Patient diaries and parental involvement in neonatal intensive care

Abstract

Background: Parental involvement in neonatal care is vital for infant and family outcomes; yet, in high-acuity Neonatal Paediatric Intensive Care Unit settings, parents often feel distressed and disconnected. The Neonatal Intensive Care Unit journal, a structured patient diary, may help bridge this gap by supporting communication, emotional expression, and engagement with healthcare staff. Although aligned with Family-Centred Care (FCC) principles, its use remains inconsistent and under-researched, particularly within the Maltese healthcare context. Aim: This study aimed to evaluate the impact of patient diaries on parental involvement, emotional well-being, and communication within the NPICU. Methods: The study was embedded within a Quality Improvement (QI) framework using the Plan-Do-Study-Act (PDSA) cycle to guide the journal’s co-design, implementation, and evaluation. NPICU nurses, midwives, and doctors received in-service training focused on the purpose, implementation, and communication strategies related to the NICU journal. Ethical approval was secured prior to data collection. Quantitative data from structured questionnaires assessed the NICU journal’s usability and its perceived impact on parental engagement, communication, and emotional support from the perspective of these trained healthcare professionals. Chi-squared and descriptive statistics analysed survey data. Qualitative insights from open-ended questionnaire responses were analysed utilising conventional content analysis and interviews conducted with parents of NPICU care recipients who were provided with a patient diary were thematically analysed. Results: Findings showed that NICU journals were perceived to significantly enhance parental involvement by offering a structured way for families to engage in their infant’s care. Parents viewed the journal as a bridge to healthcare staff, reducing anxiety and building trust. Themes of emotional empowerment, shared caregiving, and narrative connection emerged. Nurses especially recognised its value in supporting Family-Centred Care (FCC), though barriers like time constraints and unclear responsibilities were noted. Quantitative data confirmed significant role-based differences in perceived journal usefulness. Conclusion: NICU journals are a low-cost tool that enhances family-centred care by improving parental involvement and communication. This study supports integrating journals into routine practice through staff training, standardised protocols, and designated champions. Management should allocate resources and develop guidelines. Future research should explore long-term outcomes, digital formats, and diverse parental experiences.