Women’s perinatal trajectories from high-risk pregnancy to the discharge of their premature infant from the NICU: A qualitative study

Technical Summary: Women's Perinatal Trajectories from High-Risk Pregnancy to NICU Discharge

Problem Statement
High-risk pregnancy and premature birth (PB) constitute complex perinatal conditions that impose sustained physical, psychological, and social consequences on women. While existing literature has examined discrete phases—such as the high-risk pregnancy period or Neonatal Intensive Care Unit (NICU) hospitalization—in isolation, there is a significant gap in understanding the full perinatal trajectory. Specifically, limited evidence captures how uncertainty is perceived, appraised, and managed across the continuum from preconception through post-NICU discharge. Current research often fails to account for the dynamic interactions between risk perception, emotional responses, relational burdens, and coping strategies over time, leaving a need for a theoretical framework to systematically explore these processes.

Methodology
This study employed a qualitative descriptive design using directed content analysis, guided by Mishel's Uncertainty in Illness Theory. The research was conducted in South Korea between August 2021 and January 2022.

• Participants: A total of 34 women were recruited via purposive and snowball sampling from online mothers' communities and researcher networks. Inclusion criteria required women to have experienced a PB risk before 37 weeks of gestation or to have delivered prematurely. Participants were fluent in Korean, resided in South Korea, and were aged 19 or older.
• Data Collection: Data were gathered through in-depth, semi-structured individual interviews (face-to-face, telephone, or Zoom) lasting 34–175 minutes, with follow-up interviews conducted as needed. Participants also completed online questionnaires regarding general characteristics.
• Analysis: Transcripts were analyzed using NVivo software. The analysis followed Hsieh and Shannon's directed content analysis approach, utilizing Mishel's theory as an a priori framework. Researchers independently coded meaningful statements, resolved discrepancies through consensus, and organized codes into categories and themes. Rigor was ensured through Lincoln and Guba's criteria (credibility, transferability, dependability, confirmability), including participant verification and multiple researcher involvement.

Key Results
The analysis identified 79 categories and 22 themes, revealing that women experience persistent and evolving uncertainty throughout the perinatal trajectory. The findings are structured around three interrelated domains derived from Mishel's theory:

1. Sources of Uncertainty (Stimuli Frame):

   • Ambiguous Symptoms: Women often struggled to interpret high-risk symptoms, sometimes masking them due to preconceptions or prioritizing fetal well-being over self-care.
   • Complex Systems: The high-risk pregnancy unit and NICU environments were described as unfamiliar, with complex treatment processes and unpredictable outcomes.
   • Information Deficits: There was a notable lack of clear information regarding diagnosis severity, treatment protocols, and post-discharge care, leading to distorted risk perception.

2. Cognitive Appraisal Processes:

   • Threat vs. Opportunity: Uncertainty was appraised as a danger (e.g., fear of fetal death, financial burden, guilt) or reinterpreted as an opportunity (e.g., acceptance of hospitalization as rest, belief in fetal resilience).
   • Maternal Identity as a Modifier: Maternal identity and attachment significantly shaped appraisal. Mothers often prioritized the infant's needs over their own recovery, leading to cognitive biases such as "downward social comparison" (finding solace in others' worse situations) or "cognitive neutralization" (underestimating risks to maintain optimism).
   • Guilt and Trauma: Many participants experienced profound guilt regarding their role in the PB and feelings of inadequacy in their maternal role, contributing to postpartum depressive moods and trauma.

3. Coping and Adaptation Strategies:

   • Behavioral Management: Strategies included proactive health behaviors (diet, rest, medication adherence), intensive information seeking, and active engagement in infant care (e.g., pumping breast milk, constant monitoring).
   • Emotional Regulation: Women utilized emotional release (crying, anger), prayer, and selective cognitive avoidance to manage distress.
   • Life Reorganization: Participants reconstructed their lives around the infant, often at the expense of their own physical recovery. While this led to personal growth and new life perspectives for some, it also resulted in "motherhood trauma" and delayed postpartum recovery for others.

Significance and Claims
The authors claim this study is the first to systematically identify the process of continuous uncertainty across the full trajectory from high-risk pregnancy to post-NICU discharge. By applying Mishel's Uncertainty in Illness Theory, the study elucidates how maternal attachment and identity interactively shape cognitive appraisal and coping mechanisms.

Key contributions include:

• Longitudinal Perspective: Moving beyond discrete clinical phases to demonstrate that uncertainty and distress are sustained and evolve over time.
• The Paradox of Maternal Love: The study highlights a paradoxical relationship where maternal love leads to prioritizing fetal well-being over self-care during pregnancy, and postpartum role commitment similarly displaces attention from maternal recovery, exacerbated by role-related guilt.
• Negative Maternal Identity: The research identifies the formation of a negative maternal identity characterized by guilt and trauma, a gap previously underrecognized in care for these women.

The authors conclude that nursing interventions must be longitudinal and continuity-based. They emphasize the need to support positive maternal identity formation and actively promote postpartum self-care to mitigate the psychological distress associated with high-risk pregnancy and PB. The study calls for anticipatory education on high-risk pregnancy and the development of cognitive and social support systems to reduce sustained uncertainty.