The lived experiences of critically ill infants hospitalised in neonatal intensive care: A scoping review

Background: Neonatal intensive care saves lives, but the environment in which this occurs is complex and has been shown to negatively disrupt some aspects of an infant's early development. Identifying these negative effects has relied on measuring physiological and behavioural responses. Little research has sought to understand and learn from what an individual infant can communicate about their lived experience. Aim: To examine what is known of the lived experiences of infants hospitalised in neonatal intensive care. Study design: A scoping review using the revised Arksey and O'Malley framework was undertaken. Relevant studies, exploring an infant's experience of hospitalisation were identified through a comprehensive, systematic literature search. Results: 4955 articles were retrieved, 88 full texts reviewed, and 23 studies included. We identified no studies that assessed the experience from the infant's perspective. The infant experience was explored using quantitative methodology, characterising, and describing the experience in measurable physiological, behavioural, and neurodevelopmental terms or through the lens of medical outcomes. The environment is described as too loud and too bright and infants are exposed to high levels of medical handling, impacting on physiology, behaviour, sleep, feeding, and both shortand longer-term outcomes. Conclusion: The studies captured in this review focused on quantitative, measurable outcomes as a proxy for the experience as it might be felt, interpreted, and processed by an infant. Medical focus has been crucial to advance the field of neonatology, but the review highlights an important gap; the need to explore and better understand the infant's experience through their eyes.