1. Background
Cancer is the second leading cause of death worldwide (1). In recent years, there has been an increase in the prevalence of cancer in children, with Iran showing a higher incidence of childhood cancer compared to other countries (2). Childhood cancer generally refers to cancer cases in individuals under the age of 15, with common types including leukemia, sarcoma, and tumors of the central nervous system (3, 4).
Diagnosing cancer in children leads to numerous psychological, social, and financial challenges for parents. In the early stages of diagnosis, parents may experience anxiety, shock, depression, despair, and denial (5, 6). One of the significant challenges affecting parents of children with cancer is caregiver burden (7). Caregiver burden refers to the physical, psychological, social, or economic reactions that occur in the caregiver during care and is defined as the stress or negative experiences caused by caregiving (8). The lack of knowledge and experience regarding the disease process and treatment of children with leukemia, along with the unpredictable nature of the disease, can impose a high physical and mental burden on family caregivers (9). Wang et al.'s study (2017) found that parents of children newly diagnosed with leukemia experienced a high caregiver burden, but spending less time on daily care for their sick child was associated with lower anxiety levels, better general health, and improved social support (10).
When a child is diagnosed with a disease, the mother’s role as a caregiver significantly increases, making her more susceptible to depression than the father (11). Mothers tend to experience a higher caregiver burden than fathers (12). Research indicates that the type of illness the child has can affect the caregiver burden experienced by the mother, with mothers of children with cancer experiencing a higher burden compared to mothers of children with other diseases (13).
Psychological resilience is one factor that positively affects reducing the psychological consequences of caregiving. Resilience refers to an individual's ability to bounce back from difficult life events despite being exposed to extreme pressures (14). Resilience plays a crucial role in preventing or mitigating many psychiatric disorders (15). Mothers of children with cancer are often more psychologically and emotionally involved in their child’s cancer and treatment, necessitating a high degree of resilience (6). A study by Rosenberg et al. found that parents of children with cancer had lower levels of resilience, more sleep problems, less satisfaction with their health, and reduced ability to express their concerns to the healthcare team (16). Additionally, a study conducted on mothers of children undergoing chemotherapy in Iran showed that the greater the caregiver burden, the lower the resilience (17).
Defense mechanisms, along with resilience, play a vital role in helping family caregivers adapt to stressful situations. Defense styles are primarily unconscious strategies aimed at protecting the ego from internal and external destructive risks and conflicts (18). These mechanisms shield individuals from the pressures caused by external and internal stressors, such as exposure to serious diseases like cancer, by controlling or modulating unacceptable motivations (19). The use of defense mechanisms is more prevalent among family caregivers compared to non-caregivers, and it often focuses on immature defense mechanisms. According to Abeni et al., caregivers tend to rely more on four immature defense mechanisms: Fantasy, withdrawal, repression, and projection (20).
The multidimensional impact of cancer on families, coupled with the possibility of premature death, makes cancer different from other chronic illnesses. As a result, family caregivers, particularly mothers, experience substantial stress. Therefore, identifying the coping mechanisms and emotional responses of mothers, who are often the closest caregivers to the sick child, is essential (21). However, previous studies have paid less attention to the subconscious processes, including the defense styles used by mothers of children with cancer in response to this disease, as well as the relationships between these defense mechanisms, resilience, and caregiver burden.
Given the negative consequences of high caregiver burden, early identification of factors contributing to it can play a crucial role in improving the health and well-being of both mothers and their sick children. Effective planning and intervention in this area require adequate information.
2. Objectives
Therefore, this study aimed to explore the relationship between defense styles, resilience, and caregiver burden in mothers of children with cancer.
3. Methods
This descriptive-correlational study was conducted from August to January 2022. The participants were mothers of children diagnosed with cancer and hospitalized in pediatric wards 1 and 2 of Seyed al-Shohada Hospital, affiliated with Isfahan University of Medical Sciences. Convenience sampling was used to select participants. The inclusion criteria were a willingness to participate and cooperate, the absence of other chronic diseases or congenital anomalies in the child, a minimum of three months having passed since the diagnosis of one of the common types of childhood cancers (including leukemia, lymphoma, and central nervous system tumors) confirmed by an oncologist (22), no mental illness or chronic diseases in the mother (as per self-report), the ability to read, write, and respond to questions, and no current caregiving responsibilities for another family member with a chronic illness. Mothers who did not fully complete the questionnaires were excluded from the study.
3.1. Sample Size and Sampling
The sample size was calculated using the formula below:
where α = 0.05, β = 0.1, Zα = 1.96, Zβ = 1.2816, and C = 0.5. Based on this calculation, the sample size was determined to be 113. To account for the possibility of dropouts, an additional 20% was added, and the final sample size was set at 136.
3.2. Data Collection Tools
Data were collected using a demographic characteristics form, which gathered information on variables such as the child's age and gender, the mother's education level, marital status, occupation, income status, diagnosis, current treatment method, and place of residence. Additionally, three standardized instruments were employed: The Defense Styles Questionnaire (DSQ-40), the Zarit Burden Scale (ZBS), and the Connor-Davidson Resilience Scale (CD-RISC) to collect relevant data on defense mechanisms, caregiver burden, and resilience, respectively.
3.2.1. Defense Styles Questionnaire (DSQ-40)
The Defense Styles Questionnaire (DSQ-40) was developed by Andrews et al. and consists of 40 items. The DSQ-40 uses a 9-point Likert scale for scoring, ranging from 1 (completely disagree) to 9 (completely agree). This questionnaire identifies 20 defense mechanisms classified into three categories: Mature, immature, and neurotic. A score exceeding 10 in any of the defense mechanisms indicates that the individual is utilizing that particular defense mechanism (23). Heidarinasab and Shaeiri standardized the DSQ-40 among Iranian students, confirming its validity in assessing defensive styles. The reliability of the questionnaire was established using Cronbach's alpha coefficient, which was reported as 0.74 (24).
3.2.2. Zarit Burden Scale
The Zarit Burden Scale (ZBS) was developed by Zarit S. and Zarit J in 1987 and consists of 22 questions that assess caregiver burden. Each question is rated on a 5-point Likert scale, ranging from 0 (never) to 4 (always). The total score reflects the level of caregiver burden, with scores ranging from 0 to 88. A higher score indicates a greater level of caregiver burden (25). In a study by Navidian et al., the validity of the ZBS was confirmed, and its reliability was measured using the retest method, resulting in a Cronbach's alpha coefficient of 0.94 (26).
3.2.3. Connor-Davidson Resilience Scale
The Connor-Davidson Resilience Scale (CD-RISC) was developed by Connor and Davidson in 2003 and consists of 25 questions. Each question is rated on a 5-point Likert scale, ranging from 0 (completely false) to 4 (always true). The total score ranges from 0 to 100, with higher scores indicating greater resilience (27). Rezaei and Rasouli standardized this questionnaire for adolescents in Iran. After confirming its validity, they reported a reliability score of 0.82 for the entire questionnaire using Cronbach's alpha coefficient (28).
3.3. Data Collection
To collect data, the researcher obtained written permission and made the necessary arrangements to attend Seyed al-Shohada Hospital in Isfahan. During face-to-face meetings with each mother, the researcher introduced himself and explained the purpose of the study. After obtaining written consent, the questionnaires were distributed. The researcher remained with the mothers throughout the entire response period to provide clarification and answer any questions they had regarding the questionnaire.
3.4. Data Analysis
The data were analyzed using STATA16, and a multiple regression test was employed to assess the predictive role of defense styles and resilience in the caregiver burden experienced by mothers of children with cancer. A significance level of less than 0.05 was considered for the analysis.
4. Results
The mean age of the mothers was 36.7 years (standard deviation = 6.11). The majority of the mothers had an education level below a diploma (41.18%), were housewives (85.29%), had a son (56.72%), were married (99.26%), and lived in urban areas (80.88%). Additionally, the income status of most mothers was below their living expenses (88.97%). The most common diagnosis for the children was leukemia (55.88%), and the most frequently used treatment method was chemotherapy (77.94%) (Table 1).
| Variables | No. (%) |
|---|---|
| Mothers’ education | |
| Lower/upper secondary | 56 (41.18) |
| Diploma/associate degree | 32 (23.53) |
| Bachelor’s | 39 (28.68) |
| Master’s/higher | 9 (6.62) |
| Mothers’ job | |
| Housewife | 116 (85.29) |
| Employed | 12 (8.82) |
| Self-employed | 7 (5.15) |
| Others | 1 (0.74) |
| Child’s gender | |
| Female | 59 (43.38) |
| Male | 77 (56.72) |
| Marital status | |
| Divorced | 1 (0.74) |
| Married | 135 (99.26) |
| Place of residence | |
| Village | 26 (19.12) |
| City | 110 (80.88) |
| Income | |
| Less than living expenses | 121 (88.97) |
| Higher than living expenses | 15 (11.03) |
| Diagnosis | |
| Leukemia | 76 (55.88) |
| Lymphoma | 18 (13.24) |
| Nerve tumors | 17 (12.50) |
| Others | 25 (18.38) |
| Current treatment | |
| Chemotherapy | 106 (77.94) |
| Radiotherapy | 1(0.74) |
| Chemotherapy/radiotherapy | 22 (16.18) |
| Others | 17 (5.15) |
Frequency of Demographic Information
The results of the study indicated that the mean caregiver burden score was 38.65, with a standard deviation of 11.63. The caregiver burden scores ranged from 14 to 58. The mean resilience score among mothers was 93.51, with a standard deviation of 14.05, and the scores ranged from 53 to 118. Additionally, the majority of mothers predominantly used the neurotic defense style (Table 2).
| Defense Styles | No. (%) |
|---|---|
| Mature | 46 (33.82) |
| Immature | 5 (3.68) |
| Neurotic | 85 (62.50) |
Frequency of Defensive Styles
The results of the multiple regression test revealed a significant inverse correlation between resilience and caregiver burden (P < 0.05), as well as a direct significant relationship between the child’s sex and caregiver burden (Table 3). Furthermore, the mature and neurotic defense styles showed no significant relationship with the caregiver burden of mothers of children with cancer (P > 0.05) (Table 4).
| Caregiver Burden | Coefficient | Standard Deviation | t | P-Value | Confidence Interval (95%) | |
|---|---|---|---|---|---|---|
| Child’s sex | 4.07 | 1.89 | 2.15 | 0.03 | 0.32 | 7.81 |
| Resilience | - 0.25 | - 0.06 | - 3.73 | 0.00 | - 0.38 | - 0.11 |
| Cons | 58 | 6.39 | 9.07 | 0.00 | 45.35 | 70.64 |
Factors Related to Caregiver Burden Using Multiple Regression Test
| Caregiver Burden | Coefficient | Standard Deviation | t | P-Value | Confidence Interval (95%) | |
|---|---|---|---|---|---|---|
| Mature defense style | 5.73 | 5.42 | 1.06 | 0.29 | -4.98 | 16.46 |
| Neurotic defense style | 9.14 | 5.29 | 1.73 | 0.87 | -1.33 | 19.61 |
| Cons | 31 | 5.14 | 6.02 | 0.00 | ||
Predictive Role of Defensive Styles in Caregiving Burden Using Multiple Regression Test
5. Discussion
The current study investigated the relationship between defense styles, resilience, and caregiver burden in mothers of children with cancer. The findings revealed that, on average, the mothers of children with cancer experienced a moderate level of caregiver burden, which aligns with previous studies conducted by Motlagh et al. (29), Chaghazardi et al. (7), and Ahmadi et al. (22). However, a study by Kahriman and Zaybak reported lower levels of caregiver burden among parents of cancer patients (30). Differences in the study population and the tools used to measure caregiver burden may partially explain this discrepancy. Based on our observations, in Iranian culture, mothers generally assume the primary caregiving role for their sick children, believing that no one can care for their child as well as they can. Given the extended caregiving responsibilities that Iranian mothers undertake, it is not surprising that they experience a significant caregiver burden.
The results of this study also showed that the mothers exhibited high levels of resilience, consistent with previous studies by Mohammadsalehi et al. (31), Toledano-Toledano et al. (32), and Maatouk et al. (33). However, these findings contrast with the studies by da Silva et al. (34) and Üzar-Özçeti̇n and Dursun (2020) (35), where da Silva et al. reported that most participants had moderate resilience (34), and Üzar-Özçeti̇n and Dursun found caregivers had low resilience (35). Differences in the duration of caregiving for a child with cancer may explain the discrepancy in resilience levels between the mothers in this study and those in the previous research. Resilience is a multidimensional concept that can evolve over time and is considered a potentially modifiable factor (32).
Furthermore, the results of this study revealed that the majority of mothers used neurotic defense styles. This suggests that mothers of children with cancer may adopt less effective coping mechanisms, such as neurotic defense styles, due to the exhausting nature of caregiving. However, if they can balance their defense mechanisms and employ more mature defense styles, they may achieve better adaptation (36). Abeni et al. similarly found that family caregivers predominantly used immature defense mechanisms (20), which is partially consistent with the present study's findings.
The study also found a significant inverse correlation between resilience and caregiver burden (P = 0.002). This is in line with Manzari et al.'s study (2023), which examined the relationship between caregiver burden and resilience in family caregivers of COVID-19 patients (37), and Rasulpoor et al.'s study, which explored the relationship between caregiver burden, resilience, and coping styles in mothers of children with autism (38). Resilient individuals tend to view challenges as opportunities for growth and prefer change over stability. The caregiving process for children with cancer can be a heavy burden, creating a stressful and overwhelming experience for mothers. Thus, resilience can play a crucial role in alleviating caregiver burden by helping mothers manage the psychological and physical challenges of caregiving (37).
Contrary to expectations, the results of this study found no significant relationship between defense styles and caregiver burden in mothers of children with cancer. A review of the literature showed no similar findings that align with these results. However, a study on caregivers of older stroke patients found that caregivers experiencing a higher burden of care were more likely to use negative coping strategies, such as escape-avoidance and distancing (which relate to denial, distraction, or detachment) (39). The discrepancy may stem from differences in the target populations and the data collection tools used.
The results of this study indicated that a child's gender was the only demographic variable that significantly predicted the caregiver burden of mothers of children with cancer. Consistent with previous research (22, 29), the caregiver burden was found to be significantly associated with the gender of the sick child. Specifically, mothers of male children with cancer experienced a greater burden than mothers of female children. However, some studies did not find a significant effect of a child's gender on the burden of care (8). It is possible that gender indirectly influences caregiver burden by affecting other factors that contribute to its increase. For example, research has shown that girls tend to exhibit more adaptive behaviors than boys when faced with new situations, including accepting cancer treatments (38). This could potentially make it easier for mothers to manage the challenges of caregiving.
The present study has a few limitations. It focused exclusively on mothers of children with cancer, so the findings cannot be generalized to caregivers of children with other chronic conditions. Additionally, the use of self-report questionnaires for data collection may have resulted in subjective responses.
The study revealed that the caregiver burden among mothers of children with cancer was moderate, while their resilience levels were high. The majority of mothers used neurotic defense styles. Furthermore, the results showed that an increase in resilience was significantly associated with a decrease in caregiver burden. However, no significant relationship was found between defense styles and caregiver burden. These findings suggest that interventions, as well as psychological and counseling programs aimed at enhancing resilience, could be beneficial in reducing the caregiver burden among mothers of children with cancer.
