ABSTRACT
The aim of this study is to determine the correlation between the perceived social support and burnout levels of the mothers of intellectually disabled (ID) children and the affecting factors.
This descriptive and cross-sectional study was conducted in the fourteen Special Training and Rehabilitation Centers in the city center of Trabzon between 1st June 2014 and 30th November 2014. The sample of the study consisted of 128 mothers who had 6-14 year old children with intellectual disability. The data of the study were collected using the Personal Information Form, Maslach Burnout Inventory, and Multidimensional Scale of Perceived Social Support.
In this study, more than half of the mothers were determined to have difficulty in the care of their ID children. These mothers were found to have difficulty mostly because of financial problems and their children’s aggressive behavior. It was determined that the relationships of one third of these mothers with their husbands and one fourth with their healthy children and relatives were negatively affected. The burnout levels of these mothers who had difficulty in the care of their ID children, were secondary school graduate, had an extended family, were unemployed, were on social security, and an ID boy, were found to be higher. In this study, while higher Multidimensional Scale of Perceived Social Support scores of the mothers were good it was unwanted stiuation their burnout levels were above the mean.
It is recommended to determine multiple factors causing burnout in the mothers of ID children, accordingly to support mothers using a multi-factorial team approach through different studies to be conducted concerning this matter, and for mothers to take short vacations and participate in activities they like.
Introduction
According to data from the World Health Organization, it is estimated that 10% of the total population in developed countries and 13% of the total population in developing counties consist of intellectually, physically, or emotionally disabled people. A disabled child or adult is found in one of every 7-8 families (1). The ratio of disabled children in Turkey is 12.3% (2).
When a child has a disability, all members of the family are affected to various degrees. The major caregiving responsibility usually falls to the mother (2-4). Mothers may experience intense stress due to these responsibilities, which can lead to burnout in them (4-7). Therefore, the causes of burnout experienced especially by mothers are important. Social support behaviors such as reducing the negative outcomes of the crisis experienced by families because they have a disabled child, making them feel valuable, and love will make adaptation of these families to this process easier and will help these families emotionally and physically (2,8,9).
Social support patterns for families with a disabled child are divided into two categories, namely, formal and informal. While formal social support systems are perceived as being given by professionals, informal support systems are perceived as being given by family members, friends and being a member of social groups that are integrated into the family’s daily life. Informal support is more efficient than formal support for protection against the negative effects of stress (3,9).
One of the most important factors making it easier to successfully adapt to the presence of a disabled child is to provide support services that will both help to meet the needs of the child and the family and make it easier to reduce disability-related problems (10). Unfortunately, since fathers consider their children’s disease or disability to be the fault of the woman in Turkey, they refuse to give their support to their wives and the woman’s immediate surroundings do not provide the required support in the period when the woman needs it most with the concern that responsibility for care of a disabled child would be left to them, and these are quite overwhelming for the woman and result in burnout. Therefore, various support systems especially for mothers with intellectually disabled (ID) children to cope with high levels of stress occurring due to the difficulties they experience and comprehensive studies to raise awareness about this issue are needed.
The aim of this study is to determine the correlation between perceived social support and burnout levels of those mothers with ID children and to detect whether or not perceived social support and burnout levels of mothers differ depending on socio-demographic variables, difficulties experienced by mothers, and the state of their personal relationships.
Materials and Methods
This is a descriptive and cross-sectional study. The study was conducted in the fourteen Special Education and Rehabilitation Centers in the city center of Trabzon between 1st June 2014 and 30th November 2014.
Ethics approval was received from Karadeniz Technical University Faculty of Medicine Scientific Research Ethics Committee (approval number: 24237859-179, date: 03.21.2014), a written permission from The Rehabilitation Centers in the city of Trabzon, and verbal consent from the participants were received. The principle of “Informed Consent” was fulfilled by informing mothers about purpose of the study, the principle of “Respect for Autonomy” was fulfilled by voluntary participation in the study and the principle of “Confidentiality and the Protection of Confidentiality” was fulfilled by saying that information to be obtained would be kept confidential.
Population and Sample Group
The population of the study consisted of the mothers of 220 ID children who were receiving regular physiotherapy and rehabilitation in special education and rehabilitation centers between the specified dates. The sample of the study consisted of 128 mothers who met the inclusion criteria and agreed to participate in the study. Children with ID, aged between 6-14 years, and informed consent of the legal primary caregiver of the child were the inclusion criteria. Families who refused to participate in the study, primary caregivers with cooperation problems and those who could not speak Turkish, and children having other disability problems (orthopedic, hyperactivity, or autism) were excluded from the study.
Materials
The data were collected using the Personal Information Form, Maslach Burnout Inventory (MBI) and Multidimensional Scale of Perceived Social Support (MSPSS).
Personal Information Form: The personal information form consists of 22 questions including the socio-demographic characteristics of the ID children and their mothers as well as their effects on their lives.
Maslach Burnout Inventory: The Maslach Burnout Inventory developed by Maslach et al. (11,12) is by far the most popular instrument to assess burnout. The validated 22-item MBI was used to assess burnout because of its proven reliability, ease of completion, validity, and applicability to the general population. The MBI identifies the frequency (how often) various feelings occur over a 12-month period, with a total of 22 questions grouped into the three dimensions, namely emotional exhaustion (EE) (EE; items 1, 2, 3, 6, 8, 13, 14, 16, and 20), depersonalization (DP) (DP; items 5, 10, 11, 15, and 22), and reduced personal accomplishment (PA) (PA; items 4, 7, 9, 12, 17, 18, 19, and 21). The answer to each question rated the experiences on a 5-point Likert scale, ranging from “never” to “everyday” (13). High scores on emotional exhaustion and depersonalization and low scores on personal accomplishment are signs of burnout.
MBI had been translated into Turkish and used as a data collection instrument in the field of medicine before (14,15). It was found to be reliable and valid. Ergin (15) found reliability coefficients to be 0.83 for EE, 0.65 for DP, and 0.72 for PA. Cronbach’s alpha coefficient of the scale was determined to be 0.77. Cronbach’s alpha coefficient was 0.78 for the EE subscale, 0.66 for the DP subscale, and 0.67 for the PA subscale.
Data Collection
The data were collected by researchers using the face-to-face interview method. It took on average 30-35 minutes to collect the data. The instruments were tested in a pilot study that included 10 mothers, and confirmed a high level of item acceptance and comprehension. The assessments were conducted by the children’s own physiotherapists, who had at least 5 years of experience in treating disabled children.
Statistical Analysis
The SPSS 19.0 package software was used to analyze the data of the study. The data were assessed by using the Cronbach’s alpha coefficient, percentage distribution, mean, standard deviation, Pearson’s correlation analysis, independent samples t-test, one way analysis of variance (ANOVA) and the Tukey test as an advanced analysis for values determined to be significant in the analysis of variance. The confidence interval was 95%; p<0.05 was considered to be statistically significant.
Results
The Socio-demographic Characteristics of Participants
It was determined that 40.6% of the mothers were 40 years old or older, 65.6% were primary school graduates, 7% were employed, 85.9% had a nuclear family, 18.8% had 4 or more children, and 32.8% had kinship with their spouses. The average age of the disabled children included in the study was 11.30±3.88 years and 58.6% were male (Table I).
Comparison of the Mothers’ Characteristics and the Maslach Burnout Inventory
The total mean scores of MBI were 29.11±12.14. It was found that the EE subscale’s mean score was 14.83±7.78, the DP subscale’s mean score was 4.94±4.03, and the PA subscale’s mean score was 9.33±5.60.
In this study, there was found to be a statistically significant negative correlation between the family’s income level and the mean scores of the DP subscale. It was determined that there was no significant correlation between the age of the ID children and the mean scores of the MBI (Table III).
In this study, the MBI’s mean scores of those mothers aged between 20-30 years and over 40 years were 29.23±10.82 and 29.82±12.26, respectively. Those mothers who had graduated from a university had lower scores for the MBI and its subscales. It was determined that the difference between mothers’ socio-demographic characteristics and the mean scores of the MBI was not statistically significant (Table III).
The MBI’s mean scores (30.53±12.27) of those mothers who had difficulty in the care of their child were higher. In this study, the difference between those mothers who had difficulty in the care of their children and the mean scores of the EE and DP subscales were statistically significant (p<0.05, Table IV).
It was determined that those mothers who stated the status of their relationship as “no knowledge about their spouse”, were 13.14±6.51 of the PA subscale’s mean scores and the difference between them was statistically significant. The EE and DP subscales’ mean scores of those mothers with financial difficulties were 20.27±8.62 and 7.63±4.24, respectively. Those mothers supported by their surrounding (neighbors, relatives), it was 19.80±13.47 for the mean score of the PA subscale and the difference between them was statistically significant.
Discussion
Comparison of Some of the Mothers’ Characteristics and the Maslach Burnout Inventory
In this study, more than half of the mothers were determined to have difficulty in the care of their ID child. The difference between those mothers who had financial problems due to the care of their children and the mean scores of the EE and DP subscales was statistically significant (Table IV). These results are important in terms of revealing the importance of being supported regarding physical and financial difficulties experienced by these mothers.
Those mothers who were ignored or divorced by their husbands had higher scores on the PA subscale (Table IV). This result can be asserted as an indicator for women’s coping with difficulties in the absence of their husbands and the struggle to be successful. Having a disabled child creates new problems since it comes with responsibilities such as the care of the child, health, education, and social relations. Thus, couples experience burnout in their relationship. Even though the couples’ burnout does not always lead to divorce, it reduces the quality of the relationship. In this case, they might perceive their whole relationship to be complicated and compelling (31). Improving marital satisfaction, co-parenting and parenting practices would reduce parental burnout. Hence, in cases where the child also suffers from a chronic disease, it may therefore be of particular importance for healthcare practitioners to emphasise the importance of shared parental responsibility to prevent stress and burnout in mothers (32).
In this study, it was determined that the MBI’s mean score of those mothers whose relationships with their relatives were negatively affected were higher and the difference between them was statistically significant. These mothers with children exhibit high levels of stress, a high rate of psychological problems, and burnout. It is of great importance that mothers are supported in coping with these issues and maintaining their health in this context. It is stated that social support reduces stress, contributes to developing positive coping skills and diminishes burnout (33).
It was determined that mothers who had financial problems due to the special education of their child received higher mean scores on the EE and DP subscales and the difference between them were statistically significant. In the literature, financial difficulties increase stress and influenced mental health. It is pointed out that a family’s financial status has an effect on the parents’ coping with their child’s limitations (33). Studies have demonstrated that carers for ID children experience additional psychological distress and depression compared to the parents of normal children. Some studies have also reported negative outcomes among the carers such as physical problems, social, as well as financial issues for the child’s family. This often leads to marital breakdowns and divorce (34).
Conclusion
In this study, more than half of mothers were determined to have difficulty in the care of their ID child. Mothers were found to have difficulty mostly due to financial problems and the aggressive behavior of the child. The relationships of one third of the mothers with their husbands and one fourth with their healthy children and relatives were affected negatively. A positive significant correlation was determined between the family’s income level and the MSPSS, significant other and friend subscales of the scale. The burnout levels of those mothers who had difficulty in the care of their ID children, had only graduated from secondary school, had an extended family, were unemployed, used social security and had an ID boy were found to be higher. In this study, while higher MSPSS scores of the mothers were good it was unwanted stiuation their burnout levels were above the mean.
In accordance with the results obtained from the research; it is recommended to determine the multiple factors causing burnout in mothers of ID children through different studies to be conducted on this subject, to support mothers by using a multi-factorial team approach towards this goal, to positively change the perception of society regarding ID children, to increase the number of official institutions to be utilized by these children in terms of special education and social aspects and the number of employees, to provide counseling services to support the mother and child, to extend the context of legal regulations with government support, and for mothers to take short vacations and participate in activities they enjoy.