Prevalence and psychosocial correlates of depression, anxiety and stress among caregivers of children with childhood-onset systemic lupus erythematosus in China: a cross-sectional study

Abstract

Objectives

To investigate the prevalence of depression, anxiety and stress among primary caregivers of children with childhood-onset systemic lupus erythematosus (cSLE) in China and to explore their psychosocial correlates based on the stress process model.

Design

A cross-sectional study.

Setting

3 tertiary public hospitals in Hunan Province, China.

Participants

242 primary caregivers were invited, and 211 completed the study (87.2% response rate). Convenience sampling was used. Eligible participants were unpaid adult caregivers (aged ≥18 years) of children (aged <18 years) with cSLE, providing care for >1 month. Exclusion criteria included inability to complete questionnaires independently, cognitive impairment due to major physical or mental disorders and current participation in other psychological interventions.

Primary and secondary outcome measures

Primary outcomes (depression, anxiety and stress) were measured using the Depression Anxiety and Stress Scale-21. Correlates included threat/challenge appraisal, coping style and perceived social support.

Results

Among 211 caregivers (mean age 40.55±8.22 years; 77.3% female), 31.8% reported depression, 27.0% anxiety and 24.2% stress. Higher threat appraisal was consistently associated with depression (regression coefficients (B) =1.012, p<0.001), anxiety (B=0.514, p<0.001) and stress (B=1.091, p<0.001). A higher number of hospitalisations was associated with higher depression (B=0.118, p=0.005) and anxiety (B=0.099, p=0.012). Anxiety and stress were also associated with younger child age (anxiety: B=−0.339, p=0.028; stress: B=−0.393, p=0.024), lower challenge appraisal (anxiety: B=−0.252, p=0.044; stress: B=−0.421, p=0.002) and negative coping (anxiety: B=0.492, p<0.001; stress: B=0.311, p=0.019).

Conclusions

Caregivers of children with cSLE face substantial psychological distress, with threat perception and negative coping as key modifiable correlates. Interventions to reshape cognitive appraisal and promote adaptive coping, alongside expanded health insurance coverage and optimised caregiving role distribution, are needed to alleviate caregiver burden.

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• Adopted the stress process model as a theoretical framework, providing a clear causal logic for exploring psychosocial correlates of caregivers’ mental health.

• Used validated Chinese versions of standardised scales (eg, Depression Anxiety and Stress Scale-21, Stress Appraisal Measure and Simplified Coping Style Questionnaire) with confirmed reliability, ensuring data collection rigour.

• Employed convenience sampling, which may limit the representativeness of the sample and generalisability of findings.

• The cross-sectional design precludes establishing causal relationships between variables.

• Restricted to three tertiary hospitals in a single Chinese province, potentially limiting the external validity to broader populations.

Introduction

Childhood-onset systemic lupus erythematosus (cSLE) is a chronic autoimmune disease that manifests as multisystem inflammation before the age of 18 years.¹ In China, the overall prevalence of systemic lupus erythematosus (SLE) ranges from 30 to 70 cases per 100 000 individuals, with cSLE accounting for 10%–20% of these cases.² Compared with adult-onset SLE (aSLE), cSLE often presents with more aggressive progression, characterised by elevated disease activity, greater drug burden and more severe multiorgan involvement, alongside higher rates of morbidity and mortality.³ The recurrent, unpredictable flares of cSLE necessitate continuous symptom monitoring—a responsibility predominantly assumed by caregivers,⁴ as children’s cognitive immaturity limits their ability to detect disease progression. Given cSLE’s inherent complexity and its impact on children’s physical and psychological well-being,⁵ caregiver involvement not only improves children’s health-related quality of life but also prevents disease progression.

Notably, previous studies have shown that caregivers of children with chronic illness experienced pronounced levels of depression and anxiety,^{6 7} and emerging evidence suggests similar concerns among caregivers of children with paediatric rheumatic diseases. For example, a study of caregivers of children with juvenile idiopathic arthritis in India found that lower socioeconomic status was associated with greater burden.⁸ Among cSLE caregivers, hospitalisations have also been correlated with higher caregiver burden and poorer mental health.⁹ A recent Chinese cross-sectional study of 173 caregivers of children with SLE reported that 30.6% had depressive symptoms and 10.4% met the criteria for major depression.¹⁰ These findings suggest that caregivers of children with cSLE may be particularly vulnerable to psychological distress. This vulnerability may be related to uncertainty arising from limited disease-related information and the unpredictable course of cSLE,⁴ both of which have been associated with depression and anxiety.¹¹ Additionally, the cornerstone of cSLE management typically involves pharmacological treatment. However, the side effects of long-term medication usage are detrimental to children during their growth phase, thereby exacerbating the psychological strain experienced by both the children and their caregivers.¹²

Caregivers’ psychological distress can not only negatively impact their health but also affect children’s mental health through maladaptive parenting behaviours or emotional transmission, thereby influencing the children’s quality of life and establishing a bidirectional distress cycle.⁷ Given this profound impact, it is crucial to monitor the psychological state of caregivers of children with cSLE and promptly alleviate their psychological distress, which is vital for improving caregivers’ mental health and breaking the cycle of distress to enhance children’s outcomes. Moreover, such monitoring may provide valuable insights for cross-cultural comparative studies, helping international scholars better understand how different cultures cope with caregivers’ mental health and supporting the development of targeted global health interventions and policies.¹³ While existing studies have largely focused on the children themselves, such as children’s clinical outcomes, mental health, quality of life, nursing strategies, treatment adherence and disease self-management,^{4 14} less attention has been paid to the mental health and influencing factors among caregivers of children with cSLE.

The stress process model (SPM) posits that individuals’ physical and mental health are shaped not only by stressful events but also by how these events are perceived, the coping strategies employed and the availability of social support.¹⁵ Recent studies applying SPM to caregivers of children with chronic or serious illnesses have supported the relevance of disease-related stressors, financial strain and caregiving demands to parental psychological distress.^{16 17} Another study grounded in SPM found that using emotional support as a coping strategy was linked to more positive caregiving experiences, whereas venting was linked to poorer outcomes.¹⁸ Social support may further shape these relationships by buffering the psychological burden of caregiving and influencing how caregivers appraise and respond to illness-related stressors.¹⁹

Cultural context may also moderate caregiving experiences. In East Asian societies, caregiving is often shaped by Confucian values, including family responsibility, filial obligation and the expectation of family harmony.²⁰ Evidence from studies of Chinese parents caring for children with developmental or chronic conditions suggests that caregiving responsibilities are often shaped by traditional family expectations and may be unequally distributed within households, particularly among mothers.²¹ These cultural values may affect how caregivers appraise their role, which coping strategies they adopt and whether they seek social support.

Therefore, guided by the SPM and informed by the Chinese caregiving context, the present study aimed to assess mental health among caregivers of children with cSLE in China and its psychosocial correlates. In this study, cSLE disease activity was considered a caregiving stressor and its relationships with caregivers’ stress appraisal, coping style, perceived social support and their mental health were examined.

Methods

Study design and participants

This cross-sectional study was conducted at three general public hospitals in Changsha, Hunan Province, China, from May 2023 to January 2024. All patients fulfilled the Systemic Lupus International Collaborating Clinics classification criteria for SLE²² and the diagnosis was made by paediatric rheumatologists. The inclusion criteria were as follows: (a) the primary family caregiver (aged ≥18 years) of (b) a child (aged <18 years) living with cSLE and (c) who was involved in the caregiving process for >1 month and (d) was not paid to care for the child. However, caregivers who were unable to complete the questionnaire independently, had a history of major physical problems or mental disorders that might affect cognitive function or were participating in other psychological intervention programmes were excluded.

Given that a generalised linear model was used for analysis, the sample size was initially guided by the rule of thumb of 5–10 cases per independent variable.²³ With 19 independent variables considered at the planning stage, this suggested a minimum sample size of 95–190 participants. The final sample of 211 exceeded this requirement.

Instruments

Sociodemographic data included patients’ age, gender, duration of cSLE, medical payment, the number of hospitalisations and the number of disease recurrences in the past year, as well as primary caregivers’ age, gender, relationship with the child, daily care hours, presence or absence of co-caregivers, employment status and knowledge of cSLE. Caregivers’ knowledge of cSLE was assessed using a single self-rated item: ‘How would you rate your level of knowledge about cSLE?’ Responses were scored on a scale from 0 to 10, with higher scores indicating greater self-perceived knowledge of the disease (online supplemental file 1).

The Depression Anxiety and Stress Scale-21 (DASS-21) was developed to assess the emotional states of depression, anxiety and stress. This study used the simplified Chinese version of DASS-21, comprising 21 items on three subscales (each with 7 items) of depression, anxiety and stress.²⁴ Each item was scored using a 4-point Likert scale ranging from 0 (‘Does not apply to me at all’) to 3 (‘Applies to me very much’). Higher subscale totals mean more severe mental health problems. The DASS-21 has been shown to have high internal consistency in Chinese populations, with Cronbach’s α of the three subscales being 0.92, 0.92 and 0.93, respectively, and 0.97 overall.

SLE Disease Activity Score (SLE-DAS) is a validated instrument for calculating disease activity, with 17 weighted clinical and laboratory parameters, including continuous measures for proteinuria, leucopenia, thrombocytopaenia and arthritis, with the other items (eg, haemolytic anaemia, systemic vasculitis and cardiopulmonary involvement) scored dichotomously.²⁵ SLE-DAS is divided into three categories: remission (SLE-DAS≤2.08), mild (2.08<SLE-DAS≤ 7.64) and moderate/severe (SLE-DAS>7.64). Compared with SLEDAI-2000, the SLE-DAS had a higher accuracy in measuring SLE disease activity, better sensitivity and a higher predictive value in assessing damage accrual.

The Stress Appraisal Measure (SAM) was used to measure the individual’s cognitive evaluation of stress events.²⁶ The scale combines the six dimensions of primary appraisal (challenge, threat and centrality), secondary appraisal (controllable-by-self, controllable-by-others and uncontrollable-by-anyone) and an overall perceived stressfulness scale. Each dimension and subscale has 4 items, a total of 28 items. Each item was scored on a 5-point Likert scale, ranging from 1 (none) to 5 (very much). This study used two dimensions of ‘challenge’ and ‘threat’. The ‘challenge’ dimension measures individuals’ perception of potential positive effects or growth opportunities in stress events, while the ‘threat’ dimension assesses individuals’ perception of the potential negative effects of stress events. The Chinese version of Cronbach’s α for the ‘challenge’ and ‘threat’ dimensions were 0.626 and 0.772, respectively, indicating satisfactory reliability.²⁷

The Perceived Social Support Scale (PSSS) is a 12-item self-reported inventory that emphasises perceived social support from family, friends and significant others and was translated into Chinese by Huang in 1996.¹⁵ Each item is rated on a 7-point Likert scale (1=strongly disagree; 7=strongly agree), with higher aggregate scores indicating higher levels of perceived support. The overall Cronbach’s α for the scale was 0.88, with the dimensions of family support, friend support and other support scoring 0.87, 0.85 and 0.91, respectively.

The Simplified Coping Style Questionnaire (SCSQ) was used to evaluate an individual’s coping style, developed by Yaning,²⁸ based on previous research results and Chinese cultural contexts. The SCSQ is a 4-point Likert scale (0=never; 3=very often) comprising 20 items, distinguishing between positive coping (items 1–12) and negative coping (items 13–20). Higher total scores indicate a prevalent use of this coping style. Widely adopted in China, the SCSQ demonstrated strong reliability and validity in our study, with Cronbach’s α values of 0.89 for the positive subscale and 0.80 for the negative subscale.

Data collection

Convenience sampling was adopted for this study. Eligible participants were recruited from three general public hospitals in Changsha, Hunan Province, China, from May 2023 to January 2024. These three hospitals are regarded as authoritative institutions for treating SLE, one of which is a specialised children’s hospital. Consequently, they are the preferred choice for most children with cSLE from Hunan Province and surrounding cities.

The research team initially reached out to the head nurses to secure their understanding and support for the study. The head nurses and nursing staff played a key role in assisting with the recruitment process. Recruitment was conducted by displaying posters that detailed the study’s purpose, content, possible benefits and risks and included the researcher’s contact information. Interested participants contacted the researchers directly using the provided contact details. The researcher then explained the study face-to-face and informed them that their decision to participate or not would not affect their child’s treatment. Once informed consent was obtained, the questionnaires were collected in a one-on-one, face-to-face format, with standardised instructions to guide participants through completion. To ensure data authenticity and validity, the researchers checked the completeness of the questionnaires on-site.

Data analysis

Data were analysed using the SPSS V.26.0 statistical software. Descriptive statistics, including frequency, percentage, mean and SD, were used to present the characteristics of the patients and caregivers. For univariate analysis, the Mann-Whitney U test was used for dichotomous variables and the Kruskal-Wallis H test was used for multiclassification variables. Intercorrelations between parameters were computed using Spearman’s correlation analysis. Variables with a p value<0.05 in the univariate and correlation analyses were subsequently included in a generalised linear model with a Gaussian distribution and identity link function to estimate associations between variables and caregivers’ mental health outcomes using regression coefficients (B) and 95% CIs. No missing data were present, and all variance inflation factors (VIFs) were below 1.5, indicating no multicollinearity.

Patient and public involvement

Patients and/or the public were not involved in the design, conduct, reporting or dissemination plans of this research.

Results

Characteristics of children with cSLE and primary caregivers

In this study, 242 primary caregivers were invited. A total of 211 participants completed the questionnaire, yielding a response rate of 87.2%. The demographic characteristics and disease-related information are detailed in tables1 2. A majority of these children were female (77.3%). Their mean age was 12.16 years (SD=3.09), and the average duration of cSLE was 23.89 months (SD=31.77). In terms of disease activity, 37.5% of them were in remission, 27.0% had mild disease activity and 35.5% experienced moderate/severe disease activity. Among the 211 primary caregivers, 48 were male and 163 were female. Their mean age was 40.55 years (SD=8.22). The majority of these children were primarily cared for by their mothers (70.1%). Additionally, the caregivers’ average knowledge of cSLE was moderate, with a mean score of 5.29 on a scale ranging from 0 to 10.

Table 1. Descriptive analysis of categorical variables (n=211).

Variables	Category	N	Percentage
Children with cSLE
Gender	Male	48	22.7
	Female	163	77.3
Level of SLE-DAS	Remission	79	37.5
	Mild	57	27.0
	Moderate/severe	75	35.5
Primary caregiver
Gender	Male	48	22.7
	Female	163	77.3
Relationship with the child	Father	42	19.9
	Mother	148	70.1
	Others	21	10.0
Presence or absence of co-caregivers	Presence	133	63.0
	Absence	78	37.0
Daily care hours	<5	56	26.5
	5–8	35	16.6
	9–12	42	19.9
	13–24	78	37.0
Medical payment	Health insurance	178	84.4
	Out-of-pocket	33	15.6
Employment status	Employed	113	53.6
	Unemployment	98	46.4

cSLE, childhood-onset systemic lupus erythematosus; SLE, systemic lupus erythematosus; SLE-DAS, SLE Disease Activity Score.

Table 2. Descriptive analysis of continuous variables (n=211).

Variables	Minimum	Maximum	Mean	SD
Children with cSLE
Age (years)	5	18	12.16	3.09
Duration of cSLE (month)	0.5	184	23.89	31.77
Number of hospitalisations	1	120	5.62	13.09
Number of disease recurrences in the past year	0	6	0.83	1.23
Primary caregiver
Age (years)	18	70	40.55	8.22
Knowledge of cSLE	0	10	5.29	2.91
SAM
Threat appraisal	4	20	10.17	3.91
Challenge appraisal	4	20	9.02	4.08
PSSS	23	83	56.41	11.55
SCSQ
Positive coping	7	36	19.00	6.19
Negative coping	0	22	8.18	4.24

cSLE, childhood-onset systemic lupus erythematosus; PSSS, Perceived Social Support Scale; SAM, Stress Appraisal Measure; SCSQ, Simplified Coping Style Questionnaire.

Primary caregivers’ mental health

The mean scores on the depression, anxiety and stress subscales of the DASS-21 were 7.23 (SD=9.204), 5.80 (SD=7.994) and 9.41 (SD=9.419), respectively. Among the primary caregivers of children with cSLE, 31.8% exhibited symptoms of depression, 27.0% showed symptoms of anxiety and 24.2% reported symptoms of stress, each to varying degrees. A detailed distribution of the different levels of depression, anxiety and stress is presented in figure 1.

Figure 1. Primary caregivers’ depression, anxiety and stress.

Factors influencing caregivers’ mental health

Univariate analysis

Univariate analysis was used to examine the correlations between sociodemographic data and the scores on the depression, anxiety and stress subscales. The results, presented in online supplemental table 1, indicated no significant associations between the child’s gender, caregivers’ gender, relationship with the child as well as employment status and the caregivers’ scores of depression, anxiety and stress subscales. The Mann-Whitney U test revealed significant differences in depression subscale scores across different medical payment methods (Z=−2.488, p=0.013) and the presence or absence of co-caregivers (Z=−2.142, p=0.032). In addition, the presence or absence of co-caregivers (Z=−1.997, p=0.046) was significantly associated with the stress subscale scores. Caregivers who paid out-of-pocket reported higher depression scores, while those with co-caregivers had higher scores for both depression and stress.

Correlational analysis

Spearman correlation analysis indicated that scores for depression, anxiety and stress were positively correlated with the number of hospitalisations, disease recurrences in the past year, threat appraisal and negative coping. Conversely, they were negatively correlated with the child’s age, the caregiver’s knowledge of cSLE and challenge appraisal.

Additionally, caregivers’ depression subscale scores showed positive correlations with SLE-DAS level (Spearman’s correlation coefficient, r_s=0.234, p=0.001) and daily care hours (r_s=0.137, p=0.047), while being negatively correlated with caregivers’ age (r_s=−0.172, p=0.012) and social support (r_s=−0.198, p=0.004). Similarly, anxiety subscale scores were negatively correlated with social support (r_s=−0.163, p=0.018), and stress subscale scores were positively correlated with SLE-DAS level (r_s=0.187, p=0.007). Further details can be found in table 3.

Table 3. Correlational analysis of caregivers’ mental health.

Variables	Depression		Anxiety		Stress
	rs	P value	rs	P value	rs	P value
Child’s age (years)	−0.161	0.019*	−0.144	0.037*	−0.192	0.005*
Duration of cSLE	−0.073	0.291	0.060	0.386	−0.043	0.532
Number of hospitalisations	0.163	0.018*	0.197	0.004*	0.185	0.007*
Number of disease recurrences	0.235	0.001*	0.217	0.002*	0.195	0.004*
Level of SLE-DAS	0.234	0.001*	0.124	0.071	0.187	0.007*
Caregiver’s age (years)	−0.172	0.012*	−0.087	0.208	−0.089	0.196
Daily care hours	0.137	0.047*	0.089	0.200	0.103	0.134
Knowledge of cSLE	−0.188	0.006*	−0.195	0.004*	−0.164	0.017*
Threat appraisal	0.545	0.000*	0.455	0.000*	0.557	0.000*
Challenge appraisal	−0.361	0.000*	−0.388	0.000*	−0.394	0.000*
PSSS	−0.198	0.004*	−0.163	0.018*	−0.067	0.336
Positive coping	−0.027	0.697	−0.002	0.973	0.049	0.480
Negative coping	0.333	0.000*	0.367	0.000*	0.357	0.000*

^*Statistically significant.

cSLE, childhood-onset systemic lupus erythematosus; PSSS, Perceived Social Support Scale; SLE, systemic lupus erythematosus; SLE-DAS, SLE Disease Activity Score.

Generalised linear model

Categorical variables were coded as dummy variables. The generalised linear model indicated six factors associated with caregivers’ depression, including health insurance (B=−3.578, p=0.010), absence of co-caregivers (B=−3.317, p=0.001), daily care hours<5 (B=−2.688, p=0.038), number of hospitalisations (B=0.118, p=0.005), caregivers’ age (B=−0.178, p=0.004) and threat appraisal (B=1.012, p<0.001) (figure 2).

Figure 2. Generalised linear model for depression, anxiety and stress of caregivers. B, regression coefficient. *indicates that p<0.05 is statistically significant. cSLE, childhood-onset systemic lupus erythematosus; PSSS, Perceived Social Support Scale; SLE, systemic lupus erythematosus; SLE-DAS, SLE Disease Activity Score.

For caregivers’ anxiety (as shown in figure 1), the number of hospitalisations (B=0.099, p=0.012), threat appraisal (B=0.514, p<0.001) and negative coping (B=0.492, p<0.001) were positively associated with anxiety subscale scores. Conversely, the child’s age (B=−0.339, p=0.028) and challenge appraisal (B=−0.252, p=0.044) were negatively associated with the anxiety subscale scores.

Figure 2 indicates that five factors are significantly associated with caregivers’ stress. Higher stress scores among caregivers were associated with younger child’s age (B=−0.393, p=0.024), higher threat appraisal (B=1.091, p<0.001), lower challenge appraisal (B=−0.421, p=0.002), propensity for negative coping (B=0.311, p=0.019) and presence of co-caregivers (B=2.603, p=0.011).

Discussion

Consistent with previous studies, this study reveals that primary caregivers of children with cSLE in China commonly experience significant mental health problems.^{29 30} A recent cross-sectional study of 173 caregivers of children with SLE in China reported similar findings: 30.6% had depressive symptoms, and 10.4% met the criteria for major depression on the World Health Organization-Five Well-Being Index (WHO-5).¹⁰ It indicates that children with cSLE impose a substantial burden on their families, particularly on primary caregivers, which may contribute to corresponding mental health crises. In our study, 31.8%, 27.0% and 24.2% of caregivers exhibited varying degrees of depression, anxiety and stress-related symptoms, respectively, which is significantly higher than the rate of mental health issues among caregivers of healthy children. A study of the National Survey of Children’s Health in the USA showed that 7.2% of children had caregivers with poor mental health.³¹ However, unlike our finding, Uzuner et al⁹ did not observe a difference in the mental health status between caregivers of cSLE children and healthy controls. This discrepancy could be due to sample differences; specifically, Uzuner et al’s study included only 34 samples with an average disease duration of 50.44±45.88 months, significantly longer than that in our study (23.89±31.77 months). Caregivers might be more likely to recover from the impact of their child’s illness when the disease duration is longer. Interestingly, the prevalence reported by Liu³⁰ is slightly higher than in our study, which may be attributed to differences in the research instruments used.

This study found that the child’s age is a significant correlate of caregivers’ anxiety and stress levels, with younger children being associated with higher levels of anxiety and stress among their caregivers. This correlation may be related to the characteristics of cSLE, which tends to have higher disease activity at younger onset ages.^{32 33} Therefore, younger children with cSLE are more likely to experience complex conditions and require frequent treatments. Additionally, it is undeniable that younger children are typically more dependent on their caregivers, necessitating greater assistance and care in daily life and medical management.³⁴ This high level of dependency is associated with caregivers investing substantial time and energy, which may increase their caregiving responsibilities. These factors collectively are associated with elevated anxiety and stress levels among caregivers. Therefore, caregivers of young children with cSLE need additional attention and support, such as assistance with their daily tasks, enabling them to focus more on disease-related care.

Our study provides new insights into the relationship between the number of hospitalisations of children with cSLE and the mental health of their caregivers. We found a positive correlation between the number of hospitalisations and higher levels of depression and anxiety in caregivers. This could be explained by the fact that, as hospitalisations increase, caregivers perceive a greater caregiving burden, which in turn may contribute to elevated levels of depression and anxiety.³⁵ Furthermore, frequent hospitalisations may indicate greater disease severity or poor disease control, which may be associated with feelings of helplessness and anxiety among caregivers. Uzuner et al⁹ have only identified a relationship between the number of hospitalisations and caregiving burden, as well as between caregiving burden and levels of depression and anxiety, but did not establish a direct link between the number of hospitalisations and the mental health outcomes of caregivers. Tsironi and Koulierakis³⁶ found that the number of hospitalisations was positively associated with caregiver stress, a relationship not observed in our study. Given these findings, future research would benefit from mechanistic studies that explore how an increasing number of hospitalisations affects caregivers’ mental health. Specifically, understanding whether hospitalisations indirectly impact psychological well-being through an increased caregiving burden, as well as how caregivers cope with the stress of repeated hospitalisations, would provide valuable insights.

Moreover, in our study, caregivers who bore the cost of cSLE treatment out of pocket exhibited higher levels of depression compared with those with health insurance coverage. This may be explained by the significant financial burden associated with cSLE care, particularly the high costs of targeted biologic therapies. Financial strain is a well-established risk factor for depression.³⁷ Fei et al also found that perceived financial burden was associated with lower health-related quality of life in children with SLE, further highlighting the pervasive impact of financial strain on family well-being.¹⁰ These findings underscore the need to expand China’s health insurance reimbursement policies to better support cSLE treatments. Currently, only one biologic, belimumab, which treats both cSLE and aSLE, is fully covered under the national insurance in China. As the economic burden of SLE care has also been reported internationally, our findings may be relevant to other resource-limited health systems where treatment-related costs may place psychological strain on families.^{38 39} Expanding reimbursement coverage could help alleviate this burden for caregivers. In addition to financial strain, caregiver age and daily caregiving hours also emerged as significant correlates of depression levels. Younger caregivers in our study reported higher depression levels, which may be attributed to their relative immaturity in emotional regulation and stress management.⁴⁰ Previous research suggests that as caregivers age, they tend to develop greater acceptance of their loved one’s illness or become better equipped to access social support. The caregivers’ average age was 40.55 years in our study, a stage of life often balancing multiple social roles and responsibilities, such as being a parent, child and employee. Notably, many of these caregivers are part of the ‘sandwich generation’ under China’s one-child policy implemented between 1979 and 2014 and are responsible for caring for both their sick children and four elderly parents. The lack of siblings exacerbates this caregiving burden, as they bear the full responsibility for both caregiving roles.²⁰ This multilayered caregiving pressure, compounded by work-family role conflicts, may be associated with higher levels of depression in this population. Additionally, caregivers who provided care for fewer than 5 hours per day exhibited lower levels of depression compared with those caring for 13–24 hours daily. This finding aligns with previous research, such as that of Derajew et al,⁴¹ who reported that caregivers with daily caregiving durations exceeding 6 hours faced a significantly higher risk of developing depression. This difference may be due to a reduced caregiving burden and more available time to manage other responsibilities, such as work and personal roles. Numerous studies have demonstrated the negative impact of caregiving responsibilities on work hours, productivity and activities outside of caregiving.^{42 43} These findings highlight the importance of establishing and expanding respite care services offered by public welfare organisations. Encouraging healthcare providers to actively link caregivers with these social resources could help alleviate some of the psychological burden by providing regular breaks from caregiving responsibilities.

In contrast to the study on caregivers of children with other chronic illnesses, the presence of co-caregivers in cSLE care did not alleviate the psychological strain of the primary caregiver.⁴⁴ On the contrary, it may have contributed to increased levels of depression and stress. This difference could stem from the unique characteristics of cSLE, such as unpredictable progression, multiorgan involvement and substantial clinical variability, all of which necessitate highly individualised management. These complexities are associated with communication challenges and decision-making conflicts among caregivers and may relate to greater psychological strain and uncertainty experienced by the primary caregiver, which in turn may be associated with elevated symptoms of depression.⁴⁵ Additionally, the uneven distribution of responsibility—such as the feminisation of caregiving roles—may foster feelings of inequity and isolation, thereby aggravating stress. As Spurr et al observed, mothers often bear the primary caregiving responsibilities, with many fathers perceiving this as the natural order and assuming that mothers are more comfortable completing the tasks.⁴⁶ Such expectations and societal pressures may intensify the stress experienced by mothers as the primary caregivers. These findings suggest that merely increasing the number of caregivers may not be sufficient to improve the mental health of the primary caregiver. Instead, attention should be given to fostering effective communication within caregiving teams and balanced distribution of caregiving tasks. Future research could consider including other family members to examine how dyadic coping between primary caregivers and co-caregiving spouses affects caregiver mental health. This approach may uncover effective methods for reducing the psychological strain associated with cSLE caregiving.

Based on the SPM, we investigated the role of disease activity in cSLE as a potential stressor in relation to caregiver mental health. Consistent with previous studies, our univariate analysis found that higher disease activity was associated with increased symptoms of depression and stress in caregivers.^{47 48} However, this relationship became non-significant in the multivariate model. This may be due to the inclusion of other variables in the multivariate analysis, such as coping styles or financial strain, which may attenuate the association between disease activity and caregiver mental health. Future research should explore the interplay among these variables to better understand their relationships with caregiver outcomes.

Cognitive appraisal of caregiving tasks is closely related to caregiver mental health. In a meta-analysis of 13 studies and a qualitative review of 96 studies, Cousino and Hazen⁴⁹ found that negative cognitive appraisals in caregivers of children with chronic illnesses are associated with greater caregiving burden and poorer psychological adaptation in both caregivers and children. Conversely, positive appraisals may be associated with better adjustment. This aligns with our findings, which showed that higher threat appraisal was associated with higher symptoms of depression, anxiety and stress. In contrast, higher challenge appraisal was associated with lower anxiety and stress. This may be because perceiving caregiving as a threat typically reflects concerns over potential loss or harm and may be accompanied by uncertainty and fear about the future. On the other hand, viewing caregiving as a challenge implies that caregivers perceive the potential for positive outcomes or personal growth through their caregiving tasks.⁵⁰ For example, caregivers may believe that their efforts will lead to better health outcomes for the child or that they are improving their resilience and ability to cope with difficulties. This optimistic and proactive appraisal may represent a potentially protective psychosocial resource in caregivers’ psychological adaptation.⁴⁹

In addition, individuals’ cognitive appraisal is associated with their choice of coping strategies,⁵¹ and different coping strategies are associated with varying psychological outcomes. Positive coping strategies are often linked with better mental health, whereas negative coping strategies are associated with poorer psychological outcomes. Evidence from previous studies suggests that dysfunctional coping strategies may partially mediate the relationship between caregiver compassion and stress.⁵² In this context, caregivers who perceive caregiving tasks as a threat and doubt their ability to handle problems may be more inclined to adopt impulsive or avoidant coping strategies, which may be associated with higher levels of anxiety. While our study did not find a significant direct relationship between positive coping styles and caregiver mental health, we observed that caregivers who employed negative coping styles tended to experience higher levels of anxiety and stress. This may be because coping strategies have both short-term and long-term effects.⁵³ Positive coping strategies support long-term emotional regulation and role adaptation, but they may not adequately address immediate challenges.⁵³ In the Chinese cultural context, caregiving behaviours are strongly shaped by Confucian ethics, which emphasise maintaining family harmony. This cultural norm may partly explain why some caregivers tend to suppress their emotions rather than seek support or emotional expression during the caregiving process. Such avoidant or suppressive coping patterns may be associated with greater internalised distress and anxiety. Future studies should consider using longitudinal designs to examine the long-term effects of various coping styles on caregiver mental health, providing insight into targeted psychological interventions for caregivers of chronically ill children.

In this study, we examined the relationship between caregivers’ perceived social support and their mental health. Higher perceived social support was associated with lower levels of depression and anxiety in the univariate analysis. However, this relationship became non-significant in the multivariate model, suggesting that other variables may account for part of the association with caregiver mental health when considered collectively. Previous research has shown that social support is associated with caregivers’ coping strategies, with higher levels of support often co-occurring with more adaptive coping mechanisms.⁵⁴ Moreover, a supportive social environment has been associated with fewer adverse psychological outcomes in caregivers of patients with SLE. Future studies could further examine the pathways through which perceived social support, coping strategies and caregiving stressors are related to caregiver psychological outcomes.

Although our findings were derived from a Chinese sample, they carry implications for caregiver support in paediatric rheumatology care more broadly. Given the shared Confucian heritage and family-based caregiving norms in many East Asian societies, these findings may offer relevant insights for culturally similar settings; however, direct applicability should be assessed in future cross-cultural research. The high prevalence of depression, anxiety and stress among caregivers suggests that caregiver mental health deserves routine attention. A mental healthcare navigator programme tested in the USA suggests that integrated models of screening and support may be feasible in such settings.⁵⁵ In addition, the associations of threat appraisal and negative coping with psychological distress suggest that psychosocial interventions targeting cognitive appraisal and coping responses may be relevant across settings, although they should be culturally adapted. Finally, findings related to co-caregivers and health insurance highlight the importance of considering family caregiving arrangements and financial protection when designing caregiver support systems, as insurance coverage may be associated with reduced financial burden and better caregiver psychological well-being. These factors may vary across countries and health systems, and therefore warrant further cross-cultural and policy-oriented research. Such efforts may contribute to the development of context-sensitive approaches to supporting caregivers of children with cSLE.

Limitation and strength

Given the difficulty in reaching the target population, convenience sampling was used in three tertiary hospitals. This approach may introduce selection bias and limit generalisability, as children may have more severe disease burden and their caregivers may differ in healthcare-seeking behaviour, healthcare access and socioeconomic background from the broader caregiver population. In addition, given the study’s cultural specificity, caregiving norms in China need to be considered, and the findings may not generalise to other cultural groups. Second, the cross-sectional design restricts our ability to establish causal relationships between variables, highlighting the need for future longitudinal research to better understand these connections. Third, potential residual confounding cannot be excluded due to unmeasured socioeconomic factors, child symptom profiles and family structure characteristics. Nevertheless, this study offers significant strength as a pioneering effort to explore the mental health status of caregivers of children with cSLE in China, using the SPM as a theoretical framework.

Conclusions

This study represents a pioneering effort to examine the prevalence and associated factors of mental health problems among caregivers of children with cSLE in China, offering evidence to inform future interventions aimed at improving their psychological well-being. By highlighting the often-overlooked mental health needs of this population, these findings underscore the importance of routine screening and targeted support. However, longitudinal and mechanistic studies are still needed to investigate the long-term effects of different coping strategies and to clarify whether factors such as disease activity and social support may be indirectly associated with caregiver mental health through other pathways.

Data availability statement

Data are available upon reasonable request.