Global Survey on Newborns' HOspitalisation and Parental Experiences

Collaboration partners, expert working groups and their roles This project will be carried out in close collaboration with representatives of national parent organisations and professional healthcare societies. The following societies are involved as collaboration partners: ANA (African Neonatal Association), CNN (Canadian Neonatal Network), COINN (Council of International Neonatal Nurses), ESPR (European Society for Paediatric Research), NFI (NIDCAP Federation International), UENPS (Union of European Neonatal and Perinatal Societies), WHO Collaborating Centre for Maternal and Child Health. All collaboration partners delegate one representative that supports the Core Working Group (CWG).

The CWG, with n=27 members, and a Support Group (SG), with n=48 members, both consisting of individual multi-professional experts from all continents working in the field of maternal and newborn health, will be assembled. Both groups support the development of the questionnaire in a two-step approach, translations of the questionnaire, the recruitment of participants, data analysis, data interpretation, and publication and dissemination of results. While the CWG, will be actively involved in the initial development of the draft questionnaire, the SG will be involved for a broader review for the revision and final correction of the questionnaire in a second step.

Development of the Questionnaire For the purpose of the HOPE study, we performed a scoping review (1) to explore the available literature related to this topic and to identify the most relevant topics to be included in the questionnaire.

After this literature research, the questionnaire was drafted considering the already existing and validated EMPATHIC-N and the PICKER questionnaires (2,3), as well as the questionnaire, we previously developed to explore parents' experiences related to challenges during the COVID-19 pandemic regarding the care of their newborns (4,5). In addition, questions related to political, social and infrastructural framework conditions were included.

The online questionnaire includes single, multiple choice answer models and some open-text fields. Besides questions related to participant characteristics such as age, sex, country of location, infant birthweight, duration of hospitalisation, etc., the questionnaire includes questions related to the parents' perception of political, social and infrastructural framework conditions as experienced within their country as well as elements of neonatal care mainly involving aspects of IFCDC such as the use and support of breast/human milk and early breast feeding, skin-to-skin care (kangaroo-mother care), parental presence and involvement in the care, shared decision making, stress and pain control etc. during their hospital stay.