The mediating role of family burden in the association between family functioning and post-traumatic stress symptoms among parents of children with leukemia in Xinjiang, China: a cross-sectional study

doi:10.21203/rs.3.rs-4898823/v1

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Research Article

The mediating role of family burden in the association between family functioning and post-traumatic stress symptoms among parents of children with leukemia in Xinjiang, China: a cross-sectional study

https://doi.org/10.21203/rs.3.rs-4898823/v1

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Purpose

To analyze the current levels of post-traumatic stress symptoms (PTSS) among parents of children with leukemia in Xinjiang, China, and to explore the mediating role of family burden in the association between family function and PTSS.

Methods

A cross-sectional survey was conducted with 209 parents of children with leukemia from a tertiary hospital in Xinjiang, China. Participants completed a social demographic questionnaire, the Family APGAR Index, the Family Burden Scale of Disease, and the post-traumatic stress disorder Checklist for DSM-5 (PCL-5). Multiple linear regression analysis was performed to identify factors associated with PTSS. Structural equation modeling was used to verify the mediating effect of family burden.

Results

Family income, disease duration, family function, and family burden were significantly associated with PTSS. PTSS was negatively associated with family function (r = -0.571, P < 0.001) and positively associated with family burden (r = 0.523, P < 0.001). Family burden mediated the relationship between family functioning and PTSS. Family function had an indirect effect on PTSS through family burden (β = −0.173, 95% confidence interval: -0.296, -0.088, P = 0.001).

Conclusion

Our findings emphasize the mediating role of family burden in the relationship between family function and PTSS among parents of children with leukemia. Health professionals should develop targeted family-centered care measures to ameliorate family function and decrease family burden, thus improving parents’ mental health.

Post-traumatic stress symptoms

family functioning

family burden

parents

children with leukemia

Leukemia is the most common malignant tumor among children and poses a serious threat to their lives and health [1]. One study reported that the incidence of leukemia in Chinese children is 42.33 per million [2]. Although the progress of medical technology has increased the current 5-year survival rate of leukemia to over 80%, a diagnosis of leukemia in children remains a serious traumatic event for their parents [2]. As the primary caregivers of children, parents are often under tremendous psychological stress due to the long duration of leukemia treatment, witnessing the long-term physical pain of their child, and the high cost of medical care, which can easily lead to post-traumatic stress symptoms (PTSS) [3, 4].

PTSS refers to the symptoms of mental disorders that occur after an individual experiences traumatic events [5]. Studies have shown that the prevalence of PTSS in parents of children with cancer ranges from 4–75% (26% overall), which is consistently higher than in parents of children without cancer [6]. Increasing evidence suggests that the occurrence of PTSS may lead to long-term emotional disorders in parents of children with cancer and also affect the psychological state of children to a certain extent, which has adverse consequences for the treatment and rehabilitation of children [7, 8]. Therefore, it is imperative to explore the factors that cause PTSS and their underlying mechanisms.

The family is an important environment for personal growth and life; family-related factors play a significant role in PTSS development [9]. The onset of childhood leukemia not only negatively affects the psychology of family members but also severely affects the entire family system [10]. Family functioning reflects the capability of a family as a systemic whole to satisfy the diverse demands of its members [11]. Research findings suggest that family functioning is closely related to the psychological health of family members, and a good family system can effectively improve the negative emotions of its members and enhance their quality of life [12, 13]. A well-functioning family has intimate family relationships, better emotional expression and understanding among family members, stronger family cohesion, and the ability to resolve family difficulties, which can help family members overcome dilemmas better [14]. Existing studies indicate that the overall family functioning of children with cancer is poor compared to that of healthy children and that family dysfunction is a significant predictor of severe PTSS in parents of children undergoing cancer treatment [14, 15].

The diagnosis and treatment of childhood leukemia also place a huge burden on families. The family burden of disease refers to an individual’s perceptions of the adverse economic, social, emotional, and physical effects of the disease on the family and family members [16]. Previous research has suggested that parents of children with cancer experience huge financial [17], caregiving [18], and physical and psychological burdens [19]. The study found that family burden is also associated with an individual’s emotional symptoms; the heavier the family burden caused by the disease, the more likely they are to experience negative feelings [20]. Hence, managing family burdens is important for enhancing the psychological health of parents of children with leukemia. Family burden is influenced by family functioning. Good family functioning can serve as an effective support resource for mitigating the impact of illness on the family [21]. Multiple studies have suggested that family functioning has a negative relationship with family burden: the lower the level of family functioning, the more caregivers perceive the burden of the disease on the family [22, 23].

Based on the above description, we posit that family burden may be a mediating variable in the correlation between family functioning and PTSS in parents of children with leukemia. Hill’s ABC-X model of family stress theory [24] provides a specific path to understanding the possible mediating role of family burden. This model is a systematic framework for understanding the determinants of the association between stressful events and crisis outcomes. The model contains four key elements: stressor events (A), available resources (B), perceptions of events (C), and crises or maladjustment (X). According to this model, childhood leukemia is a stressful event that leads to the crisis of parental PTSS, while family functioning as an available resource interacts with the perception of family burden caused by the disease and can positively or negatively regulate this connection [24]. The conceptual framework of this study is illustrated in Fig. 1.

Nevertheless, there is a lack of research comprehensively discussing the relationship between family functioning, family burden, and PTSS in parents of children with leukemia. In addition, existing relevant studies on PTSS in parents of children with leukemia in China have mainly focused on economically developed regions, such as East and South China [25], whereas data on Xinjiang are currently lacking. The Xinjiang Uyghur Autonomous Region is located in northwest China and is a multi-ethnic settlement area of 1.6649 million square kilometers. It is the largest provincial administrative region in China, with Urumqi as its capital. However, the economic development in this region lags slightly behind that of other regions in China, and the distribution of medical resources is uneven. High-quality medical resources are concentrated in Urumqi, therefore, many children with leukemia frequently travel there for treatment. These factors may increase the family burden on children with leukemia and affect the family functioning and emotions of their parents.

This study focused on parents of children with leukemia in Xinjiang as research participants, aiming to explore the interaction between family functioning, family burden, and PTSS and to determine whether family burden mediates the effect of family functioning on PTSS. In light of the conceptual model and previous studies, we hypothesized that for parents of children with leukemia, higher family functioning is associated with lower PTSS (Hypothesis 1). We also hypothesized that this association is mediated through family burden (Hypothesis 2).

2.1 Study design and participants

This cross-sectional study was conducted from December 2023 to May 2024 using a convenience sampling method. It was performed in the Pediatric Hematology-Oncology Department of a public tertiary hospital in Urumqi, Xinjiang Uygur Autonomous Region, China, which accepts children with leukemia from the entire region. The recruitment of participants from the hospital ensured that the samples were sufficiently representative. The inclusion criteria were as follows: (a) parents aged over 18 years, (b) parents with a child diagnosed with leukemia and aged 0–18 years, (c) ability to speak fluent Chinese, and (d) voluntary participation in the study. The exclusion criteria were: (1) recent experience of other major changes, such as the death of family members, serious traffic accidents, and natural disasters (2) severe cognitive or psychiatric disorders. The study was approved by the Ethics Review Board of Xiangya School of Nursing, Central South University, and written informed consent was obtained from all patients.

The sample size was determined using G*Power 3.1.9.7 software. With a study power of 0.95 and an α of 0.05, the sample size was calculated to be 197. Estimating a missing rate of 15%, the final sample size required for this study was 227, which was sufficient for structural equation modeling.

2.2 Measures

2.2.1 Social demographic questionnaire

Social demographic information included parents’ age, sex, ethnicity, education level, residence, occupation, family income, number of children, and duration of childhood leukemia.

2.2.2 Family functioning

Family functioning was measured using the family APGAR Index developed by Smilkstein et al. [26]. The scale consists of five items evaluating five aspects of family functioning: adaptation, partnership, growth, affection, and cohesion. Each item is rated on a 3-point Likert scale ranging from 0 (never) to 2 (nearly always), with higher scores indicating better family functioning. The scale was translated into Chinese by Chau et al. and has been validated with excellent reliability and validity [27]. In this study, the Cronbach’s α of the family APGAR Index was 0.854.

2.2.3 Family burden

The Family Burden Scale of Disease (FBS) developed by Pai et al. [28] was used to assess parental perceptions of the burden of childhood leukemia on the family. This 24-item self-report questionnaire scores each item from 0 (no burden) to 2 (severe burden), with higher scores indicating a greater burden of the disease on the family. The Cronbach’s α of FBS in this study was 0.858.

2.2.4 PTSS

PTSS was assessed using the post-traumatic stress disorder checklist for DSM-5 (PCL-5) [29]. This scale is a self-report questionnaire based on DSM-5 criteria, including 20 items, with four dimensions: re-experiencing, avoidance, negative cognitive and emotional changes, and hyper-arousal. All items were scored using a 5-point Likert scale ranging from zero (not at all) to four (extremely severe), with higher scores indicating more severe PTSS. A cutoff score of 33 on the PCL-5 is a remarkable predictor of PTSS. The Chinese version of the PCL-5 has been widely used and has shown good reliability [30]. The Cronbach’s α for this scale in this study was 0.937.

2.3 Data collection

Four trained researchers were responsible for data collection. Potential participants were screened according to the inclusion and exclusion criteria and informed of the study’s purpose, significance, and procedures. After obtaining informed consent, the participants took approximately 20–30 minute to complete the questionnaire independently. The researchers clarified any questions regarding the study items. Each completed questionnaire was collected immediately, and missing information was reviewed to ensure data completeness. Finally, a small gift was given to the participants as appreciation for completing the questionnaire.

2.4 Data analysis

The data were analyzed using IBM SPSS version 28.0 and AMOS version 26.0. Descriptive statistics were used to report sociodemographic characteristics. Univariate analyses were used to examine the differences in PTSS scores across various sociodemographic characteristics. Pearson’s correlation analysis was conducted to investigate the relationships between family burden, family functioning, and parental PTSS. Multiple linear stepwise regression analysis was used to identify factors influencing PTSS in parents of children with leukemia. A two-tailed P value of < 0.05 was considered statistically significant.

A structural equation model with maximum likelihood estimation was employed to analyze the path and verify the mediation model. A bias-corrected bootstrap method with 5,000 samples was used to calculate the 95% confidence intervals (CIs) of the effects. The mediation effect was considered significant if the 95% CI did not include zero. The model fit indices include χ²/degrees of freedom (χ²/df), root mean square error of approximation (RMSEA), goodness-of-fit index (GFI), adjusted goodness-of-fit index (AGFI), Tucker–Lewis index (TLI), comparative fit index (CFI), and normed fit index (NFI). The criteria indicating a good model fit were the values of χ²/df < 3, RMSEA < 0.08, and GFI, AGFI, TLI, CFI, and NFI, all above 0.90.

3.1 Characteristics of participants

A total of 232 questionnaires were distributed, and 209 valid questionnaires were returned, resulting in a response rate of 90.08%. As shown in Table 1, the parents’ mean age was 37.16 years (SD = 3.27). Most participants were mothers (78.9%), and nearly half were Uyghur (44.5%). Approximately 60.7% of parents had an education below secondary school, 61.2% had a low household income, and 59.8% lived in rural areas. Moreover, nearly half of the children were within 6 months of a leukemia diagnosis (42.6%).

The results of the univariate analysis revealed significant differences in PTSS scores in terms of parental gender, educational level, family income, and disease duration (P < 0.05; Table 1).

Table 1

Participants’ Characteristics (N = 209)
Variable	n (%)	PTSS, Mean ± SD	t/F	P
Parental gender			2.733	0.007
Male	44 (21.1)	24.11 ± 7.88
Female	165 (78.9)	27.68 ± 7.65
Parent Age (years)			0.377	0.686
≤ 30	34 (16.3)	29.50 ± 6.80
31–40	138 (66.0)	26.74 ± 7.90
≥ 41	37 (17.7)	27.54 ± 7.77
Ethnicity			0.012	0.988
Han	84 (40.2)	26.92 ± 8.72
Uygur	90 (43.1)	26.88 ± 6.86
Others	35 (16.7)	27.11 ± 8.07
Education level of parents			3.287	0.022
≤Primary school	42 (20.1)	29.57 ± 8.35
Middle school	85 (40.7)	26.74 ± 7.00
High school	52 (24.9)	26.90 ± 7.47
≥College	30 (14.3)	23.83 ± 8.94
Residence			1.673	0.197
Urban	83 (39.7)	26.07 ± 8.01
Rural	126 (60.3)	27.50 ± 7.67
Occupation			2.158	0.075
Civil servant	37 (17.7)	25.16 ± 8.30
Merchant	43 (20.6)	25.53 ± 8.17
Worker	41 (19.6)	26.12 ± 8.48
Farmer	63 (30.1)	28.63 ± 7.15
Unemployed	25 (12.0)	29.00 ± 6.04
Family income (RMB/month)			6.353	<0.001
<3700	70 (33.5)	29.49 ± 7.30
3701–5000	59 (28.2)	27.25 ± 7.07
5001–7500	46 (22.0)	25.57 ± 7.57
>7501	34 (16.3)	22.97 ± 8.71
Numbers of children			1.895	0.153
1children	49 (23.4)	27.51 ± 8.82
2children	123 (58.9)	26.13 ± 7.18
≥ 3children	37 (17.7)	28.84 ± 8.30
Duration of disease (month)			22.72	<0.001
≤ 6	89 (42.6)	30.62 ± 6.81
7–12	74 (35.4)	23.86 ± 6.43
≥ 13	46 (22)	24.74 ± 8.81
Note: SD, standard deviation

3.2 Pearson correlations

The means and standard deviations (Mean ± SD) and Pearson correlation analyses among family functioning, family burden, and PTSS are shown in Table 2. The mean score of PTSS was 26.93 ± 7.82, and 36.4% (76 cases) of parents reporting a positive PTSS. The mean family functioning and family burden scores were 8.14 ± 1.91 and 22.79 ± 8.22, respectively. Pearson correlation analysis indicated that family functioning was negatively correlated with PTSS (r = -0.571, P < 0.001) and with family burden (r = -0.305, P < 0.001). Family burden was positively correlated with PTSS (r = 0.523, P < 0.001).

Table 2

Pearson correlations test between family functioning, family burden, and PTSS (N = 209)
Variable	Mean ± SD	1	2	3
1. PTSS	26.93 ± 7.82	1.000
2. Family functioning	8.14 ± 1.91	-0.571^***	1.000
3. Family burden	22.79 ± 8.22	0.523^***	-0.305^***	1.000
Note: SD, standard deviation; ***P < 0.001

3.3 Multiple linear regression analysis

Multivariate linear regression analysis indicated that the regression model for PTSS was significant (F = 20.161, P < 0.001). The variables significantly associated with PTSS were family income (β = − 0.173, P = 0.008), duration of disease (β = − 0.128, P = 0.013), family functioning (β = − 0.363, P < 0.001), and family burden (β = 0.349, P < 0.001). The variance inflation factors ranged from 1.178 to 1.712, indicating no collinearity in this model (Table 3).

Table 3

Multiple linear regression analysis of PTSS in parents of children with leukemia (N = 209)
Variables	B	SE	β	t	P
Constant	34.486	2.606		13.234	< 0.001
Parental gender	0.252	0.989	0.013	0.254	0.799
Educational level	1.031	1.405	0.057	0.734	0.464
Family income	-3.249	1.204	-0.173	-2.699	0.008
Duration of disease	-0.102	0.041	-0.128	-2.511	0.013
Family function	-1.492	0.237	-0.363	-6.295	< 0.001
Family burden	0.332	0.05	0.349	6.585	< 0.001
Note: B, unstandardized coefficients; β, standardized coefficient; SE., standard error
R² = 0.530, adjusted R² = 0.503, F = 20.161, P < 0.001

3.4 Mediation analyses

A structural equation model was constructed to explore the interactions between family functioning, family burden, and PTSS. The hypothesized model is tested by AMOS 23.0, and the results showed a good fit indicator for the model: χ²/df = 1.848, RMSEA = 0.064, GFI = 0.908, TLI = 0.948, CFI = 0.957, and NFI = 0.911. The final model is shown in Fig. 2.

From Fig. 2, family functioning had a significant negative effect on PTSS (β = -0.481, P < 0.001) and family burden (β = -0.365, P < 0.001). Family burden had a significant positive effect on PTSS (β = 0.427, P < 0.001). The results of the mediation effects tests are presented in Table 4. The direct effect of family functioning on PTSS was − 0.536 (95% CI: -0.707, -0.381, P = 0.001). The indirect effect of family functioning on PTSS through family burden was − 0.173 (95% CI: -0.296, -0.088, P = 0.001). These findings verify that family burden partially mediates the relationship between family functioning and PTSS.

Table 4

The mediating effect of family burden between family functioning and PTSS
Effect	Path	β	SE	P	95% CI		Effective size
Effect	Path	β	SE	P	LL UL		Effective size
Direct effect	PTSS ← FF	-0.536	0.083	0.001	-0.707	-0.381	75.6%
Indirect effect	PTSS ← FF ← FB	-0.173	0.052	0.001	-0.296	-0.088	24.4%
Total effect	PTSS ← FF	-0.709	0.088	0.001	-0.895	-0.554
Note: β, standardized coefficient; SE, standard error; CI, confidence interval; LL, lower limits; UL, upper limits; FF, family functioning; FB, family burden

This study established a hypothesized model to explore the interactions between family functioning, family burden, and PTSS in parents of children with leukemia. The primary finding was that family burden mediated the association between family functioning and PTSS. These results provide new insights for enhancing parental mental health.

4.1 Current status of PTSS among parents of children with leukemia

The prevalence of parental PTSS in our study was 36.4%, similar to that reported by parents of children with cancer in South China (32.97%) [25], but higher than in the Australian study by McCarthy et al. (24%) [31]. The difference in results may be because Chinese parents tend to conceal cancer from their children, strive to maintain a relatively relaxed family atmosphere of love and protection, and suppress their emotional grief, which may lead to increased stress for parents [32, 33]. Our study also found that parents with lower family incomes experienced more severe PTSS. The per-capita income in Xinjiang is lower than the Chinese average, and the treatment cost for leukemia is very high. Although the Chinese government has provided more favorable medical insurance policies and social funding support for the Xinjiang region, the high treatment costs still place heavy financial pressure on many families, which may result in negative emotions [17].

Moreover, parents are more likely to develop PTSS within 6 months after their child is diagnosed with leukemia, which is consistent with the findings of Phipps [34]. This suggests that the first 6 months following a childhood leukemia diagnosis is a critical period for parents experiencing psychological stress. Therefore, supportive psychological interventions should be provided for parents during this period.

4.2 Relationships between family functioning, family burden, and PTSS

The present findings suggest that family functioning has a direct negative relationship with PTSS. This result supports Hypothesis 1, indicating that parents with poorer family functioning are more likely to have PTSS. In Xinjiang, many parents of children with leukemia often need to accompany their children away from home to Urumqi for long-term hospitalization; this situation has seriously disrupted their normal family lives and inevitably affected their usual functioning [35]. Family cohesion is lower in dysfunctional families; family support is reduced, family members cannot provide satisfactory help, and the responsibility and pressure of caring for children cannot be effectively shared [36]. In addition, estranged family relationships lead to a lack of support and response when family members express their emotions, increasing their sense of isolation and helplessness, which may result in the occurrence of PTSS [37].

The study results demonstrated that the family burden of disease is a significant predictor of PTSS in parents of children with leukemia; the greater the burden of childhood leukemia on the family, the more likely parents are to experience PTSS. Previous research has confirmed this finding [20, 38]. The diagnosis and treatment of childhood leukemia disrupt the normal life of family members. Parents often have to sacrifice their time or even quit their jobs to take care of their children, which impairs their ability to balance caregiving for other family members and can lead to psychological distress [3]. From an economic perspective, the high medical costs of treating leukemia and the potential loss of income increase the financial burden on parents, which is likely to lead to negative emotions [17]. Childhood leukemia also limits the social and recreational activities of family members, and parental stress cannot be effectively relieved [39]. Hence, it is essential to evaluate family burden synthetically and assist in reducing the burden of the disease on families.

Furthermore, our results suggest that family functioning was significantly negatively correlated with family burden in families with childhood leukemia and that good family functioning helps reduce family burden. Tang et al. investigated 431 families with disabled elderly individuals and found that families with better family functioning could lessen the burden of disability [22]. A well-functioning family has positive relationships, and members offer meaningful assistance, fostering a positive attitude that helps navigate challenges and crises and reducing the likelihood of family burden [40].

4.3 Mediating effect of family burden between family functioning and PTSS

Importantly, our results highlight that family burden partially mediates the effect of family functioning on the PTSS in parents of children with leukemia, accounting for 24.4% of the total effect. In other words, family functioning not only directly affects PTSS but also indirectly affects PTSS through family burden, which is consistent with current research [41], thereby confirming Hypothesis 2. Hill’s Family Stress Theory suggests that available resources can influence an individual’s perception of a stressful event, and this perception may be the key to the stress outcome [24]. Favorable family functioning can be an effective coping resource that provides parents with increased life assistance, emotional support, and financial backing. This can reduce their perception of the family burden caused by having a child with leukemia, thereby reducing the occurrence of negative emotions. By contrast, family dysfunction is strongly associated with emotional disorders [12]. When dysfunctional families face a traumatic event, more conflicts and contradictions may arise among family members regarding the sharing of caregiving responsibilities and sources of medical expenses, increasing the burden on parents [42]. Heavy family burden can increase negative illness perceptions, decrease hope and beliefs, and lead to the onset of PTSS [43]. Consequently, future family-centered care interventions aimed at improving family functioning and reducing family burden could promote psychological well-being among parents of children with leukemia.

4.4 Limitations

Our study has several limitations. First, it only used a cross-sectional survey and could not establish a causal relationship between family functioning, family burden, and PTSS. A longitudinal study is needed to verify these relationships in the future. Second, all data were derived from self-reported questionnaires; therefore, the study results may have been biased. Third, the sample was obtained from a public hospital in Xinjiang, China, so the results may not apply to other populations. In the future, multicenter surveys should be conducted to determine whether the results can be generalized.

The results revealed the mediating role of family burden in the relationship between family functioning and parental PTSS. Our findings emphasize that childhood leukemia can impose a huge burden on families, affecting the relationship between family functioning and parental mental health. This suggests that society, the community, and medical staff need to pay more attention to the circumstances of parents of children with leukemia, understand the difficulties faced by families and parents, develop and implement family-centered care measures to improve family functioning and reduce family burden to effectively prevent and reduce the occurrence of PTSS.

Acknowledgments The authors would like to thank the medical staff and all participants.

Funding This research is funded by the National Nature Science Foundation in China (grant number 82272924), the China Medical Board Open Competition Program (grant number #20-369) and Research and Innovation Team Project, Xinjiang Medical University (grant number XYD2024C06)

Competing Interests The authors declare no competing interests.

Author Contribution Zixuan Liu, and Guiyuan Ma contributed to the study conception and design; Zixuan Liu, Tianruixue Zhang, Jia Xu and Hong Zhang made contributions to data collection; Zixuan Liu, Yuqiao Xiao involved in data analysis and drafting of the manuscript; Ping Yan and Li Liu performed the manuscript revision; Can Gu was responsible for supervision and support of this study.

Ethics approval This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Review Board of the Xiangya School of Nursing, Central South University (Approval Number: E2022202).

Consent to participate Informed consent was obtained from all individual participants included in the study.

Consent for publication These data have not been presented or published elsewhere.

Data availability The data are available from the corresponding author on reasonable request.

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The mediating role of family burden in the association between family functioning and post-traumatic stress symptoms among parents of children with leukemia in Xinjiang, China: a cross-sectional study

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Abstract

Purpose

Methods

Results

Conclusion

Figures

1. Introduction

2. Methods

2.1 Study design and participants

2.2 Measures

2.2.1 Social demographic questionnaire

2.2.2 Family functioning

2.2.3 Family burden

2.2.4 PTSS

2.3 Data collection

2.4 Data analysis

3. Results

3.1 Characteristics of participants

3.2 Pearson correlations

3.3 Multiple linear regression analysis

3.4 Mediation analyses

4. Discussion

4.1 Current status of PTSS among parents of children with leukemia

4.2 Relationships between family functioning, family burden, and PTSS

4.3 Mediating effect of family burden between family functioning and PTSS

4.4 Limitations

5. Conclusions

Declarations

References

Additional Declarations

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