Global Study on Newborn HOspitalization and Parental Experiences (HOPE): rationale and design of a multinational cross-sectional mixed-methods online survey

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.