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Parents Are Willing to Support Future Studies: A Cross-Sectional Study on Involvement in Neonatal Research
Christine Arnold1, Dina Hediger2, Julian Eychmüller1
1Division of Neonatology, Department of Paediatrics, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
Insights
Parents of preterm infants want to be involved in neonatal research, prioritizing infant neurodevelopment and parental support. They are willing to participate and offer valuable insights for quality improvement.
Area of Science:
- Neonatal care
- Clinical research
- Patient and public involvement
Background:
- Parental involvement in neonatal research is crucial for quality improvement.
- Understanding parental perspectives can enhance research design and participation.
Purpose of the Study:
- To explore parental views on involvement in neonatal research.
- To identify parental priorities for research areas and tasks.
- To assess parental willingness to participate and their needs regarding reimbursement.
Main Methods:
- Cross-sectional observational study of German-speaking parents of preterm infants.
- Utilized a self-developed questionnaire with nine questions.
- Descriptive data analysis of responses.
Main Results:
- 187 parents participated, with key research priorities including infant neurodevelopment, parental support, and mental health.
- Parents frequently suggested providing feedback on study materials and assisting with data collection.
- A significant portion expressed willingness to attend meetings and prioritized reimbursement for travel and parking expenses.
Conclusions:
- Parents who have participated in clinical trials are valuable partners for patient and public involvement in neonatal research.
- Parents are willing to engage and have specific ideas, particularly concerning infant neurodevelopment.
- Their input can significantly contribute to enhancing the quality and relevance of neonatal research.
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.
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01:50Cross-Sectional Research
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