Discrepancy between the needs of parents of preterm infants in the NICU and nurses’ perceptions of those needs: a cross-sectional study

Technical Summary: Discrepancy between the needs of parents of preterm infants in the NICU and nurses' perceptions of those needs

Problem Statement
Despite advancements in medical technology improving the survival rates of critically ill preterm infants, the Neonatal Intensive Care Unit (NICU) environment presents significant challenges for families, including prolonged hospital stays, high costs, and emotional distress. Previous research indicates that clinicians often neglect communication with families, leading to ineffective interactions and adversarial dynamics. While communication failures are recognized as a modifiable risk factor in pediatric intensive care, most existing literature focuses on adult ICU populations or general family needs, with insufficient attention paid to the specific needs of parents of preterm infants in the NICU. Furthermore, clinical practice often reveals a gap where healthcare providers fail to accurately identify the genuine needs of patients' families, potentially compromising care quality and the nurse-family relationship. This study addresses the lack of data regarding the specific discrepancies between the actual needs of parents of preterm infants and the nurses' perceptions of those needs within the Chinese context.

Methodology
This single-center, cross-sectional study was conducted between June and October 2023 at a tertiary Grade A hospital in Hangzhou, Zhejiang Province, China. The study utilized a convenience sampling method to recruit two distinct groups:

1. Parents: 92 parents of preterm infants (gestational age < 37 weeks) admitted to the NICU within 24 hours. Inclusion criteria required parents to be at least 18 years old, conscious, and without communication disorders. Exclusion criteria included a history of mental illness or cognitive impairment.
2. Nurses: 71 registered nurses working in the NICU. Inclusion criteria required at least one year of experience as a responsible nurse for preterm infants. Exclusion criteria included trainees or nurses on leave.

The primary instrument used was the Chinese version of the Neonatal Intensive Care Unit Family Needs Inventory (NICU-FNI), a 40-item scale adapted from the Critical Care Family Needs Inventory. The scale measures needs across five domains: Support, Comfort, Information, Proximity, and Assurance. Responses were recorded on a 5-point Likert scale (1 = extremely unimportant to 5 = extremely important). Data collection involved in-person distribution of questionnaires to parents within 24 hours of admission and on-site completion by nurses. Statistical analysis was performed using SPSS version 26, employing descriptive statistics and t-tests to compare total and dimension scores between the two groups.

Key Results
The study identified statistically significant discrepancies between the actual needs reported by parents and the needs perceived by nurses (P < 0.01).

• Total and Dimension Scores: Parents reported significantly higher total needs scores (134.87 ± 16.93) compared to nurses' perceived scores (121.37 ± 19.55). Significant differences were found in the Assurance, Information, and Proximity dimensions (P < 0.001), while Support and Comfort dimensions showed no statistical difference between the groups.
• Ranking of Needs: Both groups ranked the five dimensions in the same order of importance: Support Needs > Assurance Needs > Information Needs > Proximity Needs > Comfort Needs.
• Specific Item Discrepancies:
  • Highest Rated Need: Parents rated "To be assured that the best care possible is being given to my infant" as the most important need (Mean score: 3.98). Nurses perceived the highest need as "To know how my infant is being treated medically" (Mean score: 3.69).
  • Top 10 Alignment: Nine of the top 10 items were consistent between both groups. However, parents placed higher value on "To be assured that the best care possible is being given to my infant even during the recovery period," whereas nurses prioritized "To have the explanations from the healthcare staff be clear and easy to understand."
  • Lowest Rated Needs: Parents rated "To have a place to be alone while in the hospital" as the least important. Nurses perceived "To be allowed to have my infant's siblings visit" as the least important.
  • Divergent Priorities: Parents considered participation in care planning and dedicated waiting rooms relatively unimportant, while nurses viewed daily communication with doctors and frequent visitation rights as less critical.

Key Contributions
This study provides empirical evidence of the misalignment between the perceived and actual needs of families in a Chinese NICU setting. By utilizing the validated NICU-FNI scale, the research quantifies the extent to which nurses underestimate the needs of parents, particularly regarding assurance, information, and proximity. The study highlights that while the general hierarchy of needs is understood by nurses, the specific intensity and focus of those needs differ significantly. The findings serve as a baseline for understanding the "perception gap" in family-centered care within the specific cultural and clinical context of China.

Significance and Claims
The authors claim that the existence of these discrepancies necessitates a shift in clinical nursing practice. The study argues that to improve alignment and enhance the quality of care, NICU nurses must implement targeted family-centered care interventions based on the genuine needs of parents rather than relying solely on their own perceptions. The paper suggests that nursing education and training should be strengthened to include humanized care, helping nurses better identify and address the emotional and informational needs of families. Ultimately, the study posits that bridging this gap is essential for promoting harmonious nurse-family relationships, reducing potential conflicts, and ensuring the effective implementation of family-centered care in NICU management. The authors conclude that meeting these needs is fundamental to improving nursing quality and recognizing the broader responsibilities of nurses in the care of critically ill infants.