevelopment, support for parents during their time in the neonatal unit, and parental mental health. In terms of research tasks, the most frequently mentioned were feedback on study material (n = 91, 48.7%) and support for data collection (n = 43, 23.0%). In total, 59 (31.6%) parents indicated their willingness to attend two meetings per year. With regard to reimbursement of expenses, 117 (62.6%) parents indicated that covering travel and parking costs was a priority.

Conclusion: Parents who have participated in clinical trials are a good source for patient and public involvement. They are willing to participate and have specific ideas about neonatal research with a focus on neurodevelopment.