"Ringleader who has no power": a qualitative study of parent uncertainty during a NICU admission unrelated to...

Parents of preterm infants experience stress related to uncertainty which impacts parent health outcomes. Less is known about the experience of parents whose infants are admitted for reasons other than prematurity. In this study we sought to describe (1) the experience of parents whose infants are admitted to a level IV NICU for reasons unrelated to prematurity in relation to uncertainty and (2) the effect of social and structural determinants on parent experience with uncertainty.

This single center qualitative study utilized interviews, questionnaires, and chart review at 2 time points: 2 weeks after admission and 3 months after discharge. Parents enrolled in a prospective study of parent mental health related to infant medical complexity were purposively selected to achieve a sample representative of the study NICU. Interviews occurred between July 2019 - September 2020.

49 parents of 35 infants completed initial interviews and 26 completed follow up interviews. Parents experienced uncertainty related to diagnostic and prognostic trajectory as well as experiences prior to admission and NICU process of care. Themes included: (1) Parents of infants with medically complex presentations experience significant uncertainty. (2) Lived experience of structural vulnerability helped parents manage medical uncertainty. Some parents more readily accepted uncertainty due to prior experiences though often had fewer resources for managing needs after discharge. (3) Discrimination created mistrust preventing adaptation to uncertainty. (4) Provider counseling impacted parent adaptation. Counseling accounting for families lived experiences and focusing on practical aspects of a NICU admission such as team lead, how multidisciplinary teams arrive at decisions and steps to decrease uncertainty increased parent acceptance.

Parents of NICU infants admitted for reasons other than prematurity experience uncertainty related to both medical and non-medical events during their NICU stay. Communication that practically guides parents through NICU uncertainty, assesses structural vulnerability, and fosters trust in the medical system may help parents adapt to NICU uncertainty.