The Journal of Asthma Research. Vol. 14, No. 4, July, 1977

How Do Children Feel about Having Asthma?*+

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F. VOORHORST-SMEENK, M.D., M. ED.** Introduction This question is difficult to answer in general terms. Every asthmatic child feels differently about his illness, and this is often more determined by the way in which he copes with his native abilities, upbringing and environment than by the typical characteristics of his illness as described in medical textbooks. If, for instance, a child is preoccupied with serious difficulties at school or at home, his feelings about the asthma are pushed into the background, unless the illness is so serious that everything has to give way before it. This is indeed usually the case during acute phases, which sometimes give rise to temporary feelings of panic, usually quickly forgotten when it is all over. Most of the children who are referred to the pedagogue working in a medical center are usually preoccupied with problems of a different nature. These problems can, however, considerably complicate the asthma and its treatment and may even determine the ultimate result of medical treatment. It is only when the asthma is so serious that it forms the chief problem of the child’s life for a long period of time, against an optimal pedagogical background, that we can expect the child’s feelings about the illness itself to come to the fore in an unadulterated form. In our experience this is the exception rather than the rule. The visible symptoms of asthma are often vague. It is easy to become so accustomed to mild or moderate lack of breath that the accompanying bodily sensations are scarcely noticed. Sometimes, indeed, one no longer knows what it feels like to be healthy. An objective attitude towards the’child’s illness is frequently diminished because he can so easily be induced to deny or repress his complaints (except, of course, during acute attacks). Whether or to what extent this happens largely depends upon the attitude of the parents. If they believe that asthma “is only psychological” or is simply brought about by wrong use of the muscles of breathing (Groen, 19761, the child is not really considered physically ill and is often compelled to “take no notice” of it. The opposite position i s taken by overprotective parents who register their child’s every little “wheeze”. The parents’ attitude is also culturally conditioned and is strongly influenced by the general climate of opinion on this matter, which is in turn a residue of current medical * I acknowledge the most valuable help of Dr. G. Uildriks-Bone, who translated the manuscript into English. t With the aid of a grant of the Dutch Asthma Foundation. ** From the Department of Allergology, University Hospital, Leiden, The Netherlands; Head: R. Voorhorst, M.D. 169

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opinion. The personal opinion of the doctor ultimately treating the child, of course, weighs most. In what follows, our discussion of what children feel about asthma must also be seen against the background of the medicalpedagogical conceptions of the Department of Allergology of the University Hospital at Leiden, where these children are being treated (VoorhorstSmeenk and Voorhorst, 1973; Voorhorst, 1975).

Selection, Methods of Examination and Treatment In this article we shall chiefly be concerned with children of primary school age. It is with children at this stage of development that we have most experience, and, as far as asthma itself is concerned, this period is the most interesting because these are the years during which it is most troublesome and affords a typical clinical picture. Before this time the child has usually had a continuous series of infections, such as inflammation of the middle ear and bronchial tree. Attacks of serious tightness of the chest usually start in the fifth or sixth year. There are, of course, exceptions to this rule, and we have also seen younger children with “typical” attacks of asthma. During adolescence the illness often clears up spontaneously, although this is not an absolute rule either. In the Department of Allergology of the University Hospital at Leiden, a few hundred children have been pedagogically/psychologicallyexamined, 1. Because of difficulties in the medical treatment. The attitudes of both parents and child

were such that the advisor was of the impression that the results of treatment were less than might have been expected; 2. Because the parents themselves came with pedagogical problems; 3. Because the children had been selected for participation in a summer camp for asthmatic children for one or both of the above two reasons, and/or on sociaUpedagogica1 grounds.

The organisation of summer camps was motivated by a variety of considerations (Voorhorst-Smeenk & Voorhorst, 1973): 1. The children had usually had little experience of being away from home (which entailed a

restricted view of the world); 2. They often had difficulty in holding their own amongst children of the same age; 3. It is good for parents to be able to let their children go away “on holiday” without them for

once (they can let them do so without risk because both doctor and pedagogue are always present in the camp); 4. Later counselling of the children is facilitated when both doctor and pedagogue have got to know them so well day and night in a camp. The parents find this important too.

Further preliminary sources of information regarding these children and their families are provided by home visits made by the nurse, our contact with the school, and the talks with the parents. On the basis of the insight into the situation subsequently obtained from our pedagogical/psychological examination, a “plan de campagne” is set up together with the parents. In serious cases, this usually involves pedagogical play therapy (individually or in a group of 4 children of the same age and with similar problems) and/ or participation in a summer camp, in some cases followed by further counselling. Close contact with the parents is kept up. Sometimes pedagogi-

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cal or school advice suffices. (For more details see: Voorhorst-Smeenk & Voorhorst, 1976.) How do all these data enable us to understand how a child feels about his illness? A direct question such as “What do you feel like when your chest becomes tight or you are short of breath?’ usually just confuses the child. He is as a rule unable to distantiate himself from his illness sufficiently to give a meaningful answer to this. He withdraws into himself, becomes restless, or just says “you’re short of breath”, or “you just can’t get any air”, or “It’s as if you’re suffocating.” In our opinion, these questions should not be put, even though the child must ultimately learn to see his illness objectively in order to be able to take the necessary measures of his own accord. If we talk about it too much, we are likely simply to get a lesson learned by heart or a rationalisation which is of no help. The child has in the first place to learn to cope with his illness on an emotional level. In order to be able to help him in this, the pedagogue must be able to enter into and share his life. Play offers a unique possibility for this in both diagnosis and treatment, especially with the primary school child (6-12 years). In his play, a child often “tells” us without words a lot about his own life, if, at least, we understand the “language” of his play. Play forms part of every healthy child’s life. If he has problems, and they are not too seriousin which case this way is blocked-play is the way in which he can express them. In play therapy, however, more takes place (Vermeer, 1955; Van der Zeijde, 1962). In addition to expressing how he feels about the world, the child himself now sees what he has expressed, and this confronts him with something about himself and his problems. He realises more clearly how he feels about things. He has in fact made a picture, or image, of his world, and the “images” in turn speak to him (Langeveld, 1964). He experiments with them and sometimes in the very course of play in fact finds a solution. This is, however, not always possible. In play we see that the child returns again and again to what is preoccupying him. The therapeutist who has been trained to understand the meaning of these “images” is able to give the child support and help in finding a solution for his problems by joining in (Communication in Images, Lubbers, 1966) or to help him to make the best of a situation which cannot be changed. Sometimes verbalisation of what the child is doing (not interpretation!) suffices (Axline, 1964). When the child has come to terms with the problem, his compulsive preoccupation with this theme disappears. The child starts to talk about it of his own accord and is subsequently also better to put into words what is emotionally preoccupying him. His life has become liveable again.

Some Examples We have selected two children who were sdfering seriously from asthma, but whose home environment was relatively favourable, so that their illness constituted the chief problem of their life. Alongside their feelings about the illness which appeared in these uncomplicated cases, the children also

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depicted the parents’ attitude to them and their illness. These images come to the fore in the form of projections during psychological examination, and especially in therapeutic play (Langeveld, 1968a, 1969).

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Case 1.

An asthenic 8-year-old boy suffering seriously from asthma was at first too emotionally blocked to express himself in dynamic play. Physical improvement and growth of pedagogical security gradually made this possible. During the next six months, his preoccupation with the “intangible, invisible danger” (illness!) constantly stood out during the monthly play therapy sessions. For this he chose a crocodile which hid itself under water and sand, unexpectedly attacked people, and later disappeared. Soldiers and police set up a chase, at first without success, until the animal was at last touched, later killed and buried. This was repeated on four successive afternoons. On the fifth occasion, he settled with the animal far more thoroughly, by placing a large number of soldiers round the pond in which the crocodile was hiding. All the soldiers fired, so that the animal could not be missed. It was killed, floated on the water and was subsequently buried. No one knew who had fired the deadly bullet. On the sixth afternoon, the animal again made its appearance, after it had escaped from the zoo. It was, however, covered with a fur pelt and looked much less dangerous. When it was discovered, father took it back to the zoo. Everyone could now go on sleeping peacefully without the animal having to be killed. The child seems gradually to have come to feel less threatened and even to be able to sleep peacefully with danger in the background (the crocodile in the zoo). In the seventh play session, the monkey Rikkie (with which our little patient had already identified himself earlier on) is the central character, Rikkie hurt himself in a dangerous maneuver and became so angry at this that he buried his head in the sand, whereupon “mother” remarked that she might as well put him in a flower pot in front of the window if he behaved like that. He quickly went and washed himself, landing on the way in the “forbidden dwarf‘s pond” in which the crocodile was hiding. But he didn’t get bitten. When he went home, an “invisible” dwarf hit him with a carpet beater, which Rikkie from fear bit back. Afterwards mother threw away the carpet beater and comforted him. (Sceno test, von Staabs, 1951.) Our little patient knew he must not become unreasonably excited, as this might reduce his condition and expose him to more risk of becoming ill. When he nevertheless did so, he buried his head in the sand (would not face up to his unreasonableness). Mother’s sensible and calm reaction made the situation less emotional; he went and got washed, yet still ended up in the “forbidden pond” (became conscious of the danger of illness brought on by himself). All ended well, however, and after he had received the punishment he deserved, he continued to be accepted by mother (she threw away the carpet beater and comforted him in his fear). In play, the child has depicted

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against the background of a favourable home environment the way in which unreasonable excitement can land him in emotional turmoil and the possible consequences of this for his illness. Apparently he has acquired a certain amount of self-knowledge and for the first time dares to confront himself with the illness at a moment when he is physically well and feels secure in the play therapy situation. In a month’s time he will be nine years old. This was a very special occasion, for he had never really celebrated his birthday, having always been ill on this day. The eighth play session was very disorderly and almost chaotic. It was at first not clear why the child was so restless. In the next (ninth) play session, immediately before his birthday, the theme of “the birthday of a gentleman, the father of a family” made its appearance (see Fig. 1, 2 and 3). A little boy was in too much of a hurry to go to the party. The doctor just managed to prevent him from making a dangerous leap, for he wanted to jump off a wall over cars, and leap right into the party. In the background danger is represented by a bear who is kept at a distance by a lady feeding him (the pedagogue?). Our patient gave the following explanation: if the boy did not quietly follow the official route to the party and became too excited, then he would perhaps become ill and not be able to attend at all. The child knew that he might well once more become ill on his birthday if he gave in to his excitement. (A few days later he in fact celebrated his birthday for the first time without becoming ill.) In the course of further play therapy, we saw him increasingly able to face up to reality. He began to share the responsibility for his illness, although during less favourable periods the lack of security was still in evidence. It is interesting to relate that children often use the crocodile in the

FIG. 1.-General view: on the right, father’s birthday party; the guests are crossing the bridge to the party. In the background on the left near the bridge “the bear” being fed; on the left in the foreground the little boy on the wall with the doctor.

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FIG. 2.-Detail from Fig. 1: “the bear” is depicted by the Sceno “cow” covered with a fur pelt-a very good-natured bear! The doctor is holding the little boy back.

FIG. 3.-Detail from Fig. 1: “the party”: it is father’s birthday and he is sitting in the armchair (his birthday present). Our little patient identified himself both with the little boy on the wall and the father whose birthday it is.

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playroom to depict the “unpredictable danger”. One of the children made a crocodile of clay, which he then placed on a piece of paper painted blue to represent water. The crocodile was also painted blue, so that it became “invisible”. We are convinced that this kind of image reflects feelings about the illness in a phase of development in which the child is as yet unable to bear responsibility for it. In these images the danger comes “from outside”. For this a snake is sometimes chosen too, which the children themselves first make out of clay. Although rolling clay is in itself obviously an activity which invites one to make a snake, we are still convinced that with our children this has nearly always had something to do with the illness, in view of the context in which it happened and the function the snake acquired in the images introduced during play therapy. Case 2 .

A more sthenic boy (11 years of age) modelled snakes of clay, which then hid in the grass, and he depicted his fight against the illness by a fight between a dinosaur and a snake. In a later stage of play therapy, the dinosaur disappeared; and while he was modelling with clay, the snake theme reappeared in the form of a snake entwining the throat and chest of a human figure (Fig. 5). This happened during a rather serious period of chest tightness. Only later did he learn to contemplate his situation more realistically, to discover the illness as his illness, and shoulder responsibility for it, so increasing his resistance to it. He learned to decide for himself when he needed his medicines and how to keep the illness reasonably within limits by sensible adaptation of his behaviour. The medical treatment became more effective (he had in the meantime become 14 years of age). We believe that for effective play therapy with children for whom the illness forms their chief problem, the following phases are characteristic: 1. At first the child really hardly dares to play, and if he ends up by doing so either of his

2.

3.

4.

5.

own accord or as a result of encouragement to do so (by therapeutic increase of basic security), the play is static. The child gets no further than setting up toy figures and buildings (e. g. a village). He shows how formal his world looks, although there is often something more present, something menacing. Gradually play passes over into the second phase, in which the menacing preoccupations emerge in images (crocodiles and snakes). The play becomes increasingly dynamic (fighting and shooting, to eliminate the threat). In the third phase, we see the menacing element become somewhat less dangerous (the crocodile goes back to the zoo). After that, a new figure emerges upon which the menace can be directed (Rikkie the monkey, the dinosaur). Gradually the menace diminishes and is directed towards human figures (birthday scene, the snake-entwined figure). The danger of the illness receives non-verbal recognition, the images are closer to the reality of the world in which he lives. In the final phase, the children begin to talk to the therapist about their illness. They have discovered it as their illness, against which they themselves must try to fight, and this involves adopting the right attitudes in daily life. New themes are introduced (e. g. adolescent problems).

When play has become free of preoccupations, we can terminate our treatment.

F. VOORHORST-SMEENK

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FIG. 4.-The snake, on the right, on its way to attack the dinosaur, on the left, in a landscape modelled by the child himself. In the foreground in the lake is to be seen the head of a friend of the dinosaur who is swimming there and comes above water for some air. (A beast somewhat like a crocodile visible in the background stems from a n earlier phase of therapy and has nothing to do with the present theme.)

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FIG.5. -Our patient was 13 years old when he modelled this cross between a cuttle fish and a human being, during a period of severe shortage of breath. The human-like figure depicted is supported by extra arms in order to sit up straight. The neck and chest are entwined by a snake, which has become stiffened into a heavy yoke, which makes breathing difficult.

Comment: We should like to point out once more that these examples show how children have coped with their problems in therapeutic play. They depicted processes of mental growth, whereby the role of the therapist during contact with the child was to remove obstacles lying in the path of growth and to stimulate further growth. The child’s own person was always respected. If the therapist fails to do this and thinks he knows beforehand what asthmatic children are like and how they must be treated in daily life, there is a great risk that he does violence to their authenticity and that they ultimately become people who completely fit the picture of the “asthma patient” as described in medical and psychological (psychosomatic)literature: the infantile personality, the formal socially adjusted person (who “is lived” as it were) or the neurotic. In the assistance we give, this hazard should be avoided as far as possible. Impairment of Basic Security In the above examples we found a clear impairment of “basic security”. This is a serious matter (Voorhorst-Smeenk, 1970). It is a shocking and frightening experience for a child not to be able to cope with his own body at unexpected moments (it is the certainty that one can do so which affords such a strong support for self-confidence!).The child is, as it were, confronted with the “inevitable” at an age at which he is by no means equal to this - although, come to that, when is an adult equal to it?

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This is especially frustrating during the pre-adolescent phase, when the child leans so heavily on his physical capacities (10-12 years)”. This need not surprise us. Pliigge (1962) has already pointed out that being ill is primarily felt as estrangement from the world. We are confronted with our own body as an external object, as it were, when we notice that it doesn’t function properly (Buytendijk, 1965). It is then experienced as a “situation” and can be depicted in images as if it didn’t belong to us. The child has by this time passed through a whole course of development. These images, however, only make their appearance when he has no other problems seeking expression with which he is even more preoccupied than with his illness. Nearly all the children we have examined so far seem to have a lack of basic security. The cardinal question is whether and to what extent this lack is attributable to the asthma as such, or to parental inadequacy, the child’s constitution, his attitude to the illness and/or other problems. As we already mentioned earlier, the children did not in most cases feel their illness as the most immediate threat. This may possibly also be connected with the way in which they were selected for us and the medical treatment they had already received. For many had already much improved as a result of the medical treatment received in the clinic for Allergology before the pedagogical/ psychological examination. Basic security is an essential prerequisite for a good pedagogical foundation of early life. Without this, the child will not be inclined to explore the world and grow up (wish to be someone himself). Without it, he is insufficiently motivated to bring about the change of behaviour necessary for curing the illness. It is, then, of utmost importance that everything possible should be done to facilitate an optimal personal development of the asthmatic child both now and in the future.

Basic Insecurity in Daily Life (How the child feels about the world) Severity of the illness, self-confidence and outlook on the future The extent to which the child’s life is affected by the illness varies from case to case. When an asthmatic patient is short of breath in the night once or twice a year, it depends on the severity of the attack how far this has a traumatic effect. They are short, acute situations, and it is dubious whether the child discovers a connection between them and takes into account the possibility of a new attack in the future or not. This is determined by the pedagogical situation as a whole, including the role played by the medical practitioner in this. When the attacks are less severe, his upbringing will be less affected; every child is ill from time to time. The situation is quite different if the same symptoms make their appearance many times a year,

* We are of the opinion that in the above examples the lack of basic security could indeed chiefly be attributed t o the illness, as the images could not otherwise be interpreted when seen against the background of the world in which the children lived.

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and the child remains ill after the attacks for several days or longer and often feels unwell during the intervening “free periods”. Although the medical diagnosis “asthma” is the same in both cases, and the direct cause perhaps also (e. g. house-dust allergy), the situations which arise are totally different from a pedagogical point of view. The certainty of being able to count on one’s own body is, as we already pointed out, really absolutely necessary for the development of self-confidence. Closely associated with this is the fact that for the asthmatic child the tension and excitement accompanying the prospect of future events (pleasant or less pleasant) is greater than is the case with most healthy children. For there is always the possibility that the illness will put a spoke in the wheel. It is consequently very difficult for an asthmatic patient who is seriously ill to develop a “healthy’’outlook on the future.

Relationships with the peer group Lack of basic security also avenges itself in relationships with other children. An asthma patient is often insufficiently able to hold his own among others of his age. In asthenic children we see reactions such as: withdrawal, straining to keep up, sometimes ‘buying friendship’ (social dependence). More asthenic children try to conceal their uncertainty: they feel themselves wronged, react aggressively, are dominant and keep a sharp eye on possessions. Sometimes they restrict their world in order to be able to cope; they show off or fall over themselves to curry favour with someone or else to be one up on him; they sometimes compensate by high achievement in sport and at school; others are restless and up to mischief. School and sport The teacher who is a good observer will certainly recognise a few of the above reactions in his pupils. He will also notice that in the morning at school the children cannot get into their stride so easily, especially if they have had a bad night. They are then often tired, have difficulty in concentrating and quickly become emotional. The asthenic children sit and daydream, while the more sthenic ones are sometimes too active and jump from one thing to another. As a result school achievements are, understandably, in most cases less than might have been expected. This too increases the child’s feeling of uncertainty. Sometimes the children are too small (corticoids) and have poor psychomotor coordination. The development of their bodily awareness is probably retarded. A poor sense of time and space may be connected with this. If the children drop out of gym or swimming, it is nearly always justifiable, or else a great number of pedagogical errors must have been made. The chance that they take advantage of their illness to get out of things unjustifiably is small. Usually they let no opportunity for physical development go by. As a result, too much is often asked of them in sports clubs (football, handball, swimming) where there is too little expert leadership, so that an attack may

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be provoked. Moreover, training for matches is focused upon healthy children and usually takes place on a level too high for asthmatic children, so that this is sometimes a source of conflicts, as their desire to join in is so intense.

The parents It is difficult for the parents to judge the whole situation in which the child is placed according to its merits. Sometimes they are too sympathetic and spoil him. A number of parents do not talk about the illness, yet panic the moment the child suddenly has tightness in the chest. Many parents become overtired and irritable if they have to get up too often in the night and/or are too worried about their child; if as a result of this they become unreasonable with him, they are subsequently overcome with remorse and try to compensate for it by spoiling him. Other parents dare not face up to the illness and think that the doctor isn’t giving the right treatment or that asthma is psychological. In the event of the latter opinion, they feel excused from paying attention and are only too ready to listen to medical practitioners who tell them to harden the child. These parents are usually not affectionate enough. They have other things to worry about, and it is not always easy to be honestly available every time the child makes a call upon them with his illness. This attitude does not do justice to the child’s own person, and in all these cases his emotional development suffers. This can also be the case when parents, to all appearances reasonable, devote too much time to the child and try to discuss and motivate everything. They really do not allow him to be a child. Unintentionally he is then given responsibility too heavy for his age and is in consequence seriously restricted in his freedom. These parents take child-rearing too serious and are too consciencious. As they are of good faith, the child can find no way out, and his own self-forming power within himself has insufficiently free reign; it is not necessary that everything be put into words, regulated or taught. Other types of “overanxious parents”, who smooth all the difficulties out of the child’s way, also allow him too little of the so essential freedom. There is not enough opportunity for adequate growth of a sense of responsibility; the child remains over-dependent (Voorhorst-Smeenk, 1967). Fortunately, many parents - perhaps most - acquit themselves very well of their task, at least if the illness is not too serious and the pedagogical situation not too complicated. A vicious circle Once all kinds of complicating difficulties have arisen in the child’s world, they should as far as possible be attended to professi\onally in order to make his life liveable once more, or things may go from bad to worse. He worries, sleeps badly, gets overexcited about things, more easily catches infections which are difficult to cure; and the dangerous boundary whereby the asthma rears its head is reached more easily. The reverse is also true: as a result of the poor physical condition, the child is less able to cope with associated pedagogical problems, and a vicious circle is created which is sometimes

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difficult to break. Pedagogical help to child and parents has then at the same time become a way of combatting the asthma. If we are successful in this, medical treatment becomes easier, the resistance to illness increases, the stress decreases.

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How Asthmatic Patients Feel about Their Body The baby and the toddler According to Kugel (1969), certain structures forming the basis of the child’s sensory and motor behaviour are present in the central nervous system from birth onwards; unconscious and automatic behaviour is determined and focused on the world as a result of these. Kugel calls this the “body plan”, which further develops during the course of our life by means of the combined action of motor activity and perception (Gestalt-Kreis, Von Weizacker), and distinguishes this from “body knowledge”. So long as the child has no body knowledge, things happen “to him”, and he will only be able to feel the illness as something which disturbs his sense of well-being. We assume that this can be no more than a diffuse feeling of discomfort, possibly identical a t this stage of development with lack of basic security and recognisable in the child‘s behaviour. This “signal” causes the parents to remove the menace if possible and/or to compensate the child by means of extra care. Regularity of daily care creates a pattern of expectation which is a first beginning of habit-forming (N. B. sine qua non of toilet training). Good habit formation increases the child’s basic security, because it helps to stabilise his world. He knows up to a point what to expect and what he can rely on. As he becomes older, he begins to crawl and walk, and notices that things are hard or soft, hot or cold, etc. The things seem to reveal themselves to him as they are. In his contact with them he also discovers the boundaries of his own body. All sensory impressions such as tasting, seeing and hearing, and above all (from about the second year onwards) development of language, help to complete the distinction between subject and object (the “body plan” has then passed through a whole course of development by that time, which, according to Kugel, is fundamental for later intellectual development). The child no longer feels himself to be just a part of the world, but “someone over and against the world, for the time being one amongst many. He still speaks of himself in the third person (he uses his own name to refer to himself). He only begins to say Y“ (in the sense of the first person) when as a toddler he has discovered he can say “no’) (period of obstinacy) and can “want” something himself. He now not only places himself over and against the world but also over and against other people as second persons. Gradually the child has developed so far in communication with the outside world that he comes to know the possibilities and restrictions of his own activities (body knowledge). Kugel defines body knowledge as the

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knowledge which man (the child) obtains by means of perception or can acquire by means of an imaginative or memory image of

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a) his body and the body’s position in space, as well as of its parts and their position in relation to the body or each other; b) his movements (those he actually makes or intends to make) with respect t o direction, extension and intensity.

Body knowledge increases during the course of our life: as the child becomes more aware of his own body, he learns to name its different parts, but at first this knowledge consists of no more than isolated facts. This is for instance to be seen in the drawings he makes. After the stage at which he only more or less scribbles on paper, he begins to express something: his attitude to the world as it seems to him. The human figure appears as a head with legs. This is precisely what he feels about human beings with the limited development of a %year old. At this stage, he has but a limited conception of his illness. If the parents tell him he is ill, he soon “knows” he must stay in bed and that he is being spoilt a bit too. He soon becomes conditioned to expect something too, especially if he is often ill without actually feeling very ill himself. A t the same time, he “reverberates” with the parents’ own fear or worry. In order to ensure as much basic security as possible, they must try to acquire a matter-of-fact attitude towards the illness. They must not allow themselves too many emotions, so: de-emotionalise! Extra care must of course be given to the child when his helplessness increases, but this must not degenerate into spoiling. In practice, however, we often see that parents unintentionally come to this out of sheer fear and inability to do otherwise. When they later come to see that this was wrong and (often on doctor’s advice) begin to make changes for the better, the child becomes frustrated. The medical practitioner is then often made use of as a “threat”.

The pre-school child and young school child During this period of life, marked sensory occupations (e. g. sand and water play) and motor activities remain very important. The child does, however, become somewhat more matter-of-fact and exactingly realistic. When he starts school, he must have reached the point that he can join in with the activities of children of his age and can keep to simple rules (social entree). Reality receives more emphasis. Respect for reality also influences his drawings, which now become increasingly realistic in a reproductive and expressive sense. During the early primary school years, however, the child still emphasises in his drawings things that have most emotional significance for him (e. g. in a drawing of a child picking a floper, the arm doing the picking is drawn extra large). The human figure appears in every detail, with head, body, arms, legs. The head also acquires a nose, mouth, ears, and hair in addition to eyes. Out of all the things a child “knows”, what is actually put on paper at a particular moment depends upon his feelings at the time. As he grows older, he begins to take over things from others. The “stereotype” drawings now make their appearance (e. g. the Father Christ-

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mas that was drawn on the blackboard). At this stage, the drawing does not, then, coincide with what is felt about things as it did earlier. The child draws in the first place what he knows. By six years of age he is more or less able to name and indicate all the parts of the body. During this period, the illness usually acquires an intermittent character, with sudden attacks of chest-tightness. This is often a difficult time for the parents because they follow the course of the illness with increasing anxiety and begin to discover that what first appeared to be incidental indispositions (colds) in fact appear to belong to one illness: asthma. This makes the parents unsure of themselves, they become disturbed, and similar reactions begin to make their appearance in the child. As a result, it is extra difficult to get a grip on the illness. The child is not yet really obedient, and frequently he is unable to regulate his actions in an ordered way. Often he is not yet really conscious of his illness and is simply restless when an attack is on the way. The emotional significance of what is happening is still most important for a child of this age. As in the case of his drawings during the earlier (non-stereotype) period, there is a difference between knowing a fact “externally” as a fact and knowing as a matter of experience. A great deal of what he “feels” about his illness is not yet integrated with what he “knows” about it. Camp experiences* (children of 7-9 years of age)

Although the youngest children in our summer camps for asthmatic children have already been attending school for a year by now, they need the care and protection of a healthy child of 5-6 years. When they are in the sandpit, they look like real pre-school children: sand and water play and similar sensory activities still have a great appeal for them. In team games the leader must still constantly remind them of the rules. When they play ball in the field, they all rush after the ball to try and get it. This makes them so excited that they continually forget which direction they have to throw it. They are unable to form real teams of their own accord, but they do begin to acquire some feeling of solidarity by sleeping together in the same tent (3 children). During gym, simple folk dancing, and swimming, one notices how poor their psycho-motor development is. They love to learn to swim, although it is at first often difficult to overcome the fear of water. Most of them have still had too little experience with it. Perhaps they behave rather more childishly at the camp than at school because camp life is less severely regulated than school life, and it is usually the first time they have been away from home alone. The youngest children sometimes sleep through nocturnal attacks of asthma. This sometimes made the camp leaders so nervous that a babyphone had to be installed between their tents and that of the camp mother. We also noticed that these children were sometimes awake during the attacks but did not call out for help, and neither did the other children in the tent. * See: Section on Selection. Methods of Examination and Treatment

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We had to teach them to do so. They were still apparently insufficiently distantiated from the illness. They are as still as mice while another child has an attack, and they take this very seriously. It is often the first time that they have seen it in someone else. We have often heard from parents that in the camp a child had “discovered illness for the first time and had only just realized that he had asthma. This often afforded the first motivation to learn to cope with the illness in a more realistic way. Before that, they only experienced it as being ill; now they also realised what it meant to haue an illness. We tried to teach the children that it is important to notice one’s own bodily sensations and take them into account. This is very difficult for them to do if there is insufficient understanding at home. It was, however, easy at least to teach them to get rid of certain harmful habits such as forced coughing up of mucus (which brought on an attack in some children by irritating the bronchial mucosa). We once had a child who brought on an attack by giggling. When he learned to laugh in a more normal way, the complaints were reduced by at least a half. It also appeared to be important to teach the children that when they went swimming in cold weather, they should dry themselves well and get dressed quickly. Thin children especially might become blue with cold otherwise and catch cold. The effect of all this cannot of course be expressed in figures, but nevertheless they seemed to be factors of importance.

The older primary school child (pre-adolescence, 9-12 years) The pre-adolescent is characterized by a need to extend his territory of exploration. The possibilities of bringing order and structure into his world have increased, as a result among other things of education (language development). He is now able to think about what is unknown and “far away”, he can imagine it and appreciate more or less what is possible. The alarming significance of what is unfamiliar is, as a result, reduced. The child now wishes to know more about the unfamiliar reality. He is becoming less dependent upon home, and feels ashamed if his mother treats him as a small child in the presence of others. He is becoming critical of what he does himself, as in drawing or play: it doesn’t seem “real”. He also wants to master technical matters, and contact with children of his own age plays an important role in this. Clubs are very much “the thing” during this age, for crafts, wpodwork, sport, scouting and music. They like doing games whereby they have to use their brains, like draughts, chess and Monopoly. Although children around 10 years of age begin to be able to judge the value and meaning of certain feelings and their expression, their emotional equilibrium is still somewhat precarious; habitual feelings leave their mark on the child, and violent incidental happenings can sometimes bring about a total change in the pattern of feelings. The child compares himself with others of his age and at the same time wishes to be accepted by the group. It is in this connection of pedagogical importance that he develops a good form of sportsmanship, and team games have an important role in this. Some children seek their security by overconforming to the group; others spring

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up in defense of their side to win at all costs and thereby overstep the limits of what is acceptable. It is difficult to teach them to be sportive towards themselves too. This is of especially great importance in the case of asthmatic children. Children from this group are often very dependent upon the opinion of their peers with regard to their physical appearance and achievements, such as sport, skills and powers of endurance. Boys particularly tend to tease each other with physical characteristics (e. g. freckles). As a result of being judged by others and comparing themselves with others, they now form an opinion about their own body (Body-opinion, Kugel, 19691, over the qualitative and quantitative limits of what they are able to do. At the same time they begin to feel something of the role their physical appearance plays in social interaction (in social acceptance). It is, of course, particularly frustrating to suffer from asthma at this age, especially for children who do not receive adequate support from their families. So long as they are still existentially attached to their parents, they often continue to regard them as being responsible for their illness. Although they often appear to behave so “independently”, they are in fact very dependent upon their parents, above all with regard to their illness. They cannot usually even take the responsibility for taking their medicine yet. When they are ill, they become jealous of other children who are allowed to play outside, and feel badly treated. “Why can’t I?’ They try to hide their illness from their age-mates and are ashamed of wheezing or being short of breath. At this stage asthma plays a large role in the social contacts. Understandably, for as we have seen, the social role is during this age very dependent upon physical achievements. The children now begin to realise the repercussions being ill has upon social contacts and upon taking part in such group activities. The fear of attacks (danger of suffocating) can be latently or more consciously preeent. The age group 9-12 years in our summer camps

The social dependence of children of this age upon their physical achievements was also noticeable in the camps. When in 1974, due to circumstances, a relatively strong sporty boy arrived halfway through the camp, he brought about a total change. All the other boys tried to curry favour with him and wore themselves out trying to equal his achievements in sport and games. They didn’t even notice how unsure of himself the boy in question was in other activities (drawing, creativity in some other area) which at this age are apparently not so highly rated.. As a result, several children became exhausted and short of breath and later withdrew from activities so as not to be confronted with their own failures when sport was on the program. We had another experience with this age group too: in our summer camp the children received an invitation to go to a bicycle race. They were very enthusiastic, but due to unforeseen circumstances, they became overtired. The camp leaders realised this too late, and to save the situation and save the walk back, they decided to fetch them back by car. The children were tired but enthusiastic. When free tickets were again made available later

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for another race, most of them, to our surprise, didn’t want to go. They preferred to go to a playground with the younger children. This is what we often see: when too much is asked of the children, or they ask too much of themselves, they react by regressing to a stage below their actual possibilities. Their confidence in their body (or self-confidence) receives a blow. Encouragement and tolerance are necessary to help the children regain their initiative for exploration within their own limits. Nine-to-twelve-year olds who have never taken part in a camp before are placed in the same primitive situation as the youngest children, as far as discovery of their illness is concerned. Some of them don’t know what being short of breath is and call it, for instance, “tiredness”. Others who do know often have not emotionally come to terms with it and begin to panic when they have an attack, thereby making things worse. The calming presence of adults is frequently of great help. The cause must be sought in the parents, who themselves have difficulty in sufficiently distantiating themselves to provide a quiet atmosphere during an attack, to give medicines in time, and take other adequate measures where necessary. This is not always the parents’ own fault. They, like the child, often receive too little information and advice from the medical practitioner treating them. After the camp they usually appear to be very able and willing to correct themselves if sufficient time is devoted to advising them. The child himself is at this age also old enough to take a certain responsibility for his illness, but the adults must still be available to back him up. Adolescence We have had relatively little experience in examining and counselling of young people of this age. As already mentioned, most children begin to improve in health towards adolescence. Where this is not the case, we have to do with very severe physical suffering, imperfect medical treatment, or simply family circumstances (the upbringing). When the pedagogical counselling is good, the child will at this stage learn to accept his illness if it has not already been cured (Fig. 5). Acceptance of the illness is not, however, an isolated occurrence. The process of de-identification with the parents, already started earlier, continues. In loneliness itself, an adolescent feels his uniqueness (something new is beginning with him). He is becoming conscious of his identity, for which he takes responsibility. He discovers that furtherance of his own personal inner development constitutes a task canfronting him and that the outside world represents a challenge to be coped with. The world is thus, as it were, “doubled”. At the same time, he discovers that others in their way are confronted with similar experiences and problems. As a result, new possibilities for friendships and other contacts come into being, also with the opposite sex. All this is connected with the hormonal changes taking place at this age. The conditions necessary for a more adult attitude towards the body gradually make their appearance. The asthma patient can experience his body as an unavoidable situation

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earlier in life. During adolescence things no longer just happen to the patient, for he is also conscious that he is at the same time the one who has to share responsibility for what happens to him and to take measures to get his illness under control and keep it there.

Pedagogical Epilogue In order to help both their child and themselves, parents have to learn to appreciate how a variety of factors in everyday life can influence their child’s illness. If the medical practitioner cannot make that clear to them, the (medical) pedagogue or similar counsellor must be called in. It then usually appears that the parents had really suspected the connection. As a rule they then feel relieved when they realize that there’s no question of fault and that under these circumstances it is perfectly normal to accept help in order to obtain sufficient insight into the illness, the medical treatment and the education of an asthmatic child. This insight is an absolute prerequisite for ability to take full responsibility for the asthmatic child’s upbringing, since, as we pointed out earlier, his basic security is threatened by his experiences. The sickly child will also have to come to terms with the illness as a specific existential problem. This is a very unchildlike task, for it involves learning to accept the inevitability of being overwhelmed by physical symptoms at unpredictable moments, without excessive emotions. In order to do this, he must learn to perceive and evaluate the bodily sensations realistically. His feelings about the illness then become adequately adapted to reality. Only then can he learn which measures must be taken to avoid worsening the illness and to shorten attacks. The primary responsibility for this lies with the parents. They must first learn (with the help of the medical practitioner) to assess the situation themselves and subsequently to pass on their knowledge to their child. Parents and other adults (teachers, doctors) who come into contact with him must come to realize that the sick child needs a different pedagogical approach from one who is healthy. The demands which can be made of such a child must be much more carefully adapted to his physical condition. We must be very aware that it is not simply a question of whether he is short of breath or not, for a patient who is not can still be ill (e. g. too easily fatigued: invisible handicap). The child will receive his optimal chances of development when the limits within which the risk of illness makes its appearance are carefully tested, and when at the same time care is taken that he doesn’t function below his own physical capacities. References AXLINE,V. M. Dibs in Search of Self, Houghton Mifflin Co., Boston, 1964. 0. F. Neue Geborgenheit (New Basic Security), Kohlhammer Verlag, Stuttgart, BOLLNOW, 2nd Edition, 1960. BUYTENDIJK, F. J. J. Prolegomena van een antropologische fysiologie (Prologue for ‘Anthropological Physiology), Het Spectrum, Utrecht, 1965. GROEN,J. J. Present status of the psychosomatic approach to bronchial asthma. In: Modern Trends in Psychosomatic Medicine, 111. Ed., Ed. Oscar Hill, London, 1976.

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KUGEL,J. Lichaamsplan, lichaamsbesef, lichaamsidee- de psychologische betekenis van de lichamelijke ontwikkeling (Body plan, body knowledge, body image- the psychological significance of physical development) (English summary), Thesis, Groningen 1967. LANGEVELD, M. J. Die “Projektion” im kindlichen Seelenleben. (Projection in the mental life of children), Studien zur Anthropologie des Kindes, chapter 8, Tubingen, 1968. --. The Columbus: Picture Analysis of Growth towards Maturity, Karger, Basel, 1969. -. Der Mensch und die Bilder (Man and His Image) (1964), in: Erziehungskunde und Wirklichkeit, Westermann-Verlag, Braunsweig, 1971. LUBBERS, R. Voortgang en nieuw begin in de opvoeding. Beeldend verhalen als hulpmiddel bij opvoedingsmoeilijkheden. (Progress and a new s t a r t story-telling in pictures as a n aid in pedagogical problems) (English summary). Thesis, Assen, 1966. PLUGGE,H.: Uber die Hoffnung (Over hope). In: Situation, Spectrum, Utrecht, 1954. --. Wohlbefinden und Missbefinden (Well-being and Its Absence), Tiibingen, 1962. PURCELL, K. Critical appraisal of psychosomatic studies of asthma, S t . J . Med. 65t2103, 1965. STAABS, G. von. Der Sceno-Test, S. Heizel-Verlag, 2nd ed., Zurich, 1951. VERMEER, E. A. A. Spel en spelpedagogische problemen (Play and pedagogical problems in play therapy) (French summary). Thesis, Utrecht, 1955. VOORHORST, R. Astma, bronchitis en atlergie (Asthma, bronchitis and allergy), Wetensch, Uitgeverij, Amsterdam, 1975. VOORHORST-SMEENK, F. Pedagogische problemen bij kinderen met astma (Asthmatic children and their pedagogical problems) (English summary), Mschr. Kindergen. 31t261, 1963. --. The asthmatic child and its educators, Paed. Europeae p. 128, 1967. -. Problems of basic security in asthmatic children, Acta Allerg. (Kbh) 25:294-322, 1970. __ , A N D VOORHORST, R. Het Astmakind (The Asthmatic Child), Wetensch. Uitgeverij, Amsterdam, 1973. -. Guidance of juvenile asthma patients, Allergol. et Immunopathol. 4t351-360, 1976. ZEIJDE,N. F. van der. Opvoedingsnood in pedagogische spelbehandeling (Childhood distress in pedagogic play therapy) (English summary). Thesis, Utrecht, 1962.

How do children feel about having asthma?

The Journal of Asthma Research. Vol. 14, No. 4, July, 1977 How Do Children Feel about Having Asthma?*+ J Asthma Downloaded from informahealthcare.co...
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