Factors influencing sense of coherence in caregivers of children with acute leukaemia

Abstract

Background

As an important protective factor for caregivers’ well-being, a sense of coherence can reduce a series of negative effects brought about by the care process. Previous studies have focused on the adverse factors that lead to psychological problems in caregivers of children with acute leukaemia. This study explored factors that promote the physical and mental health of caregivers, with a particular focus on the sense of coherence and its influencing factors among caregivers of children with acute leukaemia.

Methods

This study used a cross-sectional design and was completed between February and September 2023. We conducted a questionnaire survey using convenience sampling with 287 children with acute leukaemia and their caregivers who were admitted to a children’s hospital in Jiangsu Province. Caregivers completed a general information questionnaire, Sense of Coherence Scale, Social Support Rating Scale, Simplified Coping Style Questionnaire, and General Self-Efficacy Scale. Data were analysed using independent sample t-tests, one-way analysis of variance, Pearson’s correlation analysis, and multiple linear regression analysis using the SPSS software.

Results

Univariate analysis identified several influencing factors, including caregivers’ gender, relationship with children, education level, current work status, family monthly income per capita, cumulative care time, medical payment method, clinical risk classification, self-care ability, and recurrence. Bivariate analysis showed that sense of coherence was positively correlated with social support, positive coping style, and self-efficacy. Multiple linear regression analysis showed that positive coping style, self-efficacy, family monthly income per capita, caregivers’ gender, social support, self-care ability, and the caregiver’s relationship with the child contributed to the model, collectively explaining 58.1% of the total variance.

Conclusion

The overall sense of coherence among caregivers of children with acute leukaemia was notably low. According to the identified influencing factors, it is crucial to implement targeted interventions and support caregivers in fully utilising internal and external family resources to promote positive coping strategies and improve their sense of coherence.

Clinical trial number

Not applicable.

Introduction

Childhood cancer is the sixth leading contributor to the total global cancer burden and the ninth leading cause of the global burden of childhood diseases [1]. Approximately 429 000 children and adolescents aged 0–19 years will develop cancer each year [2]. Acute leukaemia (AL), a malignant clonal disease originating from haematopoietic stem cells, is the most common haematological malignancy in childhood, accounting for one-third of all childhood cancers [3, 4]. Compared with chronic leukaemia, the incidence of childhood acute leukaemia is as high as 90–95%, and ranks first in mortality among malignant tumours in children and young adults [5, 6]. According to statistics, more than two million children have leukaemia in China, and this number continues to increase at a rate of 30–40,000 per year [7]. In recent years, advances in risk factor-stratified chemotherapy techniques and protocols have significantly improved the treatment of children and adolescents with AL. However, leukaemia remains the leading cause of death in children, and survivors face lifelong health complications associated with treatment [8].

Childhood AL has a high degree of malignancy, a long treatment cycle, high treatment costs, and many complications. Once diagnosed, it imposes a heavy burden and significant psychological impacts on children, caregivers, and the entire family. Over the 2.0–2.5 years of treatment, children often suffer from severe side effects from chemotherapy and various uncomfortable symptoms [9, 10], which can lead to psychological and behavioural issues such as irritability, depression, sadness, fear, and social anxiety [9, 11]. These adverse reactions not only aggravate the child’s condition and interrupt or delay treatment—increasing medical costs—but also affect the child’s mental state, reduce treatment compliance, and weaken self-care ability. Consequently, this increases the physical and mental dependence on caregivers, further intensifying their burden. In severe cases, this can threaten the child’s survival and quality of life, and may even lead to death [5].

As a sudden family event, the diagnosis and treatment of childhood leukaemia serve as unpredictable and uncontrollable sources of stress for the family [12]. This significant negative event results in unmet needs for caregivers, while the uncertainty surrounding the child’s future can contribute to varying degrees of psychological distress, especially negative psychological symptoms [13, 14]. Furthermore, caregivers themselves bear multiple burdens, including health, economic, and social pressures, which can negatively affect their physical and mental health, ultimately diminishing their quality of life and potentially making them “hidden patients” [15, 16]. As caregivers are the co-affected persons of this traumatic event, during the long care process, persistent psychological and physiological problems reduce not only their self-efficacy and coping ability but also the quality of care provided to children, thereby affecting their physical and mental rehabilitation, prognosis, and quality of life, thus forming a vicious circle [17].

Previous studies have focused on the factors that lead to negative psychology among caregivers of children with AL, such as anticipatory sadness and fear of disease progression [18, 19]. However, with the development of positive psychology, many scholars have begun to pay attention to and gradually explore beneficial factors that promote the physical and mental health of these caregivers. As an important protective factor for caregivers’ well-being, sense of coherence (SOC) not only encourages caregivers to effectively cope with and manage stressors to achieve positive health outcomes [20] but also alleviates negative emotions and psychological distress during the caregiving process, thereby improving their quality of life and subjective well-being [21, 22]. SOC comprises comprehensibility (recognition component), manageability (tool component), and meaningfulness (movement component). It acts as a mechanism that stabilises psychological inclinations and provides protection against stressors [23].

Psychology involves regulating emotions, influencing behaviour, and coping with pressures. As the primary factor affecting the physical and mental rehabilitation of children, caregivers’ psychological states significantly affect their own health status and the quality of care they provide for children [24]. A high level of SOC can help caregivers shift their attention from negative emotions and regard pressure and frustration in the care process as understandable and meaningful challenges. Throughout the process, caregivers maintain a positive and optimistic attitude, actively participate in caring for children, making medical decisions, and managing the disease. The rehabilitation process for children should be managed in the best possible way, with caregivers seeking out available resources and social support to meet environmental needs and overcome challenges [25, 26]. In this process, caregivers with a strong SOC not only prevent their mental state from deteriorating under pressure, but also experience relief from negative emotions such as anxiety and depression. This enhances their role competency, which may shorten children’s hospitalisation time, promote early recovery, and improve the quality of life for both children and caregivers [23]. Conversely, a low level of SOC can lead to a vicious cycle of poor health outcomes for both caregivers and children.

Previous studies on the SOC of caregivers of children have primarily focused on two areas: chronic diseases [27]and autism [28], both of which have relatively stable and predictable disease courses. In contrast, childhood AL has unique challenges, such as high malignancy, long treatment cycles, and serious psychological impacts, resulting in a notable gap in research on the SOC of caregivers in this context. Given that caregivers play a key role in the treatment and recovery processes of childhood AL, it is crucial to study their SOC levels and related influencing factors. These insights can inform the development of targeted psychological interventions, which are essential for improving caregivers’ mental health, enhancing the quality of care they provide, and ultimately breaking the vicious cycle of poor health for both caregivers and children. Therefore, by investigating the SOC levels of these caregivers, analysing the influencing factors, and exploring the correlations between SOC levels, social support, coping style, and self-efficacy, we can begin to provide a theoretical basis for improving SOC in this group.

Methods

Study design

This cross-sectional study explored the status and influencing factors of SOC among caregivers of children with AL. This study used the STROBE checklist for the cross-sectional analysis.

Sample size

According to the standard proposed by Kendall, the sample size estimation should be five to 10 times the number of variables studied [29]. In this study, the total number of variables was 29 (20 items from the social demographic data questionnaire and nine items of all scale dimensions). Therefore, the sample size ranged from 145 to 290 cases. Considering an invalid questionnaire rate of 20%, the required sample size was determined to be approximately 29*7/(1–20%) = 254. A total of 300 questionnaires were distributed, and 287 valid questionnaires were collected, resulting in an effective recovery rate of 95.7%.

Data collection and participants

This study was conducted between February 2023 and September 2023 at a tertiary public children’s hospital in Suzhou, China. A total of 287 children with AL who met the inclusion and exclusion criteria, along with their caregivers from two wards of the haematology department, were selected as participants using convenience sampling. Informed consent was signed at the same time. The inclusion criteria were as follows: (1) the children were diagnosed with AL by clinical and pathological examination, with a diagnosis time of more than two months; (2) children were ≤ 16 years old; (3) caregivers were ≥ 18 years old; (4) caregivers provided at least 40 h of cumulative care per week (including play and companionship time); and (5) caregivers had normal communication and comprehension abilities, understood the child’s condition, and voluntarily participated in this study. The exclusion criteria were as follows: (1) children with congenital diseases, other types of malignant diseases, or mental disorders; (2) caregivers who experienced other major stress events in the past month; (3) having two or more family members suffering from serious diseases or caregivers themselves suffering from serious diseases; and (4) caregivers who were also receiving treatment from other psychotherapists or participating in studies conducted by other researchers at the same time.

To ensure the stability and reliability of the study, 20 participants were selected for a pre-survey before the formal survey, and the research protocol was adjusted based on the results. The formal investigation was conducted during the hospitalisation of children with AL, and questionnaires were distributed to the children and their caregivers after routine health education. The investigator explained the purpose and significance of the study, as well as the method of completing the questionnaire, in detail. Questionnaires were distributed and collected on the spot by the investigators, who checked them promptly for any missing information to ensure the integrity and reliability of the questionnaire. A total of 300 questionnaires were distributed to caregivers and 13 ineligible questionnaires were excluded, resulting in 287 valid responses and a valid return rate of 95.67%.

Ethical consideration

This study was approved by the Medical Ethics Committee of Soochow University Children’s Hospital (2023CS027) before the formal investigation began. The ethical principles of informed consent and confidentiality were followed throughout the study. Caregivers were informed of the purpose and significance of the study before the survey, signed an informed consent form, and were then given questionnaires to complete. All participant data were kept strictly confidential, properly preserved, and used solely for the purposes of this study.

Instruments

By reviewing the relevant literature at home and abroad, and based on the objective of this study, we designed an anonymous questionnaire. Before the formal survey, we conducted a pre-survey with 20 children and their caregivers who met the sampling criteria to test the feasibility and rationality of the questionnaire design. The questionnaire included three parts for caregivers and children: (1) basic information about caregivers, including relationship with the child, gender, age, religious beliefs, marital status, and education level; (2) basic information about the child, including gender, age, whether the child was an only child, duration of disease, and self-care ability; and (3) disease-specific data about the child, including disease type, clinical risk classification, treatment stage, and recurrence.

The Sense of Coherence-13 (SOC-13) was used to assess caregivers’ overall perception of the life of children with AL when they experienced stressful events. The scale was developed by Antonovsky [23]. This study adopted the Chinese version of the Sense of Coherence Scale revised by Bao et al. [30] in 2005. It contains three dimensions—comprehensibility, manageability, and meaningfulness—with a total of 13 items. A 7-point Likert scale was used, With each item scored from 1 (‘very often) to 7 (‘never’). Five items (1, 2, 3, 8, and 13) were reverse-scored. The total score ranged from 13–91, with higher scores indicating a higher level of caregiver SOC. A score of 13–63 indicated a low level, 64–79 indicated a moderate level, and 80–91 indicated a high level. The Cronbach’s α coefficient for the total scale was 0.76, and the test-retest reliability was 0.61, indicating good reliability and validity.

The Social Support Rating Scale (SSRS) was developed by Chinese scholar Xiao [31] in 1994 to evaluate sources, levels, and utilisation of individual social support. Social support can also predict physical and mental health. The scale includes three dimensions—subjective support, objective support, and utilisation of support—with a total of 10 items. The total score ranges from 12 to 66, with higher scores indicating higher levels of social support. A total score of ≤ 22 was defined as low level, 23–44 as medium level, and 45–66 as high level. The Cronbach’s α coefficient for the Chinese version of the scale was 0.92, indicating good reliability.

The Simplified Coping Style Questionnaire (SCSQ) was developed by Chinese scholar Xie [32] to evaluate individuals’ coping styles when facing setbacks and challenges. Coping style is closely related to mental health. The scale comprises two dimensions: positive coping (items 1–12) and negative coping (items 13–20), with a total of 20 items. It uses a 4-point Likert scale, with each item scored from 0 (‘never take’) to 3 (‘often take’). The total score ranges from 0 to 60. A higher score in a given dimension indicates a greater tendency to adopt a certain coping style. The total Cronbach’s α of the scale was 0.90, with α values of 0.89 for positive coping and 0.78 for negative coping.

The General Self-Efficacy Scale (GSES) was developed by Luszczynska et al. [33] in 2005 and revised into Chinese by Wang et al. [34]. It is used to assess an individual’s perception or belief in their ability to act adaptively when facing challenges. The scale adopts a single dimension with a total of 10 items. It uses a 4-point Likert scale, with responses ranging from 1 (‘not at all true’) and 4 (‘absolutely true’). The total score ranges from 10 to 40, with higher scores indicating greater self-efficacy. The Cronbach’s α coefficient of the Chinese version of the scale was 0.91.

Data analysis

EpiData3.1 was used for data entry. After double-checking, SPSS26.0 was used for statistical analysis. Prior to the analysis, in cases of minimal missing data, participants were contacted to complete the relevant information. For participants with more than 20% missing values in any variable, their data were excluded from the statistical analysis of that variable. The count data in the sociodemographic data were expressed as frequencies and percentages. The measurement data conforming to normal distribution were expressed as mean ± standard deviation, and the measurement data not conforming to normal distribution were expressed as medians or interquartile ranges. In the univariate analysis, an independent sample t-test was used to compare the data between two groups that conformed to the normal distribution and homogeneity of variance, and one-way analysis of variance was used to compare the data between multiple groups. The Mann-Whitney U test or Kruskal-Wallis H test was used for variables that did not conform to a normal distribution. In the bivariate analysis, Pearson’s correlation analysis was used to test the relationship between SOC and social support, coping style, and self-efficacy when data were normally distributed; otherwise, Spearman’s correlation analysis was used. In the multivariate analysis, because the dependent variable was continuous and met the assumptions of linear regression, multiple linear regression was deemed more suitable for the study and data characteristics than other modelling techniques. Therefore, we used multiple linear stepwise regression with caregiver SOC as the dependent variable and statistically significant indicators in the univariate and bivariate analyses as independent variables. Only statistically significant factors were retained to determine the influencing factors of SOC and identify the best-fitting model. Statistical significance was set at p < 0.05.

Descriptive analysis of participants

A total of 300 questionnaires were distributed, 287 of which were returned, resulting in a valid return rate of 95.67%. Six questionnaires were withdrawn voluntarily by participants during completion, and seven were deemed invalid. The male-to-female ratio of children with AL was 1.47:1. Eighty-nine cases (31.0%) involved children younger than 4 years, with the youngest being 0.8 years old. The most common disease type was acute lymphoblastic leukaemia (83.6%). Most clinical risk classifications were of medium risk, (61.0%). A total of 254 children (88.5%) had no recurrence. Additionally, 101 children (35.2%) were only children (Tables 1 and 2).

Table 1.

Univariate analysis of SOC in caregivers of children with acute leukaemia-caregivers (n = 287)

Variables	Number, Percentage (%)	SOC score ( ± s)	Statistical values (t/F)	P value
Relationship with children			10.018	< 0.001
Father	58 (20.2)	62.07 ± 9.46
Mother	223(77.7)	56.12 ± 11.14
Grandparents/grandparents	6 (2.1)	68.33 ± 10.42
Age			1.159	0.326
< 30	40(13.9)	55.68 ± 11.66
30~40	198(69.0)	57.57 ± 11.15
41~50	42(14.6)	58.45 ± 9.84
> 50	7 (2.4)	63.57 ± 14.81
Caregivers’ gender			4.054	< 0.001
Male	61(21.3)	62.57 ± 9.83
Female	226(78.8)	56.23 ± 11.11
Religious beliefs			-0.717	0.474
No	267(93.0)	57.45 ± 11.23
Have	20 (7.0)	59.30 ± 9.96
Marital status			1.082	0.280
On the road	274(95.5)	57.73 ± 11.14
Widowed/divorced	13 (4.5)	54.31 ± 11.18
Education level			4.631	0.004
Junior high school and below	73(25.4)	53.90 ± 11.79
High school/technical secondary school	62(21.6)	57.42 ± 10.74
Junior college	80(27.9)	58.40 ± 10.55
Bachelor degree or above	72 (25.1)	60.51 ± 10.63
Current work status			10.883	< 0.001
On the job	67 (23.3)	61.69 ± 9.73
Ask for leave/stay	52(18.1)	60.25 ± 10.11
Quit/be unemployed	168(58.5)	55.11 ± 11.35
Place of family residence			2.961	0.053
Rural areas	102(35.5)	10.95 ± 1.08
Township	70 (24.4)	57.66 ± 11.36
Cities	115(40.7)	59.27 ± 10.99
Family per capita monthly income			11.801	< 0.001
≤ 1000 yuan	32(11.2)	49.69 ± 10.08
1001~2000 yuan	52 (18.1)	54.77 ± 12.30
2001~4000 yuan	92(32.1)	57.40 ± 10.33
> 4000 yuan	111(38.7)	61.31 ± 9.99
Cumulative care time			2.945	0.033
< 6 months	90(31.4)	59.62 ± 10.48
6~12 months	89(31.0)	55.60 ± 11.11
13~18 months	28 (9.8)	54.46 ± 11.76
> 18 months	20 (7.0)	11.29 ± 1.76
Medical payment methods			-2.373	0.018
At one’s own expense	11 (3.8)	49.82 ± 13.52
Medical insurance	276(96.2)	57.88 ± 10.95

Note: ① SOC- Sense of Coherence. ② For cases with minimal missing data, participants were contacted to complete the information. Data from participants with missing values exceeding 20% of total items were excluded from statistical analysis for this variable

Table 2.

Univariate analysis of SOC in caregivers of children with acute leukaemia-children (n = 287)

Variables	Number, Percentage (%)	SOC score ( ± s)	Statistical values (t/F)	P value
Gender			1.479	0.140
Male	171(59.6)	58.37 ± 11.56
Female	116(40.4)	56.40 ± 10.44
Age			0.805	0.492
< 4	89(31.0)	57.44 ± 11.26
4~7	80(27.9)	58.21 ± 11.99
8~11	65(22.6)	58.57 ± 9.68
12~16	53(18.5)	55.62 ± 11.34
Types of disease			0.072	0.943
Acute lymphoblastic leukemia	240(83.6)	57.60 ± 11.18
Acute nonlymphocytic leukemia	47(16.4)	57.47 ± 11.04
Only child			1.276	0.203
Yes	101(35.2)	58.71 ± 10.86
No	186(64.8)	56.06 ± 11.27
Duration of disease			1.063	0.347
< 1	178(62.0)	58.20 ± 11.07
1~3	99(34.5)	56.28 ± 11.26
> 3	10(3.48)	59.30 ± 11.09
Clinical risk classification			3.416	0.034
Standard risk type	82(28.5)	60.27 ± 12.05
Intermediate risk type	175(61.0)	56.53 ± 10.05
High risk type	30(10.5)	56.30 ± 13.37
Phase of treatment			0.605	0.547
Induction of remission	70(24.4)	58.44 ± 10.03
Consolidation and intensification period	111(38.7)	57.89 ± 11.73
Maintenance treatment period	106(36.9)	56.67 ± 11.24
Self-care ability			4.738	0.009
Unable	57(19.9)	55.18 ± 11.31
Partial self-care	183(63.8)	57.26 ± 11.20
Completely independent	47(16.3)	61.70 ± 9.76
With or without recurrence			3.699	< 0.001
No	254(88.5)	58.43 ± 10.99
Yes	33(11.5)	50.97 ± 10.24

Note: ① SOC- Sense of Coherence. ② For cases with minimal missing data, participants were contacted to complete the information. Data from participants with missing values exceeding 20% of total items were excluded from statistical analysis for this variable

Sense of coherence scores and correlation variables

In this study, the total SOC scores of caregivers of children with AL ranged from 26 to 85, with a total average score of 57.57 ± 11.14 and an average dimension score of 4.43 ± 0.86. There were 187 cases (65.2%) with scores between 13 and 63, 93 (32.4%) with scores between 64 and 79, and seven (2.4%) with scores between 80 and 91. Among the three SOC dimensions, scores from highest to lowest were: comprehensibility (21.88 ± 5.37), meaningfulness (18.65 ± 4.34), and manageability (17.05 ± 3.17). The total average social support score was 39.20 ± 8.08, with an average item score of 3.92 ± 0.81. The total average coping style score was 32.77 ± 6.70, with an average item score of 1.64 ± 0.34. The total average self-efficacy score was 23.25 ± 6.17, with an average item score of 2.33 ± 0.62 (Table 3).

Table 3.

Total scores and subdimension scores of the SOC, SSRS, SCSQ and GSES (n = 287)

Variables	Number of items	Dimension (mean ± SD)	Item (mean ± SD)
SOC
Total score	13	57.57 ± 11.14	4.43 ± 0.86
Comprehensibility	5	21.88 ± 5.37	4.38 ± 1.07
Manageability	4	17.05 ± 3.17	4.26 ± 0.79
Meaningfulness	4	18.65 ± 4.34	4.66 ± 1.09
SSRS
Total score	10	39.20 ± 8.08	3.92 ± 0.81
Subjective support	4	23.08 ± 5.20	5.77 ± 1.30
Objective support	3	9.31 ± 3.19	3.10 ± 1.06
The availability of support	3	6.81 ± 1.91	2.27 ± 0.64
SCSQ
Total score	20	32.77 ± 6.70	1.64 ± 0.34
Positive coping style	12	19.03 ± 7.53	1.56 ± 0.63
Negative coping style	8	13.74 ± 3.66	1.72 ± 0.46
GSES
Total score	10	23.25 ± 6.17	2.33 ± 0.62

Note: SOC-Sense of Coherence; SSRS-Social Support Rating Scale; SCSQ-Simplified Coping Style Questionnaire;

GSES- General Self-Efficacy Scale; SD = Standard deviation

Univariate analyses of factors associated with sense of coherence

This study collected information on the characteristics of children with AL, their caregivers, and disease-related conditions. In the data analysis, we found statistically significant differences in several factors across the three aspects. Univariate analysis showed that the SOC scores of caregivers differed significantly based on gender, relationship with the child, education level, current work status, family per capita monthly income, cumulative care time, and medical payment methods (p < 0.05). For children with AL, statistically significant differences were observed based on clinical risk classification, self-care abilities, and recurrence (p < 0.05). No significant differences were observed in relation to the child’s gender, age, or whether they were an only child. Different disease types, disease durations, and treatment stages did not show statistically significant effects (Tables 1 and 2).

Bivariate analysis of sense of coherence

Bivariate analysis showed that SOC was positively correlated with positive coping style (r = 0.695, p < 0.01) and negatively correlated with negative coping style (r=-0.384, p < 0.01). There was a moderate positive correlation between social support (r = 0.358, p < 0.01) and self-efficacy (r = 0.465, p < 0.01).

Multiple linear regression analysis

The results of the multiple linear regression showed that seven variables were included in the regression equation: positive coping style, self-efficacy, family monthly income per capita, caregivers’ gender, social support, children’s self-care ability, and the caregiver’s relationship with the child (R²=0.591; adjusted R²=0.581). Together, these variables explained 58.1% of the total variance in the SOC levels of caregivers of children with AL. The impact of each dimension on SOC was as follows: positive coping style (0.528), self-efficacy (0.181), family monthly income per capita (0.128), caregivers’ gender (-0.267), social support (0.108), the child’s self-care ability (0.109), and the caregiver’s relationship with the child (0.156). The regression equation was as follows: SOC = 26.973 + 0.781 (positive coping style) + 0.327 (self-efficacy) + 1.415 (family monthly income per capita) -7.250 (caregiver gender) + 0.149 (social support) + 2.002 (self-care ability) + 3.985 (the caregiver’s relationship with the child with AL). The regression equation model yielded F = 57.629 and p < 0.001 (Table 4).

Table 4.

The influencing factors of SOC by multivariable linear regression analysis

Variables	β	95%CI	SE	β’	t	P
Constant	26.973		2.628		10.264	0.000
Positive coping style	0.781	0.655,0.906	0.064	0.528	12.170	0.000
Self-Efficacy	0.327	0.171,0.482	0.079	0.181	4.113	0.000
Family per capita monthly income	1.415	0.528,2.301	0.450	0.128	3.144	0.002
Caregivers’ gender	-7.250	-11.329,-3.170	2.072	-0.267	-3.499	0.001
Social Support	0.149	0.036,0.261	0.057	0.108	2.621	0.009
Self-care ability	2.002	0.600,3.403	0.717	0.109	2.820	0.005
Relationship with children	3.985	0.180,7.789	1.932	0.156	2.063	0.040

Discussion

The overall level of SOC in caregivers of children with AL

As a psychological protective mechanism and a core concept of the health benefit theory, SOC is an important protective factor for caregivers’ well-being. This study focused on caregivers of children with AL and explored the related influencing factors, as well as the relationships between social support, coping style, self-efficacy, and SOC.

In our study, caregivers of children with AL had a significantly low SOC, with a mean score of 57.57 ± 11.14 on the SOC-13 scale. This score falls below the midpoint of the total score range (≤ 52) and in the low SOC category (≤ 63). The item score of SOC among caregivers was 4.43 ± 0.86, which was lower than that of parents of children with autism (59.91 ± 11.04) [35], but higher than that of parents of children with cancer (51.40 ± 14.20) [36]. This may be related to the nature of the disease, development of the prognosis, and differences in social and economic status, humanistic environments, and medical standards at home and abroad. The reasons for the low level of SOC may include the following: (1) Although the survival rate of children with AL is constantly improving, the long treatment cycle, complex chemotherapy procedures, high medical costs, and uncertainty of disease progression place a heavy burden on caregivers, making them feel vulnerable and defeated, lacking coping capacity and experiencing other negative states, and weakening their confidence in caring for children. Thus, the SOC levels are reduced [37]; (2) Children with AL generally have low immunity, are prone to infection, have a long disease course, require frequent hospital visits for treatment, and demand high levels of human, material, financial, and emotional investment over time. These factors can diminish caregivers’ enthusiasm for treatment, hinder their ability to maintain positive attitudes, and affect their SOC [6]; and (3) Families, medical institutions, and society pay more attention to the physical and mental health of children with leukaemia but do not pay enough attention to the mental health of caregivers. Consequently, caregivers receive less support and resources, which further negatively impacts their SOC. In the current study, 187 caregivers had a low SOC level, 93 had a moderate level, and only seven had a high level. This distribution indicates significant psychological challenges faced by this group. The SOC score of 58 fathers was 62.07 ± 9.46, while that of 223 mothers was 56.12 ± 11.14, and that of six grandparents was 68.33 ± 10.42. Significant differences were observed between the groups. The dimension scores, from highest to lowest, were comprehensibility, meaningfulness, and manageability. The average item score was highest for the meaningfulness dimension. This may be because the child is seen as the hope of the parents and the core of the family. The caregiver assumes primary responsibility for care and long-term companionship throughout the child’s treatment and rehabilitation. In the process of fighting leukaemia over time, caregivers gradually adapt and realise that the associated stressful event is a meaningful challenging, and are willing to make sustained efforts. Moreover, they gain a certain sense of self-satisfaction, value, and achievement.

Influencing factors of SOC of caregivers of children with AL

Relationship with the child

This study found that the influencing factor—the caregiver’s relationship with the child—had a significant impact on caregivers’ SOC. The SOC of mothers was lower than that of fathers and grandparents (p < 0.05). This may be because mothers are the primary caregivers of children in China, devote more time and energy to their children, express more emotions, and provide companionship to them. Their ability to live as they wish may be limited to some extent, and they are prone to feeling a sense of meaninglessness [35]. Additionally, when facing the suffering and ups and downs associated their children’s leukaemia, they are more inclined to adopt emotional expressions and seek support. Moreover, their coping ability and psychological resilience are relatively weak, leading to low levels of SOC. However, fathers, who are usually the main providers of family economic support, tend to adopt problem-solving and action-oriented coping styles when dealing with stress and challenges. This difference in roles and coping strategies may lead fathers to remain calm and rational in the face of their child’s illness and adopt positive coping strategies [38]. However, two studies of parents of children with autism and cerebral palsy showed no significant difference in SOC between parents [39, 40]. Grandparents, who serve as secondary caregivers in China, often have more free time. With increasing age and life experience, their adaptability and psychological ability to cope with difficulties are greater than those of younger people, leading to higher SOC levels. Accordingly, medical staff should pay more attention to the mothers of children with leukaemia. Regular group psychological counselling, peer support, and other social support should be provided to help alleviate their psychological distress. Additionally, family therapy sessions involving fathers and grandparents can be organised to redistribute caregiving tasks based on each member’s strengths. This approach not only alleviates the burden on mothers but also fosters a more collaborative family environment.

Caregivers’ gender

The results of this study showed that male caregivers of children with AL had a higher SOC than female caregivers (p < 0.05), which is consistent with the results of previous studies on caregivers of patients with cancer [41]. This may be due to innate differences between men and women; women are usually more sensitive and vulnerable than men, and their ability to cope with pressure is lower. However, men are more rational in dealing with problems and are more likely to hide negative emotions. When faced with stressful events, they are more likely to use internal and external resources to solve problems. These gender differences may be related to gene and androgen levels [42]. However, Ferreira et al. [43] found no statistically significant difference in SOC between genders, suggesting that biological sex may not be a decisive factor. Additionally, Hong et al. [44] argued that the psychological differences between fathers and mothers of children with leukaemia should not be simply regarded as gender differences. Instead, these differences should consider their role in the family, as well as the plasticity of family relationships. Therefore, it is recommended that medical staff develop online platforms or hotlines specifically focused on mental health for women. At the same time, incorporating gender identity and family dynamics assessments into routine care can also help tailor support strategies.

Family per capita monthly income

This study found that a higher family per capita monthly income was associated with a higher SOC among caregivers (p < 0.05), which is consistent with the findings of previous studies on children with cancer [45]. This is because childhood AL is highly malignant, with a long treatment cycle and high costs, placing a heavy economic and caregiving burden on the child’s family. In this study, the primary caregivers were mostly parents, and the care they provide leads to the loss of the family’s main labour force, resulting in reduced income and increased economic pressure. Caregivers with lower family per capita monthly incomes bear greater economic and psychological burdens, resulting in weaker confidence and a sense of ideation in overcoming the disease; thus, they exhibit lower SOC [36]. Therefore, hospitals should give greater attention and support to caregivers with low family income. This could include collaborating with local charities and government agencies to establish a rapid-response financial aid fund specifically for families of leukaemia patients. At the same time, a reasonable treatment plan should be formulated to avoid unnecessary examinations and minimise the medical burden. However, Li et al. [46] found that family income was not related to SOC levels. The differing results from these studies may be due to variations in research subjects and methods, indicating that the relationship between demographic variables and SOC is not entirely consistent. The influence of demographic factors on SOC cannot be overlooked and needs further research.

Self-care ability

We also observed that greater self-care ability in children was associated with higher levels of SOC among caregivers (p < 0.05). In this study, caregivers of children aged 0–4 years had the lowest SOC levels, followed by caregivers of children aged 8–11 years, while caregivers of children aged 12–16 years had the highest SOC levels. This may be because children aged 0–4 years have limited self-care ability, requiring caregivers to manage their children’s clothing, food, shelter, transport, and disease treatment. Additionally, caregivers often face difficulties in establishing effective communication and guidance with younger children. Consequently, their caring role increases, and their physical and mental pressures become greater than those of caregivers of children aged 8–11 years. Children aged 12–16 years have the strongest self-care ability, higher cognitive function, a better understanding of the disease, and can establish good communication and interactive relationships with caregivers. These children are able to understand and master self-care skills in daily life, which can greatly reduce the physical and mental burden on caregivers. Consequently, caregivers may feel more relaxed and confident [17]. Therefore, in supporting children through their illness, medical staff should design self-care education programmes tailored to children’s abilities, individual differences, or special needs. This will gradually cultivate children’s sense of autonomy, improve their self-care skills, and alleviate the physical and mental pressures on caregivers.

Social support

We found that social support had a positive effect on the SOC levels of caregivers of children with AL (p < 0.05). Social support is an important external resource for the development of SOC and offers a protective effect for individuals under stress [31]. Caregivers with high levels of social support can obtain substantial economic and information assistance, which helps reduce their caregiving burden, cope with difficulties, and enhance their comprehensibility and manageability in caring for their children. Emotional support can also increase their happiness, make them feel that their efforts are valuable and meaningful, and positively influence their cognition and behaviour, thus increasing their meaningfulness in caring for their children and improving their SOC. Caregivers with a stronger SOC tend to recognise the existence and value of social support and are better able to use it to cope with life challenges, creating a mutually reinforcing relationship. Hence, it is necessary to evaluate the social support system of caregivers of children with AL, encourage them to fully utilise internal family resources, and actively seek external resources to manage stress. Additionally, healthcare professionals should consider incorporating family coherence approaches and psychological capital techniques into their caregiver support programmes to strengthen their psychological resources, reduce stress, and ultimately improving their SOC [47].

Positive coping style

A positive coping style had a positive effect on the SOC levels among caregivers of children with AL (p < 0.05), consistent with the results of previous studies on patients with cancer [48]. When experiencing stress or traumatic events, caregivers with high SOC tend to take proactive steps, with a positive attitude towards finding solutions to problems. They view setbacks in the caregiving process as opportunities to promote personal learning and growth. Through continuous problem-solving, they gradually build their confidence and psychological resilience, investing in the care of their children with a more positive attitude. Therefore, medical staff should assess the coping styles of caregivers and actively guide them towards adopting positive coping strategies. For example, cognitive behavioural therapy (CBT) can help challenge negative thinking and improve stress management skills [49]. Ultimately, this approach aims to improve the SOC among caregivers.

Self-efficacy

This study found that caregivers with strong self-efficacy had a higher sense of coherence (p < 0.05). This finding is consistent with that of a study on parents of children with autism [35]. Self-efficacy refers to the subjective judgement and belief in an individual’s ability to adopt a specific behaviour and complete an expected goal in different environments and is an important internal resource [34]. Caregivers with strong self-efficacy have more confidence in caring for children and tend to choose more positive coping styles, such as solving children’s problems and actively learning more information about leukaemia and its rehabilitation, to enhance their understanding of care for children and encourage them to obtain good health outcomes. Therefore, it is necessary to screen caregivers with low self-efficacy, encourage them to have the courage to self-disclose, and regularly conduct group psychological counselling and communication meetings [50] to obtain more positive care experiences and improve their SOC.

Limitations and future research

This study had several limitations. First, data were collected from a single children’s hospital using a convenience sampling method, which may have introduced selection bias. For example, caregivers who actively chose to participate may differ in motivation or psychological resilience. Additionally, the questionnaire relied on self-reported data, which carries the risk of response bias due to social expectation effects and recall errors. Second, the cross-sectional study design of the study limits the ability to draw causal inferences, as it captures only a snapshot of caregivers’ psychological states and overlooks the dynamic interaction of factors. Future studies should use a multi-centre, large-sample, random sampling design to improve the generalisability of the findings. Longitudinal or qualitative research guided by relevant theoretical models of SOC may help clarify the development mechanisms of SOC. Triangulating self-reported data with objective measures (e.g., physiological measures and observations) may reduce reporting bias.

Conclusions

Caregivers of children with AL generally face the challenge of an insufficient SOC. This study systematically revealed the influencing mechanisms of multiple factors on their psychological state, with key variables such as the parent-child relationship, coping style, and self-efficacy, playing core roles in explaining differences in SOC. To effectively improve the mental health of caregivers, the following intervention strategies were proposed. First, medical institutions should implement a rapid assessment tool for SOC, apply stratified interventions for high-risk groups (such as female caregivers and low-income families), and offer individual psychological counselling and group mutual support models to relieve psychological pressure. Second, a customised training programme should be developed, including disease knowledge dissemination, stress management skills, and positive communication strategies, to help caregivers improve their self-efficacy and adopt more positive coping skills. Additionally, a “hospital-community-family” linkage platform should be established to coordinate social resources, provide economic assistance, and offer temporary care services to reduce the burden of caregiving. This study provides a new theoretical perspective and practical direction for this field. Future research should focus on analysing differences in influencing factors across cultural backgrounds, exploring the potential of digital intervention tools (such as mental health apps), and verifying the long-term effectiveness of intervention measures through follow-up studies to strengthen mental health support systems for caregivers.

Abbreviations

AL

Acute Leukaemia

SOC

Sense Of Coherence

SSRS

Social Support Rating Scale

SCSQ

Simplified Coping Style Questionnaire

GSES

General Self-Efficacy Scale

SD

Standard Deviation

STROBE checklist

Strengthening the Reporting of Observational Studies in Epidemiology

Author contributions

Study conception and design: LCY & WF; Data collection, data analysis, and interpretation: LCY & WF & NZH; Drafting of the article: LCY; Critical revision of the article: LHT & NZH; All authors read and approved the final manuscript.

Funding

This study was supported by the Suzhou Science and Technology Bureau Research Program for funding this study (No. SKY 2023183).

Data availability

The datasets analysed in the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

This study was approved by the Medical Ethics Committee of Soochow University Children’s Hospital (2023CS027) and written informed consent was obtained from all participants. All the methods followed the principles of the Declaration of Helsinki.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.