Preterm Infant Brain Injury: Parental Knowledge, Attitude, and Practice

Introduction

Preterm infants (<37 weeks’ gestation) account for ~10% of births globally [1] and ~7.3% in China [2]. Because of immature physiology, preterm infants are particularly vulnerable to brain injury (eg, hypoxic-ischemic encephalopathy, intracranial hemorrhage, white matter injury) [3], which can lead to cognitive, motor, and sensory impairments [4,5]. As primary caregivers, parents play a critical role in their infants’ growth and development [6]. Adequate knowledge of infant care is essential for the early detection of health-threatening conditions in preterm infants and timely medical intervention. However, many parents lack sufficient theoretical guidance, especially regarding diseases such as preterm brain injury [7]. These challenges are further compounded when parents cannot access professional guidance or necessary resources at home [8].

The Knowledge, Attitude, and Practice (KAP) survey is premised on the notion that knowledge positively shapes attitudes, which in turn influence behaviors [9]. Parents play an indispensable role in the development of preterm infants, with their knowledge, attitudes, and practices profoundly impacting the infants’ growth and development. However, variations in culture, socioeconomic status, and access to healthcare resources may lead to significant differences in parental perceptions and attitudes toward preterm brain injury. Research exploring these differences remains limited [10]. Previous studies have examined nurses’ KAP regarding preterm infant care [11] but have rarely focused on parents or specifically addressed preterm brain injury. The present study’s focus on parents rather than healthcare providers addresses a notable gap in both the literature and regional research. We hypothesized that parental KAP regarding preterm infant brain injury would be suboptimal, influenced by sociodemographic characteristics as reported in previous studies on parent engagement in neonatal intensive care units (NICUs) [12], and that more positive attitudes would correspond to more proactive caregiving practices. Accordingly, this study aimed to evaluate parents’ KAP regarding brain injury in preterm infants and to explore the factors associated with these levels.

Material and Methods

STUDY DESIGN AND PARTICIPANTS:

This cross-sectional study was conducted between January 2019 and December 2022 at the Inner Mongolia Autonomous Region Maternal and Child Health Hospital, using convenience sampling to invite parents of preterm infants to complete a questionnaire. The study was approved by the Ethics Committee of the Inner Mongolia Autonomous Region Maternal and Child Health Hospital (Approval No. 2023-010), and informed consent was obtained from all participants. Inclusion criteria were parents aged ≥18 years who were the primary caregivers of preterm infants and were able and willing to complete the questionnaire. Exclusion criteria included parents with cognitive or communication impairments that prevented questionnaire completion and cases in which infant information could not be reliably matched to a single caregiver.

QUESTIONNAIRE DESIGN AND QUALITY CONTROL:

The questionnaire was designed based on current guidelines for managing preterm brain injury [13,14]. It was revised based on feedback from 3 experts and pre-tested among 30 respondents, yielding a reliability coefficient of 0.704, indicating satisfactory feasibility.

The final questionnaire comprises demographic information and KAP dimensions (supplementary materials). The demographic section includes 17 items to collect respondents’ background information. The knowledge dimension consists of 15 items scored on 3 levels: 1 point for a correct answer, 0.5 points for an “unclear” response, and 0 points for an incorrect answer, yielding a total score range of 0 to 15. The attitude dimension includes 9 items, assessed using a 5-point Likert scale from “very positive” (5 points) to “very negative” (1 point), with a score range of 9 to 45. The practice dimension comprises 7 items, also using a 5-point Likert scale, scored from “very compliant” (5 points) to “very non-compliant” (1 point), with a score range of 7 to 35.

DATA COLLECTION AND QUALITY CONTROL:

The research team distributed questionnaires via the Wenjuanxing platform, with participants accessing the online survey by scanning a WeChat QR code. To ensure data integrity, each IP address was restricted to a single response, and all questionnaire items were set as mandatory. For participants with lower literacy levels, trained researchers provided reading assistance and clarified questions without influencing their responses.

SAMPLE SIZE:

Sample size was calculated using the formula for cross-sectional studies:

where Z_1–α/2 when α=0.05, the assumed degree of variability of P=0.5 maximizes the required sample size, and δ is admissible error (which was 5% here). The theoretical sample size was 480, which includes an extra 20% to allow for subjects lost during the study.

STATISTICAL ANALYSIS:

Data analysis was performed using SPSS Statistics version 22.0 (IBM Corp., Armonk, NY, USA) (IBM Corp. Released 2013. IBM SPSS Statistics for Windows, Version 22.0. Armonk, NY: IBM Corp). Descriptive statistics were used to summarize the demographic characteristics and scores for knowledge (K), attitude (A), and practice (P). Continuous variables were reported as mean±standard deviation (SD), while categorical variables, including demographic characteristics and individual question responses, were expressed as counts (percentages, n [%]). To compare knowledge, attitude, and behavior scores across demographic groups, continuous variables were first tested for normality. Normally distributed data were presented as mean±SD and compared using independent samples t tests. Non-normally distributed data were reported as median (range) and compared using the Mann–Whitney U test. For comparisons involving 3 or more groups, one-way ANOVA was used for normally distributed data with homogeneous variances, and the Kruskal–Wallis test was applied for non-normally distributed data. Pearson correlation analysis was used to assess relationships between knowledge, attitude, and behavior. In the KAP framework, participants scoring above 80% of the total score are classified as having adequate knowledge, positive attitudes, or active practices, while those scoring below 80% are classified as having insufficient knowledge, negative attitudes, or inadequate practices [15]. Multivariate logistic regression was conducted to evaluate the association between demographic characteristics and KAP scores, with variables showing P<0.05 in univariable analysis included in the multivariable model. All statistical tests were two-tailed, with P<0.05 considered statistically significant.

Results

BASELINE CHARACTERISTICS OF PARTICIPANTS:

A total of 580 questionnaires were collected. These included 500 questionnaires obtained during the initial survey period and 80 additional questionnaires collected later. After data checking, questionnaires were removed for the following reasons: 1 respondent reported an age below 18 years and 1 provided an implausible age value; 8 infants had a gestational age above 36+6 weeks; 11 infants had a gestational age below 28 weeks; 27 respondents selected the same option (“a”) for all knowledge items and 4 selected all “c”; and 1 case showed an abnormal response to item K2. After these exclusions, 527 questionnaires were considered valid for analysis. The mean age of respondents was 32.75±4.35 years, with 53.51% (282) being mothers of preterm infants. Late preterm infants accounted for 54.65% (288 cases), with a mean birth weight of 2033.52±576.99 g. Infants aged 6 months to 1 year comprised 52.56% (277 cases), those without siblings 58.82% (310 cases). Among the infants, 109 (20.68%) had confirmed brain injury, while 418 (79.32%) had no such history. Breastfeeding duration between 6 and 12 months was reported in 34.35% (181 cases) (Table 1).

The scores for knowledge, attitude, and practice were 11.039.40±2.962.00 (with a possible range of 0–15), 34.37±5.01 (with a possible range of 9–45), and 22.46±4.28 (with a possible range of 7–35), respectively. As shown in Table 2, knowledge scores differed significantly by breastfeeding status (P=0.003) and monthly per capita household income (P<0.001). Attitude scores showed significant variation by age group of the preterm infant (P<0.001), occupation (P<0.001), breastfeeding status (P<0.001), household income (P=0.009), and birth classification category (P=0.027). Practice exhibited the broadest group differences, with significant disparities observed for preterm infant age (P<0.001), occupation (P<0.001), household income (P<0.001), breastfeeding status (P<0.001), education level (P=0.010), parental role to the child (P=0.020), and sex (P=0.029).

DISTRIBUTION OF RESPONSES TO INTRINSIC MOTIVATION, ATTITUDE, AND PRACTICE:

The distribution of knowledge dimensions revealed that the 3 questions with the highest number of participants choosing the “correct” option were “A preterm infant is a newborn whose gestational age at birth is less than 37 weeks” (K1) with 83.87%, “Drug abuse in pregnant mothers is risk factors for brain injury in preterm infants” (K5.4) with 82.35%, and “Severe intrauterine distress with birth asphyxia is risk factors for brain injury in preterm infants” (K5.1) with 81.40%. On the contrary, the 3 questions with the highest number of participants choosing the “unclear” option were “Kangaroo care helps the growth and development of infants, and has a positive impact on the neurodevelopment, sleep, and breast milk intake of preterm infants” (K11) with 36.05%, “Brain injury in preterm infants may not be accompanied by obvious clinical symptoms and requires imaging studies to detect” (K7) with 35.10%, and “When there is clear evidence of injury on cranial ultrasound screening, cranial MRI is needed to further clarify the nature of pathological injury, assess the degree of injury and determine the developmental status” (K8) with 33.59% (Table 3).

The results of the attitude dimension demonstrate differences in individuals’ attitudes and beliefs about brain injury in preterm infants, as well as aspects related to preterm care and rehabilitation. Most respondents (66.98%) indicated concern about the extent of brain damage in preterm infants (A1). Most respondents (76.47%) believed that nutritional management plays a crucial role in the recovery of brain injury in preterm infants (A2). A substantial percentage (77.42%) of individuals agreed on the importance of home care for the rehabilitation of brain injury in preterm infants (A3). Regarding active parental participation in rehabilitation, a significant majority (77.98%) agreed that it is vital for the recovery of preterm infants with brain injury (A4). Most (80.08%) respondents considered long-term follow-up essential after discharge from the hospital for preterm infants with diagnosed brain injury (A5). Regarding commitment to rehabilitation therapy, 80.88% of respondents agreed that parents should actively cooperate with the therapy and not lose confidence due to after-effects (A6). A substantial portion (63.19%) of individuals believed that preterm infants with brain injury, even after rehabilitation, cannot attain the same level of intelligence as full-term babies when they grow up (A7). Most respondents (90.89%) expressed a desire for specialized doctors to follow up and guide them (A8). Regarding self-perceived knowledge, 52.37% of individuals believed they have a good sense of recognizing and preventing complications such as brain injury in preterm infants (A9) (Table 4).

For practice, 69.26% of individuals demonstrated a proactive approach, expressing their willingness to initiate discussions with their doctors regarding the feeding, care, follow-up, prevention, and treatment of brain damage in their preterm infants (P1). Additionally, an impressive 78.18% affirmed their commitment to adhering to their doctor’s guidance by bringing their preterm infants for regular hospital follow-up visits (P2). Furthermore, 42.69% of the respondents indicated their ability to accurately complete the growth curve records for their preterm infants (P3). Moreover, a remarkable 92.79% of participants expressed their unwavering dedication to creating a warm and harmonious environment for their preterm infants (P5). A substantial 88.04% of the respondents declared their readiness to promptly recognize and respond to the needs of their preterm infants (P6). Interestingly, 50.09% of the participants expressed their intention to embrace kangaroo care (“kangaroo cuddling” with skin-to-skin contact) as a nurturing approach for their preterm infants (P7) (Table 5).

SPEARMAN CORRELATION ANALYSIS:

Spearman correlation analysis indicated that knowledge was not significantly correlated with either attitude or practice, whereas attitude showed a strong positive correlation with practice (r=0.724, P<0.001) as presented in Table 6.

MEDIATION ANALYSIS:

The covariate-adjusted mediation model demonstrated excellent fit (RMSEA=0.003, SRMR=0.015, TLI=1.000, CFI=1.000). Attitude showed a strong direct association with practice (β=0.515, 95% CI: 0.459 to 0.572, P<0.001) and served as a significant mediator linking multiple background factors to practice. For preterm infants age >1 to ≤2 years, the association with practice was predominantly indirect through attitude (indirect β=−0.940, 95% CI: −1.359 to −0.521, P<0.001), with no significant direct effect (direct β=−0.291, 95% CI: −0.844 to 0.261, P=0.302). Similar indirect pathways were observed for occupation (indirect β=−0.295, 95% CI: −0.489 to −0.100, P=0.003) and monthly per capita household income (indirect β=0.434, 95% CI: 0.114 to 0.755, P=0.008), indicating that these factors influenced practice mainly through their impact on attitude. Breastfeeding status affected practice through both direct and indirect pathways (direct β=0.588, 95% CI: 0.383 to 0.794, P<0.001; indirect β=0.641, 95% CI: 0.474 to 0.809, P<0.001) (Table 7, Figure 1).

UNIVARIATE AND MULTIVARIATE ANALYSIS:

Multivariable linear regression identified several factors independently associated with total KAP scores, including parental age (β=−0.214, 95% CI: −0.364 to −0.064, P=0.005), preterm infant age >1 year and ≤2 years (β=−2.793, 95% CI: −4.195 to −1.391, P<0.001), parental education at the high school or technical secondary school level (β=−2.181, 95% CI: −4.291 to −0.072, P=0.043), self-employment (β=−2.640, 95% CI: −4.719 to −0.561, P=0.013), and monthly per capita household income ≥10 000 CNY (β=3.523, 95% CI: 1.012 to 6.034, P=0.006). Breastfeeding duration was also independently associated with KAP scores, with shorter durations or no breastfeeding corresponding to significantly lower scores compared with breastfeeding for ≥12 months (all P<0.001), as shown in Table 8. In the logistic regression model examining proactive practice, attitude remained independently associated with positive behavior (OR=1.41, 95% CI: 1.31 to 1.53, P<0.001). Shorter breastfeeding durations and no breastfeeding were linked to reduced odds of proactive practice relative to breastfeeding for ≥12 months (OR=0.39, 95% CI: 0.22 to 0.68 for 6 to <12 months; OR=0.15, 95% CI: 0.04 to 0.56 for 3 – <6 months; OR=0.24, 95% CI: 0.11 to 0.52 for <1 month; OR=0.37, 95% CI: 0.14 to 0.98 for no breastfeeding), as detailed in Table 9.

Discussion

This study assessed the KAP of parents regarding the prevention of brain injury in preterm infants through a cross-sectional survey. Key influencing factors on KAP were identified via multivariate analysis. The findings reveal a clear gap in parental understanding and engagement, which may compromise early neuroprotective care. Enhancing KAP through targeted, family-centered education could promote timely interventions and improve neurodevelopmental outcomes. These insights support the integration of structured parental training into routine neonatal follow-up services.

The study shows parents of preterm infants had knowledge gaps, suboptimal attitudes, and lacked proactive practices regarding preterm infant brain injury. These results underscore the need for targeted interventions to enhance parent education [16], foster more favorable attitudes, and promote active engagement in practices that can contribute to the prevention and management of brain injuries in preterm infants. These interventions encompass educational programs, support resources, and strategies to bridge knowledge–attitude–practice gaps [17]. Recent studies have also demonstrated the feasibility of using surface electromyography to assess facial muscle activity in extremely preterm infants, providing valuable insights into early neurodevelopmental evaluation [18]. This type of assessment illustrates how early functional changes may appear before overt clinical symptoms, which reinforces the need for parents to understand the value of early monitoring tools. Educating parents about relevant assessment knowledge can facilitate timely identification of issues and offer effective support. Furthermore, research reveals significant variations in parents’ knowledge, attitudes, and practices based on occupational category, monthly income, and breastfeeding duration, highlighting the influence of socioeconomic factors on preterm infant care. These results align with prior studies emphasizing the impact of socioeconomic status on healthcare decision-making and adherence [19,20]. In our analysis, occupational category and monthly household income showed significant associations with KAP outcomes, which further supports the socioeconomic gradient observed in parental caregiving behaviors. Parental attitudes were influenced by preterm birth classification and infant age, emphasizing the need for tailored educational interventions [21,22]. Practice scores correlate with infant age, parent sex, parental status, and education level, indicating the importance of addressing these factors for better caregiving practices [23]. The mediation analysis further indicated that the effects of preterm infant age, occupation, and monthly household income on practice were largely indirect and operated through parental attitudes, whereas breastfeeding influenced practice through both direct and indirect pathways. Notably, no significant correlation was found between knowledge and practice scores, which suggests knowledge alone does not directly translate into caregiving behaviors without supportive attitudes, resources, or skills. This pattern was consistent with the mediation model, in which knowledge did not show a significant indirect effect on practice, whereas attitude remained a key pathway linking background factors to caregiving behaviors. Identifying factors linked to KAP scores through regression analysis informs targeted interventions. For example, older parents, those with late preterm infants, or experiencing financial strain may benefit from focused support. Our results showed a significant association between breastfeeding duration and caregiving practices, with longer breastfeeding duration associated with higher practice scores compared to shorter durations. This finding highlights the importance of promoting and supporting sustained breastfeeding in preterm infant care [24].

The study found a solid understanding of fundamental concepts among participants, particularly in areas such as the definition of preterm infants and the link between maternal drug abuse and preterm infant brain injury, with high “correct” response rates. This aligns with established medical knowledge and healthcare education goals that emphasize early recognition and intervention in these areas [25,26]. A substantial number of participants provided “unclear” responses to questions regarding the effectiveness of kangaroo care, the potential absence of clinical symptoms in brain-injured preterm infants, and the necessity of cranial MRI after detecting injury through ultrasound screening. These responses may indicate gaps in parent education and awareness that could affect clinical practice. To improve clinical practice, the study emphasizes the importance of targeted educational interventions to address these uncertainties and misconceptions [27]. Clear and comprehensive education on the benefits of kangaroo care [28], the subtleties of brain injury presentation in preterm infants, and the relevance of diagnostic tools such as cranial MRI can lead to more informed and effective caregiving practices.

The results from the attitude dimension offer valuable insights into parents’ perceptions of brain injury in preterm infants and their attitudes toward preterm care and rehabilitation. It is evident that parents share a significant concern about the extent of brain damage in preterm infants, emphasizing the gravity of this issue within the caregiving community [29,30]. There is consensus on the role of nutrition, home care, and parental involvement in preterm infant recovery. However, some parents have concerns about post-rehabilitation cognitive development, highlighting the need for education and reassurance. Parents seek specialized medical guidance, emphasizing the role of healthcare professionals. Providing evidence-based information and fostering parent–professional collaboration is crucial for optimal outcomes in preterm infants with brain injury [31].

The caregiving practices study highlights the proactive and engaged behavior of many parents in preterm infant care. They initiate discussions with healthcare professionals and follow doctors’ guidance, emphasizing their vital role in infants’ well-being. Moreover, parents’ ability to monitor infants’ growth accurately reflects their caregiving self-efficacy. Their commitment to nurturing, prompt response to infant needs, and exploration of innovative practices such as kangaroo care underscores their dedication. To enhance clinical practice, healthcare providers should recognize and leverage parents’ proactive approach and commitment, fostering a collaborative and supportive partnership. Moreover, providing parents with the necessary resources, education, and guidance is crucial in furthering their caregiving practices and promoting the well-being of preterm infants [32,33].

This study has several limitations. First, our findings are constrained by selection bias and limited generalizability. The use of a self-administered, voluntary questionnaire resulted in the underrepresentation of parents of extremely preterm infants and those from low-income households. This skewed the sample towards families of late preterm infants, which may have lowered the overall perceived risk and limits the applicability of our conclusions to the most clinically and socioeconomically vulnerable populations. Furthermore, as a single-institution study, the findings may not be generalizable to populations with different cultural norms or healthcare systems. Second, methodological issues related to data collection and measurement should be considered. The questionnaires were administered several months postpartum, introducing potential recall bias regarding the acute neonatal period. The reliance on self-reported KAP data means that perceived competence may not reflect actual caregiving behaviors, underscoring the need for objective assessments in future research. Additionally, the practice dimension of our survey was limited in scope and did not capture critical behaviors such as early symptom recognition or engagement in rehabilitation, providing an incomplete picture of caregiving activities. Third, the study was limited by unmeasured variables and a descriptive design. We did not collect data on key potential confounders, such as parental health literacy, frequency of communication with providers, or whether participants were healthcare professionals. The study design also did not support detailed subgroup analyses of high-risk populations (eg, infants with brain injury) or an exploration of potential mediators, such as family support, that could explain the pathway from attitude to practice. Future research should address these limitations to enhance the accuracy and applicability of the findings.

Conclusions

Parents of preterm infants demonstrated insufficient knowledge, suboptimal attitudes, and relatively passive practices in relation to preventing preterm infant brain injuries. To enhance clinical practice and care based on the study’s findings, it is strongly recommended to implement targeted interventions. Healthcare providers should develop educational programs designed to enhance parents’ understanding of preterm infant brain injuries, cultivate positive attitudes, and underscore the importance of extended breastfeeding for preterm infants’ well-being. These measures can contribute to improving the quality of care and outcomes for preterm infants and their parents. Integrating these strategies into routine neonatal care and community health policies could further enhance early neuroprotective practices and long-term outcomes in this vulnerable population.