The Financial Situation of Families and the Quality of Life and Coping with Stress of Children with ASD during the SARS-CoV-2 Pandemic

Abstract

The aim of the study was to compare children with ASD from families with low and medium financial status in terms of quality of life and coping with stress during the SARS-CoV-2 pandemic and the material status of the family related to their financial situation during the pandemic. The diagnostic survey method was used in the research study. A total of 120 children with autism spectrum disorder (ASD) aged 11–14 years participated in the study. The following tools were used to achieve the goal: Quality of Life of Students by S. Kowalik, “Jak Sobie Radzisz” by Z. Juczyński and N. Ogińska-Bulik and a proprietary questionnaire by the author. The research results indicate that during the SARS-CoV-2 pandemic, children with ASD from families with an average financial status are more satisfied with functioning in the family and more satisfied with themselves than children from families with a low financial status. Moreover, children with ASD from low-status families prefer strategies of focusing on emotions, which are not constructive and make functioning difficult, more often than their peers from families with average financial status. The results of the research show a positive correlation between the quality of life in the dimensions of satisfaction with the family, one’s local environment and oneself and active coping (disposition) and seeking social support; and a negative correlation with the strategy of focusing on emotions (disposition). It is advised that families with children with ASD be supported during the pandemic.

1. Introduction

The SARS-CoV-2 pandemic has changed everyday life and its functioning in various areas over the last year. It has caused concern for life and health, as well as for the family’s financial future. Families with a disabled child found themselves in a particularly difficult situation as the risk of their financial situation deteriorating was much higher, due to their situation being worse before the pandemic began. A disability itself may be one of the main social risk factors which significantly affects quality of life and the deterioration of the family’s financial situation. Research shows that families of people with disabilities are in a worse financial situation than the rest of society. If there is a disabled person in the family, the standard of living drops significantly. This applies to all lines of poverty. Beginning with the minimum subsistence level, through statutory poverty, and ending with relative poverty. Poverty rates increase by about 1/3 compared to the general population. The most difficult situation is that of families with a disabled child as these function much worse than independent adults, and even those families where the head is a disabled person. The chance of falling into poverty for such people is several times greater than for their fellow citizens (Błeszyński and Orłowska 2015).

The financial situation of families with children with autism spectrum disorders is particularly difficult as there are many reasons for such a condition, and the very type of disorder itself generates costs that affect the quality of individual, family and social life. Very often, due to the unpredictable nature and course of the disorder, one of the parents is forced to give up paid work to look after the disabled child. Moreover, the costs related to treatment and therapy are particularly burdensome for the family budget (Frączek and Gagat-Matuła 2018).

The results of a sociological research study entitled “Everyday life in the pandemic. A report from the second stage of research” indicates that Poles are increasingly feeling the effects of the pandemic and are ever more aware of the financial consequences. The report shows that respondents most often worry about losing their job, becoming infected and not being able to continue with therapies for the treatment of chronic diseases, but they are also afraid of changes in their psychological condition (Drozdowski et al. 2020). Moreover, as many as 83.4% of women and 75.8% of men indicate concerns about the future after the pandemic, emphasizing the economic crisis and accompanying phenomena such as unemployment, poverty and increasing social inequalities (Drozdowski et al. 2020).

Another research study conducted by CBOS, “Effects of the coronavirus epidemic on working life and home budgets”, from 2020, confirms these fears and shows that during the period of the SARS-CoV-2 pandemic, a loss of earning potential (which does not have to mean full unemployment) was recorded by 27 percent of respondents’ families. Moreover, a quarter of the respondents were people who had themselves either lost their jobs (i.e., they were dismissed by their current employer or had to close their business) or—much more often—were in the situation that someone from their immediate family had lost their job. A research report prepared by CBOS reports that the negative effects of the epidemic in the field of employment are more often felt by women (33%) than men (21%). Most often, people declaring the lowest income per person (up to PLN 999—45%), as well as negatively assessing their material conditions (52%) report the loss of a job in one form or another. This type of problem affects middle-aged respondents more often than others—from 35 to 54 (aged 35–44—34% and aged 45–54—33%) (CBOS 2020).

Other studies also confirm that the financial situation of households has worsened as a result of the SARS-CoV-2 pandemic, but they additionally show that the well-being of Poles has worsened as a result of the pandemic. According to the aforementioned studies, the group particularly exposed to increased stress is adolescents aged 18–24, who experience certain negative emotions much more often in a pandemic, especially feelings of helplessness (44% compared to 31% among the general population), depression (32% compared to 21% among the general population), as well as discouragement and weariness (47% compared to 36% among the general population (CBOS 2020)).

When children experience poverty it adversely affects their emotional and social development, significantly affecting their quality of life. High financial status is not a guarantee of happiness, but the lack of a basic financial foundation creates stress related to the failure to meet basic requirements related to providing basic everyday family needs, health care and education (Council of the European Union 2012).

People with autism spectrum disorder—Asperger’s syndrome—have difficulty in understanding their own feelings and emotions, as well as reading emotions in others. People with ASD are more emotionally labile than non-disabled people. This is due to characteristic, typical axial symptoms of Asperger’s syndrome, which are manifested by social and communication deficits as well as persistent interests and repetitive behaviors. These abnormalities concern all areas of life, although their intensity may vary (DSM-5 2012).

A key predictor of behaviors undertaken by young people in the process of coping with difficult situations such as the period of the SARS-CoV-2 pandemic, is subjective assessment of the situation and their own abilities. This phenomenon can be considered within the phenomenological-cognitive concept of stress and the coping with such stress (Lazarus and Folkman 1984). R.S Lazarus and S. Folkman developed theories of transactional psychological stress. According to the authors, stress is “a specific relationship between a person and the environment, which is assessed by the person as overburdening or exceeding their resources and threatening their well-being” (Lazarus and Folkman 1984, p. 19). In addition, stress is a factor that disturbs the balance of the body and indirectly affects the health of the individual and the severity of any diseases (Chopra 1987; Wrońska-Polańska 2008).

Stress researchers believe that the effects of stress are determined more by coping strategies than by the objective properties of stressors. Effective coping requires the involvement of resources, the building, protection, retention and promotion of which are the basis of human well-being (Hobfoll 2006). According to Lazarus and Folkman (1984, p. 141), coping with stress is the “constantly changing cognitive and behavioral efforts of individuals aimed at mastering specific external and internal requirements judged by an individual to be burdening or exceeding their resources”. The definition defines coping with stress as a dynamic effort resulting from the assessment of a situation as stressful. Lazarus and Folkman distinguish two styles of coping—the first is task-oriented problem-solving, and the second is emotion-focused action (Lazarus and Folkman 1984). The task-focused style consists of taking actions aimed at solving a problem or changing an existing stressful situation by using cognitive processes. The style focused on emotions, meanwhile, is characteristic of people who prefer wishful thinking and fantasizing at the expense of effective and rational action aimed at removing or minimizing a stimulus of stress (Strelau et al. 2005).

Effective coping in difficult situations is crucial in achieving well-being and happiness, which, according to J. Czapiński, are referred to as “quality of life”. To measure quality of life, objective indicators are used relating to living conditions, as well as subjective indicators, i.e., individual evaluation criteria. The subjective dimension refers to social, material, environmental, health and other areas of functioning from the cognitive perspective (evaluative assessment of one’s own life—present, past and future). It also includes two other indicators: the will to live and the desire to live (Czapiński 1992).

Studies by Czapiński and Panek (2011) show that strategies of coping with stress affect the level of mental well-being regardless of the intensity of stress experienced: individuals who use an active task strategy achieve better well-being indicators than people who use passive emotional strategies or who succumb to problems, regardless of the intensity of stress they experience (Czapiński and Panek 2011).

As mentioned earlier, families with children with disabilities are in a particularly difficult situation during the SARS-CoV-2 pandemic and their psychosocial functioning may be additionally reduced. This is due, on the one hand, to the much worse financial situation of the household resulting from additional costs related to education and therapy for the child, the resignation from work of one parent to care for the disabled child and the low benefits offered by the state compared to families with healthy offspring. On the other hand, the emotional and social burden and the difficulties of children suffering from Asperger’s syndrome, which have worsened as a result of isolation during the SARS-CoV-2 pandemic, may also be affected by the deteriorating financial situation of the family and the helplessness of its members. The above-mentioned factors may aggravate stress and deteriorate the quality of life of children with ASD. Hence, it is very important to know the quality of life and the coping strategies used by children with ASD in such a difficult situation as the period of the SARS-CoV-2 pandemic.

2. Assumptions of Own Research

The aim of the study is to compare children from families with low and average financial status in terms of the quality of life and coping with stress of children with ASD during the SARS-CoV-2 pandemic and the material status of the family related to their financial situation during the pandemic.

1. Do children with ASD from families with low and average financial status have a different quality of life during the SARS-CoV-2 pandemic, and if so, to what degree?

2. What strategies for coping with stress are preferred by children from families with a low financial status compared to children from families with an average financial status during the SARS-CoV-2 pandemic?

3. Is there a relationship between the styles of coping with stress and the declared quality of life, and if so, what is the relationship?

In this study, no hypothesis was made to the research problem as the issue raised is exploratory.

3. Test Method and Sample Characteristics

The diagnostic survey method was used in the research study. The following tools were used: JSR—“Jak Sobie Radzisz”—by Z. Juczyński and N. Ogińska-Bulik, Scale of the Quality of Life of Students by S. Kowalik and a self-written questionnaire.

JSR—“Jak Sobie Radzisz”—is a tool that is part of the collection “Tools for Measuring Stress and Coping with Stress” by Z. Juczyński and N. Ogińska-Bulik (11–17). The definition of coping on which the authors relied when constructing the scale refers to the transactional approach to stress by Lazarus and Folkman (1984). It consists of two aspects; the first is designed to assess the available methods of coping with a difficult situation, and the second is situational. In the first part, the respondent responds to a standard difficult situation, in the second, to the difficult situation he describes, experienced over the past year. On the entire scale, the results were similar (0.85–0.87) for all age categories. For three scales describing different coping strategies, the values of the coefficients were in the range 0.68–0.73. For the situational version, the internal compliance indicators turned out to be slightly lower (0.66–0.71) than for the disposable version. The stability of the scale was verified by testing it twice, six weeks apart, as a result of which satisfactory correlation indicators were obtained. The accuracy of the JSR scale was tested by correlating the scale results with the results of other similar tools. A positive correlation was found between the three JSR strategies and similar behavior patterns assessed on the basis of the Moos inventory (CRI-Youth). The presence of statistically significant relationships with the CSEI S Coopersmith scale and the KOMPOS scale (https://www.practest.com.pl/jsr-jak-sobie-radzisz (accessed on 10 February 2020)) was also confirmed.

The Quality of Life of Students tool by S. Kowalik consists of 12 items relating to specific areas of life. The areas of life are grouped into 4 main categories: family life, school life, functioning in the local community and self-satisfaction. The respondents indicate on a five-point scale how satisfied or dissatisfied they are with particular areas of life. The lower the score, the lower the child’s satisfaction with a given area of life.

The self-constructed questionnaire includes semi-open and closed questions and consists of three parts. The first part contains data on the child’s parents, namely gender, age, education and place of residence. The second part contains questions about the financial situation of the household before and during the pandemic: employment, income per person, savings and housing conditions. The third part concerned the child’s diagnosis—ASD—Asperger’s syndrome and the age criterion 11–14 years.

The research was conducted in 2021 at the Specialist Outpatient Clinic for People with Autism for Children in Leżajsk. Deliberate random sampling was used. The study involved 120 children diagnosed with a spectrum of autistic disorders—Asperger’s syndrome, aged 11–14. A total of 86 boys and 34 girls were examined. The analysis of the data shows that mainly mothers were surveyed (87%), while only 13% of fathers were surveyed. The average age of the surveyed parents was 45 (from 21 to 56). The mothers in group A had either secondary (68%), vocational (17%) or higher (15%) education, while for fathers the figures were secondary education (52%), vocational education (41%) and higher education (7%). In order to assign the children to the appropriate group in terms of the financial situation of the household, a questionnaire was conducted with the child’s parent (questions from the second part of the questionnaire). Two groups were distinguished during the SARS-CoV-2 pandemic—group A with low material status (n = 62) and group B with average material status (n = 58). The division into groups was based on the amount of income, determined on the basis of the Act on Social Assistance of 2004 (Journal of Laws of 2004, No. 64, item 593, https://isap.sejm.gov.pl/isap.nsf/DocDetails.xsp?id=WDU20040640593 (accessed on 10 February 2020)) as the income criterion for 2019–2020 for receiving family allowance and supplements to family allowance, i.e., PLN 764 for families whose member is a child with a certified disability or a certificate of moderate or severe disability. As many as 70% of respondents do not have savings, while the remaining 30% of respondents have savings—the amount is relatively low, in the range of PLN 5000–10,000 (19 people), PLN 10,000–20,000 (14 people) and from PLN 20,000 to 30,000 (3 people), while savings over 30,000 were not held by any family. All the families examined were full families, in 70% of which both parents were employed, and in 30% of which the mothers were unemployed and only the father worked. The respondents lived in the city (55%) or in the countryside (45%). Their housing situation was good; 79% live in their own flat and 21% with their in-laws.

The research is consistent with the assumptions of social research methodology. The research used so-called strong, standardized psychological tools, in which the accuracy and reliability of the tool, not the questionnaire, is examined. Therefore, it was possible to study the relationship between quality of life and coping with stress using higher statistical analyses, including correlation analysis. Non-probabilistic selection and deliberate random sampling were used. Such sample selection is permitted using standardized tools (the validity and reliability of the tool) for groups that are difficult to access (Babbie 2003) such as children with ASD, especially during a pandemic. The sample was large considering the hard-to-reach group and the pandemic lockdown.

4. Results

Analysis was conducted of the differences in the quality of life of children with ASD from families with low and average financial status during the SARS-CoV-2 pandemic.

Below, the assessment of the quality of life of children with ASD during the SARS-CoV-2 pandemic is analyzed, taking into account the following dimensions: family life, school life, functioning in the local community, self-satisfaction.

For this purpose, the mean values were calculated for children with ASD from families with low financial status (basic group “A”) and children with ASD from families with average financial status (comparative group “B”).

The significance of differences test (Student’s t-test) was also calculated. The results of the analyses are presented in

Table 1. Significance of differences between children with ASD from families with low and average financial status in terms of quality-of-life assessment during the SARS-CoV-2 pandemic.

Quality of Life Dimensions of Scales	Gr. A		Gr B		T		P
	M	Sd	M	Sd
Family life	12.11	0.27	12.90	0.21	2.33	2.30	0.022
School life	11.45	0.35	11.11	0.24	0.82	0.80	ns.
Functioning in the local community	11.15	0.23	12.01	0.20	0.42	0.42	ns.
Self-satisfaction	11.60	0.26	12.54	0.23	2.34	2.38	0.021

Source: own study. ns.—statistically not significant.

.

The analysis showed significant differences between children with ASD from families with low and average financial status during the SARS-CoV-2 pandemic in the dimensions of family functioning and self-satisfaction. Children with ASD from families with an average financial status assess their functioning in the family as higher than children from families with a low financial status. In addition, they are more satisfied with themselves than children from low-income families. The results are statistically significant.

Differences were found in the preferred coping strategies of children with ASD from families with low and average financial status during the SARS-CoV-2 pandemic.

The differences were analyzed again using the Student’s t-test, and the results are presented in

Table 2. Significance of differences between ASD children from families with low and average financial status in terms of preferred strategies of coping with stress.

Stress Coping Strategies		Group	M	Sd	T
Disposition	Active coping	A	1.51	1.08	t (101.91) = 0.34
		B	1.46	0.89
	Focus on emotions	A	1.15	0.90	t (71.45) = −4.66 ***
		B	0.43	0.61
	Searching for social support	A	0.92	0.81	t (104) = −1.15
		B	1.14	0.92
Situational	Active coping	A	2.33	0.82	t (88) = 0.24
		B	2.32	0.68
	Focus on emotions	A	1.75	0.79	t (88) = −2.37 *
		B	1.34	0.83
	Searching for social support	A	1.51	0.81	t (88) = −1.41

* p < 0.05; ** p < 0.01; *** p < 0.001. Source: own study.

.

In terms of stress coping strategies, during the SARS-CoV-2 pandemic, both children with ASD from families with low and with average financial status most often prefer to actively deal with stressful situations, both as a permanent disposition and as a situational strategy. This approach involves positive functioning with active and constructive action aimed at solving problems.

However, in terms of the strategies of coping with stress during the SARS-CoV-2 pandemic, there are also statistically significant differences between children with ASD from families with low and with average financial status. These concern one particular coping strategy—focus on emotions—, which for both availability (t (71.45) = 4.66; p < 0.001) and situational (t (88) = −2.37; p < 0.05) is higher in the group of children with ASD from families with low financial status. This proves that children with ASD from families with low financial standing choose strategies that are not constructive more often than their peers from middle-class families. More often, they escape into a world of emotions, dreams and wishful thinking instead of trying to constructively solve a given problem. However, no differences were found in the strategy of seeking social support.

Subsequently, the correlations between the variables were analyzed (

Table 3. Pearson’s r correlations between the variables: quality of life and coping with fear.

Variables	Active Coping (Dispositional)	Focus on Emotions (Dispositional)	Searching for Social Support (Dispositional)	Active Coping (Situational)	Focus on Emotions (Situational)	Searching for Social Support (Situational)
Family life	0.345 ***	−0.387 ***	0.499 ***	0.111	0.132	0.101
School life	0.161	0.156	0.152	0.188	0.193	0.188
Functioning in the local community	0.337 ***	−0.336 ***	0.341 **	0.177	0.133	0.141
Self-satisfaction	0.352 ***	−0.440 ***	0.187	0.144	0.129	0.199

* p < 0.05; ** p < 0.01; *** p < 0.001. Source: own study.

) using the r-Pearson correlation (regarding the interval level of the variables, the variables had distributions close to the normal distribution).

Clear or significant correlations with low or moderate relationship strength were observed.

The analysis of the r-Pearson correlation showed that satisfaction with family life was positively correlated with active coping (available) (r = 0.345, p = 0.001) and seeking social support (available) (r = 0.499, p = 0.001) and negatively with focus on emotions (situational) and focus on emotions (disposition) (r = −0.387, p = 0.001).

Thus, children with ASD (regardless of the financial status of the family) who assessed their quality of family life as higher preferred active coping and seeking social support rather than the strategy focused on emotions.

Similar results were obtained for the dimension satisfaction with functioning in the local community, which positively correlated with active coping (disposition) (r = 0.337, p = 0.001) and seeking social support (r = 0.341, p = 0.006) and negatively with focus on emotions (disposition) (r = −0.336, p = 0.001).

Children with ASD (regardless of the financial status of the family) who rated satisfaction with functioning in the local community higher, preferred active coping and seeking social support, and did not choose the strategy focused on emotions.

The results of the study also showed a positive correlation between self-satisfaction and active coping (disposition) (r = 0.352, p = 0.001) and a negative correlation between self-satisfaction and the strategy focused on emotions (disposition) (r = −0.440, p = 0.001).

Children with ASD (regardless of the financial status of the family) who assessed their satisfaction with themselves as high, preferred active coping and seeking social support, and not the strategy focused on emotions.

From the correlations described above, it can be concluded that children with ASD who experience greater satisfaction in life regarding their family, their local environment and themselves, less often use strategies of coping with stress focused on emotions (disposition) and more often use constructive stress such as active coping (disposition) and seeking social support.

5. Conclusions

The results obtained in the study presented above provided answers to the research questions.

During the SARS-CoV-2 pandemic, children with ASD from families with an average financial status are more satisfied with their functioning in the family than children from families with a low financial status. In addition, they are more satisfied with themselves than children from low-income families. The results may suggest that children with ASD from families with an average financial status do not experience negative emotions from their parents, who are not so worried about their financial situation and are not stressed by not being able to meet the basic needs of the family, but instead focus on building and nurturing family relationships.

In terms of coping strategies during the SARS-CoV-2 pandemic, children with ASD both from families with low and with average financial status most often prefer active coping in difficult situations such as the pandemic, both as a permanent disposition and only as situational. This is a positive aspect of functioning using active and constructive action aimed at solving problems. However, children with ASD from low-status families more often than their peers from families with average financial status prefer strategies of focusing on emotions, which are not constructive and make functioning difficult, causing the child to escape to wishful thinking without trying to constructively solve the given problem.

The analysis showed the existence of a positive correlation of the quality of life in the dimensions of family life, functioning in the local community and self-satisfaction with such dimensions of coping strategies as active coping (disposition) and seeking social support.

Moreover, a high quality of life negatively correlated with a lower level of concentration on emotions as a permanent disposition. Thus, the sense of satisfaction with life can be viewed in terms of a buffer that protects the child from unpleasant emotions and increases the possibility of them both using coping strategies as an active coping disposition and seeking social support.

To sum up, it is not only children with ASD who need support during the SARS-CoV-2 pandemic, but entire families, as the proper functioning of the entire family system affects the proper functioning of all its members. Parents’ emotions and stress related to, among other things, their finances have a negative impact on the functioning of a child with a disability.

Therefore, it should be emphasized that the families of children with ASD studied need help in various areas of functioning, including the following:

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psychology support (telephone consultations),

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information—vocational counseling, the possibility of changing forms of work, including flexible forms of employment, as well as social support.

These actions should be undertaken as soon as possible and involve all family members. Continuation of the research on children with ASD from families with different material status would appear to be of very great importance. The results obtained, meanwhile, encourage further, more detailed analyses. These will allow for a more precise identification of the mediating variables in the assessment of the well-being, stress and resources of families with a disabled child in such a difficult period as the SARS-CoV-2 pandemic. In the future, it is worth extending the topic with further research, including comparing the financial situation before, during and after the pandemic.