COUSIN study: developing a Core OUtcome Set and outcome measures of family-centred care In Neonatal care

The COUSIN study aims to develop an internationally endorsed Core Outcome Set (COS) for evaluating family-centered care practices in neonatal care. This Core Outcome Set will include a standardized group of recommended outcome measures designed to advance research and optimize clinical practice in neonatal intensive care units (NICUs).

By actively engaging a diverse group of stakeholders - including parents, former patients, healthcare professionals, researchers, and decision-makers - the study ensures that the final outcomes reflect real-world priorities. This inclusive, collaborative approach will support the broader adoption and implementation of family-centered care across NICUs worldwide.

Aims and Objectives

The COUSIN study brings together the expertise of parents, families, former preterm infants, healthcare providers, clinicians, and researchers to:

Identify and analyze outcomes reported in studies evaluating family-centered care models in neonatology
Define the core principles of parent-engaged care to support a commonly accepted definition
Develop a Core Outcome Set for use in studies of family-centered neonatal care
Review and evaluate the tools and instruments used to measure outcomes, assessing their validity and reliability
Reach a consensus on a final list of core outcomes and outcome measures for studies in this field

The study protocol is registered in the COMET (Core Outcome Measures in Effectiveness Trials) database, ensuring transparency and alignment with global standards for outcome development.

Systematic Review

As the first phase of the COUSIN study, the team is conducting a systematic review to identify outcomes reported in studies that evaluate family-centered care models in neonatology. This review includes studies using quantitative, qualitative, and mixed-methods designs, ensuring a comprehensive overview of the current evidence base.

The review protocol has been submitted to the PROSPERO international prospective register of systematic reviews.

Project Leadership and Contributors

Project Lead

Professor Jos M. Latour
School of Nursing and Midwifery
University of Plymouth, United Kingdom
Email: jos.latour(at)plymouth.ac.uk

Project Contributors

Associate Professor Anna Axelin, Department of Nursing Science, University of Turku, Finland
Professor Marsha Campbell-Yeo, School of Nursing, Faculty of Health, Dalhousie University, Halifax, Nova Scotia, Canada
Dr. Isabel Geiger, Scientific Affairs Department, Global Foundation for the Care of Newborn Infants (GFCNI), Germany
Cansel Kocakabak (PhD Candidate), School of Nursing and Midwifery, University of Plymouth, United Kingdom
Dr. Johanna Kostenzer, Scientific Affairs Department, Global Foundation for the Care of Newborn Infants (GFCNI), Germany
Associate Professor Agnes van den Hoogen, University Medical Center Utrecht (UMCU) – Wilhelmina Children’s Hospital, The Netherlands

Additional Partners

Assistant Professor Esra Ardahan Akgül, Department of Pediatric Nursing, Faculty of Health Sciences, İzmir Katip Çelebi University, Turkey
Dr. Katie Gallagher, UCL EGA Institute for Women’s Health, United Kingdom
Dr. Naomi Meesters, Erasmus MC – Sophia Children’s Hospital, The Netherlands
Mary Anne Ryan (PhD Candidate), INFANT, University College Cork, Ireland