ORCID

Document Type

Article

Abstract

INTRODUCTION: Newborns who are born too soon, too small or sick are a vulnerable group who require special/high-dependency/intensive care after birth. Infant and Family-Centred Developmental Care (IFCDC) is an integrated healthcare approach that prioritises and values parental/familial involvement and participation by fostering competencies in essential newborn care skills and thus parental empowerment. There is a paucity of data globally on the IFCDC practice and the challenges faced by parents/caregivers during hospitalisation and post-discharge and the potential country-specific support.

OBJECTIVE: The primary objective of the HOPE study (Global Study on Newborn HOspitalization and Parental Experiences) is to assess parents'/caregivers' experiences, needs and concerns during newborn hospitalisation, barriers and facilitators in IFCDC practice and the extent of social and governmental support across multiple countries.

METHODS AND ANALYSIS: This study is an observational, cross-sectional, mixed-methods, multinational, multilingual online survey that will target parents/caregivers of infants requiring neonatal special/intensive care after birth who are born on/after 1 January 2023. The questionnaire will collect data on parents'/caregivers' experiences related to IFCDC practice, social and governmental barriers and facilitators. The questionnaire will be designed using qualitative interviews with parents, expert advice from >80 multiprofessional international experts and parent representatives and data from a pre-testing. In a two-stage approach beginning with high-priority, followed by lower-priority questions, the instrument will retrospectively collect self-reported data using single-answer, multiple-choice and open-ended questions. Quantitative data will be analysed descriptively and using subgroup comparisons and qualitative data will be examined using thematic content analysis. The survey access link will be distributed by the Global Foundation for the Care of Newborn Infants and the HOPE study network.

DISCUSSION: Results will provide information related to parents'/caregivers' experiences, the extent of IFCDC implementation, and social and governmental support measures worldwide. Country-specific analyses will enable between country comparisons, identify transferable care practices and recommendations for action.

TRIAL REGISTRATION NUMBER: NCT06827028.

Publication Date

2026-04-30

Publication Title

BMJ Paediatrics Open

Volume

10

Issue

1

Deposit Date

2026-09-22

Funding

The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors. We also would like to express our gratitude to our supporting organisations, the African Neonatal Association (ANA), the Canadian Neonatal Network (EPIQ-CNN), the Council of International Neonatal Nurses (COINN), the European Society for Paediatric Research (EAPS), the NIDCAP Federation International, the Union of European Neonatal and Perinatal Societies (UENPS), the WHO Collaborating Center for Maternal and Child Health Trieste Italy, as well as to all other members of the CWG and the SG who additionally support the HOPE Study namelyArimitsu, Takeshi, Department of Pediatrics, Keio University School of Medicine, Shinjuku, Tokyo, Japan; Bacchini, Fabiana, Canadian Premature Babies Foundation, Toronto, Ontario, Canada; Balyasna, Oleksandra, Early Birds Ukrainian Preemie Parent Association, Kyiv, Ukraine; Basso, Graciela, Department of Neonatology, Juan A. Fernández General Hospital, Buenos Aires, Argentina; Beltempo, Marc, Division of Neonatology, Department of Pediatrics, McGill University Health Center, Montreal, Quebec, Canada; Canadian Neonatal Network, Toronto, Canada; Bentoom, Selina, African Foundation for Premature Babies and Neonatal Care, Accra, Ghana; Berger, Angelika, Division of Neonatology, Pediatric Intensive Care and Neuropediatrics, Department of Pediatrics, Comprehensive Center for Pediatrics (CCP), Medical University of Vienna, Vienna, Austria; Bergmann, Nils, Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden; Bloch, Vilni Verner Holst, Prematurforeningen (Norwegian Premature Infants Association), Kongsvinger, Norway; Bolaños, Ilein, Con Amor Vencerás A.C., Mexico City, Mexico; Ceccatelli, Monica, VIVERE Onlus organization, Padua, Italy; Charpak, Nathalie, Kangaroo Foundation, Bogotá, Colombia; Clemente, Fatima, Department of Gynecology-Obstetrics and Pediatrics, Faculty of Medicine of Porto University (FMUP), Porto, Portugal; Neonatal Intensive Care Unit, Neonatology Department, CHUSJ, Porto, Portugal; São João Newborn Individualized Developmental Care and Assessment Program (NIDCAP) Training Center, CHUSJ, Porto, Portugal; Coutinho, Estela, Associação Portuguesa de Apoio ao Bebé Prematuro, Lisbon, Portugal; Croitoru Corina, Romanian Association of Long Hospitalised Newborns, Bucharest, Romania; Dietmar, Schlembach, Vivantes Klinikum Neukölln, Berlin, Germany; Dube, Queen, Department of Maternal, Newborn, Child, and Adolescent Health, and Ageing, World Health Organization, Geneva, Department of Pediatrics; Queen Elizabeth Central Hospital, Blantyre, Malawi; Ernst, Stephanie, TAPS Support Foundation, Almere, Netherlands; Gamulescu, Diana, Asociatia Prematurilor, Bucharest, Romania; Gaughwin, Kaori, Japanese Organization for NICU Families, Tokyo, Japan; Hediger, Dina, Organization Frühchen Schweiz, Bern, Switzerland; Jarir, Rawia Abu, Neonatal Intensive Care Unit Department, Hamad Medical Corporation, Doha, Qatar; Kateregga Bazilio, Preterm Infants Parents Network Uganda, Kampala, Uganda; Khan, Junaid, Neonatology, Sheikh Shakhbout Medical City, Abu Dhabi, United Arab Emirates; Khonyongwa-Fernandez, Gigi, Families Blossoming, The Health Foundation, London, UK; NICU Parent Network, Georgetown, USA; Lack, Nicholas, Sheffield Hallam University, Sheffield, UK; Lawn, Joy, Maternal, Adolescent, Reproductive & Child Health Centre and Department of Infectious Disease Epidemiology, London School of Hygiene & Tropical Medicine, London, UK; Mutema, Tendai, Faculty Member, Africa Newborn Network (ANN), Zimbabwe; Nimeri, Nuha, Department of Neonatology, Hamad Medical Corporation, Doha, Qatar; Radzevičienė, Asta, Neišnešiotukas Association, Vilnius, Lithuania; Rahmani, Aiman, Pediatrics and Neonatology, Tawam Hospital, Al Ain, United Arab Emirates; Reynaud, Audrey, Association SOS Préma, Neuilly sur Seine, France; Rusholme, Sarah, Little Miracles Trust, Wellington, New Zealand; Saad, Isam, Neonatology, University Hospital Sharjah, Sharjah, United Arab Emirates; Sauini, Gabrielle, Brazilian Parents of Preemies' Association, Porto Alegre, Brazil; Tasmin, Bota, Preemie Connect, Johannesburg, South Africa; Tchagbele, Ouro-Bagna, Faculty of Health Sciences, University of Kara, Kara, Togo; Van der Elst, Laetitia, Noah's Ark organization, Genval, Belgium; Yang, Jie, NHC Key Laboratory of Neonatal Diseases, Children’s Hospital of Fudan University, Shanghai, China; Zurebiani, Nino, Save the Tiny Life organization, Tbilisi, Georgia.

Keywords

Humans, Infant, Newborn, Parents/psychology, Cross-Sectional Studies, Hospitalization/statistics & numerical data, Surveys and Questionnaires, Research Design

Creative Commons License

Creative Commons Attribution-NonCommercial 4.0 International License
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License

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