A study of the infant's lived experience of neonatal intensive care

Abstract

Background

Neonatal care is essential for survival. However, advancements in medical care may come at a cost to the infant's experience of living. Research has traditionally focused on the effectiveness of the medical aspects of neonatal intensive care. Less attention has been paid to the subjective experience of infants hospitalised in NICU.

Aim

To provide an infant-centred, rich understanding and comprehensive analysis of the lived experience of infants hospitalised in NICU.

Methods

To explore the infant experience, we designed a novel approach, termed 360-degree phenomenology. We utilised observational fieldnotes, bedside diaries, Newborn Behavioural Observation recording forms and verbatim transcripts from individual interviews. Thematic analysis was used to analyse these data sources.

Results

This paper uses the whole data set (comprising a series of 7 case studies) to describe 4 overarching themes: (1) scary and safe; (2) all these hard things; (3) an emotional challenge; and (4) moments of meeting.

Conclusion

Hospitalisation in the newborn period poses a significant challenge to the developing infant by virtue of the complex and confronting early life experiences they endure, both physically and emotionally. This research illuminates these challenges but also shows moments of powerful meeting and connection, that serve to protect and nurture the developing infant. By listening to and valuing the infant's unique perspective and placing the infant as a person central to their own care, our research highlights strategies for immediate actionable change and future areas of research to better their early life experiences and improve long-term health outcomes.