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Identifying research priorities in newborn medicine: a Delphi study of parents' views
Abbey L Eeles1,2,3,4, Alice C Burnett5,2,6,7, Jeanie Ly Cheong5,8,9
1Clinical Sciences Theme, Murdoch Childrens Research Institute, Parkville, Victoria, Australia abbey.eeles@mcri.edu.au.
Insights
Parents want research focused on neonatal care, family well-being, and long-term child development. Their priorities include parental mental health support and better communication with clinical staff.
Area of Science:
- Neonatal Medicine
- Pediatric Health
- Family-Centered Care
Background:
- Neonatal conditions significantly impact child and family well-being long-term.
- Historically, parents and patients lacked input in shaping neonatal research agendas.
- This study addresses the need for patient-centered research priorities.
Purpose of the Study:
- To identify consensus research priorities among parents and patients with experience in newborn medicine in Australia and New Zealand.
- To ensure research aligns with the lived experiences and needs of families affected by neonatal care.
- To guide future research directions in neonatal medicine.
Main Methods:
- An online Delphi study was conducted with parents/patients experienced in neonatal care.
- Participants identified challenges across four life epochs: neonatal admission, early childhood, childhood/adolescence, and adulthood.
- Inductive thematic analysis generated and prioritized research questions.
Main Results:
- Numerous high-priority research questions emerged across the lifespan.
- Key areas include supporting parental mental health and parent-neonatal staff relationships.
- Priorities also encompass bonding, parent-child relationships, medical care improvements, and long-term child health outcomes.
Conclusions:
- Parents/patients have clear, consistent research priorities in newborn medicine.
- These priorities span care practices, family impacts, and child development.
- Findings should direct future neonatal research and improve evidence translation to families.
Objective:
Neonatal conditions can have lifelong implications for the health and well-being of children and families. Traditionally, parents and patients have not been included in shaping the agenda for research and yet they are profoundly affected by the neonatal experience and its consequences. This study aimed to identify consensus research priorities among parents/patients of newborn medicine in Australia and New Zealand.
Design:
Parents/patients with experience of neonatal care in Australia and New Zealand completed an online Delphi study to identify research priorities across four epochs (neonatal admission, early childhood, childhood/adolescence and adulthood). Parents/patients first generated key challenges in each of these epochs. Through inductive thematic analysis, recurring topics were identified and research questions generated. Parents/patients rated these questions in terms of priorities and a list of questions consistently rated as high priority was identified.
Participants:
393 individuals participated, 388 parents whose children had received neonatal care and 5 adults who had received neonatal care themselves.
Results:
Many research questions were identified as high-priority across the lifespan. These included how to best support parental mental health, relationships between parents and neonatal clinical staff (including involvement in care and communication), bonding and the parent-child relationship, improving neonatal medical care and addressing long-term impacts on child health and neurodevelopment.
Conclusions:
Parents with experience of newborn medicine have strong, clear and recurring research priorities spanning neonatal care practices, psychological and other impacts on families, and impacts on child development. These findings should guide neonatal research efforts. In addition to generating new knowledge, improved translation of existing evidence to parents is also needed.
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