The effect of disease uncertainty on stress perception among parents of critically ill children in the PICU:the mediating effect of coping styles

Abstract

Objective

To investigate the mediating role of coping styles in the relationship between disease uncertainty and stress perception among parents of critically ill children in the PICU.

Methods

This cross-sectional study recruited 273 parents of children admitted to the PICU of a tertiary hospital in Guangdong Province, China. Standardized scales were used to assess disease uncertainty, coping style, and perceived stress. SPSS 26.0 software was used for descriptive statistics, univariate analysis, correlation analysis, multiple linear regression analysis and mediating effect analysis.

Results

The mean score for parents stress perception of PICU children was (30.73 ± 4.62). Stress perception was positively correlated with disease uncertainty (r = 0.585, P < 0.01) and negative coping style (r = 0.349, P < 0.01), while negatively correlated with positive coping style (r = -0.539, P < 0.01). Multiple linear regression analysis showed that disease uncertainty, positive coping style, parent–child relationship, residence and disease severity were significant predictors of parental perceived stress (P < 0.05). Mediation analysis showed that disease uncertainty not only directly affect stress perception, but also indirectly affect stress perception through coping style.

Conclusions

Disease uncertainty is a significant factor contributing to stress in parents of children admitted to the PICU. It affects their choice of coping styles, which in turn impacts their stress levels. This study highlights the importance of addressing disease uncertainty and coping strategies to reduce stress in parents of critically ill children and improve family-centered care in the PICU.

Introduction

The Pediatric Intensive Care Unit (PICU) is a specialized ward dedicated to the care of critically ill children. Due to its closed environment and restricted visiting policy, parents often face significant uncertainty about their child's condition, which can lead to immense psychological pressure [7, 37]. This stress may lead parents to feel a loss of control over their child's health. When individuals perceive stress as exceeding their coping capacity, it can trigger stress responses, such as tension and anxiety, ultimately leading to psychological stress and related emotional reactions [8, 40].

Stress perception refers to an individual’s cognitive evaluation and judgment of pressure, leading to tension and uncontrolled stress behavior [30]. Currently, research on stress perception has focused primarily on medical students [34], myocardial infarction patients [50], and diabetic patients [36], whereas few studies have examined parents of children in the PICU. The treatment cycle for children in the PICU is often long and costly, imposing significant physical, mental, and financial burdens on parents [3, 35]. Studies have shown that family members in intensive care units often experience anxiety, sleep disorders, and even posttraumatic stress disorder [44], which poses serious threats to personal health and family functioning.

Disease uncertainty refers to an individual's inability to judge disease-related stress events [11]. The conditions of children in the PICU are often complex and variable, making it difficult for parents to predict the progression of their children's illness and the effectiveness of treatment, thereby increasing uncertainty [15, 29]. Uncertain diseases can affect parents'emotions and family life, hinder their ability to seek disease-related information, and even lead to treatment interruptions [19, 43]. To mitigate the negative impact of disease uncertainty and stress, family members employ various coping styles. Coping style refers to individuals consciously adjusting their emotional, cognitive, or physical responses to reduce stress [46]. Parents often experience greater pain and stress than their child when faced with a sudden critical illness, which may adversely affect care, treatment, and postdischarge support for their child [33]. However, employing positive coping styles can reduce disease uncertainty, help parents obtain medical information, and alleviate stress [16, 17].

According to the literature, disease uncertainty, coping style, and stress perception are interrelated. However, the mechanism of the role of coping styles in the relationship between disease uncertainty and stress perception in parents of children in the PICU remains unclear. Therefore, this study aims to explore the mediating role of coping style between disease uncertainty and stress perception in parents of children in the PICU, providing a theoretical basis for medical professionals.

Methods

Design and participants

This cross-sectional study was conducted in a tertiary hospital in Guangdong Province using convenience sampling to recruit a total of 273 parents of children in the PICU. Data were collected from August 2023 to March 2024. According to the latest public data from the hospital, PICU has a total of 82 beds, 120 nurses on staff, and approximately 1,500 critically ill patients annually.

Inclusion and exclusion criteria.

Inclusion criteria for children

1. Unplanned admission to the PICU.

2. Length of stay in the PICU ≥ 72 h; This criterion was chosen because previous studies have shown that parental stress levels typically peak and remain elevated within the first 72 h after admission. This time frame is therefore critical for identifying highly stressed parents and providing timely nursing interventions and psychological support to reduce uncertainty and enhance confidence in the treatment process [5, 14],

3. Age < 14 years.

4. Admitted due to acute illnesses (e.g., infections, trauma).

Exclusion criteria for children

1. Diagnosed with chronic medical conditions requiring regular admissions to the PICU (e.g., congenital heart disease, chronic renal failure)

2. Currently in a terminal stage of illness

3. Dependent on long-term medical devices, such as home ventilators or dialysis equipment prior to admission

4. Readmitted to the PICU during the study period for the same illness.

Inclusion criteria for parents

1. age > 18 years

2. father or mother serving as the primary caregiver of the child

3. Provided informed consent and voluntarily agreed to participate

4. Able to read, understand, and independently complete the questionnaires.

Exclusion criteria for parents

1. History of mental illness or cognitive dysfunction that impairs effective communication or the ability to independently complete the questionnaire

2. Language barriers preventing the use of the study’s questionnaire language

3. Currently experiencing severe physical or psychological health issues.

Sample size

The sample size for this study was calculated using the formula for a cross-sectional survey. Assuming a significance level of α = 0.05, the corresponding Z-value (Uα/2) is 1.96. Based on previous studies, the standard deviation (σ) was estimated to be 6.05. To ensure precision, the allowable margin of error (δ) was set at no more than 0.80 points. Substituting these values into the sample size formula:

$$\mathbf{N}={\left(\mathbf{U},\mathbf{\alpha },/,2,\times ,\mathbf{\sigma },/,\mathbf{\delta }\right)}^2={\left(1.96,\times ,6.05,/,0.80\right)}^2=218.$$

To account for potential invalid or incomplete questionnaires, the sample size was increased by 10%. Thus, the minimum required sample size was calculated to be 240 participants. Ultimately, 273 participants were included in this study to ensure sufficient statistical power and reliability of the results.

Measures

Demographic and clinical information questionnaire

The demographic information collected included parent's relationship with the child, age, marital status, professional status, education level, place of residence, monthly household income (yuan), and the number of children. The clinical information focused on the severity of the child’s illness, which was assessed using the Pediatric Critical Illness Score (PCIS).

The Pediatric Critical Illness Score (PCIS)

Pediatric Critical Illness Score (PCIS) was formulated by Professor Song [49], an expert of pediatrics in China, in 1995. The scoring system aims to identify critical cases early by quantitatively assessing the physiological indicators of children. It includes an assessment of 10 key parameters: heart rate, blood pressure, respiration, arterial oxygen partial pressure (PaO₂), pH, blood sodium, blood potassium, blood BUN or creatinine, hemoglobin, and gastrointestinal system function. The total score ranges from 0 to 100 points, with scores > 90 indicating a non-critical condition, 70–89 indicating a critical condition, and < 70 indicating an extremely critical condition.The scale was designed for children in China. It has been directly used in Chinese and verified by many studies. It has high reliability and validity, and has been widely used in the assessment of critical illness in children in China [21, 23, 57].

Chinese version of the stress perception scale (CPSS)

The CPSS was developed by Cohen [9] and sinicized by Yang [51]. The Cronbach's α coefficient was 0.78. It consists of 14 items across 2 dimensions: out of control and tension. Using a 5-point Likert scale, scores range from 0 to 56, with higher scores indicating greater stress perception.The Cronbach's α coefficient of this study was 0.694.

Parent's Perception of Uncertainty Scale (PPUS)

The PPUS was developed by Mishel [39] and sinicized by Mai [25]; this scale has a Cronbach's α coefficient of 0.892. It includes 31 items across 4 dimensions: ambiguity, information scarcity, complexity, and unpredictability. Each item is rated on a 5-point Likert scale, with total scores ranging from 31 to 155. Higher scores indicate greater uncertainty.The Cronbach's α coefficient of this study was 0.855.

Simplified coping style questionnaire (SCSQ)

The SCSQ was developed by Xie [55],this scale has Cronbach's α coefficients of 0.89 and 0.78. The scale has 2 dimensions (positive response and negative response) and 20 items. Negative coping styles are items 13 to 20, and the rest are positive coping style items. With respect to the Likert-4 scale, the total score is 36 points. The coping tendency score is the difference between the positive coping score and the negative coping score. If the coping tendency value is greater than 0, the person tends to have a positive coping style, and if it is less than 0, the person tends to have a negative coping style.The Cronbach's α coefficient of SCSQ in this study was 0.878. The Cronbach's α coefficients of this study were 0.787 and 0.805.

Data collection

Data collection was conducted using unified instructions. With the consent of the department, nurses surveyed the parents (fathers or mothers) of children admitted to the PICU who met the inclusion criteria. After obtaining informed consent, the nurses provided eligible parents with a QR code to complete the demographic information questionnaire, the stress perception scale, the simplified coping style questionnaire, and parent's perception of uncertainty scale.

Data analysis

Statistical analysis was performed via SPSS 26.0. T tests were used to compare differences between two groups (e.g., relationship with the child and residence), and ANOVA was used to compare differences across multiple groups (e.g., marital status, professional status, education, monthly household income (yuan), number of children and severity of the disease in children). Correlation analysis was used to explore the relationships between disease uncertainty, coping styles and stress perception. Multiple linear regression was used to examine the predictive relationships among disease uncertainty, coping styles, and stress perception, controlling for demographic variables. Hayes's PROCESS macro (Model 6) and the bootstrap method were used to test the mediation model [2].

Results

General information

This study investigated the stress perceptions of 273 parents of children in the PICU, 188 (68.9%) of whom were mothers. The majority of the participants were aged 31–35 years (57.5%), and 148 (54.2%) parents lived in the county. A total of 262 (96.0%) parents were married, and 48.7% of the parents had a university education. Additional data are presented in Table 1.

Table 1.

Univariate analysis of stress perception among parents of children in the PICU (n = 273)

Variable	Sort	Number	Stress perception score	t/F	P
Relationship with the children	Father	85	29.48 ± 3.43	4.015	< 0.001
	Mother	188	31.56 ± 4.95
Age	≤ 30	53	31.96 ± 5.29	2.162	0.093
	31–35	157	30.96 ± 3.99
	36–40	49	30.22 ± 5.02
	≥ 41	14	28.93 ± 4.63
Marital status	Married	262	30.81 ± 4.63	1.712	0.114
	Unmarried/divorced/widowed	11	28.73 ± 3.93
Professional status	Employment	162	31.09 ± 4.34	1.282	0.279
	Unemployment	46	31.39 ± 4.65
	Other	65	30.14 ± 5.25
Education	Junior high school and below	37	31.00 ± 5.03	0.080	0.971
	High school	97	30.74 ± 4.58
	University	133	31.00 ± 4.51
	Master's degree or above	6	30.92 ± 4.63
Residence	Country	148	32.56 ± 4.63	7.037	< 0.001
	Town	125	28.97 ± 3.81
Monthly household income(yuan)	< 3000	7	32.43 ± 3.46	1.253	0.291
	3000–4999	20	30.50 ± 6.08
	5000–7999	118	31.42 ± 4.03
	≥ 8000	128	30.43 ± 4.91
Number of children	1	163	31.40 ± 4.47	2.455	0.088
	2	96	30.09 ± 4.31
	3 or more	14	30.86 ± 7.39
Severity of the disease	Mild critical	109	29.26 ± 4.14	17.635	< 0.001
	Critical	138	31.57 ± 4.22
	Very critical	26	34.38 ± 4.63

t = t test for effect size, F = univariate analysis effect size, P = level of significance

Univariate analysis of stress perception

The univariate analysis revealed significant differences in stress perception based on the relationship with the child, residence and disease severity in the child (P < 0.05). However, no significant difference was observed concerning age, marital status, occupational status, education level, family monthly income, or number of children (P > 0.05) (Table 1).

Degree of stress perception

The results showed that the mean value of the stress perception scale was 30.73 ± 4.62. The average score of tension dimension was 13.81 ± 3.58, and the average score of out of control dimension was 16.92 ± 2.59 (Table 2).

Table 2.

Total score and dimension scores of stress perception among parents of children in the PICU (n = 273)

Variable	Number of items	Items Score	Items average score
Stress perception	14	30.73 ± 4.62	2.20 ± 0.33
Tension	7	13.81 ± 3.58	1.97 ± 0.51
Out of control	7	16.92 ± 2.59	2.42 ± 0.37

Correlation analysis

The results of the correlation analysis show that stress perception was positively correlated with disease uncertainty (r = 0.585, P < 0.01) and negative response (r = 0.349, P < 0.01) and negatively correlated with positive response (r = −0.539, P < 0.01). The detailed results are presented in Table 3.

Table 3.

Correlation analysis of disease uncertainty, positive response, negative response and stress perception

Variable	Disease uncertainty	Positive response	Negative response	Tension	Out of control	Stress perception
Disease uncertainty	1
Positive response	−0.659**	1
Negative response	0.222**	−0.589**	1
Tension	0.397**	0.262**	0.151*	1
Out of control	0.495**	−0.601**	0.414**	0.099*	1
Stress perception	0.585**	−0.539**	0.349**	0.830**	0.638**	1

r = correlation, *P < 0.05, **P < 0.01

Multiple linear regression analysis of stress perception

Multiple linear regression analysis revealed significant variables explaining stress perception: disease uncertainty (β = 0.539, P < 0.001), positive response (β = −0.130, P < 0.05), relationship with children (β = −0.174, P < 0.001), residence (β = −0.267, P < 0.001), and disease severity (β = 0.219, P < 0.001). The coefficient of determination of the model was 0.625, which explained 62.5% of the variance in stress perception levels. The results are shown in Table 4.

Table 4.

Results of multiple linear regression analysis of factors affecting stress perception among parents of children in the PICU

Variable	B	β	t	P
(Constant)	10.473	-	3.317	0.001
Disease uncertainty	0.262	0.539	10.486	< 0.001
Positive response	−0.135	−0.130	−2.453	0.015
Relationship with children	−1.733	−0.174	−4.506	< 0.001
Residence	−2.471	−0.267	−6.803	< 0.001
Disease severity	1.596	0.219	5.440	< 0.001

R = 0.790, R² = 0.625, F = 88.828, P < 0.001; R: multiple correlation coefficient; R²: R square; B: unstandardized regression coefficient; β: standardized regression coefficient

Mediating effect of coping styles on the relationship between disease uncertainty and stress perception

The structural equation model was established with disease uncertainty as the independent variable, coping styles as the mediating variable, and stress perception as the dependent variable. The sample size was 5000, with a 95% confidence interval. The results revealed that the total effect of disease uncertainty on stress perception was 0.219, with a total mediating effect of 0.301, accounting for 72.8% of the total effect. That is, disease uncertainty can directly affect stress perception or indirectly affect stress perception through coping style. The results are shown in Table 5 and Fig. 1.

Table 5.

Mediating effect of coping style on the relationship between disease uncertainty and stress perception

Effect relationship	Paths	Effect	SE	95%CI	Accounts for the total effect (%)
Total effect	-	0.301	0.023	(0.256,0.347)	0.301
Direct effect	Disease uncertainty → stress perception	0.219	0.030	(0.159,0.279)	0.219
Indirect effect	Indirect total effect	0.082	0.021	(0.038,0.123)	0.082
	Ind1:disease uncertainty → positive response → stress perception	0.069	0.022	(0.025,0.112)	0.069
	Ind2:disease uncertainty → negative response → stress perception	0.013	0.007	(0.0004,0.030)	0.013

SE standard error, CI confidence interval

Fig. 1.

Mediation effect model

Discussion

Status and influencing factors of stress perception in parents of PICU children

This study revealed that parents of children in the PICU experience moderate levels of stress perception, which is consistent with previous research [14, 52]. Among the dimensions of parental stress, the"out of control"dimension was identified as the most significantly impacted aspect of parental stress. This is likely attributable to the intrinsic clinical instability of critically ill children, which often triggers profound anxiety and tension in parents [3, 22]. Such stress frequently manifests through various symptoms, including sleep disturbances, changes in appetite, and heightened physical and psychological distress [13, 45]. Moreover, the unique PICU environment-characterized by its somber atmosphere, constant medical interventions, and continuous monitoring—can inadvertently intensify parental stress responses [41]). To address these challenges, medical staff should implement early stress screening for parents and provide tailored psychological support that targets specific stressors. Additionally, adopting a family-centered approach to communication and information sharing—customized to meet each family’s unique needs—can help alleviate parental concerns regarding their child’s condition, thereby reducing stress and promoting emotional well-being.

This study identified relationships with children, residence, and disease severity as factors influencing stress perception. First, mothers of children in the PICU presented higher stress levels, aligning with those of Khoddam [26] but contrasting with those of Upadhyay [53], which may be due to regional and cultural differences and requires further exploration by future researchers. As primary caregivers, mothers often face the dual pressure of managing their child's development and family responsibilities [28]. In addition, mothers tend to be more sensitive and emotionally connected to their children, leading to heightened worry [4, 24]. Second, parents of PICU children from rural areas experienced more significant stress, which is consistent with the findings of Xiao [54]. This may be due to the disparity in resources between rural and urban areas, as well as unfamiliarity with the PICU environment and concerns about the continuity and effectiveness of treatment [46]. Third, the severity of a child's illness impacts stress perception, which is consistent with the findings of Alzawad and Grandjean [5, 20]. Parents of severely ill PICU children must make critical medical decisions continually, increasing stress sensitivity [42].Severe illness often results in longer hospital stays and greater financial pressure [10, 53]. Therefore, providers should prioritize multi-dimensional support for parents, including psychological, educational, and financial aspects, particularly for mothers, parents from rural areas, and parents of critically ill children. Psychological support can be provided through family-centered counseling services and the establishment of a'stress relief corner,'where parents can access stress-relief toys or express their emotions through activities like writing post-it notes. Educational support should focus on using plain language and visual aids, such as charts illustrating vital sign changes, treatment progress, and expected outcomes, to help parents better understand their child's condition and reduce uncertainty. Financial assistance and other forms of support should also be considered, particularly for families from rural areas or those facing significant medical expenses, to alleviate the financial burden and promote emotional well-being.

Relationships among disease uncertainty, coping styles and stress perceptions

This study revealed that parents'stress perceptions in the PICU were positively correlated with disease uncertainty, which is consistent with the findings of Jing [32]. Stress perception was negatively correlated with positive coping response and positively correlated with negative response, which is consistent with the findings of Gao [18]. The lack of awareness and inability of parents to predict their child's disease progression often lead to feelings of helplessness and psychological distress, which can further result in negative or depressive states [48, 56]. To address these challenges, medical staff can provide written or electronic disease management manuals,which can help parents reduce their uncertainty by offering clear and accessible information about the child’s condition. Furthermore, disease cognition education programs can be implemented to enhance parents'understanding of the treatment process. These interventions can empower parents to adopt positive coping strategies, thereby alleviating stress and improving their psychological well-being.

This study also revealed that disease uncertainty was negatively associated with positive coping responses and positively associated with negative responses and stress perception [12]. Parents with low disease uncertainty are more likely to adopt positive coping mechanisms, such as emotional venting, self-regulation, to handle stress [38]. In contrast, high level of disease uncertainty tend to result in coping negative response, including avoidance and submission, which can have detrimental effects on the physical and mental health of parents [32]. To mitigate these effects, medical staff should establish professional psychological support teams dedicated to assisting parents. The teams can provide tailored counseling services and facilitate peer support programs, helping to reduce disease uncertainty. By fostering a supportive environment, healthcare providers can encourage parents to adopt positive coping strategies, ultimately improving their psychological resilience and overall well-being.

The mediating effect of coping styles on the relationship between disease uncertainty and stress perception

The results of this study showed that coping style partially mediated the relationship between disease uncertainty and stress perception [53].When parents in the PICU face negative events related to their child's serious illness, the uncertainty surrounding the disease often leads to anxiety and stress. Previous studies have shown that parents experience significant stress when their children are admitted to the PICU, with 40% of the stress attributed to disease uncertainty and 10% to a lack of information about the child's condition [1, 53]. At this time, positive coping responses, such as seeking social support, can help parents reduce the impact of uncertainty about the disease and relieve stress perception [6, 27]. In contrast, negative coping responses, such as self-blame, not only fail to reduce the stress associated with disease uncertainty but may also exacerbate parents'psychological distress and potentially hinder the child’s recovery process [31, 47].To address these challenges, medical staff should prioritize health education for parents, focusing on areas such as daily nursing care, emergency management, and effective communication skills. By enhancing parents'coping abilities, healthcare providers can help reduce the negative effects of disease uncertainty, promote positive coping mechanisms, and ultimately improve both parental well-being and child recovery outcomes.

Limitations and future

This study has several limitations that should be acknowledged. First, the use of convenience sampling to recruit parents of PICU children from a tertiary hospital for a cross-sectional survey limits the generalizability of the findings. Additionally, we focused on parents of children experiencing their first unplanned admission to the PICU for 72 h or more, excluding parents of children with chronic diseases requiring regular PICU admissions. This exclusion may restrict the applicability of the results to populations dealing with chronic illnesses. Future research should consider conducting longitudinal studies to explore changes in stress perception and coping styles over time. Expanding the scope to include diverse populations, such as parents of children with chronic diseases requiring frequent PICU care, would provide a more comprehensive understanding. Furthermore, factors such as parental mental health history, social support systems, and cultural influences should be integrated into future studies to enhance the robustness and breadth of findings. Finally, the reliance on self-reported questionnaires introduces potential biases, such as subjectivity, social desirability bias, and recall bias, which may influence the accuracy of the results. Incorporating observational data or clinical evaluations in future research could help mitigate these biases and provide more objective insights.

Conclusions

This cross-sectional study explored the mediating role of coping styles between disease uncertainty and stress perception, providing a theoretical basis for developing effective strategies to manage parental stress.

Implications for nursing practice

The findings highlight that disease uncertainty is a significant factor contributing to stress in parents of children admitted to the PICU, as it influences their choice of coping styles, which in turn impacts their stress levels. These results have practical implications for pediatric intensive care nursing, emphasizing the need for targeted interventions. Healthcare professionals should focus on reducing disease uncertainty through clear communication and supporting parents in adopting positive coping strategies. Such measures can help alleviate parental stress, enhance psychological well-being, and improve family-centered care in the PICU.

Abbreviations

PICU

Pediatric Intensive Care Unit

PCIS

Pediatric critical case illness

CPSS

Chinese Version Perceived Stress Scale

PPUS

Parent's Perception Uncertainty Scale

SCSQ

Simplified Coping Style Questionnaire

Authors’ contributions

Study conception and design:Ying Peng and Xiaojiao Huang; Data collection: Ying Peng, Jiawei Huang; Data analysis and interpretation: Ying Peng, Qingqing Wang. Drafting of the article: Ying Peng, Yelin Ji, Xiaoying Tian, Shuai Yang; Approval of the manuscript: Fengxia Yan; Read and approved the final manuscript: all authors.

Funding

This research was funded by the National Natural Science Foundation of China (82204655); The Guangdong Medical Science Foundation project (A2022047, A2024294) and Traditional Chinese Medicine Bureau Of Guangdong Provincial (20231082).

Traditional Chinese Medicine Bureau Of Guangdong Provincial,20231082,The Guangdong Medical Science Foundation project,A2022047，A2024294,the National Natural Science Foundation of China,82204655

Data availability

The datasets generated and analyzed during the current study will be available from the author upon reasonable request.

Declarations

Ethics approval and consent to participate

This study was reviewed and approved by the Ethics Committee of Guangzhou Women and Children's Medical Center, affiliated with Guangzhou Medical University (No:2024175 A01).The approval covered the research period from August 1, 2023, to March 31, 2024. All participants were fully informed about the purpose and significance of the study, and their participation was voluntary, based on written informed consent.

Consent for publication

Consent for publication was obtained from all participants prior to their involvement in the study.

Competing interests

The authors declare no competing interests.