Assessment of parents’ ways of coping with critical situations

 

 

Ślifirczyk A.1,A-F*, Krajewska-Kułak E.2,A,B,D,E,F, Brayer A.3,B,C, Sobolewski M.4C, Maciorkowska E.5E

 

1.    Department of Emergency Medicine PSW in Biała Podlaska, Poland

2.    Department of Integrated Medical Care, Medical University of Bialystok, Poland

3.    Centre for Postgraduate Education for Nurses and Midwives in Warsaw, Poland

4.    University of Technology Rzeszów, Poland

5.    Department of Developmental Age Medicine and Pediatric Nursing, Medical University of Białystok, Poland

__________________________________________________________________________________________

 

A - Conception and study design, B - Data collection, C –Data analysis, D - Writing the paper,

E – Review article, F - Approval of the final version of the article

__________________________________________________________________________________________

 

ABSTRACT

__________________________________________________________________________________________

 


Introduction:Stress experienced by parents of a disabled child can have a negative impact on family relationships.

Purpose: Assessment of parents coping with critical situations.

Materials and methods:We analyzed 83 families, including 30 families from Poland, 25 families from Belarus and 28 families from France and we used Coping Inventory for Stress Situations (CISS) and The General Self- Efficacy Scale (GSES).

Results: After hearing the diagnosis most often parents felt shock (63.3% from Poland, 68% from Belarus and France 85.7%). Main parents' emotions induced by the disability was fatigue (76.7% from Poland, 44% from Belarus and 71.4% from France - p=0.028) and sadness (73.3% from Poland, 40% from Belarus and 28.6% from France - p=0.002). Most often in response to the annoying and stressful child’s behaviour parents tried to admonish (76.7% from Poland, 56% from Belarus and 75% from France) or shout at the child (66.7% from Poland, 24% from Belarus and 17.9% from France p <0.001). The least likely preferred style of coping with stress in all countries was the search for socializing. The highest rate of self-efficiency characterize parents from France, the lowest from Poland.

Conclusions:The existence of factors which could significantly affect the level of burn-out syndrome in parents, such as the deterioration of the financial situation (mainly in Belarusian families), sadness, fatigue, insomnia (mainly in Polish families). Parents chose effective strategies of coping, and the predominant style was focused on the task. It has been shown that parents lack the ability to control negative emotions, which in particular affected Polish families (for example, domination of trials to admonish and explain, shouting at the child).

Key words: Autism, parents, Coping Inventory for Stress Situations, The General Self- Efficacy Scale


__________________________________________________________________________________________

 

 

 

*Corresponding author:

Anna Ślifirczyk, Department of Emergency Medicine PSW in Biała Podlaska

ul. Sidorska 95/97, 21-500 Biała Podlaska, Poland

e-mail: annapio1@tlen.pl

 

Received: 29.01.2016

Accepted: 6.06.2016

Progress in Health Sciences

Vol. 6(1) 2016 pp 116-122


© Medical University of Białystok, Poland

 

INTRODUCTION

 

Parents struggling with problems of an autistic child in everyday life note that providing lifelong assistance to persons with autism is a reality which we have to face. However, they are embraced by fear and uncertainty about where to find caring, lifelong help that is available, regardless of how difficult and abnormal behaviour their children have. So some of them experience paradoxical confusion of hope and despair. Furthermore, long-term, cumulative stress over time causes great strain in both of parents and between them, affecting the family and the relationships among them. A number of problems are piling up, and the consequence of living in tension is depression, anxiety, burnout syndrome. Burnout syndrome appears in them as a result of contact with a child who requires a large emotional, intellectual and physical input. It often becomes the basis of conflict in a marriage; partners derive less satisfaction from their relationship, and finally themselves as parents.

Manifestation of developmental disorders in a child can be a big shock to parents, and the diagnosis of autism affects the functioning of the entire family. The triad of autistic disorders and underlying cognitive deficit according to Pisula [1, 2], can trigger child's difficult behaviours that make taking care of the child particularly exhausting. Although, Olechowicz [3] emphasizes, parents usually try to provide the child with medical treatment from the very beginning of the disability, they often have an irrational attitude to the disorder and they use inappropriate defense mechanisms disturbing their relationship. After some time of a disturbed emotional balance, most of the parents, in the opinion of Maciarz [4], mobilize mentally to provide care and medical assistance to a child, and begin to seek rational methods of therapeutic and educational conduct with a child. The difficult situation due to the child’s disability favors the increase of cohesion of the family [4].

Problems faced by parents in the daily life of an autistic child depreciate their quality of life. Taking care of a disabled child requires sacrificing a significant part of the time, energy and strength. The disease of a child has a significant impact on many areas of a family life, such as physical and social situation and physical and mental health of family members. Many times parents are forced to change their life plans and objectives, which in turn leads to frustration and depression.

It should be noted that parents of a child affected by autism must first familiarize themselves with the disease, change their mentality and accommodate family habits so that they can receive a sick family member [5]. A characteristic feature of parental stress is its permanent nature and the lack of prospects for a change. Stress affects the sensitivity of parents towards their children's needs , the adequacy of their behaviour in relation to the signals coming from the child, the perception of the child as well as the increasing tensions in the relationship between mothers and fathers, and between parents and siblings growing in good health.

                The aim of this study was to assess parents coping with difficult situations and their ways of showing anger, depression and anxiety. A hypothesis has been stated that the majority of parents cope with difficult situations well.

 

MATERIALS AND METHODS

 

Parents of children diagnosed with autistic disease were subject to the survey. Parents came from three European countries: Poland , Belarus and France, wherein we endeavored to make a numerical structure similar due to the origin. The following inclusion criteria were adopted: living together with the child now and throughout the period of the disability, being biological parents, recognized (according to the criteria of ICD 10 or DSM IV) and documented chronic disability and its duration is a minimum of three years and the consent to the study. In contrast, the exclusion criterion was the lack of consent .

 The analysis included 83 families: 30 families from Poland, 25 families from Belarus and 28 families from France. The study used the following instruments: • Coping Inventory for Stress Situations (CISS) by Endler, Parker [6-8]. CISS Consists of 48 statements about different behaviours typical for people in distress. The surveyed have to determine on a five -point scale the frequency of given behaviour in stressful, difficult situations. Scores are formatted in three scales: SSZ - task- oriented style; SEZ - emotion - oriented style; SSU - avoidant style. The latter can be divided into ACZ - seeking distraction, and PKT - social diversion. SSZ involves making tasks, aiming at solving the problem by cognitive transformation or trying to change the stressful situation, SSE - is characteristic for people who, in stressful situations, focus their attention on themselves and on their own emotions. These people often get angry, they feel guilty, and they are depressed. SSU – consists in refraining from thinking about difficult situations that cause anxiety. Avoidance style can take two forms: engaging in substitute activities (ACZ), e.g. watching TV, overeating or seeking social contacts (PTS). The prevalence of the above states which describe the behaviour of the surveyed was evaluated in a five-point scale: 1 - never, 2 - rarely , 3 - sometimes , 4 – often, 5 - very often. Because every aspect of the style of coping with stress consisted of 16 items, the surveyed persons could obtain in each of them from 16 to 80 points [6-8].

The General Self- Efficacy Scale GSES [9-12] consists of 10 statements, which are included in a single factor. The scale measures the strength of the general beliefs about the effectiveness of the individual to cope with difficult situations and obstacles. Self-efficacy can predict the intentions and actions in various areas of human activities, including those in the sphere of health behaviour. Reliability - Cronbach's alpha factor was 0.85. The surveyed person circles the correct number of the answer by himself/herself . For each question there are four answers to choose from : no - 1; rather not - 2; rather yes - 3 and yes - 4. The sum of all points gives the overall rate of self-efficacy, which may be held in the range from 10 to 40 points.

A total of 30 questionnaires were distributed in Poland and in the study were used 30, in Belarus 30 questionnaires were distributed and 25 were used, and in France 30 questionnaires were distributed and 28 were used. Due to the nature of the data, an appropriate tool for statistical inference was the independence chi-square test. The critical level for all tests of significance was p<0.05.

 

RESULTS

 

The surveyed parents in Poland live mostly in the cities (57.7%) and (42.3%) in the rural areas. Parents from Belarus – also live mostly in towns (88%) and a negligible proportion (12%) in the country, and in France - mostly in towns (74.1%) and only 25.9% in rural areas. The age of mothers was in Poland on average 38.4 ± 6.8, in Belarus 36.0 ± 6.2, and in France 34.1 ± 6.5. The time since the diagnosis of autism in the child was in Poland 7.9 ± 2.7 years, in Belarus 7.2 ± 5.2 years, and in France 5.2 ± 3.2 years.

Reconciled to the child's disease were 17.5% of parents surveyed in Poland, 30% from Belarus and 52.5% from France. A different opinion was expressed by 50% of parents from Poland, 38.9% from Belarus and 11.1% from France. The problem with the unequivocal response had 64.7% of the surveyed parents from Poland, 17.6% from Belarus and 17.6% from France. The above dependencies were statistically significant                          (p= 0.001).

Respondents were asked about their feelings after hearing the diagnosis of the child. The shock was felt by 63.3% of Polish parents, 68% of Belarusian and 85.7% by French parents (p= 0.1388). Anger and grief accompanied 50% of parents from Poland, 36% from Belarus and 35.7% from France (p=0.452). The feeling that the child's disability is a punishment for their sins was expressed by 43.3% of Polish parents, 44% of Belarusian and 3.6% of French parents (p<0.001). The relief after the diagnosis was felt by 26.7% of parents from Poland, 8% from Belarus and 10.7% from France (p=0.112). The feeling that the diagnosis disappoints the family had 13.3% of Polish parents, 16% of Belarusian and 14.3% French parents (p= 0.961). The thought of placing a child in a learning disability center appeared in 6.7% of parents from Poland, 4% from Belarus and 3.6% from France (p=0.837). The study analyzed the impact of the child’s disability on parents’ emotions. Fatigue was indicated by 76.7% of Polish parents, 44% of Belarusian and 71.4% of French parents (p= 0.028). Sadness indicated 73.3% of Polish parents, 40% of Belarusian and 28.6% of French parents (p= 0.0019). Irritation affected 43.3% Polish parents, 20% Belarusian and 46.4% French (p= 0.0972). 20% of parents from Poland, 68% from Belarus and 17.9% from France enjoyed every day (p=0.0001). 50% of parents from Poland, 16% from Belarus and 17.9% from France had to resign form work (p= 0.006). 53.3% of Polish parents, 12% of Belarusian and 14.3% of French parents suffered from insomnia (p= 0.0001). The lack of motivation to exercise with children was reported by 16.7% of parents from Poland, 28% from Belarus and 28.6% from France (p= 0.4916). Jealousy, that their healthy children do better than their disabled ones was felt by 26.7% of parents from Poland, 20% from Belarus and 14.3% from France (p=0.505). The concern about the financial condition of the family was expressed by 16.7% of Polish parents, 28% of Belarusian and 17.9% of French parents (p=0.534). The problem with the unequivocal answer had 4% of parents from Belarus and none of the parents from Poland and France (p= 0.309). In the opinion of 13.3% of Polish parents, 8% of Belarusian and 7.1% of French parents (p= 0.688) the impact of the child's disability had no effect on their emotions.

Among parents' reactions to the annoying and stressful child's behavior, the dominant one was the attempt to admonish the child according to 76.7% of Polish parents, 56% of Belarusian and 75% of French parents (p= 0.193). 66.7% Polish parents , 24% Belarusian and 17.9% French parents shouted at the child (p=0.0002). 23.3% of Polish parents, 12% Belarusian and 21.4% of French parents blamed the spouse for the child’s behaviour (p= 0.0002 ***). 30% of parents from Poland, 20% from Belarus and 7.1% from France pretended not to see the inappropriate behaviour (p= 0.0874). 10% of parents from Poland, 8% from Belarus and 3.6% from France (p=0.630) showed disrespect. The problem how to respond the question had 10% of parents from Poland, 8% from Belarus and 3.6% from France (p= 0.603).

Coping Inventory for Stress Situations (CISS) questionnaire by Endler and Parker was used to assess the ways of coping with stressful situations.

For most components of Coping Inventory for Stress Situations a statistically significant difference in the level of respondents from different countries (the exception was the component SEZ) was emphasized. The differentiation concerned mainly Poland in relation to Belarus and France, between which the difference was not so large.

In the group of Polish parents the task-oriented style (SSZ) was predominant, which is efficient in terms of coping with stress. Polish parents received an average of 45.1 ± 10.4 points in the study, Belarusian 58.4 ± 8.3 points, and French parents 59.1 ± 8.4 points (p <0.001). In France and Belarus definitely more parents than in Poland chose

the same style of coping with stress. The least preferred style of coping with stress in all three countries was a search for socializing (PKT); in Poland the surveyed parents received an average of 13.8 ± 3.4 points, in Belarus 18.0 ± 4.1 points, and in France 18.4 ± 3.4 points (p<0.001). The details are shown in Table 1 and Figure 1.

 


 

Table 1. Styles of coping with stress



 

Style

Country/points

p

Poland

Belarus

France

 

Me

s

 

Me

s

 

Me

s

Task-oriented

(SSZ)

45.1

41.0

10.4

58.4

59.5

8.3

59.1

59.0

8.4

0.0000***

Emotion-oriented

(SSE)

38.3

38.5

6.8

43.3

43.0

8.5

40.6

41.5

11.0

0,0888

Avoidant

(SSU)

39.4

39.0

5.3

44.1

45.0

8.2

47.0

47.5

7.3

0,0002***

Distraction seeking

(ACZ)

15.5

16.0

3.2

15.5

14.5

5.0

18.0

18.5

3.3

0.0180*

Social diversion             (PKT)

13.8

13.0

3.4

18.0

18.0

4.1

18.4

19.0

4.4

0.0000***

 


 

 

 

 

 

                Figure 1. Styles of coping with stress.

The hypothesis that the vast majority of parents coped well in difficult situations was proved. Using the CISS questionnaire it was indicated, that the majority of parents used effective methods of coping with stress. In the group of Polish parents, the predominant style of coping with stress (style SSZ) was the style focused on the task, which is efficient in terms of coping with stress. In France and Belarus definitely more parents than in Poland chose the same style of coping with stress .

The surveyed parents were also assessed by means of The General Self- Efficacy Scale (GSEs), which allows the assessment of general beliefs about the effectiveness of the individual to cope with difficult situations and obstacles.

We achieved highly statistically significant differences between parents of the three countries examined, and again, a group of Polish respondents stood out, for whom values on the GSES scale were on the average lower by over 2 percentage points than among respondents from the other two countries. The highest rate of self- efficacy characterizes parents from France (30.4 ± 5.0), the lowest (27.2 ± 3.8) parents from Poland. The detailed results are shown in Table 2 and Fig. 2

 

Table 2. Effectiveness of coping with difficult situations

 

Questionnaire

Country

Poland

Belarus

France

 

s

 

s

 

s

GSES

27.7

3.8

29.8

2.9

30.4

5.0

 P value – 0.0056, differences between groups

 

Figure 2. Effectiveness of coping with difficult situations

 

 

DISCUSSION

 

Stress experienced by parents of a disabled child can negatively affect family relationships, and its specificity lies in the specific nature of the requirements for the parents participating in the process of raising a child. These requirements result in a change in parents’ social and emotional functioning.

Parents of children with autism are faced with many difficult challenges, and numerous studies according to Pisula [13] show that, in connection with the care of a child with this disorder, parents are exposed to high stress. The level of stress is not only higher, compared to parents bringing up children who develop properly, but also compared to parents of children with other developmental disorders [13]. Among major burdens experienced by parents of children with autism we can specify fear for the child's future resulting from the character of developmental difficulties, which greatly limit the child’s possibility of adaptation, the lack of acceptance of a child’s behaviour by others, often including distant relatives and low social support .

 Shieve et al. [14] examined the connection between autism and parental stress . Parents of autistic children aged 4 to 17 years, reported their feelings regarding sacrifices relating to child care, difficulties connected with child care, frustration connected with the child's behaviour and their anger directed at the child. In the study, the population of parents of autistic children (459), compared with parents (4,545) of children with special health care needs, including children with emotional, developmental and behavior problems (other than autism, but requiring intervention), with parents (11,475) of children with health problems but without developmental disorders and with a group of parents (61,826) of children developing properly [14]. As a result, the authors suggested that parents of autistic children more often achieved higher scores in the assessment of their frustration (55% on the scale of frustration) than parents of children with other than autism developmental problems (44%), parents of children with health problems without developmental disorders (12%), and parents of children developing properly (11%). In the group of parents of autistic children, the proportion of parents with a high level of frustration was 66% in those whose child recently needed special care, and only 28% of those whose child did not need such care [14]

Parents of autistic children, apart from a sense of loss, grief and guilt, feel helpless in the face of indifference shown by a child who manifests almost no signs of emotional attachment [5]. The subject literature often defines them as stressed, helpless , constantly worried and frightened. Their sense of loneliness and isolation, and also anxiety about the future is very clear.

In the present study parents struggling with stress preferred tasks-oriented coping style (SSP). Families from Belarus(59.5%) respectively preferred this style, similarly in France 59%, while Polish families chose it less often (41%). In regard to a different style focused on emotions (SEZ), the differences were smaller, Belarusians chose it in 43% of cases, French 41.5%, and Polish parents were again ranked the lowest because they favored this style in 38.5% of cases.

Lyons et al. [15] analyzed the effect of the degree of autism severity on stress in parents of an autistic child, and the mediating role of coping styles. Symptoms of autism in children and parental coping strategies focused on the task, emotions and social relations were subject to evaluation as factors predicting four types of parental stress : parental and family problems, pessimism, child characteristics and physical incapacity. 77 families with autistic children were examined, and it was noted that [5]:

•       emotion- oriented strategy was found to be associated with an increased number of parental and family problems

•       task-oriented strategy proved to be connected with lower scores of physical inability

•       severity level of autism was the strongest and the most common factor predicting stress in parents

 According  to Schieve et al. [14], emotion-oriented style mediated in the relationship between pessimism and symptoms of autism. Impaired coping was an important mediator between parental and family stress and symptoms of autism. According to the researchers, the results suggest that an increase in awareness of what strategies are used by a family and in what conditions they are beneficial or not, can have an impact on therapy and on parents’ effort put in the education of their children.

  Studies by Osborne and Reed [16] indicate a strong relationship between parental stress and a child’s behaviour problems when other factors were under control, such as autism severity and intellectual functioning of the child. Parental stress related to a small child with autism (2-4 years ) was a stronger factor to predict child’s problems later in the future, but such a connection as to the older children was not found. The symptoms of autism severity are related to stress experienced by parents of children under the age of four years. Children’s behaviour problems are strongly correlated with parental stress in case of children over 4 years of age. The authors conclude that parental stress can affect child's behaviour problems.

  Life under long-term stress can lead to a burnout syndrome. With reference to parents of autistic children, this phenomenon was first described by Sullivan, who defined it as a loss of mental and (or) physical strength as a result of overstrain by long-term and intensive child care. According to Sullivan [17], psychological indicators of burnout syndrome are resignation, a sense of loneliness, dissipation of energy, the loss of interests , the loss of good interpersonal relations, excessive excitability, dissatisfaction with the situation, as well as negative feelings towards the child and the reduced assessment of the child’s development .

                Research by Marcus, Kunce and Schopler [18] designated a characteristic of the above- discussed problems of a group of families, contributing to the fact that child care is particularly stressful and they included the following :

•       late diagnosis, problems associated with its acquisition or wrong diagnosis, the way in which parents were informed about the child's disability

•       feelings of the lack of emotional bond with the child, and no signs of affection from the child

•       difficulties in communicating with the child

•       uncommon, discordant course of a child's development - periods of detention and regression, uneven pace of development within each function

•       dilemma "does not want " or " cannot" - difficulties with the correct assessment of real possibilities of the child

•       normal appearance of the child's which hinders the understanding of problems associated with the child’s development

•       excessive attachment of the child to stability, routine and resistance to any change

•       behaviour in public places

•       often comorbidity of mental retardation

•       different opinions of professionals on the best methods of therapy, therapeutic " novelties " and unproven methods

•       poor prognosis and little possibilities of cure ;

•       social isolation, lack of understanding from relatives, friends and acquaintances ;

•       lack of service system

•       anxiety about the future of the child.

   Physical, emotional, intellectual and motivational disorders (called burnout syndrome) develop as a result of stress connected with long-term contact and a disabled child care. They may influence the ability and motivation to work with the child, increase the feeling of emotional detachment and, unfortunately, cause that activities connected with child care will become automatic and stereotypical.

 

CONCLUSION

 

1.     The authors determined the existence of factors that could significantly affect the degree of burn-out syndrome in parents, such as the deterioration of the financial situation (mainly in Belarusian families, sadness, fatigue, insomnia (mainly in Polish families).

2.     Parents, in difficult situations of crisis, chose effective coping styles, and the predominant style was task-oriented style .

3.     It was proved that parents lack the ability to control negative emotions, which in particular concerned Polish families (for example dominant attempts to admonish and explain or shout at the child).

 

Acknowledgments

We would like to thank parents from the Polish Association “Wspólny Świat” of the Centre for Therapy and Diagnosis of Autistic Children in BiałaPodlaska and we are also grateful to Anna Chwałek, the head of the Centre and Marzena Szydłowska-Grajcar, the vice president of the Association for their help in conducting the study.

We would like to thank Трафимюк-ОксанаЕвгениевна, Центркоррекцио-нноразви-вающегообу-ченияиреабилитацииin Brestand also parentsfrom the Association of Parents of Autistic Children in the department of Deux Sevres-Centre Hospitalierin Niort, France.

 

Conflicts of interest

The authors declare that they have no conflicts interests.

 

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