'Not a goal, but a given': Neonatal care participation through parents' perspective, a cross-sectional study.

Abstract

To explore parents' perspectives regarding participation in neonatal care, with focus on the family integrated care (FICare) model utilised as a tool to enhance parent-infant closeness. Additionally, we describe experiences in different architectural settings. An online survey, categorised by four FICare pillars, was distributed through social media to parents of newborns hospitalised to Dutch neonatal wards between 2015 and 2020. Quantitative findings were summarised using descriptive statistics, while open-ended responses were thematically analysed. Among the 344 respondents (98% mothers), most reported feeling involved in care (315/340). However, 79% also felt separated from their infant (265/337). Irrespective of architectural settings, parents reported incomplete implementation of FICare pillars: 14% was invited to educational sessions (parent education), 51% discussed family-specific care plans (staff education), 21% was facilitated in connecting with veteran parents (psychosocial support) and 22% received couplet-care (environment). Although 65% of parents were invited to attend clinical rounds, 32% actively participated in decision making. Thematic analysis revealed fundamentals for feeling welcome on the ward, peer-to-peer support, psychosocial support and participation in clinical rounds. Overall, parents expressed satisfaction with participation in neonatal care. However, structural implementation of FICare lacks. Regardless of architecture, expanding parent participation beyond presence requires attention.