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Understanding the lived NICU experience through narrative diaries: a qualitative study of parents' and healthcare
Gabriele Sorrentino1, Kiara Ros Thekkan2, Catia Genna2
1La Fondazione IRCCS Ca' Granda, Italy.
Aim:
To describe and categorize the thematic content emerging from narrative diaries in Neonatal Intensive Care Unit (NICU) written by parents and healthcare providers.
Methods:
A qualitative study of NICU diary writings, provided for a feasibility study, was conducted at a tertiary-care hospital in Central Italy. Parents of neonates admitted to a 22-bed NICU, who underwent intubation and sedation for at least 48 h, were enrolled. Parents, relatives, visitors, and healthcare professionals were invited to write about their experiences, emotions, reflections, along with drawings, or photographs in the NICU narrative diary during the hospitalization. Narrative data were analyzed using thematic analysis following Braun and Clarke's approach.
Findings:
Twenty-one NICU narrative diaries were collected between January 2024 and January 2025. Each diary contained a median of 22 entries (IQR = 12-28), and the majority of which were written by mothers (91%). Thematic analysis of diaries revealed 15 subthemes, which were then categorized into three overarching themes: 1) the NICU journey, reporting the newborn's clinical course and development, the first-time experience, the NICU environment, and parents' involvement in care; 2) parenthood, encompassing emotions, parental identity, bonding and separation, partner mutual support, and relationships with siblings; and 3) resilience and coping, highlighting narratives of communicating with the newborn, gratitude, support from relatives and peers, spirituality and the role of the narrative diary.
Conclusions:
NICU narrative diaries provide valuable insight into the clinical, emotional, and relational dimensions of the NICU experience. Clear communication, recognition of meaningful moments, and structured opportunities for parental participation and narrative expression may foster bonding, resilience, and overall quality of care.
Implications For Clinical Practice:
NICU narrative diaries promote a more humane and participatory care environment by supporting parental involvement, caregiver emotional well-being, and a relationship-oriented care culture.
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