|Ročník: 2013||Volume: 2013|
|Číslo: 1||Issue: 1|
|Vyšlo: 15. července 2013||Published: July 15th, 2013|
Disablised child in the family (A case study of the family resilience process).
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Disablised child in the family (A case study of the family resilience process)
Abstract: The article presents the factors that contribute to family resilience. After the basic theoretical definitions stemming from domestic as well as foreign literature, we present a case report of a family bringing up a child with severe hearing impairment. This report demonstrates the importance of individual protective factors, described in the theoretical part, which may have a major impact on family resilience.
Keywords: Hearing impairment, family, resilience, protective factors
Family is considered as the basic building unit of a society, significantly contributing to socialization among individuals. In the primary family or in the so-called orientation family in which children are nurtured, each individual should gain the basic skills and values, along with love, confidence and the sense of security. Matoušek 1 notes that the family enables a high degree of openness and sharing which allows individuals to set aside public roles. Kraus 2 distinguishes six basic functions of the family:
This family function is more important for the society as a whole. In our paper, it will not be addressed in more detail.
When engaged in the labour market, an individual contributes to the functioning of the society on the one hand but, on the other, this also affects the economic situation of the family. If this function gets disrupted, the family may experience material poverty and this state leads to further problems.
The purpose of this function is mutual solidarity and support of the family members in the field of health. Parents are responsible for the health of their children.
The family should prepare children for their entry into the society, teach them how to behave, how to respond, and also take responsibility for their actions. If this family function is impaired, the parents are unable to communicate the functional behaviour and conduct or they even pass inappropriate models. Into their lives, children consequently carry problems that may result in socially pathological phenomena.
This function manifests itself in the manner and extent of leisure time spent together.
A family should provide children with the basic emotional support, sense of security, and love. The family should be a place where children can take refuge when having problems and the place where they can come to share their joy.
Each family can experience stressful situations that may be vital for its continued operation. Based on such stressful situations, some of the family functions may become disrupted whereas this disruption can then have a major impact on the child development.
Undoubtedly, stressful situations in the family functioning include: death of a family member, serious injury of a family member, disability of a family member, decline in the family economic status due to job loss, addiction of a family member, adulterous relations as well as the birth of a child with disability.
A family always somehow responds to stressful situations. Based on practical experience, we can mention two basic reactions: coping, non-coping. Family reaction – coping / non-coping – is dependent on the presence or absence of a set of factors that are called protective.
Protective factors can be divided into two basic groups: individual factors, external factors. Under individual factors, we understand the personality of an individual, his/her lifestyle and relationship to values. External factors can be termed as social support factors, i.e. factors that come from the surroundings. An overview of some protective factors that may affect the reaction of individuals to stressful situations 3 :
In our opinion, the functional family is a community of individuals who are not mere “cluster” but form an interconnected system. Protective factors of such a system will then consist not only of the above mentioned but are enriched with the aspects of mutual cohesion and support.
Theoretical definition of resilience
Protective factors form the basis of the individual or family resilience. Resilience is usually defined 4 as the tenacity or ability of individuals or groups to cope with stressful situations. Seccombe 5 defines resilience as a multifaceted phenomenon that allows individuals to develop and prosper even in a difficult situation. Křivohlavý 6 lists the following protective factors related to functional families:
These factors can be seen as positive influences on a child´s development. At the same time, they can be regarded as a measure of resilience in stressful family situations.
According to Patterson 7 , Casel states that there exist certain factors protecting individuals from disease. Patterson 8 raises the question: “How is it possible that some individuals remain healthy when facing danger while others do not?” He answers this question as follows: “The phenomenon causing such ability is called resilience.” Petterson 9 further notes that protective factor exist also in the family. Among them, he includes:
Simon, Murphy and Smith 10 define family resilience as a family’s ability to respond positively to stressful situations. Except the positive responses to stressful situations in connection with resilience, they emphasize the fact that the family may become stronger, more united and confident after experiencing a difficult situation.
Walsh 11 defines resilience as the ability of Man to manage a difficult life situation and leaving it strengthened. It is an active process of coping with the crisis. Walsh 12 then specifies single elements that influence the behaviour of families in difficult life situations and which may eventually lead to the fact that they can cope with such situations:
Spiritual family setting
According to Walsh 13, the spiritual anchorage of the family makes it able to cope with crisis situations more easily. Faith gives a person hope and option to view the crisis positively. Into the spiritual family setting and in addition to faith, Walsh also includes family atmosphere which affects the way of perceiving the crisis. According to Walsh, the aim of the reconciliation process and adoption of the crisis situation is not to look for a person guilty of the problematic situation but to find a way of embodying this situation into the family life history.
The relationship of faith and resilience is defined by Pargament and Cummings 14 . In their paper, they mention that belief, on the one hand, may give individuals the strength to cope with difficult life situations and, on the other, it also influences the way of looking at these situations as well as the way how these difficult life situations are experienced.
Organizational structure of the family
In the event that the family organizational structure is solid, family members can turn to each other and this functional structure, when exposed to a crisis situation, may be paradoxically enhanced. Walsh 15 notes that if such family environment does not exist, the crisis situation may even contribute to the family’s destruction.
Communication in the family
Communication within the family can help cope with stressful situations. Walsh 16 identifies three basic functions of communication in the process of coping with crisis:
In literature 17 , we encounter phases characterized by Kübler-Ross. These are phases which the individual passes through after informed to have severe or deadly disease:
More or less, these phases are passed through by every individual. However, the manner of experiencing them is different as well as whether the individual reaches the last phase, the phase of reconciliation. We can say that the difference in passing through the various stages is measurably given by personality – resilience.
Vágnerová 18 indicates that the reactions of parents to a child’s disability are similar to those mentioned above:
Disabled child in the family
One of the above-mentioned risk factors or stressful situations in the family life is the birth of a child with disability. In connection with the birth of a child with disability, we can state some aspects that may affect the family eventually coping or non-coping with this fact:
Presence or absence of disability in parents
In the event that a child with disability is born to parents who are also disabled, such fact alone may have no effect on the family functioning. Our own experience shows that this measurably depends on the type of disability. Hearing-impaired parents assume that their child will also be born with hearing impairment and take this fact for granted. Regarding the parents with bodily disabilities, the situation is different. In most cases, they wish they had a child without disability.
Type of disability
The second factor that affects family functioning is the type of disability with which the child is born. Generally, the society considers the disability not so much visible 19 as not too serious and its majority accepts individuals with such type of disability more easily.
Congenital or acquired disability
The time of disability formation undoubtedly influences the way as well as the degree of disability acceptance. However, it is questionable which kind of disability – congenital or acquired – is easier to accept. In the case of congenital disability, the family is faced with this fact and has no possibility of comparison. The goal is the fastest possible and most complete acceptance and setting of appropriate educational methods. It may happen in this situation that the family does not reconcile with the fact that the child would be disabled and rejects such an individual at the very beginning. In the case of acquired disability, the family can compare, realizes what is being lost and changed. A strong resilient factor that may help in adopting this fact is the strong bond with the child that has already been established.
Family knew or did not know about disability before the child’s birth
Another factor that may affect subsequent family functioning is whether the family was or was not aware of any pertinent disability before the child’s birth. From our practice, we know families that were informed about the child’s disability before birth and that used the time during pregnancy for reconciliation and acceptance of this fact. 20 However, there are families that rather prefer the path of terminating the pregnancy. Unexpected birth of a child with disability is a burden showing family resilience to some extent.
On this issue, Krejčířová 21 lists the following factors that affect the acceptance or rejection of a child with disability by the child’s parents:
Walsch 22 mentions that one of the important factors influencing family resilience is the family approach to finding the causes of disability. Špaténková 23 shares the same opinion and identifies six key categories for explaining the causes of disability, based on the research of Garwicková et al:
Špaténková 24 also states that the key condition for further family functioning is to create a single meaning of disability and accept such meaning by all family members. The common view of disability reinforces the resistance of family with regard to its further functioning.
For an analysis according to the above-mentioned theoretical definitions, we have chosen a case of family with a child with severe hearing impairment 25.
Personal and medical history
Behaviour of the child in kindergarten
The girl joined the kindergarten at the age of 2.5 years. Commencement of kindergarten passed without any complications. She did not need to acclimatise to the kindergarten environment or regime. Without crying, she left her mother and found her activities. At the beginning, the girl communicated by coming to some adult and taking the person to the subject of her interest. However, if she did not find someone or if the adult person did not understand her wishes quickly, she began to cry. She was playing alone most of the time, most commonly with a manipulative toy, and did not require any children or adults around her. 26
One important fact appears in the personal history: the girl does not establish eye contact. Establishing visual contact became a centre of educational work with this girl. In order to establish eye contact, the girl’s favourite toys were used. After about a month of intensive work, eye contact was successfully established and consolidated within the coming months. Based on the functional visual contact, it was possible to start building functional communication using sign language. The basic vocabulary in sign language was created during a half-year period. Gradually, the girl also began to require the presence of an adult in her vicinity. She began to understand that adult persons may provide her with help or protection. Rage and outbursts of crying began to subside from her behaviour. The pervasive disorder was not confirmed.
The girl’s functional communication in sign language and later also spoken language began to develop rapidly after the cochlear implantation. Social behaviour became normal and appropriate to her age. She played with children and adults accepting them as partners for communication as well as for common work. Eye contact became very important for her. She started to achieve very good learning results and was able to make logical judgements.
Behaviour of parents and the child’s behaviour at home
Parents’ relationship with their child
During normal communication with the girl’s mother, we found that the mother did not establish eye contact. We were, therefore, investigating the mode of communication between the mother and child in the course of a guided interview and deliberate observation. Based on the observation and interview results, the mother was gradually instructed how to establish visual contact with the child and subsequently lead functional communication.
The mother nicely dressed the girl and adorned her with jewellery. Materially, the girl was provided with above standard care.
It was discovered during the next interviews that the father did not fulfil his function; he felt ashamed of the girl and was not able to communicate with her.
Relationship between parents
At the beginning, the relationship between girl’s parents appeared outwardly in good order. After genetic tests showing a high degree of probability that any further child would be disabled, the mother categorically stated that she did not want to have another child with her actual partner. For most of the year, the girl’s father was working outside the country. After returning from abroad, he found a new woman and left the family not interested in seeing his girl again.
“New family” and the girl
The new partner of the mother accepted the girl. He took her on trips and involved her into normal family life. After the wedding, the girl’s mother gave birth to her healthy sister whom she accepted. She assumed the role of older sister who cares for the younger one. The parents do not differentiate between the two girls.
Case report analysis
Functions of the family
In the introduction of this paper, we mentioned the basic family characteristics and functions as defined by Kraus. When looking at each of these functions and based on the casuistry, we can state that the biological-reproductive as well as socio-economic function of the family described were fulfilled. However, other family functions were not met:
Protective factors of the parents
In relation to the case history, the protective factors mentioned in the introduction, as stated by Baštecká 27 , can be divided into three groups:
Regarding the protective factors associated with the family as stated by Křivohlavý and based on the casuistry presented, it is possible to conclude that the family satisfied only the last one of these factors: good socio-economic level.
In accordance with the Walsh’s concept of family resilience, it is possible to say that the family did not meet any of the factors supporting family resilience.
Based on the analysis, we can thus state that this family did not have enough protective factors to cope with stressful situations, i.e. the birth of child with disability. In this situation, destruction of the family was only a matter of time.
Pursuant to the casuistry, we examined the presence of protective factors in the family that may affect the degree of family resilience. The birth of a disabled child alone is a heavy burden on the family. If the family lacks protective factors, family resilience may become disrupted.
Disturbed family resilience may be manifested by disintegration of the family. The family may also remain intact but the child with disability is not its functional component. In this case, communication with the disabled child becomes disrupted. A child with disability is, therefore, not able to provide any adequate feedback to the family which prevents strengthening the necessary mutual relations that affect resilience.
In addition to the basic special-educational and medical care, the aim of care for families with disabled children should be to strengthen the family protective factors.
Strengthening the protective factors in the mother 28
The new family meets all the basic family functions as specified by Kraus. In terms of the Walsh’s concept of family resilience, the new family meets all three conditions:
In his article, Walsh 30 states that the family attitude to crises is essential for the degree of family resilience: a functional way out of the crisis is not finding the culprit but accepting the crisis as part of the family history. 31
In the beginning of this paper, we divided the protective factors supporting resilience into two basic groups: individual internal factors and external factors. In connection with the family, we then added another factor: mutual interactions of the family members. Primarily, experts 32 can help the family strengthen the external protective factors and mutual relations between family members. Within the context of strengthening the above-mentioned factors, Baštecká 33 refers to the concept of “system of social support”, usually conceived as a supportive interpersonal and institutional network. It is the presence of others or the support provided by them before the stressful event, during or after such an event. It is, therefore, an activity that may alleviate the stressful situation of a person in distress.
In this paper, we wanted to highlight the importance of protective factors that influence family resilience in relation to a child with disability. For this purpose, we selected a family with which we had the opportunity to work intensively for four years. The specific example shows a situation resulting from a lack of protective factors, and a situation that emerged after strengthening certain protective factors: the degree of resilience in the initial family was very low due to the lack of protective factors which resulted in disruption of the relations between its members. Within four years, the experts succeeded in strengthening the protective factors in the girl’s mother: the meaning of disability, support in ensuring hearing aid for the child, and the creation of functional communication. In addition to the support provided by experts, the mother herself started to work intensively in the course of time to strengthen her own protective factors: the formation of her new functional family. At the present, we can say that the family shows sufficient degree of resilience for the adoption of a child with disability.
Příspěvek vznikl v rámci projektu SIVV CMTF_2013_007
1. Family as an institution and relationship network., p. 11
2. Základy sociální pedagogiky., p. 81-83.
3. BAŠTECKÁ, B., GOLDMANN, P. Základy klinické psychologie, p. 282 - 283.
4. E.g. KŘIVOHLAVÝ, BAŠTECKÁ
5. Beating the Odds versus Changing the Odds: Poverty, Resilience, and Family Policy.
6. Pozitivní psychologie, p. 169.
7. Integrating Family Resilience and Family Stress Theory, p. 350.
9. ibid., p. 354.
10. Understanding and Fostering Family Resilience.
11. Strengthening Family Resilience.
12. Family resilience: A framework for clinical practice.
14. PARGAMENT, K. I. , CUMMINGS, J. Anchored by Faith. Religion as a Resilience Facotr. In.: Handbook of a Adult Resilience.
17. E.g. ŘÍČAN, P., KREJČÍŘOVÁ, D. Dětská klinická psychologie, p. 55-56.
18. Psychologie handicapu., p. 23 – 26.
19. A typical example of this phenomenon is the attitude of the society toward hearing-impaired persons. According to the author’s experience, the prevailing opinion of the intact society is that this handicap is not very serious. This kind of thinking is mostly changed as late as meeting a person with hearing impairment.
20. These issues are also addressed in the documentary film “Save Edwards” by D. Smržová, film director.
21. ŘÍČAN, P., KREJČÍŘOVÁ, D. Dětská klinická psychologie, p. 57-59.
22. Family resilience: A framework for clinical practice.
23. Krizová intervence pro praxi.
25. In practice, we had the opportunity to work with that girl and her family for a period of four years.
26. With regard to her “non-problematic” commencement of kindergarten and her way of communication and plays, the suspicion of possible pervasive disorder was strengthened.
27. Základy klinické psychologie.
28. Neither of the first two above-mentioned factors has strengthened protective factors in the father. However, finding the reasons is not a subject matter of this paper.
29. The girl with hearing impairment taught her younger hearing sister the sign language so that they can communicate with each other before their parents.
30. Family resilience: A framework for clinical practice.
31. The new partner approached the girl’s disability with light humour: “I have gained a remote-controlled daughter and this is fine”.
32. E.g. social pedagogues, special pedagogues and psychologists
33. Základy klinické psychologie, p. 284.
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