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The chronically ill, handicapped, dying child and his family: Need for total care and support
The Chronically Ill, Handicapped, Dying Child and His Family: Need for Total Care and Support Ingrid Gamstorp, MD
It is stressed that the best possible medical care is the basic need and an absolute pre-requisite for the total care of a family with a chronicall ill, handicapped or dying child. However, this is not enough. The family will need something more than just strict medical care. This paper is concerned with this "something more," stressing the family's need for measures helping them to work with the crisis reaction, elicited by the information they have received about the child's diagnosis and prognosis. The methods of bringing the family help is discussed in relation to the timeschedule of the disorder. The importance of how the first information is given is particularly stressed. Gamstorp I. The chronically ill, handicapped, dying child and his family: need for total care and support. Brain Dev 1980;2:127-32
The basic need of the chronically ill, handicapped or dying child and his family is always the best possible medical care. This need must be met by the physician who represents the strict medical knowledge of the disease and its treatment in the team around the child. I want to start by stressing this point, as all the rest of my paper will be concerned with other aspects of the care of the handicapped child. The physician's first responsibility is always to deliver the best possible medical care, but the family of a handicapped child needs something more than this. This paper is concerned not with "best possible medical care" but with "some-
From the Department of Pediatrics, University Hospital, Uppsala. Received for pUblication: November 16, 1979.
Key words: Chronically ill children, handicapped children, dying children, support to the whole family, non·medical help to families with a sick child. Correspondence address: Dr. Ingrid Gamstorp, Department of Pediatrics, University Hospital, Uppsala, Sweden.
thing more." One can distinguish eight different timestages of the process, at which the parents may need different measures of support.. They are summarized in Table 1. O. At stage 0 the parents are worriedly watching their child, uncertain if they are imaging things, or if there is really something wrong with their child. Stage 1 is reached when they acknowledge their need of medical help and seek medical care. If a handicap is diagnosed already in a newborn infant, stage 0, stage 1 and partly stage 2 will disappear. The psychological situation then is different, as the parents do not yet know their child, and they are forced to face problem they have had no chance to discover themselves. The parents' ability to comprehend information is also impaired by the fatigue they must feel shortly after delivery, and their need for human support is great. Information given in this situation must be short, concrete, not too far-reaching, and given at daily contact during the infant's and the parents' stay in the
Table 1 Time-stages in the family having a chronically ill, handicapped or dying child
Stage 0: Parents are watching the child, uncertain if something is wrong Stage 1: First contact with medical professionals about child's problem Stage 2: The period of medical examinations Stage 3:
First information about child's disease
Stage 4:
Second meeting, 2-4 weeks after the first for repeat information
Stage 5:
Long-term follow-up
Stage 6:
Final stage, no return to useful life possible
Stage 7:
After death of child
hospital. Also in stage 2 the mother may not be fit enough after delivery to take the complete responsibility for her sick infant's care, nor to bring him to various examinations. In other aspects, however, the same reactions can be expected and the same measures taken, when a chronic handicap is diagnosed in the newborn as when it is diagnosed later in life. 1. First contact. The attitude towards the parents of every person they meet, must be to listen to them and to take their complaints seriously. They are worried and they may have difficulties to verbalize their worries. The receptionist, the nurse, the physician, every person they meet, must listen actively to them. Parents' observation of their child is always correct, their interpretation of their observation may be correct. The skill of the physician is by active listening make the parents to tell about every real observation they have made. The attitude must be: "We believe you and trust you. Everything you can tell us about your child will increase our ability to help him." It is also easier for the physician to find signs, if he has carefully listened to the description of symptoms. The interpretation of the parents' observation must, however, be the responsibility of the physician. We know the limits of normal biological variation and the healthy infant's behavior. E.g. the jerky movements of an infant's arms, by the mother interpreted as fits, may be demonstrated by the physician to be a normal Moro reflex. 2. This is a difficult period for the parents. Their suspicion of something wrong with the child has been confirmed by a physician, and the child is in a hospital for examinations which 128 Brain & Development, Vol 2, No 2, 1980
might be unpleasant. In my country we try always to have one parent staying with the child. This person is pulled out of normal surroundings and may not have enough to do. A combination of serious worries and lack of activity is bad. The medical team, particularly the nurses in the ward, may help the parents by letting them take the responsibility for the child's care and make them follow the child and support him at the examinations performed. Other ways may also be used to occupy the parents' hands and thOUghts. Perhaps the child will need physical therapy, regardless of his final diagnosis, then start to teach the parents about the exercises they can do. Perhaps some kind of play therapy is needed, then show the parents suitable toys. Perhaps the family is entitled to economical support and practical help, then start to write applications for this. The best help to the parents is to keep their hands and thoughts occupied with practical things related to their child. Drop-like information should be avoided. Every examination is one piece in a jig-saw puzzle, and all the pieces are needed before the pattern is visible. SpeCUlations about what a planned examination may reveal and information about results yet uninterpretable in understandable terms are waste of valuable time and energy. However, such waste can be avoided only if all parents and all nurses in the ward know that as soon as all information is available, the parents will receive it. Such knowledge is an absolute pre-requisite for the parents to wait. If they don't feel safe that they will receive information, they will insist on having immediately the result of every isolated examination and in this way waste time and energy both for themselves and for the doctor. Parents may become aggressive during the period of medical examinations. They are worried and they rebel against fate which they feel has hit their child. This rebellion may express itself as aggressiveness against the nurses around the child, rarely against the physician. Everybody around the child must know that the aggressiveness is not really directed against him but against fate. This knowledge is necessary and must be stressed repeatedly by the senior physician, as otherwise nurses and young doctors may feel inadequate and depressed and thus become unable to give the family the understanding and support it needs.
3. The crucial point in the contact between family and medical team is the way the first information about the child's disease is given. It is impossible to give this information without hurting the parents and elicit an crisis reaction. Parents are different and so are doctors, therefore, each couple must be treated with due respect for their individual reactions. Still some directions can be given how to arrange the situation and how to give the parents the best support. The information must be given in a quiet room with parents and doctor sitting down, not standing in a corridor and definitely not across the child's bed . The informing doctor must be experienced, a senior doctor responsible for the child's care. He must have such a status that he can put a red signal on his door and disconnect his telephone; the conversation must be allowed to continue uninterrupted and enough time must be available. Both parents must be present, not the childo. The child is also entitled to information but in a slightly different way and adjusted to his age and maturity. No restraint must be placed on the parents' feelings; they must be permitted to express their feelings of hopelessness, depression, rage against fate etc, and the person putting most restraint on such expressions is the sick child; the doctor must show that he expects no such restraints. Whenever possible it is a great advantage, if a social worker can be present at this first information. She controls that the physician uses understandable language. She is not in a crisis reaction and can thus take in the information given. During later discussions with the parents she may correct details the parents may have misunderstood . As the parents have not received drop-like information during the period of examination, they are now taken through the diagnostic procedure , informed about every examination, its result and the interpretation of all fmdings, leading to a diagnosis. They are informed about what this diagnosis means from a prognostic point of view, i.e. what they can expect in the future for their child. This information must always be honest, objective, founded on facts and with no patronizing shade in the doctor's attitude. Within the frame of truth , one should, however, always keep as far as possible to the optimistic side and repeat whatever optimistic angle there may be in the disorder, e.g. "at least the disease causes no pain," "research goes on
within this field,perhaps a solution will come." As this paper is dealing only with chronic, handicapping disorders no therapy is available. However, although nothing can be done to cure the disease, something can a/ways be done to help the sick child. The symptomatic treatment, which is always available at least to some extent, is given in collaboration between parents and medical team , e.g. physical therapy for children with motor difficulties. Each member of the medical team is an expert on her part of therapy, the parents are experts on their own child, the best results are obtained by close collaboration between all these persons. It is important to spend time on the information about this symptomatic treatment, partly to give parents real knowledge about it, partly because this is a signal to the parents saying: "It is worth-while to work with this child and we will do it together." Genetical problems should also be touched upon, particularly in situations when the disease is not inherited. In my experience the non-inheritance may be so obvious to the physician that it never occurs to him to take it up for discussion . The parents, on the other hand, are so worried about inheritance and do not dare to ask. In this way they are left with an unnecessary fear which may prevent them from having a healthy child. However, it is also my experience that the parents do not understand nor remember complicated laws of inheritance discussed at the first meeting, they must be discussed again next time. Society gives some support to families with a handicapped child. The child may have the right to economical support, to a place in a day care center, to free transportation etc . At the first information the parents are usually not very interested in these economical aspects, as they are too overwhelmed by the bad news they have got about their child. But very soon it becomes obvious that everyday life must function, and practical support, how imperfect it may be, becomes important. The social worker is the expert on these problems. It is a great advantage when she is-introduced by the physician to the parents rather than they are sent away to her , giving the impression that these problems are below the physician's interest and level. The existence of parents' organizations should also be mentioned. It is my experience Gamstorp: Sick child and his family
129
that parents are not interested in an immediate contact, they need to sort out their problems between themselves first. But they so often feel alone in the world with their problems and the knowledge that other parents in the same situation exist may be a comfort. Eventually they become interested in a contact, and it is easier for them to get it, when they know about the existence of an organization. Parents' organizations are of help in many ways: in my view the most important is the shared feelings around the sick child. E.g. I may know a lot about muscle diseases in childhood, but I don't know how it feels to hear: "Your own child has a muscle disease ." This knowledge is available in parents' organizations. At this first information the physician must have the main initiative. Otherwise the parents will throw a lot of unsorted questions over him without stopping to listen to the answers. But there must always also be ample time for the parents' questions (information is 2-way-communication) and also for some quiet periods, when the parents dare to formulate their most difficult questions. Parents must feel accepted, safe and free to show their emotions. The objective and honest information must always be given also with empathy, understanding and human warmth. In most situations, when the distance is not too great between the physician and the child's home, the end of first information is to settle a day and time for a second meeting, roughly 2-4 weeks after the first one. 4. The outer circumstances should be the same as at the first meeting: both parents present, not the child, quiet surroundings without interruption, ample time . At this time the parents have had time to discuss between themselves and with friends and relatives what was really said at the first meeting. They have found out what they missed at the first meeting or heard differently. They have now clear questions, preferably written down, and they have the main initiative . All the information given at the first meeting is again passed through. Every point is discussed until the parents are satisfied that they have understood what has been said. At this time it is also important to take up for discussion , how the sick child reacts to the situation, how his sibs feel, and if any of them may need information directly from the physician and not only through the parents. 130 Brain & Development, Vol 2, No 2, 1980
In my experience two such sessions are well used time. The contact and the co-operation between family and medical team is then usually smooth and effective, which means a tremendous save of time later. However, information twice is seldom enough, one must always come back to unclear points at later discussions. Parts of the information must be repeated several times. It is important that the parents feel that they are allowed to ask about the same thing several times, until they feel satisfied. 5. During the time of long-term follow-up it is as a rule important that the same medical team follows the patient and his family. Rarely, one or several members of a medical team may not suite a given patient; if so, the patient must be allowed to say so, and an exchange, without bad feelings,must be possible. With the present organization of medical care in my country it is, however, a greater problem to prevent that the family meets a new doctor at every visit. When the patient and his family come back for a check-up, there must be time also for discussion about, how things work out in everyday life, what the parents, the sibs and particularly the patient feel about the situation. Children with a fatal disease are usually aware of this fact from age 8-10. In my experience they are reluctant to discuss their thoughts and anxiety around death with their parents, because: "One must take good care of one's mother and show her consideration." The child may instead choose one of the medical team to take into his confidence. It is important that the members of the medical team can support each other in such a way so every member can carry such confidence and really allow the sick child to discuss his emotions. To us adults, particularly when we belong to a medical profession, it is so against Nature that a child or teenager has a fatal disease, which we cannot cure, so the child's questions arise our own agony. Ifso, we tend to pat the child on the shoulder, saying: "Honey, don't worry and don't brood over these problems, everything will be O.K." To the child this is an obvious lie, and he feels that the adult deceives him, leaving him alone with hjs agony. One therefore must have the courage to listen to the child , to meet his eyes and to talk with him also about the most difficult problems. If we cannot save his life, at least we must make it easier for him to die! Team members need support from each other to manage
this difficult task. 6. When it is obvious that the final stage has been reached, that there is no return to a useful life, one must have the courage to stop active medical treatment, particularly when it is painful or unpleasant. All efforts must then be turned to give maximal relief of discomfort, pain and agony. Whether the child dies at home or in a hospital the situation around the child must be arranged so that the family can be close together in quietness and peace. 7. After death of the child at least one, often more personal contact must be arranged between family and medical team, particularly social worker and physician. The parents must receive objective information about the child's final disease, findings at autopsy, the actual cause of death. The family must have an opportunity to discuss their experience during the child's disease and their feelings. The initiative to such contact may have to. come from the medical term, as the family may not dare to ask for it, feeling that they and their child are now a finished chapter for the medical team. There are situations when a long distance prevents personal contact; it may then be replaced by letters but not by telephone. A letter gives much less risk for misunderstanding, it can be read several times and read by both parents, whereas a telephone contact is carried on by one parent only. What can be done to improve the daily life for a handicapped child? 1. Physical therapy is important for all children with motor difficulties. This includes also mentally retarded children, as their motor development is always delayed corresponding to their general retardation, occasionally more. Also children with progressive disorders like muscular dystrophy benefit from physical therapy, as it keeps the child fit a little longer. In many situations physical therapy is combined with technical aids, giving the child a maximal ability to move around. Most physical therapy to young children is performed by the parents after instructions from the therapist. As a rule, young children function better together with their parents than with an unknown person, the tnerapist's time is saved and the parents feel that they are doing something themselves for their child. However, they must never get the impression that they are alone responsible for the therapy, they must have a
regular contact with the therapist, who may give them a new training program, correct possible errors etc. Exaggerations must also be avoided, life must never become just physical therapy. Prevention of obesity is important for a child with a motor handicap. Obesity is difficult to correct, once it has occurred, therefore one must talk about it before there are any signs of it. The same applies to overprotection. It is a natural human instinct to protect a sick child, to carry him on one's arms and never let him do something himself nor feel the disappointment of failure; but then he will never feel the joy of success either. Early in the contact with the family one must therefore draw the parents' attention to the risk of overprotection and advice' them how to avoid it. 2. It is practically always possible for at least a young handicapped child to live at home and go out of home for his treatment and contact with his peers. During preschool years we try to integrate children with all kinds of handicap in day centers for healthy children, as such contact is good for both parts. At school the mentally retarded children are taught in their own classes, which are smaller and work slowlier; the whole class is then integrated in an ordinary school, so that all children are mixed during recesses and at lunch. However, some kind of institutionalized care must also be available, as a rule for short-time care. It may give the whole family a great help, if a motor handicapped child is admitted to an institution e.g. for a month each year. He can get intense physical therapy and try new technical aids, whereas the family is relieved of the responsibility. When the main purpose is to relieve the family the child may be admitted to an institution e.g. for one week-end every month and for 3 weeks during summer vacation. For such short-term care one may also use· a private home and not an institution. For older teenagers an institution or a boarding-school where they can stay for one school-term or one school-year may be an advantage, as they may in this age feel the heavy strain of competing continuously with healthy peers. They may 'also need a chance to come away from their parents. Used in this flexible way institutions are of great help to the child and his family, whereas they have a bad effect, if the young child is admitted to an institution and remains there with little contact Gamstorp: Sick child and his family
131
with his family. 3. The handicapped child needs also a chance to develop a hobby together with handicapped or non-handicapped of all ages. Stamp collection and photography e.g. can be performed from age 6 to 96, regardless if a wheelchair is needed. Most handicapped children can practise some kind of sport, this should be encouraged. 4. The child's and the whole family's life should be normalized as far as possible. The child's disease must e.g. not prevent the mother from working outside the home. If the parents'
132 Brain & Development, Vol 2, No 2, 1980
outside activities are influenced, it should affect both parents. Economical support, help to arrange the home for a handicapped family member, help with transportation are measures which are available and should be used as far as possible to normalize the family's situation. S. One of my Duchenne boys, now dead, once created a slogan which one must try to help families with sick and handicapped children to believe in: "THE VALUE OF LIFE IS NOT MEASURED BY ITS LENGTH BUT BY THE CONTENT THAT FILLS IT."
It is stressed that the best possible medical care is the basic need and an absolute pre-requisite for the total care of a family with a chronicall ill, handicapped or dying child. However, this is not enough. The family will need something more than just strict medical care. This paper is concerned with this "something more," stressing the family's need for measures helping them to work with the crisis reaction, elicited by the information they have received about the child's diagnosis and prognosis. The methods of bringing the family help is discussed in relation to the timeschedule of the disorder. The importance of how the first information is given is particularly stressed. Gamstorp I. The chronically ill, handicapped, dying child and his family: need for total care and support. Brain Dev 1980;2:127-32
The basic need of the chronically ill, handicapped or dying child and his family is always the best possible medical care. This need must be met by the physician who represents the strict medical knowledge of the disease and its treatment in the team around the child. I want to start by stressing this point, as all the rest of my paper will be concerned with other aspects of the care of the handicapped child. The physician's first responsibility is always to deliver the best possible medical care, but the family of a handicapped child needs something more than this. This paper is concerned not with "best possible medical care" but with "some-
From the Department of Pediatrics, University Hospital, Uppsala. Received for pUblication: November 16, 1979.
Key words: Chronically ill children, handicapped children, dying children, support to the whole family, non·medical help to families with a sick child. Correspondence address: Dr. Ingrid Gamstorp, Department of Pediatrics, University Hospital, Uppsala, Sweden.
thing more." One can distinguish eight different timestages of the process, at which the parents may need different measures of support.. They are summarized in Table 1. O. At stage 0 the parents are worriedly watching their child, uncertain if they are imaging things, or if there is really something wrong with their child. Stage 1 is reached when they acknowledge their need of medical help and seek medical care. If a handicap is diagnosed already in a newborn infant, stage 0, stage 1 and partly stage 2 will disappear. The psychological situation then is different, as the parents do not yet know their child, and they are forced to face problem they have had no chance to discover themselves. The parents' ability to comprehend information is also impaired by the fatigue they must feel shortly after delivery, and their need for human support is great. Information given in this situation must be short, concrete, not too far-reaching, and given at daily contact during the infant's and the parents' stay in the
Table 1 Time-stages in the family having a chronically ill, handicapped or dying child
Stage 0: Parents are watching the child, uncertain if something is wrong Stage 1: First contact with medical professionals about child's problem Stage 2: The period of medical examinations Stage 3:
First information about child's disease
Stage 4:
Second meeting, 2-4 weeks after the first for repeat information
Stage 5:
Long-term follow-up
Stage 6:
Final stage, no return to useful life possible
Stage 7:
After death of child
hospital. Also in stage 2 the mother may not be fit enough after delivery to take the complete responsibility for her sick infant's care, nor to bring him to various examinations. In other aspects, however, the same reactions can be expected and the same measures taken, when a chronic handicap is diagnosed in the newborn as when it is diagnosed later in life. 1. First contact. The attitude towards the parents of every person they meet, must be to listen to them and to take their complaints seriously. They are worried and they may have difficulties to verbalize their worries. The receptionist, the nurse, the physician, every person they meet, must listen actively to them. Parents' observation of their child is always correct, their interpretation of their observation may be correct. The skill of the physician is by active listening make the parents to tell about every real observation they have made. The attitude must be: "We believe you and trust you. Everything you can tell us about your child will increase our ability to help him." It is also easier for the physician to find signs, if he has carefully listened to the description of symptoms. The interpretation of the parents' observation must, however, be the responsibility of the physician. We know the limits of normal biological variation and the healthy infant's behavior. E.g. the jerky movements of an infant's arms, by the mother interpreted as fits, may be demonstrated by the physician to be a normal Moro reflex. 2. This is a difficult period for the parents. Their suspicion of something wrong with the child has been confirmed by a physician, and the child is in a hospital for examinations which 128 Brain & Development, Vol 2, No 2, 1980
might be unpleasant. In my country we try always to have one parent staying with the child. This person is pulled out of normal surroundings and may not have enough to do. A combination of serious worries and lack of activity is bad. The medical team, particularly the nurses in the ward, may help the parents by letting them take the responsibility for the child's care and make them follow the child and support him at the examinations performed. Other ways may also be used to occupy the parents' hands and thOUghts. Perhaps the child will need physical therapy, regardless of his final diagnosis, then start to teach the parents about the exercises they can do. Perhaps some kind of play therapy is needed, then show the parents suitable toys. Perhaps the family is entitled to economical support and practical help, then start to write applications for this. The best help to the parents is to keep their hands and thoughts occupied with practical things related to their child. Drop-like information should be avoided. Every examination is one piece in a jig-saw puzzle, and all the pieces are needed before the pattern is visible. SpeCUlations about what a planned examination may reveal and information about results yet uninterpretable in understandable terms are waste of valuable time and energy. However, such waste can be avoided only if all parents and all nurses in the ward know that as soon as all information is available, the parents will receive it. Such knowledge is an absolute pre-requisite for the parents to wait. If they don't feel safe that they will receive information, they will insist on having immediately the result of every isolated examination and in this way waste time and energy both for themselves and for the doctor. Parents may become aggressive during the period of medical examinations. They are worried and they rebel against fate which they feel has hit their child. This rebellion may express itself as aggressiveness against the nurses around the child, rarely against the physician. Everybody around the child must know that the aggressiveness is not really directed against him but against fate. This knowledge is necessary and must be stressed repeatedly by the senior physician, as otherwise nurses and young doctors may feel inadequate and depressed and thus become unable to give the family the understanding and support it needs.
3. The crucial point in the contact between family and medical team is the way the first information about the child's disease is given. It is impossible to give this information without hurting the parents and elicit an crisis reaction. Parents are different and so are doctors, therefore, each couple must be treated with due respect for their individual reactions. Still some directions can be given how to arrange the situation and how to give the parents the best support. The information must be given in a quiet room with parents and doctor sitting down, not standing in a corridor and definitely not across the child's bed . The informing doctor must be experienced, a senior doctor responsible for the child's care. He must have such a status that he can put a red signal on his door and disconnect his telephone; the conversation must be allowed to continue uninterrupted and enough time must be available. Both parents must be present, not the childo. The child is also entitled to information but in a slightly different way and adjusted to his age and maturity. No restraint must be placed on the parents' feelings; they must be permitted to express their feelings of hopelessness, depression, rage against fate etc, and the person putting most restraint on such expressions is the sick child; the doctor must show that he expects no such restraints. Whenever possible it is a great advantage, if a social worker can be present at this first information. She controls that the physician uses understandable language. She is not in a crisis reaction and can thus take in the information given. During later discussions with the parents she may correct details the parents may have misunderstood . As the parents have not received drop-like information during the period of examination, they are now taken through the diagnostic procedure , informed about every examination, its result and the interpretation of all fmdings, leading to a diagnosis. They are informed about what this diagnosis means from a prognostic point of view, i.e. what they can expect in the future for their child. This information must always be honest, objective, founded on facts and with no patronizing shade in the doctor's attitude. Within the frame of truth , one should, however, always keep as far as possible to the optimistic side and repeat whatever optimistic angle there may be in the disorder, e.g. "at least the disease causes no pain," "research goes on
within this field,perhaps a solution will come." As this paper is dealing only with chronic, handicapping disorders no therapy is available. However, although nothing can be done to cure the disease, something can a/ways be done to help the sick child. The symptomatic treatment, which is always available at least to some extent, is given in collaboration between parents and medical team , e.g. physical therapy for children with motor difficulties. Each member of the medical team is an expert on her part of therapy, the parents are experts on their own child, the best results are obtained by close collaboration between all these persons. It is important to spend time on the information about this symptomatic treatment, partly to give parents real knowledge about it, partly because this is a signal to the parents saying: "It is worth-while to work with this child and we will do it together." Genetical problems should also be touched upon, particularly in situations when the disease is not inherited. In my experience the non-inheritance may be so obvious to the physician that it never occurs to him to take it up for discussion . The parents, on the other hand, are so worried about inheritance and do not dare to ask. In this way they are left with an unnecessary fear which may prevent them from having a healthy child. However, it is also my experience that the parents do not understand nor remember complicated laws of inheritance discussed at the first meeting, they must be discussed again next time. Society gives some support to families with a handicapped child. The child may have the right to economical support, to a place in a day care center, to free transportation etc . At the first information the parents are usually not very interested in these economical aspects, as they are too overwhelmed by the bad news they have got about their child. But very soon it becomes obvious that everyday life must function, and practical support, how imperfect it may be, becomes important. The social worker is the expert on these problems. It is a great advantage when she is-introduced by the physician to the parents rather than they are sent away to her , giving the impression that these problems are below the physician's interest and level. The existence of parents' organizations should also be mentioned. It is my experience Gamstorp: Sick child and his family
129
that parents are not interested in an immediate contact, they need to sort out their problems between themselves first. But they so often feel alone in the world with their problems and the knowledge that other parents in the same situation exist may be a comfort. Eventually they become interested in a contact, and it is easier for them to get it, when they know about the existence of an organization. Parents' organizations are of help in many ways: in my view the most important is the shared feelings around the sick child. E.g. I may know a lot about muscle diseases in childhood, but I don't know how it feels to hear: "Your own child has a muscle disease ." This knowledge is available in parents' organizations. At this first information the physician must have the main initiative. Otherwise the parents will throw a lot of unsorted questions over him without stopping to listen to the answers. But there must always also be ample time for the parents' questions (information is 2-way-communication) and also for some quiet periods, when the parents dare to formulate their most difficult questions. Parents must feel accepted, safe and free to show their emotions. The objective and honest information must always be given also with empathy, understanding and human warmth. In most situations, when the distance is not too great between the physician and the child's home, the end of first information is to settle a day and time for a second meeting, roughly 2-4 weeks after the first one. 4. The outer circumstances should be the same as at the first meeting: both parents present, not the child, quiet surroundings without interruption, ample time . At this time the parents have had time to discuss between themselves and with friends and relatives what was really said at the first meeting. They have found out what they missed at the first meeting or heard differently. They have now clear questions, preferably written down, and they have the main initiative . All the information given at the first meeting is again passed through. Every point is discussed until the parents are satisfied that they have understood what has been said. At this time it is also important to take up for discussion , how the sick child reacts to the situation, how his sibs feel, and if any of them may need information directly from the physician and not only through the parents. 130 Brain & Development, Vol 2, No 2, 1980
In my experience two such sessions are well used time. The contact and the co-operation between family and medical team is then usually smooth and effective, which means a tremendous save of time later. However, information twice is seldom enough, one must always come back to unclear points at later discussions. Parts of the information must be repeated several times. It is important that the parents feel that they are allowed to ask about the same thing several times, until they feel satisfied. 5. During the time of long-term follow-up it is as a rule important that the same medical team follows the patient and his family. Rarely, one or several members of a medical team may not suite a given patient; if so, the patient must be allowed to say so, and an exchange, without bad feelings,must be possible. With the present organization of medical care in my country it is, however, a greater problem to prevent that the family meets a new doctor at every visit. When the patient and his family come back for a check-up, there must be time also for discussion about, how things work out in everyday life, what the parents, the sibs and particularly the patient feel about the situation. Children with a fatal disease are usually aware of this fact from age 8-10. In my experience they are reluctant to discuss their thoughts and anxiety around death with their parents, because: "One must take good care of one's mother and show her consideration." The child may instead choose one of the medical team to take into his confidence. It is important that the members of the medical team can support each other in such a way so every member can carry such confidence and really allow the sick child to discuss his emotions. To us adults, particularly when we belong to a medical profession, it is so against Nature that a child or teenager has a fatal disease, which we cannot cure, so the child's questions arise our own agony. Ifso, we tend to pat the child on the shoulder, saying: "Honey, don't worry and don't brood over these problems, everything will be O.K." To the child this is an obvious lie, and he feels that the adult deceives him, leaving him alone with hjs agony. One therefore must have the courage to listen to the child , to meet his eyes and to talk with him also about the most difficult problems. If we cannot save his life, at least we must make it easier for him to die! Team members need support from each other to manage
this difficult task. 6. When it is obvious that the final stage has been reached, that there is no return to a useful life, one must have the courage to stop active medical treatment, particularly when it is painful or unpleasant. All efforts must then be turned to give maximal relief of discomfort, pain and agony. Whether the child dies at home or in a hospital the situation around the child must be arranged so that the family can be close together in quietness and peace. 7. After death of the child at least one, often more personal contact must be arranged between family and medical team, particularly social worker and physician. The parents must receive objective information about the child's final disease, findings at autopsy, the actual cause of death. The family must have an opportunity to discuss their experience during the child's disease and their feelings. The initiative to such contact may have to. come from the medical term, as the family may not dare to ask for it, feeling that they and their child are now a finished chapter for the medical team. There are situations when a long distance prevents personal contact; it may then be replaced by letters but not by telephone. A letter gives much less risk for misunderstanding, it can be read several times and read by both parents, whereas a telephone contact is carried on by one parent only. What can be done to improve the daily life for a handicapped child? 1. Physical therapy is important for all children with motor difficulties. This includes also mentally retarded children, as their motor development is always delayed corresponding to their general retardation, occasionally more. Also children with progressive disorders like muscular dystrophy benefit from physical therapy, as it keeps the child fit a little longer. In many situations physical therapy is combined with technical aids, giving the child a maximal ability to move around. Most physical therapy to young children is performed by the parents after instructions from the therapist. As a rule, young children function better together with their parents than with an unknown person, the tnerapist's time is saved and the parents feel that they are doing something themselves for their child. However, they must never get the impression that they are alone responsible for the therapy, they must have a
regular contact with the therapist, who may give them a new training program, correct possible errors etc. Exaggerations must also be avoided, life must never become just physical therapy. Prevention of obesity is important for a child with a motor handicap. Obesity is difficult to correct, once it has occurred, therefore one must talk about it before there are any signs of it. The same applies to overprotection. It is a natural human instinct to protect a sick child, to carry him on one's arms and never let him do something himself nor feel the disappointment of failure; but then he will never feel the joy of success either. Early in the contact with the family one must therefore draw the parents' attention to the risk of overprotection and advice' them how to avoid it. 2. It is practically always possible for at least a young handicapped child to live at home and go out of home for his treatment and contact with his peers. During preschool years we try to integrate children with all kinds of handicap in day centers for healthy children, as such contact is good for both parts. At school the mentally retarded children are taught in their own classes, which are smaller and work slowlier; the whole class is then integrated in an ordinary school, so that all children are mixed during recesses and at lunch. However, some kind of institutionalized care must also be available, as a rule for short-time care. It may give the whole family a great help, if a motor handicapped child is admitted to an institution e.g. for a month each year. He can get intense physical therapy and try new technical aids, whereas the family is relieved of the responsibility. When the main purpose is to relieve the family the child may be admitted to an institution e.g. for one week-end every month and for 3 weeks during summer vacation. For such short-term care one may also use· a private home and not an institution. For older teenagers an institution or a boarding-school where they can stay for one school-term or one school-year may be an advantage, as they may in this age feel the heavy strain of competing continuously with healthy peers. They may 'also need a chance to come away from their parents. Used in this flexible way institutions are of great help to the child and his family, whereas they have a bad effect, if the young child is admitted to an institution and remains there with little contact Gamstorp: Sick child and his family
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with his family. 3. The handicapped child needs also a chance to develop a hobby together with handicapped or non-handicapped of all ages. Stamp collection and photography e.g. can be performed from age 6 to 96, regardless if a wheelchair is needed. Most handicapped children can practise some kind of sport, this should be encouraged. 4. The child's and the whole family's life should be normalized as far as possible. The child's disease must e.g. not prevent the mother from working outside the home. If the parents'
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outside activities are influenced, it should affect both parents. Economical support, help to arrange the home for a handicapped family member, help with transportation are measures which are available and should be used as far as possible to normalize the family's situation. S. One of my Duchenne boys, now dead, once created a slogan which one must try to help families with sick and handicapped children to believe in: "THE VALUE OF LIFE IS NOT MEASURED BY ITS LENGTH BUT BY THE CONTENT THAT FILLS IT."