Attitude to the child's illness and parental burnout of women raising children with autism spectrum disorders

Kuzmina Anna Sergeevna PhD in Psychology Associate Professor, Department of Clinical Psychology, Altai State University 656049, Russia, Altai Krai, Barnaul, Lenin str., 61, office 302 annakuz87@yandex.ru Other publications by this author

Krivoshei Kristina Olegovna Postgraduate Student, Department of Clinical Psychology, Altai State University 656000, Russia, Altai Krai, Barnaul, Lenin str., 61, office 302 03fomina@mail.ru

The appearance of a child with developmental disabilities is a special developmental situation.  The high level of stress experienced by parents is accompanied by maladaptation processes in the field of mental and physical health.  The reaction to a child's illness is comparable to the reaction to any critical situation, since there is a "loss of an imaginary child", his healthy lifestyle and the future that the parents envisioned.  Therefore, the stress state for the family becomes chronic. The lack of an established support system for families with autistic children complicates the situation. Mothers often immerse themselves completely in the problems of the child, and cannot find support from loved ones, are deprived of communication with friends. Going outside on any business is accompanied by increased attention from passers-by, due to the lack of awareness of people about autism and its manifestations. The systematic stress faced by mothers leads to the development of symptoms of parental burnout ^[1,2].

Against the background of parental burnout, mothers develop a special type of attitude towards the child's illness. Parental attitude towards sick children moves to the "extreme poles" of many variants of parents' relationship to children, leading more often to overprotection or to a detached attitude towards the child ^[3].

The problem of the relationship between parental burnout and the attitude to the disease of a child, women raising children with autism spectrum disorders, is currently insufficiently developed, in particular, there is a shortage of data contributing to a systematic understanding of the state of the internal picture of women raising children with autism spectrum disorders. There is also insufficient research aimed at studying the role of the personality of mothers, their condition and attitude to the child's illness, raising children with autism spectrum disorders makes this problem excessively relevant ^[4].

The phenomenon of "burnout" was introduced by the American psychiatrist G. Freudenberger. Emotional burnout is a condition in which a person feels exhausted mentally, mentally and physically ^[5,6].

A complete and reasonable classification of burnout symptoms is considered to be the classification proposed by V. Schaufelli and D. Enzmann. The authors identified 132 symptoms of burnout, which they combined into 5 main groups: affective; cognitive; physical; behavioral;  motivational ones. The symptoms of burnout manifest themselves on three levels: – individually psychological, interpersonal and organizational ^[7].

V.V. Boyko, by burnout, means a variant of psychological protection of the individual, manifested in a partial or absolute rejection of the manifestation of emotional reactions in traumatic conditions ^[8].

N.E. Vodopyanova and E.S. Starchenkova define burnout as a complex concept that includes various negative psychological experiences and maladaptive behavior caused by prolonged stress ^[9].

Based on the data on the phenomenon of burnout, the phenomenon of parental burnout has been actively studied. A number of Russian researchers have highlighted this phenomenon in their works: L.A. Bazaleva, I. N. Efimova, N. N. Koroleva, T.Y. Fadeeva. 

Special attention should be paid to the study of parental burnout of women raising children with autism spectrum disorders.

Russian scientists have developed the basics of psychological assistance to the family in organizing interaction with an autistic child (K.S. Lebedinskaya, O.S. Nikolskaya, E.R. Baenskaya, M.M. Liebling, V.V. Tkacheva, N.G. Manelis), studied the styles of family education of children with ASD (I.I. Mamaichuk, E.V. Shabanova), identified the features maternal (paternal) attitude towards children with ASD (G.A. Evlampieva, L.S. Pechnikova, T.N. Vysotina, O.V. Guseva) ^[10,11].

L.S. Pechnikova's research proves that the parental attitude of mothers towards children with autism has a contradictory structure. According to E.A. Dorosheva and U.S. Grabelnikova, mothers raising children with autism spectrum disorders are diagnosed with the first phase of emotional burnout – tension ^[12].

T.N. Vysotina revealed contradictions between individual structural components at the level of emotions, ideas about the child and the style of interaction with him in mothers and fathers of children with ASD. The differences are mainly manifested in the behavioral and emotional components. Maternal feelings combine emotional acceptance and at the same time rejection of the child and increased fixation on him ^[13].

An important parameter in the study of parental burnout is the problem of attitudes to the child's illness. The attitude to the child's illness was considered by V.E. Kagan and I.P. Zhuravleva. They identified 5 models of reactions to the child's illness. The first reaction is characterized by the perception of the disease as something current beyond the competence of the parents. They believe that they cannot influence this process and prefer that "everything goes on as usual." The second reaction is anxiety. It can be either high, or vice versa, it can not be normally low. The third type implies an exaggeration of the child's illness. The fourth is the control of the child. Due to illness, parents may begin to limit the child in some activities, telling him that he is not healthy and cannot do everything that healthy children can do. And the latest reaction model is tension. The feeling of constant tension due to the child's illness, the inability to let go of this thought and relax ^{[14, 15]}.

I.I. Mamaichuk notes that the system of psychological support measures for parents raising children with ASD should be aimed at reducing emotional discomfort, forming an adequate attitude among parents to the child's condition, maintaining adequate parent-child relations and family parenting styles ^[16].

Mothers raising children with autism spectrum disorders have some common features that distinguish them from mothers raising normotypic children. Such features include a more negative attitude towards one's family role, the desire to limit non-family influences, excessive emotional concentration on the child and emotional distance, as well as the predominance of the desire to accelerate the development of the child over the desire to develop his own activity ^[17].

I.A. Roskam and co-authors identified three different aspects of parental burnout:

1. Emotional exhaustion associated with parenting;

2. emotional distancing from your children;

3. Loss of parental achievements ^[18].

Emotional exhaustion is the main symptom of parental burnout associated with parenting, leading to parents feeling extremely tired at the thought of spending another day with their children. Emotional distancing is the second symptom, and leads to a decrease in the involvement and number of interactions between parents and their children, to such an extent that their upbringing becomes mostly functional rather than emotional. The loss of achievements is the third symptom associated with their parental role. Parents no longer enjoy their parenting role, they are "tired" of parenting, and they no longer like spending time with their children ^[19].

Mothers strive to be perfect, pay more formal attention to the child. In some cases, a mother's perfectionism may lead to an intention to increase participation in the child's life and improve the well-being of her children, but in reality these intentions can lead to negative consequences for the child and the family. The negative consequences of the mother dominating the idealization process may include increased symptoms of depression in the child and a decrease in overall satisfaction with the child's life. In addition, the mother's tendency to perfectionism may lead to a decrease in the participation of the father and a decrease in the ability of fathers to invest in solving tasks related to child care ^[20,21].

The aim of the study was to identify the relationship of parental burnout with the type of attitude to the child and his illness in women raising children with autism spectrum disorders.

The subject of the study is parental burnout of women raising children with autism spectrum disorders.

The scientific novelty of the research. The symptoms of parental burnout of women raising children with autism spectrum disorders were revealed, the interrelationships of symptoms of parental burnout and types of relationships to a child of different ages were determined. It is theoretically justified and empirically proven that parental burnout of women raising children with autism spectrum disorders is interrelated with the peculiarity of emotional relations with the child and the mother's attitude to her parental role.

Research methodology: theories of parental burnout in parents raising children with autism spectrum disorders (V. V. Boyko, L. A. Bazaleva, O.S. Nikolskaya); provision on general and specific patterns of development of children with various types of dysontogenesis (L.S. Vygotsky, V.V. Lebedinsky, V.I. Lubovsky); approaches to the study of the characteristics of childhood-parental relations (A. Ya. Varga, R.V. Ovcharova, V. V. Stolin, A. S. Spivakovskaya, etc.).

The hypothesis of the study: it is likely that the symptoms of parental burnout and the type of attitude towards the child's illness in women raising children with autism spectrum disorders are interrelated with the emotional attitude towards the child.

The empirical study was conducted on the basis of the KGB "Altai Regional Center for Psychological, Pedagogical, medical and Social Assistance". 54 mothers raising children with autism spectrum disorders participated in the study on a voluntary basis. The age of the respondents is from 32 to 43 years old, the average age is 38.6 years, 24 women have preschool children, 30 women have primary school children. 24 women have 1 child, 23 women have 2 children, 7 women have 3 children.

Research methods and techniques:

The questionnaire "Parental burnout" by I. N. Efimova was used to study the level of parental burnout and its symptoms: emotional exhaustion, depersonalization, reduction of parental achievements. The "Questionnaire of child-parent emotional interaction" by E.I. Zakharova (the ODRAV method) was used to study the emotional interaction of mother and child, including three blocks: a block of sensitivity, a block of emotional acceptance, a block of behavioral manifestations of emotional interaction. The questionnaire for the diagnosis of the child's attitude to the disease (DOBR), developed by V.E. Kagan and I.P. Zhuravleva, was used to study the level of severity of internality, anxiety, nosognosia, and control of the child's activity.

Methods of mathematical and statistical data processing: analysis of averages, Mann-Whitney U-test, Kraskel-Wallace H-test, Spearman correlation analysis, linear regression analysis using the statistical package "SPSS Statistics 23.0".

The results of the study

Table 1 shows the results of comparing the indicators of symptoms of parental burnout of women raising children of different ages with autism spectrum disorders.

Table 1.

Comparative analysis of the average values of indicators of symptoms of parental burnout in women raising children of different ages with autism spectrum disorders

Emotional exhaustion, depersonalization, and reduction of parental achievements have an average level of severity in women raising children of preschool and primary school age. The application of the Mann-Whitney U-test did not show significant differences in the two groups of subjects, which indicates that the age of the child does not determine the severity of symptoms of parental burnout.

Next, using the Kraskel-Wallace H-test, we checked for differences in indicators of symptoms of parental burnout in women raising different numbers of children. There were no significant differences in the symptoms of parental burnout in women with one, two and three children. Table 2 presents a comparative analysis of the average values of symptoms of parental burnout in women with different numbers of children.

Table 2.

Comparative analysis of the average values of indicators of symptoms of parental burnout in women with different numbers of children

The results obtained indicate that women raising children with autism spectrum disorders are characterized by an average level of emotional exhaustion, depersonalization and reduction of parental achievements. Moreover, the most favorable situation is for women raising two children, we can assume that one of these children may be normotypic, which reduces the deprivation of needs in women raising children with autism spectrum disorders.

There were no significant differences in the types of attitude to the child's disease in women raising different numbers of children and children of different ages.

The correlations between the symptoms of emotional burnout and the relationship with the child in the group of mothers raising a child with the autistic spectrum of preschool and primary school age were revealed.

In the group of women raising a preschool child, a negative relationship was obtained between the depersonalization scale and the scale of "Providing emotional support" (r=-0.439; p=0.32); a negative relationship between the scale of "Reduction of parental achievements and the scale of "Feelings that arise in a mother in interaction with a child" (r=-0.496; p=0.014).

Depersonalization, manifested in the formal performance of their duties by parents, emotional coldness, is associated with the inability to provide emotional support to a preschool child with autism spectrum disorder.

The reduction of parental achievements manifests itself as a decrease in the sense of competence in fulfilling one's parental role. The reduction of parental achievements in women raising a child with an autism spectrum disorder of preschool age is interrelated with negative feelings that arise in a mother in a relationship with a child, these are most often feelings of frustration and confusion, helplessness.

In the group of women raising primary school children, a greater number of correlations between the scales of questionnaires were obtained, which indicates a closer relationship between parental burnout and attitudes towards a child in primary school age

Positive correlations of the scale "Emotional exhaustion" and the scales "Feelings that arise in a mother in interaction with a child" (r= 0.542; p=0.002), "Unconditional acceptance" (r= 0.632; p=0.001) were obtained.

Positive correlations of the scale "Depersonalization" with the scales "The ability to perceive the child's condition" (r=0.365; p=0.047), "The prevailing emotional background of interaction" (r=0.415; p=0.023), "Feelings arising from the mother in interaction with the child" (r= 0.538; p=0.002), "Unconditional acceptance" (r= 0.607; p=0.001); negative correlation with the scale of "Emotional support" (r=-0.415; p=0.023).

Negative correlations of the scale "Reduction of parental achievements" with the scales "Ability to perceive the child's condition" (r=-0.416; p=0.022), "Feelings arising from the mother in interaction with the child" (r= -0.532; p=0.003), "Unconditional acceptance" (r=0.718; p=0.001); positive correlation with the scale of "Emotional support" (r=0.569; p=0.001).

The results show that the development of symptoms of parental burnout in women raising children with the autistic spectrum is interrelated with the peculiarities of emotional relationships with a child. Emotional exhaustion, depersonalization, and reduction of parental achievements are interrelated with the peculiarities of contact with the child, the inability to understand the child, feelings arising in interaction with the child, and the inability to provide emotional support to the child. At primary school age, a greater number of requirements are imposed on the child, which in preschool age requires more interaction between the child and the parent to implement the tasks of the age, which contributes to the development of symptoms of parental burnout.

An important parameter determining the success of correctional work is the type of attitude to the child's illness. The type of attitude to the disease is determined by the peculiarities of the relationship between mother and child.

A linear regression analysis was applied, in which the scales of the child-parent emotional interaction questionnaire (PDE) were included as independent variables, and the types of attitude to the child's illness were included as dependent variables.  As a result, three reliable regression models of the type of attitude to the child's disease of women raising children with autism spectrum disorders were obtained (see Tables 3, 4, 5).

Table 3.

Predictors of an anxious reaction to a child's illness (n=54)

As can be seen from table 3, the predictor of an anxious reaction to a child's illness of women raising children with autism spectrum disorders is such characteristics of an emotional relationship with a child as "Unconditional acceptance", and the anti-predictors are "The ability to empathize", "Attitude towards oneself as a parent".

An alarming type of attitude towards a child's illness is associated with a mother's negative attitude towards herself, inability to empathize and unconditional acceptance of her child.

Table 4.

Predictors of nosognosia (n=54)

As can be seen from table 4, predictors of hypernosognosia of women raising children with autism spectrum disorders are such characteristics of an emotional relationship with a child as "Unconditional acceptance", "Providing emotional support" and anti—predictors are "The ability to empathize", "The desire for bodily contact".

Exaggeration of the symptoms of a child's illness is associated with unconditional acceptance of the child, providing emotional support and with an inability to empathize and restrictions on physical contact with the child.

Table 5.

Predictors of child activity control (n=54)

As can be seen from table 5, the predictor of limiting the activity of a child of women raising children with autism spectrum disorders is such characteristics of an emotional relationship with a child as "The ability to influence the child's condition", and the anti—predictor is "The desire for bodily contact".

The restriction of the child's activity is related to the control of the child's behavior and restrictions on physical contact with the child.

Thus, parental burnout syndrome is associated with chronic deprivation of needs, needs for interaction with the child and their own, which leads to an increase in stress levels in such mothers. Mothers raising children with autism spectrum disorders have some common features that distinguish them from mothers raising normotypic children. Such features include a more negative attitude towards one's family role, the desire to limit non-family influences, excessive emotional concentration on the child and emotional distance, restrictions on physical contact with the child, inability to give the child emotional support.

The study obtained three regression models for the types of attitudes to the child's illness. Predictors of an anxious reaction to the disease are: a) negative attitude towards oneself as a mother; b) unconditional child; and c) inability to empathize. Predictors of nosognosia are: a) unconditional acceptance of the child; b) provision of emotional support; c) inability to empathize and d) limitations of physical contact. Predictors of controlling a child's activity are: a) the ability to influence the child's condition; b) restrictions on physical contact.

There are no reliable correlations between the symptoms of parental burnout and the types of attitude to the child's illness.

The paper draws the following conclusions:

1.                 Parental burnout of women raising children with autism spectrum disorders is determined by the peculiarities of emotional relationships with a child. Data were obtained on different relationships between the symptoms of parental burnout and the type of relationship with a child of different ages. Thus, at primary school age, a large number of correlations between the symptoms of parental burnout and the type of relationship with the child were obtained. There are fewer such relationships in preschool age. Reliable differences on the differences in symptoms of parental burnout in women with different numbers of children and children of different ages have not been obtained.

2. Emotional exhaustion, depersonalization, reduction of parental achievements are interrelated with the peculiarities of contact with the child, the inability to understand the child, feelings arising in interaction with the child, the inability to provide emotional support to the child.

3. The type of attitude towards the child's illness is determined by the peculiarities of the emotional relationship between mother and child. Thus, the predictors of the types of attitude towards the child's illness are the feelings that arise in the mother in her relationship with the child, a negative attitude towards herself as a mother, unconditional child, restrictions on activity and physical contact.

The results obtained expand the available information about the features of parental burnout and the type of attitude to the child's illness of women raising children with autism spectrum disorders.

The limitations of the study are the small sample size, as well as its geographical representation, limited only to the territory of the Altai Territory. In addition, there is an insufficient balance of samples by socio-demographic characteristics.

We see the prospects for research on this topic in expanding the sample in terms of studying the order of appearance of a child in a family with autism spectrum disorders, studying fathers, as well as increasing the number of methods for analyzing a wider range of parameters of the emotional sphere of parents. In addition, the possibility of studying the cognitive and behavioral characteristics of women raising children with autism spectrum disorders can be noted as prospects.