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

Project overview

The aim of the COUSIN study is to identify and establish an internationally endorsed Core Outcome Set for family-centred care practices in neonatal care. The Core Outcome Set which will include a set of recommended outcome measures shall advance research in the field and optimise clinical practice. Through active engagement of all relevant stakeholders, including parents and former patients, as well as healthcare professionals, the inclusive nature of the proposed work will help ensure uptake of the Core Outcome Set and implementation of family-centred care practices in neonatal intensive care.


In the proposed study we will draw on the expertise of parents, families, former preterm children and health care providers with neonatal intensive care experiences as well as clinicians, researchers, and decision-makers in neonatal care to:

  • Identify outcomes reported in studies that evaluate family-centred models of care in neonatology
  • Identify principles of family-centred models of care to generate a generally accepted definition of parent-engaged care
  • To define a core outcome set for studies evaluating family-centred models of care in neonatology
  • Identify instruments of the core outcome set that are used in studies evaluating family-centred models of care in neonatology and define the validity and reliability of these instruments
  • Reach consensus on the final list of core outcomes and outcome measures for studies evaluating family-centred models of care in neonatology

The study proposal is registered in the Comet database.

A systematic review

As a first step, a systematic review is being conducted to identify outcomes reported in studies evaluating family-centred models of care in neonatology. This review will include studies of quantitative, qualitative and mixed methods designs.

A review protocol has been submitted to the PROSPERO repository.

Project core group

Project lead: Prof. Jos M. Latour, School of Nursing and Midwifery, University of Plymouth, United Kingdom


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. Johanna Kostenzer, Scientific Affairs Department, European Foundation for the Care of Newborn Infants (EFCNI), Germany
  • Associate Professor Agnes van den Hoogen, University Medical Centre of 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
  • Naomi Meesters (PhD Candidate), Erasmus MC – Sophia Children’s Hospital, The Netherlands
  • Mary Anne Ryan (PhD Candidate), INFANT, University College Cork, Ireland


The project is supported by the European Society of Pediatric Research.