Interventions to humanise and improve neonatal care from a family centred and family integrated care perspective are currently on the rise. However, as many of these studies are currently being conducted and planned, a core outcome set is lacking. Previous studies have defined outcomes in neonatal care (such as the COIN) project, neonatal palliative care and Preterm and hospitalised newborn health. However these COS seem to lack the fundamental outcomes of processes of care and/or parent engagement, and family outcomes such as parent-infant bonding that are potentially important in this field of research and to improve the quality of care we are currently providing. With this project, we would like to develop a COS for family interventions in the NICU, building upon previous work. We envision to establish a COS for future and planned studies with relevant outcomes for family interventions in the NICU.
ContributorsNicole van Veenendaal, MD, MPH, Emma Children's Hospital, Amsterdam UMC, and OLVG Hospital, Amsterdam, The Netherlands,
Liz McKechnie, Department of Neonatology, Leeds Teaching Hospitals, NHS Trust, United Kingdom
Linda Franck, School of Nursing, University of California San Francisco, San Francisco, California, United States of America,
Karel O'Brien, Department of Pediatrics, Mount Sinai Hospital, Toronto, Ontario, Canada.
International Steering Committee on Family Integrated Care
Disease Category: Child health, Neonatal care
Disease Name:
Age Range: 0 - 0
Sex: Either
Nature of Intervention: Management of care
- Clinical experts
- Conference participants
- Consumers (caregivers)
- Consumers (patients)
- Epidemiologists
- Families
- Methodologists
- Patient/ support group representatives
- Policy makers
- Researchers
- COS for clinical trials or clinical research
- COS for practice
- Delphi process
- Literature review
- Survey
- Systematic review
- Consensus meeting
We will build a study team consisting of all stakeholders relevant to the project. We will then perform a systematic review of outcome measures already in use and build upon work that has been previously conducted on COS on newborn and preterm health. Following this, we will conduct an international Delphi process (including all relevant stakeholder groups). We expect to have 3 rounds before reaching consensus. We will then hold a consensus meeting (with options to participate online / in person) to determine the final outcomes in the COS.