Family Pedagogy
Pedagogika Rodziny
Kwartalnik 5(1)/2015 ISSN 2082-8411
Sekretarz redakcji:
dr Mariola Świderska Rada programowa:
prof. zw. dr hab. Amanus Akimjak (Słowacja) prof. zw. dr hab. Józefa Brągiel
prof. dr hab. Henryk Cudak (przewodniczący) prof. zw. dr hab. Arthur Ellis (USA)
prof. zw. dr hab. Reinhard Golz (Niemcy) prof.dr hab. Ing. Emilia Janigova
prof. zw. dr hab. Anna Kwak prof. zw. dr hab. Tadeusz Pilch
prof. zw. dr hab. Andrzej Radziewicz-Winnicki prof. zw. dr hab. Łukasz Sułkowski
dr Mariola Świderska (sekretarz)
prof. zw. dr hab. Andrzej Michał de Tchorzewski prof. zw. dr hab. Mikołaj Winiarski
prof. dr hab. Anna Żilova Redaktor naukowy numeru:
prof. dr hab. Henryk Cudak
Redakcja „Pedagogiki Rodziny. Family Pedagogy”:
Społeczna Akademia Nauk ul. Sienkiewicza 9, 90–113 Łódź 42 664 66 21, e-mail: mariouka@wp.pl
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Wersja drukowana jest wersją pierwotną.
Wszystkie artykuły naukowe w czasopiśmie zostały zrecenzowane zgodnie z wytycz- nymi Ministerstwa Nauki i Szkolnictwa Wyższego.
Dissertations Grzegorz Ignatowski
Children’s Responsibility for Their Elderly Parents . . . .7 Barbara Sapała
Social Issues Affecting Families of Children with Congenital Heart Defects – Introduction and Research Postulates . . . . 15 Dorota Strzelczyk
Transactional Analysis as a Method to Test the Quality of Life
of a Family . . . . 27 Ireneusz Skawina, Elżbieta Markiewicz, Sylwia Szczepaniak
Pedagogical Intervention: The Place and the Influence of
Contemporary Animated Movies on Pedagogical Process . . . . 39 Elżbieta Markiewicz, Ireneusz Skawina
Interactivity of Mass Media to the Activity of the Child at School and Outside It . . . .51 Małgorzata Prokosz
Significance of Siblings for the Child’s Development . . . . 65 Krzysztof Zajdel
Father’s Role in Children’s Upbringing . . . .77
Research findings Sławomir Cudak
Emotional and Social Functioning of Families With a Person
Addicted to Alcohol . . . .91 Dorota Ruszkiewicz
Children’s Upbringing in the Perception of Engaged Couples . . . . 103
Rewards and Punishments Applied in the Family Environment
of Early Education Students . . . . 121 Barbara Lulek
Comparing Selected Levels of Communication Between Fiancée, Fiancé and Spouses . . . . 137 Maja Piotrowska
The Importance of Marriage and Family in the Narratives
of Adult Children of Divorced Parents . . . . 155
Dissertations
Grzegorz Ignatowski
University of Social Sciences
Children’s Responsibility for Their Elderly Parents
Abstract: Due to physical disabilities and changes in the mental sphere, elderly people cannot always cope with a rapidly growing technology and progressive commercialization. The caring for their elderly parents belongs to the fundamental duties of adult children. One has to prepare for this task throughout the entire life.
Including such ideas as care, solicitude and gratitude in the educational process and developing them is helpful in this regard. The first of these ideas has been deepened by Professor Tadeusz Kotarbiński in the analyses of the concept of ‘trustworthy protector’. Ethics of solicitude and gratitude is gaining more and more recognition among many contemporary thinkers. In the middle adulthood, when children take on the responsibility of caring for their elderly parents, these ideas will have an opportunity of a complete externalization and implementation.
Key words: elderly parents, care, solicitude, gratitude.
The issue of why children tend to leave home later is the subject of extensive discussion nowadays. It seems that the debate too often misses a completely different problem, i.e. the need to raise children in such a way that they do not forget that in the future, after they move out, their parents will need help. Especially then, due to old age, physical disabilities, rapidly changing social situation and modern technology, they will need special assistance. Zygmunt Markocki [2012, p. 8] reminds that growing old is taking place on biological, psychological and social levels. Attention should be paid to these levels when parents reach the elderly age. What are the reasons that children do not remember about caring for their elderly parents? Are difficult economic and social conditions the only reason? Certainly one of the reasons of failing to care for the parents is also the nr 5(1)/2015, ss. 7–14 DOI: 10.1515/fampe-2015-0001
spirit of consumerism and commercialization of the society. The first determines that more and more people are trying hard to possess more or to reach new levels in their professional careers. It is obvious that in the world of consumption the measure of a man becomes the situation in which what you have, not the one you should be taking care of, decides upon your prestige. The commercialization process has led to a change of perspective on moral values. Lesław Hostyński [2011, p. 70] notes that values such as love, attachment and respect are treated in a commercial and secondary way. However, this author also adds, ‘there are strong tendencies of treating, especially love, as unrealized value that can have a real impact on our individual lives’. This work will focus on the education of children in the perspective of their caring for their parents who will reach the elderly age in the future. We will not deal with issues such as the definition of old age or defining the point in time when it starts.
1. Situation of Parents in the Period of Middle Adulthood
One of the key issues in this paper is the question of when to tell children about the obligations they incur towards elderly parents. Let us exclude the extreme position. Surely it is not a time when parents are at such old age that they cannot cope with their physical and mental impairments. Specifically, they are no longer physically able to go to see their doctor or to do the shopping. By the concept of mental impairment I do not mean only the things related to modern technology.
The latter forces nearly everyone to acquire computer skills to pay rent for an apartment or compulsory insurance. Not everyone is good at it.
According to psychologists, the need to give care to elderly parents by their adult children occurs during middle adulthood. During middle adulthood people face two serious problems. The first one is related to slow moving away by the children from their family home. Although in recent years the time has considerably extended, the children finally begin to leave the family homes.
The emptiness is not going to last long. So far all the effort was involved in the care of their children, soon they will need the strength for helping with their grandchildren. This is a very serious role which must be learned; and above all, they will need to find time to handle this task. Emphasizing the lack of time is extremely important in this context. In the transition period, both the children who have just left home as well as their parents do not have much free time. The economic situation in our country makes everyone work much longer.
Another challenge people in middle adulthood have to face is taking care of their ageing parents. A. Brzezińska, K. Appelt and B. Ziółkowska [2010, p. 285]
state that at the time we have to cope with:
1. Recognition and reconciliation with the deteriorating health of parents and the fact that in the course of time they will become more physically weak. The loss
of psychic powers was mentioned before. It seems that it would be better to talk about a certain helplessness. Modern technologies force to have efficient minds, to possess the knowledge of technical jargon and the ability to move around in the virtual world. Without these abilities one can very often have a problem with paying for electricity or scheduling a visit at the doctor’s. Parents at the elderly age can also find it difficult to cope with the insistent advertising, find themselves in a wide network of shops and services.
2. Guaranteeing material help to parents, taking care of them, and sometimes nurturing throughout the day. It is true that older parents often do not have sufficient finances to ensure their existence. At the same time, they help the- ir children who are already adult. This situation cannot be the norm. It should be the opposite.
3. Coping with the loss of their parents. Trauma that can occur then usually leads to mental breakdown, loss of the sense of future life or filling time in a sen- sible way, time that was so far saved up for taking care of the elderly parents.
The above statements treat the issue of the situation of the parents in the old age in a general way. They also face serious challenges. They also, as far as their health permits, need to utilize their free time. Universities of the third age have become very popular recently. They are being established and developing dynamically in large and small towns. From my own personal experience I can say that elderly people cope quite well in this type of universities. Specifically, participants are eager students during computer or foreign language classes.
Educational process continues throughout the life of man. In changing times we are facing various tasks. Some of them pass with the childhood period. For sure we will have to learn throughout the whole life. It does not mean that we will be obliged to regularly go to school and do homework assignments. With the passing years more serious responsibilities will appear and the scope of personal responsibility will increase. What should be done to make the care for the aging parents become a normative part of human life? Let us put forward a thesis that the issue should be tackled already in the school. Children should be prepared to be responsible for the care of elderly parents from the time when they begin to understand how much they owe. It is much more simple in the case of multi- generational families. They consist of two or more families [Adamski 2006, p.
308]. A few generations live under one roof and the obligation to take care of elderly parents naturally rests on the younger generation. It should be kept in mind, however, that such families are less numerous nowadays, even in rural areas, where the structure of society is dynamically changing. Our speech will focus on reviewing some basic concepts that may be helpful in the educational process to sensitize students to the obligation to cover parents in old age with care.
2. Way of Teaching about Parents in Need of Help at the Elderly Age Poor attention of children for the elderly also stems from the inadequacy of our language, which we use in the educational process. Such concepts as responsibility, obligation or duty should be considered as helpful, but the most important ones. Speaking about the responsibility has two drawbacks. On the one hand it is a good starting point to describe the moral problems arising from the development of our civilization [Ciążela 2006, p. 29]. Responsibility, however, requires freedom. In view of the fact that the parents have become so old that they require care, we practically do not have any choice. We are obliged to take care of them. The concept of responsibility is associated more with the area of law, rather than education. Speaking of the duties is not too happy either. There has been a lively discussion lately on the issue of the scope of this concept and it is not clear. Speaking of the duties also requires some space of freedom, it includes the predictability and regularity of situations [Soniewicka 2013, p. 128]. Duties, as noted by Janusz A. Majcherek [2011, pp. 184–185], should not be fulfilled ‘against the wishes of the one to whom they are addressed’. In other words, adds the author, ‘you cannot make a good deed to someone who does not desire it, just as you cannot make someone happy by force, that is, doing something he considers his unhappiness’. Let us sum up then that given the fact that the need to take care of the elderly arises there is a situation where, contrary to the wishes of all people involved, it will have to be done.
The terms that should be considered appropriate are as follows ‘care’,
‘solicitude’ and ‘gratitude’. It is a common and well sounding statement that elderly parents need care. The reflection on this subject cannot miss the idea of a trustworthy protector developed by Tadeusz Kotarbiński [1967, p. 68] who wrote that the ‘protector can be treated as trustworthy only when one can rightly trust to his care, that he will not fail, that he will do everything in his might, that he will stand his ground in danger and all will be a support in difficult circumstances’. A trustworthy person has many features that correspond well with the care of elderly parents. He is conscientious, reliable, honest, direct, straightforward and unpretentious. According to Kotarbiński a trustworthy man is sympathetic to the people he cares for. The renowned philosopher and ethicist adds such features as goodness of heart, sensitivity to the needs of others and willingness to help. In addition to this, to deserve the name of a trustworthy man one has to be persistent, have the ability to master over oneself and give maximum effort. Courage, the ability to bear witness to the truth even at the cost of certain difficulties and annoyances are also necessary [Kotarbiński 1967, pp.
69–70]. It seems that one cannot give all the qualities required of children to take care of elderly parents more accurately. One has to be able to tell them the truth, sometimes bitter, spend their precious time and be a sensitive person.
The idea of a trustworthy protector is not devalued even in the situation that it is sometimes poorly received in present times. In the political conformism a trustworthy person is the one who unwittingly subjected to a leader or mindlessly votes against their conscience. In the professional life being trustworthy is sometimes misunderstood as a mindless exercise of illogical commands from the employer. A trustworthy person can make a career, achieve the desired promotion, gain acceptance and recognition in the group more quickly. This is probably the only argument against the idea of a trustworthy protector. Recognized Polish ethics, Maria Ossowska [2000, pp. 180–181], and many others, reserves the concept of ‘protection’ not only for the education of children, but also care for adults. She writes that care should always be addressed to those who need it, and therefore also for adults. With our reality in mind, let us think first about a babysitter. In the case of elderly people we will signal the existence of social welfare houses. The idea of a trustworthy protector is also supported by the attractiveness of the very term itself. It can inspire to search its deepest meaning.
Ethics of care has enjoyed a high reputation among humanists for a long time.
It can be successfully adopted by pedagogues. Let us focus on those who need care and those who provide it. First of all, we care for other people. Typically, these are people who cannot move in the surrounding reality, are in a difficult situation, are neglected, require constant care. From the youngest years the care of children is provided by parents and immediate family members. Putting care in the centre of education it is not difficult to imagine that when the children, then young people, grow up, they will understand the need to pay special attention to elderly parents. The emphasis therefore moves to individuals who provide care.
Ethicists developing the ethics of care consider the issue in a broader perspective.
People are concerned not only about the immediate family, but also about animals.
Among the supporters of this particular trend in ethics it is believed that the ethics of care allows to express the feeling of love, trust and relationships with other people more clearly. The emotional side of the issue opens for researchers.
It creates a space for mutual understanding of people involved in caring for those in need of care [Zaorski-Sikora 2007, pp. 114–115]. This is particularly necessary when addressing the issue of the relationship between children and the elderly.
The latter often have strained the sense of trust in others. We remember that the public opinion research shows that the Poles still place the greatest trust in the closest members of their own family. Usually people we care spend some time alone. We need to know when and how much we can trust the elderly people, allow them space to decide for themselves and to make their own decisions.
Critics of this trend in ethics note that it embeds too much focus on the person for whom the care is provided. This may lead them to excessive enslavement.
Is ethics built on the care for the closest ones without any other defects? To the most important ones I would include the fact that usually the problem is
comparable to the mother-child relationship while care for the elderly requires different contacts. Visualizing the emotional side of the issue results in making such problems as patience, firmness and truthfulness, and self-discipline more distant. These features are necessary in caring for elderly parents. However, in the care of the elderly emotional approach, trust and permission are always needed to let them make the arbitrary decisions.
Appealing to gratitude seems helpful in making children more sensitive to the need to address their elderly parents in the future. It is true that the concept of gratitude takes sometimes a negative meaning. We live in a country where gratitude for all kinds of services settled in our society for good. Especially for older people it is hard to imagine that one should not show gratitude to their doctor, office clerk or teacher in a material way. This is not far from corruption.
This does not mean that parents have no right to demand gratitude from their children. Throughout their life, they put a lot of effort to educate them, send to good schools, take care of their health. On the other hand, it would be bad if parents founded their care for children on the hope that in the future they will prove their gratitude. Education will be effective and not burdened with unfulfilled hopes, if it is based on selflessness. One should not have children, just for this one reason that in the future will provide care for their parents. It would be a gratuitous expression of egoism.
Any kind of ingratitude would be understood as treason and acts of negligence resulting from failure to meet unwritten obligations. With such an attitude one would not speak of gratitude, but of responsibilities. Positively understood gratitude is a voluntary gift. It does not flow from the obligation, but it is built on honest intentions. In relation to parents it is primarily a free gift. It follows from memory that they put indescribable effort in the future of their children. Their life was always full of sacrifice, resignation – if one can say so – from the most beautiful years of their lives. Tadeusz Gogacz [2004, p. 231] writes that gratitude
‘causes more good to the one who is grateful than benefits to whomsoever it is given’. Misunderstood gratitude – as mentioned above – is associated with qualities such as thanking, obligation, or the need for revenge. In a positive sense, it follows the favourable, positive attitude and spirit of charity.
3. Remarks and Summary
In summary, one should pay attention to two things. Firstly, a person develops throughout their life, gains more experience at each stage. In the middle adulthood, responsibilities tend to change, one has to re-find the meaning of life. One of the priorities is the need to deal with elderly parents. In order to meet this challenge one must be reconciled with the fact that they will have to give up their free time, friends, cultural entertainment. From an early age children need to be reminded
that their parents will get old. Tasks such as care and concern will become a priority. One has to remember about gratitude. The effectiveness of the educational process depends on the clarity of the language with which we educate children.
Professor Teresa Hejnicka-Bezwińska [2008, p. 258] reminds that language is the most effective tool. It provides the most essential knowledge necessary for life. The author speaks about the scientific and colloquial language. The other publications write about natural, artificial and mixed language [Malionowki 2010, pp. 18–20]. Let us stay with this terminology. The principles of natural language have been formed spontaneously. It is constantly changing, following social and cultural transformations. Expressiveness is one of the biggest deficiencies of natural language. While talking to children and adults one should always use a fully understood language. It does not mean that one has to use customary expressions that differ from the accepted forms. This text reminds about issues such as trustworthy protection, care and gratitude. It has been decided that these are the best concepts that sensitize the issue of responsibility for elderly parents. It is worth noting that the language is not the only form of communication. People use gestures, facial expressions, voice height or body posture to express their ideas. By means of non-verbal communication, we can also learn about gratitude, protection and care. Ida Kurcz [2008, p. 271] draws attention to the silence, which is also a form of communication. The author understands it as a lack of verbal and non-verbal communication. Silence in the relationship between children and parents has a negative connotation. There should be no such situations.
Finally, let us say yet another thing. Would it not be helpful, in the context of the present considerations, to speak of debt which children take from their parents? Naturally, the concept of debts is essentially related with economy. The importance of the problem is very well understood by everyone who has to pay bank loans. The debt can also be viewed as belonging to the moral sphere. We are indebted to teachers, authorities, generally to those whom we respect. Why, then, should we not talk about the debt to the parents? The term is clear and understandable. It makes it clear that it is not possible to fully pay the debt from the parents. We pay back bank loans because we are afraid of going to jail or even bankruptcy. Liabilities to the closest people cannot be measured by means of material resources. Nobody will sue us to court if we do not repay the debt to our elderly parents. The consequences are completely different. They have a negative educational impact on the younger generation. The size of this impact is not known.
Bibliography
Adamski F. (2006), Rodzina [w:] E. Różycka (red nacz.), Encyklopedia pedagogiczna XXI wieku, t. 5, Wydawnictwo Akademickie Żak, Warszawa.
Brzezińska A.I., Appelt K., Brzezińska A.I. (2010), Psychologia rozwoju człowieka [w:]
J. Strelau, D. Doliński (red.), Psychologia akademicka. Podręcznik, t. 2, Gdańskie Wydawnictwo Psychologiczne, Gdańsk.
Ciążela H. (2006), Problemy i dylematy etyki odpowiedzialności globalnej, Wydawnictwo Akademii Pedagogiki Specjalnej, Warszawa.
Gogacz T. (2004), Umiejętność ż ycia, Znak, Kraków.
Hejnicka-Bezwińska T. (2008), Pedagogika ogólna, Wydawnictwo Akademickie i Profesjonalne, Warszawa.
Hostyński L. (2011), Sens ż ycia w świecie konsumpcji [w:] D. Prabucka (red.), Etyka i sens ż ycia, Wydawnictwo Naukowe Uniwersytetu Pedagogicznego, Kraków.
Kotarbiński T. (1967), Medytacje o ż yciu godziwym, Wiedza Powszechna, Warszawa.
Kurcz I. (2008), Jęz yk i komunikacja [w:] J. Strelau (red. nauk.), Psychologia. Podręcznik akademicki, t. 2, Gdańskie Wydawnictwo Psychologiczne, Gdańsk.
Majcherek J.A. (2011), Etyka powinności, Difin, Warszawa.
Malinowski G. (2010), Logika ogólna, Wydawnictwo Naukowe PWN, Warszawa.
Markocki Z. (2012), Starość i niepełnosprawność wyzwaniem edukacyjnym społeczeństwa wielokulturowego, „Pedagogika Rodziny. Family Pedagogy”, nr 3, ss. 7–13.
Ossowska M. (2000), Normy moralne, Wydawnictwo Naukowe PWN, Warszawa.
Soniewicka M. (2013), W poszukiwaniu źródeł powinności. Etyka obowiązku i etyka odpowiedzialności wobec problemu autorytetu [w:] B. Bróżka, M. Hohula, Ł. Kurek, J. Stelmach (red.), W świecie powinności, Copernicus Center Press, Kraków.
Zaorski-Sikora Ł. (2007), Etyka, Wydawnictwo WSHE, Łódź.
Barbara Sapała
Uniwersytet Mikołaja Kopernika w Toruniu
Social Issues Affecting Families of Children with Congenital Heart Defects – Introduction and Research Postulates
Abstract: The functioning of children with congenital heart defects and their families in society is discussed rarely and too generally in the literature. Medical personnel, educators and caretakers have very little knowledge about this chronic disease and its prevalence. This lack of knowledge generates two extreme and undesirable attitudes: unjustified fear and negligence of the disease and its consequences. Both attitudes prevent a thorough understanding of the problem, in particular the aspects that influence the social life of children and their parents. As a result, the families of affected children are often left to their own devices, and they receive support only from other parents who are faced with the same problem or from non-governmental organizations. Educators, psychologists and sociologists should be encouraged to develop a cohesive support system based on reliable research results, and to implement measures that would enable young patients and their families to function better in society.
Key words: congenital heart defects, disability, children, family.
1. Families of children with congenital heart defects. Current state of research
Children with congenital heart defects and their families are discussed rarely and too generally in Polish non-medical literature. The issue is addressed by very few publications, most of which tackle only specific problems of the affected children and their families. The only comprehensive publication is Dziecko z wadą serca. Poradnik dla rodziców (A Child with a Congenital Heart Defect. A Guide for Parents) [Malec, Januszewska, Radziwiłłowa, Pawłowska 2007], authored by outstanding nr 5(1)/2015, ss. 15–25 DOI: 10.1515/fampe-2015-0002
physicians as well as parents of children with congenital heart defects. The book is a compendium of medical knowledge presented in a way that is comprehensible to the layman, and it contains valuable tips for bringing up children with a heart condition. An updated and supplemented edition of the book will be soon released. The discussed disease is also comprehensively addressed by a brochure by Elżbieta Makowiecka, Jacek Moll and Jadwiga Moll [2002], entitled “Mam dziecko z wadą serca” (When Your Child Has a Congenital Heart Defect). Information can also be found in several brochures and leaflets published in recent years by the Cor Infantis Foundation for Children with Heart Defects.
All of the above publications fall in the popular science category, and they are addressed mainly to the parents and caretakers of children with heart defects.
The disease fails to attract nearly any interest from educators, psychologists or sociologists, and it is not the object of scientific research. The only exception includes several monographic articles exploring the psychological problems and the quality of life of children with heart defects and heart disease, penned by Magdalena Dyga-Kowalska and published in medical journals. A joint publication edited by the above author, entitled “Psychologiczne problemy dzieci i młodzieży z chorobami serca” (Psychological Problems of Children and Adolescents with Heart Disease) [Dyga-Kowalska 2005], is a particularly noteworthy addition to the literature.
A short elaboration by Małgorzata Słomczyńska, entitled “Dziecko z wrodzoną wadą serca w szkole, problematyka kształcenia i wychowania” (A Child with a Congenital Heart Defect in School: Problems Related to Education and Upbringing) [2009], makes the first attempt at describing the social challenges faced by children with heart defects.
A heart defect influences not only the life and activity levels of the child, but it affects the entire family from the moment the condition is diagnosed, which is increasingly likely to take place before birth. This topic was addressed by two academic theses. The first is a Master’s thesis defended by Karolina Bawej at the Institute of Child Psychopathology of the Adam Mickiewicz University in Poznań, entitled “Problemy rodzin wychowujących dzieci z wrodzonymi wadami serca” (Problems encountered by families raising children with congenital heart defects) [2009], and second is a Bachelor’s thesis in education submitted by Olga Jakuć at the University of Warmia and Mazury in Olsztyn, entitled “Rodzina dziecka z wadą serca – funkcjonowanie i system wsparcia” (Families of children with heart disease – functioning and support system) [2010]. Both theses are available online (only fragments of the latter thesis) on the website of non-governmental organizations that support children with heart defects.
It should be noted that most people who write about research into children with congenital heart defects, including the authors of the above theses and the author of this article, have been confronted with the problem in their personal lives.
There are several reasons why children with heart defects and their families do not attract the researchers’ interest. Above all, this is a relatively new problem.
Rapid development of cardiac surgery in the second half of the 20th century enabled corrective treatment of even complex heart defects, but the most severe dysfunctions, such as hypoplastic left heart syndrome (HLHS), have been treated surgically only since the 1990s. Advanced surgical methods, invasive cardiac surgery, pharmacological treatment and technological progress steadily increase survival rates among children with congenital heart defects. Rapid progress in prenatal diagnosis supports early detection of heart defects and the preparation of targeted treatments, which also increases young patients’ chances of survival.
There are no accurate statistical data about the number of children with heart defects in Poland or the age structure of that group. Based on the results of research conducted in the early 1990s, it is estimated that 4000 children with heart defects are born each year in Poland, and mortality reaches several percent [http://www.perfuzja.pl/anatomia-i-fizjologia/39-wrodzone-wady-serca-u- dorosych.html]. Data supplied by the cardiology clinic at the Regional Specialist Children’s Hospital in Olsztyn also throw more light on the problem. The hospital treats more than 3000 children, residents of the Region of Warmia and Mazury, with heart defects that need to be addressed surgically [Serduszko Foundation for Children with Heart Defects and Diseases]. The hospital also admits children who require only pharmacological treatment. Those numbers indicate that congenital heart defects are no longer a problem that affects a minor part of the society, although it is sometimes difficult to resist the impression that this is exactly how the issue is perceived by the public.
Children with congenital heart defects and their families are also rarely addressed by humanities research due to very limited knowledge about the impact of this condition on education and social life. This aspect will be discussed at greater length in successive parts of this article.
A congenital heart defect is classified as a chronic condition which is defined by the Chronic Disease Committee of the World Health Organization as any dysfunction or impairment having one or more of the following characteristics: they are permanent, leave residual disability, are caused by nonreversible pathological alteration, require special training of the patient for rehabilitation, or may be expected to require a long period of supervision and care [Wojciechowski 2007, p. 27]. Social scientists, in particular psychologists, educators and sociologists, regard chronic illness as a potential stressor that changes the life situation of the child and its family and introduces new expectations and limitations that need to be addressed on a daily basis [Pilecka 2007]. This is undoubtedly a traumatic experience. The illness not only affects the family’s situation, but also introduces dramatic changes to the family structure and the relations between its members.
A diagnosis nearly always comes as a shock to the parents, and the disease is a daunting challenge for the entire family [Gruba 2003, p. 166]. Pilecka [2007]
rightly noted that children affected by chronic illnesses are normal children in an abnormal situation. By the same token, it can be said that the families of children with chronic conditions are normal families facing abnormal circumstances.
Social sciences literature dedicated to the general problem of children with chronic illnesses and their families is extensive, and it tackles various aspects of life. A chronic condition places a huge burden on the family, but the specific nature of a congenital heart defect and its consequences are rarely discussed in the literature. The characteristic features of the disease and the associated difficulties need to be described in greater detail to facilitate the development of an effective support system for children and their families.
2. A congenital heart defect as a chronic condition. Description of the disease
Chronic illnesses are diagnosed relatively frequently in Poland. According to the Institute of Mother and Child, children with chronic conditions account for 10–15% of the entire population. Congenital heart defects are among the most frequent inborn conditions which are developed prenatally and diagnosed before or during birth. The discussed condition is defined by Professor Edward Malec as abnormalities in heart structure or heart function that persist from the moment of birth. In medical literature, the definition of a congenital heart defect is very broad, and it covers:
– abnormal connections between right and left heart chambers, between arterial vessels or between a vessel and a chamber,
– abnormal function of the atrioventricular valve or the semilunar valve, – abnormal blood flow through the heart or blood vessels, or
– abnormal anatomical position of the heart in the thoracic cavity [Hoffman, Rydlewska, Sadowska, Rużyłło 1980, p. 249].
The clinical consequences of heart defects are determined mainly by the type and degree of hemodynamic abnormalities (blood flow abnormalities), and, to a lesser extent, by the severity of anatomical changes. Many anatomical irregularities do not disrupt blood circulation and do not give rise to pathological symptoms.
Heart defects do not produce identical consequences for a child’s development.
There are many medical classification systems of congenital heart defects, but they will not be discussed in this article. Every heart defect is different, and the diagnosis may involve the identification of the main defect with several accompanying defects. Some defects do not require surgical intervention and are treated only palliatively with the possibility of a heart transplant in the event of complications or a deterioration in the patient’s condition.
Similarly to other developmental abnormalities, the causes of heart defects remain unknown. They probably involve genetic and environmental factors as well as the mother’s health condition. In most cases, heart defects are caused by a combination of factors. Chromosome abnormalities, including Down syndrome, Edwards syndrome and Turner syndrome, are diagnosed in 10% of children with cardiovascular abnormalities. DiGeorge syndrome is identified in 5% of patients, and monogenic diseases, such as Smith syndrome, Marfan syndrome and Holt- Oram syndrome, are observed in 3% of the affected children. In most patients, however, heart disorders are isolated defects. The risk that the baby will develop a heart defect increases in mothers who contracted rubella in the first trimester of pregnancy, mothers with an alcohol addiction and mothers suffering from diabetes [Dangel 2007a].
According to Maria Hoffman [1989], non-genetic factors that contribute to heart defects include abnormal implantation, hypoxia during embryonic development, the impact of physicochemical factors – radioactivity and X-rays, selected medications, fever, bad nutrition and infections during pregnancy.
Hoffman argues that in most cases, congenital heart defects are caused by viral diseases contracted by the mother between the 3rd and 8th week of pregnancy, which marks the beginning of heart development in the fetus. Inborn heart abnormalities are most often diagnosed in young and healthy mothers, which is why ultrasound screening should be part of routine care during pregnancy [Dangel 2007a].
Heart defects can be identified already during the first ultrasound examination which is performed between the 11th and 14th week of pregnancy. An experienced doctor using a high-quality ultrasound scanner can make a preliminary assessment of the heart structure. The anatomical position of the heart, heart chambers, the three-vessel view of the mediastinum, coronary arteries arising from the aorta and the pulmonary artery, as well as cardiac rhythm are evaluated between the 18th and 22nd week of pregnancy. The type of defect and the available treatment options can be determined after this examination. Despite the above, in more than 50% of cases, heart defects are diagnosed only after birth [Dangel 2007b].
3. Development of children with heart defects
A single model of child development is difficult to describe due to different types of heart defects. Parents can expand their knowledge of the disease by reading about the experiences of other families.
Children with heart defects are often characterized by lower height and lower weight than their healthy peers. The above results mainly from long-term hypoxia and the resulting eating disorders which usually begin at infancy and persist throughout childhood. Newborns tire easily and have to be fed small portions
from a bottle (e.g. every two hours), which turns feeding into a round-the-clock ordeal. Infants may vomit nearly after every meal. Many children have to be fed a high-energy, gluten-free and easily digestible diet with a low salt content for many years.
Children with congenital heart defects, in particular cyanotic heart defects, usually develop slower than their healthy peers. They learn to walk at an older age, and a major developmental leap is often observed only after the last corrective surgery. The affected children may learn to run or jump only at the age of several years or even in early adolescence. Young patients often require continuous and specific rehabilitation, including pulmonary rehabilitation, and sensory integration therapy.
Many children, including patients who have undergone corrective cardiovascular surgery, may have lower cardiac efficiency which significantly deteriorates a child’s performance in kindergarten or school (physical fatigue when climbing the stairs, etc.).
Children with congenital heart defects, in particular cyanotic heart defects, are often susceptible to infections which, in combination with an erratic vaccination schedule and the dangerous implications of infections for an abnormal heart, further exacerbate the social problems experienced by young patients. The parents are often faced with the dilemma of whether their child should attend a kindergarten or school.
Children with isolated heart defects are characterized by average intelligence, although prolonged hypoxia can induce neurological problems. Patients with cyanotic heart defects tire more easily, they have poor concentration and slow responses, which negatively affects their school performance.
Selected heart defects require prolonged or even life-long pharmacological treatment. The administered medications prevent heart rhythm disorders, thrombosis and heart failure. A pacemaker may be required in some cases.
4. Families of children with heart defects in the society – selected aspects
At first glance, the information presented in the previous chapter does not seem to suggest that the problems faced by families that bring up children with congenital heart defects differ significantly from the challenges facing families that raise children with other chronic conditions. Disease-specific problems are described mainly on Internet forums by parents who are beneficiaries of non- governmental organizations. The relevant information has not yet been covered by research papers or has been included only partially based on the results of surveys [Bawej 2009, Jakuć 2010].
As mentioned earlier, congenital heart defects have not yet been recognized as a social issue. The affected children and their parents have to deal with the
consequences of lacking or limited knowledge about the disease as well as the fear they invoke in others. The fear may be exacerbated by medical knowledge (in doctors) or suspicions (members of the public) associated with the fact that the heart plays a major role in the human body. The heart is the “motor”, the key organ which is required for life.
The problems experienced by parents of children with congenital heart defects begin already upon diagnosis, which often takes place before birth. The parents expect the physician to provide them with comprehensive information about the condition, prospects, treatment options and assurance that the best treatment will be available. The parents want to know whether their child will develop normally and will become a productive member of society [Jakuć 2010, p. 55]. Nearly half of the families surveyed by Olga Jakuć [2010] did not receive comprehensive information about the defect or its consequences from the physician who diagnosed the condition. Most of them resorted to professional literature and the Internet in search for the relevant information [Jakuć 2010, p. 56]. The manner in which the knowledge was communicated to the parents was also inappropriate in many cases. In the cited survey, 6 out of 28 mothers have painful recollections of that moment. These are some of their remarks: “the physician performing the ultrasound exam told me to buy a coffin instead of a cot because this is not an operable condition, and children with heart defects die” [...], “the physician yelled at me and did not provide me with any specific information about the disease”,
“A cardiologist from Gdańsk made the diagnosis. She told us that the heart defect was serious, and that there was no point in trying to save the baby because its life would be short and painful. She told us to say goodbye and said that they would give him medicine to relieve pain at the end of life” [Jakuć 2010, p. 56].
Karolina Bawej [2009] also reported on the “good advice” given by the hospital staff to the parents of children with heart defects. In her survey, 31%
of mothers were told something along these lines: “You are still young, so have another baby as soon as you can, because this one has slim chances of survival”
[Bawej 2009, p. 66].
According to Aleksandra Maciarz [2006], iatrogenic mistakes can be attributed mainly to doctors’ excessive workload and limited consultation time per patient.
In my opinion, they result mainly from a lack of knowledge about heart defects and modern treatment options, as well as medical personnel’s inability to discuss the problem. Those problems were to be resolved by a handbook entitled “Standards for information and emotional support for parents of children with congenital defects: guidelines for physicians”, authored by Magdalena Dyga-Konarska and released in 2003, but the publication does not seem to be widely known in the medical community. The described attitudes of medical personnel lead to psychological demobilization, lower motivation to participate in the child’s treatment and irrational defensive behaviors.
Low levels of knowledge among pediatricians and pediatric nurses also affect the attitudes of other specialists. One of the mothers surveyed by Karolina Bawiej wrote: “Unfortunately, none of the doctors in our town knew what was the required course of action, and nothing has changed since” [Bawej 2009, p. 88].
Similar opinions were expressed in the survey conducted by Olga Jakuć: “Even doctors are not familiar with routine procedures for children with heart defects.
The doctor was afraid to stitch up a wound on our son’s head” [Jakuć 2010, p.
74]. As a mother of a boy with severe congenital heart disease, I can also recall many such experiences. When my son developed a toothache during our stay at the seaside, I had to make dozens of calls before I was able to find a dentist within a 50 km radius who was willing to admit a child with a serious heart defect.
Most dentists were not even aware that such children require antibiotic treatment before a dental intervention.
My experience and the experiences of my colleagues in the Serduszko Foundation for Children with Heart Defects and Diseases also indicate that the affected children find it difficult to socialize and actively participate in the life of the school or kindergarten. Parents, in particular mothers, families and friends may also have a skewed view of children with heart defects.
As previously mentioned, parents face a dilemma as to whether their child should attend kindergarten or other group activities due to a compromised immune system and a high risk of infection. Despite those concerns, the awareness that socialization will further the child’s development or other necessities of daily life (employment) prompt parents to give kindergarten a try. I also made such an attempt. There are no clinical indications for placing a child with a heart defect in an integration kindergarten or a special needs preschool. I applied with a renowned kindergarten in the neighborhood, and I asked them to admit my 3.5-year-old son to a summer afternoon class created especially for children who would begin regular kindergarten in the fall. I told the principal and the personnel about my son’s condition and the resulting limitations, emphasizing that after corrective surgery, the only thing my son should avoid is excessive physical effort. One of the teachers refused to admit my son to her group. The principal intervened, and my son was placed in another group on the condition that I would be available during the 3-hour class. The story repeated itself when I applied for admission in other kindergartens.
We probably need scientific research to explain the fear of children with heart defects and to rationalize hidden biases behind that fear. I have shared my experiences with other parents who are beneficiaries of the Serduszko Foundation, and I know that fearful responses are common among both teachers and students. In Germany, the problem was addressed in a guidebook for teachers which contained tips for dealing with students suffering from a heart
condition1. The fate of the discussed guidebook for Polish physicians indicates that the development of sound standards does not solve the problem unless it is accompanied by an effective system for distributing and implementing the recommended methods.
The fear of children with heart defects represents one end of the spectrum of problems faced by the children’s families. At the opposite end, there is a complete lack of understanding for the actions and decisions made by the parents on account of their children’s heart condition. Paradoxically, the problem lies in the fact that a heart defect is “invisible”. Most children with a heart condition are classified as disabled, but their disease and the resulting limitations are usually not apparent. The affected children do not differ in appearance (except in certain cases of cyanosis) or intelligence from their peers. People who are not familiar with the disease find it very difficult to understand the nature of the children’s disability, which may lead to negligence when the fear barrier is broken. Cautionary measures undertaken by the parents are, at best, regarded as overprotectiveness.
My son looks like a perfectly healthy and highly active child, but due to a complex cyanotic heart defect, he has very low cardiac capacity, he tires easily and needs a lot of sleep. Excessive fatigue also leads to water retention and puffiness. At the age of 5 years, he still needs plenty of rest in the afternoon, which helps him stay awake until bedtime. I have to pick him up from kindergarten already at noon, and I have been told many times by friends and family that my overprotectiveness would deprive my son of important social skills. Fluid control is also a problem.
My son takes diuretics and blood thinning medication every day, therefore his fluid intake has to be strictly monitored. Kindergarten teachers were reluctant to comply with this requirement, and most of them would tell me that my son was not thirsty. The “he will drink when he is thirsty” principle works well with healthy children, but it could be dangerous for children with heart defects. I could give many more examples of the problems that sick children’s parents have to face on a daily basis. My experiences have been validated by Olga Jakuć, in whose survey nearly 80% of parents negatively evaluated social attitudes towards children with congenital heart defects and their families. One of the surveyed mothers wrote: “[...] Our society lacks any knowledge about heart defects. People are clueless about the disease, the treatment and the patients’ daily lives [...]. An acquaintance once asked me if my child would be mentally handicapped for the rest of his life. People who never met someone with a heart defect have absolutely no idea about the disease” [Jakuć 2010, p. 74].
The surveyed mothers also pointed out that the parents are often stigmatized and blamed for their child’s condition, which also results from low levels of
1 Das herzkranke Kind in der Schule – Leitfaden für Lehrer/innen, Kroschke Stiftung IDHK, Stuttgart.
awareness. “[...] This is a complete mystery for most people who are convinced that a child’s sickness can be directly attributed to the parents’ behavior and lifestyle” [Jakuć 2010, p. 74]. The majority of parents surveyed by Olga Jakuć and Karolina Bawej also pointed out to the general unavailability of professional support for children with heart defects and their families.
Conclusions
The article discusses selected problems faced by children with congenital heart defects and their families in Poland. As mentioned in the Introduction, there is a general scarcity of comprehensive studies addressing the issue. Medical personnel, educators and caretakers have very little knowledge about this chronic illness and its prevalence, and they are unable to identify the problem, in particular aspects that influence the social life of children and their parents. For this reason, physicians and educators do not see the need to implement special, scientifically recognized measures that would enable young patients and their families to function better in society.
Social responses to children with heart defects lie at the opposite ends of the spectrum. On the one hand, there is unjustified fear which results from poor knowledge, and on the other, the disease is neglected and marginalized because it does not produce apparent physical symptoms. For this reason, the families of affected children are often left to their own devices, and they receive support only from other parents who are faced with the same problem, such as the beneficiaries of the Child’s Heart Foundation (Fundacja Serce Dziecka) or the Cor Infantis Foundation. The problem is also marginalized by local authorities. A rehabilitation and counseling workshop project for the parents of children with heart defects, developed by the Serduszko Foundation for beneficiaries in the Region of Warmia and Mazury, lost a grant competition in two consecutive years because it was evaluated as an undertaking with low levels of “social utility”.
Grassroots movements initiated by parents and non-governmental organizations will not solve the problem without the support of psychology and education experts.
Bibliography
Bawej K. (2009), Problemy rodzin wychowujących dzieci z wrodzonymi wadami serca, http://hlhs.
pl/wp-content/uploads/problemy_wychowawcze.pdf, retrieved on 05 February 2014.
Dangel J. (2007a), Prz ycz yny wrodzonych wad serca i ryz yko urodzenia kolejnego dziecka z wadą serca [in:] E. Malec, K. Januszewska, D. Radziwiłłowa, M. Pawłowska (eds.), Dziecko z wadą serca. Poradnik dla rodziców, Fundusz Serce Dziecka przy Fundacji im. Diny Radziwiłłowej, Warszawa.
Dangel J. (2007b), Wykrywanie wad serca przed urodzeniem – rola diagnostyki prenatalnej [in:] E.
Malec, K. Januszewska, D. Radziwiłłowa, M. Pawłowska (eds.), Dziecko z wadą serca.
Poradnik dla rodziców, Fundusz Serce Dziecka przy Fundacji im. Diny Radziwiłłowej, Warszawa.
Dyga-Konarska M. (2003), Standard informacyjnego i emocjonalnego wsparcia dla rodziców niemowląt z wadami wrodzonymi serca: wskazówki dla lekarz y, IP CZD Warszawa, No. 3, pp. 5–28.
Dyga-Konalska M. (ed.) (2005), Psychologiczne problemy dzieci i młodzież y z chorobami serca, Centrum Metodyczne Pomocy Psychologiczno-Pedagogicznej, Warszawa.
Gruba J. (2003), Twórcze postawy rodziców i wychowanków wobec dzieci przewlekle chorych [in:] Cz.
Kępski (ed.), Opieka i wychowanie w rodzinie, Wydawnictwo Uniwersytetu Marii Curie- Skłodowskiej, Lublin.
Hoffman M., Rydlewska K., Sadowska W., Rużyłło W. (1980), Wady serca, PZWL, Warszawa.
Jakuć O. (2010), Rodzina dziecka z wadą serca – funkcjonowanie i system wsparcia,
http://www.sercedziecka.org.pl/files/pdf/media/Rodzinadzieckazwadaserca.pdf, retrieved on 05 February 2014.
Maciarz A. (2006), Dziecko przewlekle chore. Opieka i wsparcie, Wydawnictwo Akademickie ŻAK, Warszawa.
Makowiecka E., Moll J., Moll J. (2001), Mam dziecko z wadą serca, Wydawnictwo ADI, Łódź.
Malec E., Januszewska K., Radziwiłłowa D., Pawłowska M. (eds.) (2007), Dziecko z wadą serca. Poradnik dla rodziców, Fundusz Serce Dziecka przy Fundacji im. Diny Radziwiłłowej, Warszawa.
Pilecka W. (2007), Psychospołeczne aspekty choroby somatycznej dziecka- perspektywa ekologiczna [in:] B. Cytowska, B. Winczura (eds.), Dziecko chore. Zagadnienia biopsychiczne i pedagogiczne, Oficyna Wydawnicza Impuls, Kraków.
Słomczyńska M. (2009), Dziecko z wrodzoną wadą serca w szkole, problematyka kształcenia i wychowania, http://www.sercedziecka.org.pl/files/pdf/media/dziecko_z_wada_
serca_w_szkole.pdf, retrieved on 05 February 2014.
Wojciechowski F. (2007), Niepełnosprawność, rodzina, dorastanie, Wydawnictwo Żak, Warszawa.
Dorota Strzelczyk
University of Social Sciences
Transactional Analysis as a Method to Test the Quality of Life of a Family
Abstract: One of the actions that affect the quality of life of the family as a complex system of relationships is interpersonal communication that takes place between the members of the family. In line with the transactional analysis, the trend in psychology founded by E. Berne, relationships between individuals should be based on honest and open disclosure of one’s desires and attitudes, i.e. variety of transactions. Otherwise, there are specific game leading to maintain and increase the distance between family members, weaken the ties between them and leading to a reduction in the quality of interpersonal relationships.
The paper below aims to make closer the problems of transactional analysis, beginning from the explanation of the structure of “Ego” according to Berne and the terms
“transactions”, “reinforcement” and “life scripts”. There will be presented also games played in family environment and their consequences for the proper functioning of the family.
Key words: interpersonal communication, communication in the family, transactional analysis, Berne, family games.
Transactional Analysis is one of theory of contemporary psychology that has been widely popularized. It is used in considering of development of individuals according to the experiences from childhood and the quality of relationships with significant people. Berne noticed that this is verbal communication, especially that which occurs directly between two people, which is the center of interpersonal relationships and affect their quality both: improving and disturbing them. The key point to understand the idea of transactional analysis as a way of considering the system of relationships among the members of a family that affects the quality nr 5(1)/2015, ss. 27–38 DOI: 10.1515/fampe-2015-0003
