For parents of preterm infants in the NICU, intense health uncertainty and a profound lack of confidence in caregiving represent major sources of anxiety and fear as they prepare for their child’s discharge from the hospital. First, health uncertainty persists as a significant concern (19, 22, 23, 27). Even when discharge criteria are met, the fragile vital signs of preterm infants, potential risk of complications, and unpredictable long-term developmental outcomes contribute to parental anxiety regarding future outcomes. Parents express concern about whether their child will remain stable after transitioning from specialized care. This prognostic uncertainty perpetuates deep-seated fears.

Second, a substantial lack of confidence in caregiving exacerbates this anxiety (18, 22, 23, 28), as parents often feel inadequately prepared to manage a preterm infant requiring specialized care. Even with prior parenting experience, they may lack the necessary knowledge and skills for delicate feeding, vital sign monitoring, recognizing abnormalities, managing oxygen-dependent discharge, or providing rehabilitation stimulation for fragile preterm infants. This self-doubt regarding their caregiving competence manifests as fear of independent care—specifically, concerns that their child’s health may be compromised due to parental oversight or error—along with feelings of helplessness in emergency situations.

The intersection of profound concern about their child’s uncertain health outcomes and limited confidence in their own caregiving abilities constitutes the primary source of anxiety and fear for NICU parents preparing for discharge. For example:

Following hospital discharge, parents of preterm infants face substantial challenges in role reconstruction. First, discrepancies frequently arise between parents and elders regarding specialized care concepts and methods for fragile preterm infants (22). The absence of standardized care protocols leads to disputes and recurrent conflicts over parenting practices, thereby exacerbating parental anxiety.

Second, parents often experience an inequitable division of labor and communication breakdowns due to work demands, emotional stress, or differences in caregiving competencies (18, 19, 27, 29). Typically, one parent (most often the mother) assumes an excessive caregiving burden, resulting in physical and psychological exhaustion, while the other parent may experience frustration and detachment due to an inability to contribute meaningfully or provide sufficient support. The lack of structured caregiver collaboration further undermines the foundation for cooperative coping.

Finally, persistent financial pressures impose a significant burden on parental role adaptation (19). High medical expenses, specialized formula costs, rehabilitation fees, and potential reductions in household income compel parents to endure considerable stress in financial decision-making, which may trigger conflicts regarding resource allocation and career adjustments. In some cases, this financial strain necessitates extended work hours for one parent (typically the father) to maintain household solvency, further restricting their availability for childcare and family collaboration, thereby perpetuating a detrimental cycle. For example:

The lack of experience-sharing channels presents challenges for parents of preterm infants in obtaining targeted guidance (24, 29). Conventional parenting methods often prove inadequate for the specialized care required by fragile preterm infants (e.g., feeding difficulties, respiratory monitoring, and interventions for developmental delays). These parents seek to exchange practical advice, coping strategies, and resource information with others who have faced similar circumstances to alleviate the substantial anxiety caused by uncertainty. They also aim to prevent recurring challenges resulting from isolation and insufficient information.

Additionally, parents of preterm infants experience unresolved concerns regarding their infants’ health, frustration in the caregiving process, and complex emotions (e.g., guilt, anger, sadness) that others may struggle to comprehend. However, they frequently suppress these feelings due to fear of judgment or imposing burdens on others. Their opportunities for emotional release are severely restricted (24, 29), lacking both a safe space to confide in peers and access to professional emotional counseling. These unaddressed negative emotions accumulate, exacerbating parental psychological distress (e.g., increased risk of depression) and impairing caregiving capacity and family dynamics, perpetuating a harmful emotional cycle. Their heightened sensitivity to negative evaluations further discourages them from seeking external support, often leaving them in profound emotional isolation. Consequently, they urgently require effective peer and emotional support. For example:

Parents of fragile preterm infants require precise and actionable medical guidance following hospital discharge to address their primary concerns and enhance caregiving confidence. Due to preterm infants’ underdeveloped sucking ability, limited gastric capacity, and susceptibility to regurgitation or feeding refusal, parents often lack clear instructions regarding feeding volume, frequency, positioning (particularly during transitions between breastmilk and specialized formulas), and emergency responses to choking (19, 21, 23, 24, 29). This uncertainty contributes to apprehension during feeding, exacerbated sleep deprivation due to frequent nighttime feedings, and self-blame and anxiety stemming from feeding difficulties and associated psychological stress.

Additionally, parents lack sufficient knowledge to monitor preterm infants’ vital signs (20–22), making it difficult to accurately identify critical indicators such as apnea, cyanosis, abnormal body temperature, or signs of infection. They may respond with excessive anxiety to minor infant changes or delays in addressing them, resulting in persistent distress and a heightened sense of helplessness regarding perceived instability.

Furthermore, the absence of standardized developmental assessment criteria intensifies parental concerns (19, 22, 28). Parents urgently need information on appropriate developmental milestones for preterm infants at corrected age, early intervention indicators, and long-term prognosis. However, the inapplicability of typical parenting benchmarks heightens their focus on their infants’ developmental progress. Any indication of delay may trigger profound concern regarding growth, development, and prognosis, or even unnecessary self-doubt or external pressure due to misinterpretation. Without this essential medical knowledge, parental fears and anxieties remain unresolved, significantly increasing the caregiving burden. For example:

With the imminent discharge of preterm infants from hospitals, the urgent need for parents to master essential care skills significantly exceeds that of parents of full-term newborns. This necessity is directly linked to their primary concerns regarding “helplessness in abnormal situations” and “the unstable condition of preterm infants.” First, inadequate foundational care skills exacerbate daily stress (20, 22, 23). Parents must repeatedly practice basic procedures—such as safe holding, umbilical cord disinfection, skin care (particularly to prevent damage to the fragile skin of preterm infants), and bathing and maintenance—under professional supervision. A lack of proficiency in these tasks results in rigid movements and prolonged, inefficient procedures, intensifying the already exhausting demands of daily care and worsening parental fatigue and sleep deprivation.

Second, the inability to manage emergencies—such as choking, asphyxia, apnea, fever, and convulsions—heightens parental distress (22, 26). Parents express a strong desire for simulation training to master correct back patting techniques, infant cardiopulmonary resuscitation (CPR), and emergency response protocols. The absence of these skills, coupled with persistent “fear and anxiety” from constant vigilance, fuels concerns about delayed intervention and treatment.

Finally, specialized care requirements—including gastrostomy tube feeding, oxygen therapy monitoring, ostomy care, or infant rehabilitation—present unique challenges (22, 23, 27, 28). Parents must precisely master aseptic techniques, equipment operation, and the identification of abnormalities (e.g., signs of infection). Any error may compromise infant safety or precipitate complications, further amplifying concerns about “development and prognosis.” Without these core competencies, parents’ feelings of helplessness and anxiety remain unmitigated, and confidence in caregiving remains difficult to establish. For example:

Feeding sessions represent one of the primary stressors encountered by parents of preterm infants following hospital discharge, highlighting the need for specialized and individualized support. Breastfeeding difficulties present significant physical and psychological challenges. Preterm infants exhibit underdeveloped sucking-swallowing-breathing coordination and are prone to fatigue, frequently resulting in breastfeeding complications, inefficient feeding, or maternal nipple trauma. Mothers experience tension between their strong motivation to breastfeed (particularly due to the perceived immunological benefits) and the practical challenges they face (e.g., inadequate milk production, infant refusal of breastfeeding) (21, 24, 28). Repeated unsuccessful attempts often lead to profound frustration, guilt, and self-doubt, which exacerbate feeding-related anxiety and stress. The necessity for frequent milk expression and nighttime breastfeeding to sustain lactation significantly exacerbates sleep deprivation and parental exhaustion.

Additionally, parents often lack the necessary skills to facilitate the transition from bottle feeding to breastfeeding (29). They require professional guidance to assess appropriate timing (based on the infant’s condition and weight gain), adjust effective breastfeeding positions, and implement milk supplementation strategies. However, this skill deficit frequently prolongs and complicates the transition process, as parents vacillate between the “efficiency of bottle-feeding” and the “advantages of breastfeeding,” thereby increasing anxiety and impeding progress.

Furthermore, preterm infants often display subtle or ambiguous hunger and satiety cues (e.g., minimal movement, heart rate fluctuations), making it challenging for parents to distinguish between hunger, discomfort, and pain (25, 27). This can result in either overfeeding or underfeeding, which not only compromises nutritional intake and growth but also fosters parental self-doubt (feelings of inadequacy) and heightened sensitivity to external judgments regarding the infant’s growth (potential stigmatization). The confusion arising from unclear feeding signals further complicates the situation. The absence of targeted feeding support makes it difficult for parents to mitigate feeding-related stress, representing a significant barrier to family adaptation. For example:

Parents of preterm infants frequently experience a strong need for professional support following hospital discharge, which often remains unmet due to systemic barriers in accessing resources, thereby exacerbating their negative experiences. When encountering abnormal symptoms (e.g., increased regurgitation, irregular breathing, unexplained crying), parents lack convenient and reliable access to professional counseling services (e.g., 24-h hotlines, accessible online platforms), and immediate consultation channels are frequently limited (18, 24, 29). Consequently, they may struggle in isolation or resort to unnecessary emergency department visits during late-night hours or crises, heightening their anxiety and potentially delaying the management of the preterm infant’s unstable condition.

Additionally, the home environment post-discharge differs substantially from the hospital setting, leaving parents in urgent need of professional home visits to assess environmental safety, provide guidance on practical care practices (e.g., feeding, monitoring), and correct errors in real time. The absence or inadequacy of home-visiting services compromises ongoing support (18, 29). Without such face-to-face, context-specific assistance, parental confusion and caregiving mistakes may persist, while fear and anxiety stemming from inexperience remain unresolved, further deepening parental exhaustion.

Moreover, insufficient pre-discharge training, lack of home environment assessments, poor integration with community resources, and inadequate preparation for transitioning from the highly supervised NICU environment to full caregiving autonomy reinforce feelings of helplessness in abnormal situations and concerns about growth, development, and long-term outcomes (24). Limited access to resources forces parents to make high-stakes decisions under stress, compounding the family burden with potential increases in healthcare costs. Frustration with caregiving may also lead to heightened self-doubt. For example:

To effectively mitigate the fear and anxiety experienced by parents of preterm infants, as well as their sense of powerlessness stemming from insufficient nursing experience, the format of discharge preparation health education services must be urgently optimized (19, 22). The implementation of diversified educational approaches is imperative. Sole reliance on verbal explanations or printed materials proves inadequate in addressing the information-processing challenges faced by parents of preterm infants who are under significant stress and exhaustion (e.g., sleep deprivation, childcare fatigue). Multimodal interventions—including video demonstrations (e.g., proper feeding positions and cardiopulmonary resuscitation techniques), hands-on practice with manikins, illustrated digital brochures, and repeatable online courses—should be incorporated to improve comprehension of complex concepts (e.g., recognizing “preterm instability” and understanding developmental norms for corrected age). These methods enhance knowledge retention, reduce cognitive load, and strengthen parents’ capacity to respond to clinical abnormalities.

Reducing cognitive demands while increasing confidence in managing atypical situations is crucial. Enhancing paternal involvement represents a key strategy for alleviating maternal burden and improving family collaboration (18). This can be achieved by actively engaging fathers in skills training (e.g., bottle-feeding, bathing, first aid), customizing educational materials (such as step-by-step guides and checklists) to align with their learning preferences, and facilitating opportunities for joint practice. Such measures directly redistribute caregiving responsibilities—particularly feeding stress and nighttime care—thereby reducing maternal physical and emotional exhaustion. Concurrently, this approach enhances paternal role efficacy, diminishes skill-related alienation, and addresses concerns regarding growth, development, and long-term outcomes. Optimizing educational delivery and fostering paternal engagement are pivotal strategies for bridging information gaps, empowering parents, and counteracting their core adverse experiences. For example:

The need for continuous care for preterm infants after hospital discharge far exceeds the capacity of the average family, and the fragmentation and absence of key resources significantly exacerbate parental challenges. The first manifestation of this issue is the severe lack of human support for caregiving (18, 20, 23, 24). Primary caregivers, particularly mothers, often bear the burden of intensive 24-h care—including feeding, monitoring, and specialized care—without reliable assistance from family members or professional respite caregivers. This isolation traps mothers in an exhausting cycle of sleep deprivation and childcare, leaving them physically and mentally drained. The heavy family burden arises from their inability to attend to other responsibilities, while fathers may be compelled to work longer hours to meet financial needs, further straining family collaboration.

Secondly, the weak community healthcare collaboration system results in fragmented support (18, 19, 24). After discharge, there is inadequate information sharing and unclear responsibility allocation among family physicians, community nurses, rehabilitation organizations, and NICUs. Parents must repeatedly navigate between institutions to coordinate appointments, referrals, and ongoing medical care, such as developmental assessments, vaccinations, and counseling for abnormal conditions. This inefficiency increases the risk of missing critical information. Such siloed services not only deplete parents’ limited energy and delay problem resolution but also impose additional financial burdens through transportation costs, lost time, and potential duplicate testing expenses.

The failure to integrate resources forces parents to operate in isolation, often amid fear, anxiety, and helplessness. Any caregiving setbacks may be internalized as personal failures, heightening the risk of stigmatization. For example: