Modifiers of perceived stress in caregivers of children with Sturge-Weber syndrome: a cross-sectional, single-site study

Introduction

Sturge-Weber syndrome (SWS), more commonly known as encephalotrigeminal angiomatosis, is characterised by extensive vascular malformations in the face, head, and trunk and glaucoma-induced optic nerve damage, typically on one side, but sometimes involving both sides of the body (1). All individuals with SWS are born with facial vascular malformations (2), one notable characteristic of patients here is the presence of port-wine birthmark on their faces. That can cause complications in the eyes (3), potentially resulting in secondary glaucoma that can lead to blindness. Glaucoma can appear in infancy (0–3 years old) or later in life (4) and has a relatively insidious onset (5), and that the majority of SWS cases are secondary to sporadic mutations in the GNAQ gene (3,6). SWS is a multi-system disease with characteristics that make it difficult to treat, there is currently no definitive cure for SWS, and management strategies focus on symptomatic management such as anti-seizure medications, limited surgical resection of the epileptogenic tissue and the medical and/or surgical management of glaucoma (1,7). The glaucoma that affects 30–70% patients diagnosed with SWS is very difficult to manage, often requiring extensive eye drops and multiple surgeries (1).

Perceived stress reflects an individual’s ability to evaluate the potential stress caused by triggering events (8). In recent years, the mental health of parents of children with chronic illnesses has attracted increasing attention from the academic community (9-11), as the primary carers of children with SWS, their mental health is of particular concern. Parents’ perceived stress is closely associated with anxiety, if the caregivers of sick children do not have appropriate coping abilities, it can be detrimental to their children’s health (12,13). However, research into perceived stress among carers of children with SWS is limited, possibly because the condition is rare. This study aims to explore the factors that influence perceived stress among carers of children with SWS and to identify potential intervention points for future nursing interventions. The findings will provide guidance on how to reduce negative emotions, enhance coping abilities and lower perceived stress. We present this article in accordance with the STROBE reporting checklist (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-1-0035/rc).

Methods

Respondents

We conducted a retrospective analysis of data from caregivers of 105 children with SWS who received treatment at the Ophthalmology Department of the Ninth People’s Hospital Affiliated to Shanghai Jiao Tong University School of Medicine from April 2020 to June 2021. The inclusion criteria were as follows. Inclusion criteria for children: a confirmed diagnosis of SWS. No other exclusion criteria are specified. Caregiver inclusion criteria: (I) capable of comprehending and completing the questionnaire; (II) voluntarily provided informed consent to participate in the study. Caregiver exclusion criteria: (I) age <18 years; (II) history of psychiatric disorders (including common mental health conditions such as depression); (III) recent exposure to major traumatic events (e.g., the death of a close relative or friend) causing acute psychological distress (as assessed through a combined interview and self-report). The exclusion of caregivers with acute psychological trauma was intended to minimize confounding variables that could influence stress perception and ensure a more accurate assessment of stress related to the disease itself. The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. This study was approved by the Institutional Review Board of Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine (approval No. SH9H-2022-T50-1), and informed consent for this retrospective analysis was waived.

Tools

General demographic information

This section included information regarding the patient: gender, whether an only child, birth order, ocular disease, current disease status; information regarding the caregiver: place of residence, ethnicity, marital status, educational level, occupation, sleep quality, State of health, perceived disease severity, family income, and methods for detecting eye diseases.

Perceived Stress Scale (PSS-4)

The PSS-4 was developed by Cohen (14) to assess respondents’ stress levels over the past month. It includes four items and is scored on a 5-point Likert scale, ranging from 0 (‘never’) to 4 (‘very common’). Confirmatory factor analysis of the PSS-4 has identified a two-factor structure: positively described items and negatively described items. Items 2 and 3 are positively described and reverse-scored, while Items 1 and 4 are negatively described and not reverse-scored. The scores of the four items are summed for the total score. Higher scores indicate higher perceived stress. The PSS-4 was selected due to its established validation in Chinese populations, with a reported Cronbach’s α of 0.702 (15). The shorter length of the PSS-4 makes it a suitable tool for efficiently assessing perceived stress, especially in clinical settings where time is a factor.

Generalised Anxiety Disorder-7 (GAD-7)

The GAD-7 is used to screen for generalised anxiety disorder. It comprises 7 items assessing the degree of distress respondents have experienced with corresponding symptoms in the past two weeks. Answers are provided on a 4-point scale ranging from 0 (‘completely unfamiliar’) to 3 (‘almost every day’). Total scores are between 0 and 21 points. Respondents with a total score of 10 or higher are considered to have symptoms of generalised anxiety disorder; cut-off points of 5, 10, and 15 represent mild, moderate, and severe anxiety, respectively (16). The GAD-7 has good reliability and validity (17) and is a rapid and effective self-assessment tool for detecting anxiety symptoms.

Patient Health Questionnaire-2 (PHQ-2)

The PHQ-2, extracted from the Patient Health Questionnaire-9 (PHQ-9), is used to screen for depressive symptoms, with scores ranging from 0 (‘completely absent’) to 3 (‘almost daily’) (18). It assesses the frequency of feeling depressed, frustrated, or hopeless in the previous 2 weeks, with a sensitivity of 83% and specificity of 92% for severe depression scores greater than 3. The PHQ-2 has been previously validated and used in China (19).

Simplified Coping Style Questionnaire (SCSQ)

The SCSQ is a self-assessment questionnaire designed to measure the attitudes and behaviours that people frequently adopt in their daily lives (20). It comprises positive and negative coping subscales, with a total of 20 items. Responses are provided on a 4-point scale, ranging from 0 (‘never’) to 3 (‘frequently’). Higher positive coping scores indicate stronger coping ability, whereas higher negative coping scores indicate weaker coping ability. In previous studies, Cronbach’s α was 0.90 for the total scale and 0.89 and 0.78 for the positive and negative coping subscales, respectively.

Statistical analysis

R software version 4.2.3 was used for data analysis. To investigate the effects of different variables on the perceived stress of caregivers of children with SWS, t-tests, Mann-Whitney tests, analysis of variances (ANOVAs), and Kruskal-Wallis tests were used to compare the differences in stress perception scores across groups. Spearman’s rank correlation coefficients were calculated to analyse the correlations among the scores for perceived stress, anxiety, depression, and responses of caregivers of children with SWS. A multiple linear regression (MLR) model (bidirectional stepwise regression analysis) was established to evaluate the predictive ability of multiple independent variables on perceived stress in caregivers of children with SWS. The model includes variables such as the gender of the affected child, method of discovering the eye disease, perceived disease severity, parental education level, anxiety, depression, and coping strategies. To improve predictive accuracy, the XGBoost model was also applied to identify key features that affect the perceived stress of caregivers of children with SWS. XGBoost is an ensemble learning algorithm based on gradient-boosting decision trees that evaluates the contribution of each feature to model prediction through Shapley Additive explanations (SHAP) value analysis. The predictive ability of both models was assessed using R-squared values, root mean square error (RMSE), and mean absolute error (MAE), ensuring robustness in identifying key predictors. Results with a P value less than 0.05 were considered statistically significant.

Results

Respondents’ characteristics

In this study, all paediatric patients with SWS included had concomitant glaucoma. The patients with SWS included 58 males (55.2%), 56 (53.3%) only children, and 66 (62.9%) first-born children. Regarding SWS symptoms, 46 patients were affected in their left eye and 46 in their right eye (43.8%), while 13 patients were affected in bilateral eyes (12.4%). The intraocular pressure of 82 children (78.1%) remained stable. Among the caregivers, 68 (64.8%) were from city areas. Regarding ethnicity, 104 caregivers (99.0%) belonged to the Han Chinese. A total of 98 caregivers (93.3%) were married. Regarding educational level, 53 caregivers (50.5%) had a high school and below; 62 caregivers (59.0%) were employed. Most caregivers (101 individuals) had good sleep quality (96.2%). Regarding their own health status, 97 caregivers (92.4%) considered their health to be excellent. When asked about the severity of their child’s disease, 20 caregivers (19.0%) believed it was not serious. Family income could meet the medical expenses of sick children in 68 families (64.8%). When asked how they discovered their child’s condition, 42 (40.0%) caregivers said they had discovered it themselves and 56 (53.3%) reported it was after eye examinations recommended by plastic surgeons or laser cosmetic surgeons, and 7 (6.7%) discovered it through other avenues. Regarding mental health status, 30 caregivers (28.6%) had anxiety symptoms, and 22 (21.0%) had depression symptoms.

Univariate analysis of perceived stress

As detailed in Table 1, the difference in total stress perception scores between parents of SWS children with varying levels of education was statistically significant (P<0.05).

Scores for perceived stress, anxiety, depression, and coping strategies

Caregivers of children with SWS reported mean scores of 7.52±2.14 points for perceived stress; 7.91±5.24 points for anxiety, and 2.12±1.61 points for depression; the mean disease course of the children was 31.95±28.39 months; the patients’ average age was 7.95±4.01 years; the average age of the caregivers was 32.89±5.47 years; regarding coping strategies, the mean score for negative coping was 22.16±7.91 points, while that for positive coping was 9.30±4.28 points. Detailed data are presented in Table 2.

Correlation analysis results

As Table 3 shows, parents of children with SWS exhibited positive correlations between perceived stress and anxiety/depression (r=0.572, P<0.01; r=0.469, P<0.05) and negative correlations with positive coping (r=−0.396, P<0.01).

Multivariate analysis results

The MLR model showed that gender of the child, methods for detecting eye diseases, perceived disease severity, the educational level of the caregivers, anxiety, depression, and positive coping had a significant impact on the perceived stress of caregivers of SWS children (P<0.05). Specifically, more positive coping strategies were related to lower perceived stress; higher levels of anxiety and depression were associated with higher perceived stress; caregivers with higher educational levels reported lower perceived stress; caregivers of female children exhibited higher perceived stress; caregivers who perceived their child’s disease as more severe had higher perceived stress; and caregivers of children with SWS who are diagnosed with glaucoma through other means exhibit higher levels of perceived stress. The R-squared value of this model was 0.477, RMSE was 1.540, and MAE was 1.168 (Table 4).

XGBoost model results

The XGBoost model was used to investigate the non-linear relationships between variables influencing caregivers’ perceived stress and their relative importance. In the XGBoost model, key features affecting the prediction of perceived stress scores were identified through SHAP value analysis. The x-axis (SHAP values) indicates the direction in which a feature contributes to the model’s prediction: a position to the right (>0) indicates that the factor increases perceived stress (positive influence), whilst a position to the left (<0) indicates that it reduces perceived stress (negative influence); the colour represents the magnitude of the feature value (purple for low values, yellow for high values). If the yellow points (high feature values) are concentrated on the right and the purple points (low feature values) are concentrated on the left, this indicates that the factor is positively correlated with perceived stress; conversely, if the yellow points are concentrated on the left and the purple points are concentrated on the right, the correlation is negative.

Accordingly, factors positively correlated with perceived stress include: anxiety, depression, negative coping, the child’s gender (female), perceived disease severity, and birth order (second child and above). Specifically, the higher the caregivers’ levels of anxiety and depression, the more they employ negative coping strategies, and the more severe they perceive the child’s condition to be, the higher their levels of perceived stress; caregivers of female children exhibit higher levels of perceived stress compared to those of male children.

Factors negatively correlated with perceived stress include: positive coping, educational level (college degree or above), family income, and marital status (married). That is, the more positive the coping strategies employed by caregivers, the higher their educational level, and the higher their family income, the lower their perceived stress levels. Furthermore, the SHAP values for factors such as the child’s age, disease course, caregivers’ age and ocular disease are mainly distributed around 0, suggesting that these factors have a relatively weak independent influence on perceived stress, or that complex non-linear relationships exist.

The R-squared value of the XGBoost model was 0.994, RMSE was 0.235, and MAE was 0.140, demonstrating higher prediction accuracy than the MLR model (Figure 1).

Figure 1 Scatter plot of SHAP feature density. SHAP, Shapley additive explanations.

Discussion

Caregivers who have more positive coping attitudes tend to have lower perceived stress levels

The present study demonstrated that caregivers of children with SWS who employed more positive coping strategies experienced lower levels of perceived stress. Perceived stress is closely related to the coping strategies that individuals adopt in stressful situations, according to Lazarus’ theory of stress interaction, stress responses depend on two processes: cognitive evaluation and stress coping. Perceived stress can mediate or moderate the process of cognitive evaluation and stress response (21). Positive coping strategies can improve individual adaptation processes and reduce sources of stress. Preliminary research by our team indicates that parents’ active coping strategies can reduce their sense of uncertainty regarding their child’s illness (22), this highlights the importance of assessing parents’ coping mechanisms and providing effective preoperative guidance and support for those with children who have SWS. This may serve as a reminder that in clinical care settings, healthcare professionals should not only provide routine nursing care for paediatric patients but also attend to the psychological wellbeing of their parents. Emphasis should be placed on psychological nursing, offering effective information support, guiding positive coping strategies, and thereby promoting the prognosis of children with illnesses.

Caregivers who are experiencing anxiety and depression report high levels of perceived stress

In this study, greater symptoms of anxiety and depression were correlated with higher perceived stress levels in caregivers of children with SWS. Related studies have shown that anxiety in parents with sick children mainly comes from a persistent state of worrying about their children’s disease (23). Discomfort, crying, and iatrogenic pain in children can easily increase negative emotions in their parents (24). Furthermore, the long-term treatment required for children with SWS will add a substantial economic burden to the family and increase caregivers’ perceived stress. High levels of perceived stress can lead to more negative emotions (25). Mindfulness may modulate pre-attentional and attentional processes and improve well-being and stress management, as reflected by reduced aberrant salience and promoted mindful attention and decentering (26). This study suggests that the anxiety and depression experienced by family carers with high perceived stress levels should be addressed. Future interventions should explore strategies for managing and regulating emotions effectively to alleviate their psychological burden.

Caregivers with high educational levels experience less perceived stress

More highly educated caregivers of patients with SWS were found to have relatively lower levels of perceived stress compared to caregivers with lower levels of education. Analysis suggests that this may be related to the enhanced information-gathering and comprehension abilities of highly educated carers. This enables them to better understand treatment plans and actively participate in decision-making. For caregivers with higher educational attainment, this capacity enables them to draw on more resources and strategies to manage and alleviate stress when facing illness-related challenges. This finding highlights the important role that parental educational attainment plays in managing childhood illness (27), indicating that educational level may significantly impact parents’ ability to cope with stress and challenges. These findings highlight the importance of understanding the concerns of caregivers of sick children. Future studies could explore whether providing informational support combined with multidisciplinary care coordination may help families manage complex care processes. For example, a nurse or dedicated care coordinator could potentially assist families in arranging appointments with different specialists (e.g., ophthalmologists, dermatologists, neurologists, and psychiatrists) and coordinating with social services. Such approaches may be evaluated in future research to determine their effectiveness in reducing caregivers’ negative emotions and psychological stress.

Caregivers of female patients with SWS have higher perceived stress

In this study, caregivers of female children exhibited higher levels of perceived stress compared to caregivers of male children. The prominent feature of children with SWS is port-wine birthmark, which significantly affects their appearance. Caregivers of female children may experience greater psychological pressure, potentially due to heightened concerns about the child’s appearance. This could be influenced by societal perceptions of gender and appearance, which may contribute to a more pronounced emotional response in caregivers. Studies have found that excessive perceived stress may have a negative impact on individual mental health (28,29). Caregivers of sick children are their children’s primary caregivers and play a crucial role in their health. Female children (compared to male children) were associated with an increase of 0.822 points in perceived stress scores, indicating a moderate effect size. Although the increase in stress due to gender might appear small, it is noteworthy that even such a moderate effect could have significant implications for caregivers’ emotional well-being, particularly in clinical settings where the early identification of stress factors is crucial. Therefore, reducing caregivers’ perceived stress is crucial for maintaining the overall well-being of children with SWS. Considering the additional psychological burden that SWS may bring regarding their child’s appearance, caregivers of female children, in particular, should receive increased attention and support. By offering psychological counselling and emotional support, as well as practical assistance such as care coordination and help with arranging appointments, healthcare professionals can support these caregivers in managing stress more effectively. This creates a healthier and more supportive environment for their children to grow up in.

Caregivers who believe their child’s disease is severe have higher perceived stress

This study found that caregivers who have a deep understanding and concern about the severity of their child’s disease often experience higher perceived stress. This emphasises the close relationship between the depth of understanding of the child’s condition and the psychological pressure on caregivers. SWS is a rare disease, and its complications include seizures, glaucoma, and vision loss (30). The long treatment period and uncertain treatment outcomes lead to high perceived stress among caregivers of children with SWS. These parents have higher levels of disease uncertainty (22), which may increase their perceived stress. Yang et al. (31) found that clown care can alleviate negative emotions among the caregivers of children undergoing surgery or treatment. Therefore, implementing effective nursing interventions, such as clown care, may help to alleviate negative emotions and perceived stress among caregivers of children with SWS.

Caregivers of children with SWS who are diagnosed with glaucoma through other means exhibit higher levels of perceived stress

The findings of this study show that parents of children with SWS who were diagnosed through other channels experience significantly higher levels of perceived stress than parents who noticed abnormalities in their child’s eyes and sought medical attention to confirm a glaucoma diagnosis. This could be due to several factors, including the unexpected nature of the diagnosis; caregivers may not have anticipated receiving an eye disease diagnosis following a visit relating to cosmetic concerns. The referral process itself may also indicate a delay in recognising the condition, which could contribute to increased anxiety and stress. Moreover, no therapy is currently available to alleviate SWS, and treatments mainly focus on the occurrence of symptoms or complications, often requiring multidisciplinary methods for diagnosis and treatment (4). The referral process may have resulted in a delayed diagnosis of the child’s condition, thereby increasing the stress experienced by their carers. Therefore, to help carers of sick children manage stress more effectively, healthcare teams should implement structured strategies. This could include establishing online health information platforms (32). This may ensure that carers receive continuous, practical and timely support throughout the entire treatment process.

Limitations

This study has several limitations: firstly, the data were obtained from only one hospital, so the findings may be biased. In the future, we plan to conduct a multi-regional, multicentre study using random sampling and establish long-term follow-up to further validate the reliability of this study’s findings. During the data collection phase, the study failed to incorporate key clinical information, including patients’ treatments, the severity of epileptic seizures and developmental delays. Consequently, a detailed analysis of these disease-related characteristics was not possible. Future research should improve the collection of clinical data to better reflect disease characteristics and the associated clinical burden. Moreover, this study focused on Han Chinese caregivers. Cultural concepts prevalent within Han Chinese families, such as collectivism and specific beliefs about the causes of illness, may affect how caregivers experience and report stress. Consequently, these findings may be difficult to generalise across multi-ethnic populations. It is therefore recommended that future research incorporates more heterogeneous samples in order to further explore these cultural moderating factors. Additionally, caregivers may develop mental health conditions as a result of their children’s SWS diagnosis. This could be considered a potential limitation of the study.

Conclusions

This study’s findings indicate that the level of perceived stress experienced by caregivers of children with SWS is mainly influenced by the following factors: positive coping, anxiety, depressive symptoms, educational level, child gender, perceived disease severity, and methods for detecting eye diseases. The ranking of these factors provides clear guidance, suggesting that nursing staff should adopt targeted coping strategies to help caregivers of sick children effectively reduce their perceived stress and improve the quality of life of themselves and their families. Considering the rare nature of the disease, we recognise that the sample size of this study is relatively adequate. However, conducting multicentre studies in future would enhance the generalisability and reliability of the findings. Therefore, we suggest that future research adopt a multi-centre combined approach and expand the sample size to obtain more representative and extensive research results and provide richer and deeper insights into nursing practice.

Acknowledgments

We extend our sincere thanks to Ms. Mingyue Zhang for her expert advice and guidance throughout this study. We also thank all caregivers of the paediatric patients who participated, whose active cooperation enabled the successful completion of this study.

Footnote

Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-1-0035/rc

Data Sharing Statement: Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-1-0035/dss

Peer Review File: Available at https://tp.amegroups.com/article/view/10.21037/tp-2026-1-0035/prf

Funding: This work was supported by the Nursing Program of Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine (Nos. JYHL2024ZD03-Z1 and JYHL2024ZD03); the Research Nurse of Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine (No. JYYJX202407); Shanghai Jiao Tong University School of Medicine: Nursing Development Program (No. SJTUHLXK2024); and National Natural Science Foundation of China (No. 82471065).

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://tp.amegroups.com/article/view/10.21037/tp-2026-1-0035/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. This study was approved by the Institutional Review Board of Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine (approval No. SH9H-2022-T50-1), and informed consent for this retrospective analysis was waived.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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