Here you will find articles from a special issue of the journal from Kind en Ziekenhuis, the Dutch memberorganisation of EACH.

Kind en Ziekenhuis was founded in 1977 by parents with children that needed to be admitted to hospital. They believed that children would benefit from greater involvement of parents in their admission to and care in the hospital.

Kind en Ziekenhuis has been active now for around thirty years and has grown into an authoritative patients’ organisation. It believes that the hospital care provided to both sick children and healthy newborns must be tailored in every respect to their needs.

The association uses its publication Kind en Ziekenhuis to bring about changes in child care practice. To this end, it publishes a theme number every quarter. The themes, chosen by the journal’s editing team, are always related to the practical experiences of the members of Kind en Ziekenhuis. The publications are distributed among the relevant professional groups in health care, depending on the theme.

Over the years, one area that the association has paid special attention to in this publication is preparation and information of children. There has been a definite improvement in this area in the past few years. The association has however observed that even today many hospitals in the Netherlands still lack a clear policy for informing children. The association believes it is itself to blame for this situation, at least in part. It has slowly but surely had to adjust its vision on informing sick children these past thirty years. Initially, the association believed that all forms of communication with children about sickness and treatment should be encouraged as a matter of course, but nowadays we know that it is essential for parents to be involved in order to ensure their child is fully and successfully informed. There is no one better than a child’s parent to intuit what their child is concerned about and how the child processes the information received. A report covering this development in the association’s ideology concerning informing sick children has been published in a recent themed edition of the Kind en Ziekenhuis journal called Dertig jaar voorlichting (Thirty years of Preparation and Information).

This special issue is an English translation of the Dutch journal edition which Kind en Ziekenhuis published to celebrate their 30th anniversary, but also because they wanted to reach a wider audience than the usual readership in the Netherlands.
If you like you can download a pdf-file as a complete facsimile of the journal. By clicking here: Kind en Ziekenhuis Special Preparation and information

In 1989, Remedial Educationalist Marguerite Kaptein-de Kock van Leeuwen reported on a literary study into the way in which children experience hospital admissions and the way in which they could best be prepared for such an admission. It related primarily to short-term admissions in relation to tonsillectomies. It was found that a combination of factual information and personal attention works best for parents and children.

Contributions of literature

A great deal of research has been conducted into children’s perceptions of hospital admissions and the possibilities for helping children to cope with these experiences as best as possible. This research not only confirms many of our instincts, but also offers new leads with a view to helping children further on this issue.

Crisis situation

Janis (1958) and Caplan, G. (1958) both describe the possibility of preparing people for a crisis situation. Janis speaks of the process of emotional inoculation, Caplan of the work of worrying. In both cases, the idea is to prepare people for a crisis situation and to enable people to accurately visualise what they would be faced with in such a situation. They will then be better able to recover.

Anxiety

Jessner and co (1952) observed children who had to undergo a tonsillectomy. The research focused on the question of how children experience a short period of hospitalisation and the question of what effects such an operation has on a child. These researchers found that the tonsillectomy incited significant anxiety in all children. The majority of children can control this anxiety and put the event down to experience. A number of children achieve a higher level of emotional adaptation and even benefit from undergoing this experience. For others, it is more the fact that they do not develop any serious emotional disorders as a result that counts. In the case of a small number of children, major behavioural changes are observed, which can last months and even years.

The anxiety that is incited by the hospital experience can be very diffuse. This anxiety can for example be attached to a specific object, for example a thermometer or white coats. Children can also express anxiety in aggressive behaviour such as biting, spitting, hitting, kicking and swearing. Jessner et al. also describe that children of different ages have different anxieties.
Jessner et al. found that preparing for a painful and frightening operation could reduce the traumatic consequences. To this end, children must be given the opportunity to express their feelings, for example during play, but they should also be encouraged to realise that they are capable of coping with risk and pain.

Work of worrying

Caplan (1959, 1961, 1964) referred to the technique of preparing people for a crisis as anticipatory guidance. When a person is threatened with a crisis, the normal balance in emotional functioning is disturbed. The individual is confronted with feelings of displeasure, anxiety, fear, guilt or shame. The body also responds with reactions, such as an adjusted heart rate and a different breathing pattern. Caplan refers to the process that people go through as the work of worrying. From a preventative perspective, Caplan argues in favour of guidance in crisis situations. By helping people to find solutions themselves, emotional problems can be avoided.

Threatening

Lipton (1962) published an interesting literary study on the significance of tonsillectomies for children. He primarily cites points of view from the psychoanalytical and medical perspective. This author comes to the conclusion that psychologically, the operation is very threatening for children and should therefore only be carried out if there are clear medical grounds for doing so.

Changes in behaviour

Vernon and co (1965, 1966) published an overview of the literature in relation to the significance and the perception of hospital experiences for children. They came to the conclusion that such an experience did not necessarily have to lead to undesirable disruptions in behaviour. They developed a behaviour assessment questionnaire for measuring changes in the behaviour of children after a hospital experience (Post Hospital Behaviour Questionnaire). This questionnaire has since been used by many other researchers.

Intense stress

Skipper and co (1968) observed that in addition to attention for the child, attention must also be paid to the mother because there is an ongoing interaction between the two whereby both spoken and unspoken feelings, anxiety and tensions are transmitted to each other (contagion-hypothesis of Escalona). Children are used to turning to their mothers, particularly in times of stress. They know best how to reassure and comfort them. However, they can only do this if they are not too consumed by worries and anxiety themselves.
The research shows that mothers experience intense stress when their child is in hospital and have to be operated on. This anxiety can be reduced through social interaction with a person who is qualified to provide information and emotional support.

Unrest

Visintainer and Wolfer (1974, 1975) researched the different possibilities for increasing the level of adjustment of parents and children during the tonsillectomy by means of psychological preparation and supporting care.
They assumed that the systematic provision of information and the teaching of desired behaviours to parents and children, combined with encouraging the expression of emotions, would result in less tension. This is because vague, undifferentiated threats cause greater unrest than threats that are known, understood and expected. Their assumptions were confirmed by their research.
Systematic preparation, combined with supporting care, prevents behavioural problems. By systematic preparation, these authors mean the provision of information on what the child may see, hear, smell and feel, telling the child what is going to happen and how long it will take, and practising desired behaviour, such as muscle relaxation and breathing gently into the anaesthetic mask. They also refer to the importance of repeating information as necessary and checking thoroughly what has been understood by the child.

Shocked

In 1976-1977, I conducted a study myself in the Sophia Children’s Hospital in Rotterdam into the possibilities for preparing children who had to undergo a tonsillectomy in an outpatients’ clinic.(Kaptein, 1978)
The children were aged between four and six years old. What struck me was that mothers rarely asked for information themselves, in spite of the fact that they needed such information in order to be able to adequately prepare themselves and their children for the procedure. What was also surprising was that almost all mothers indicated afterwards that they were much more shocked than they had expected to be at the pallor and weakness of their children immediately after the operation.

Film

In 1979, Ferguson investigated whether preparation at home achieved different results to showing a modelling film at the hospital. It was found that the mothers who were prepared at home were less anxious during the period of hospitalisation. The children were also found to show fewer negative behavioural problems afterwards.
This researcher indicates that the anxiety that is reflected in a child’s behaviour in the hospital does not exactly reflect the actual level of anxiety of the child. This only manifests itself in the safe, home environment of the child. This finding is of particular importance because the care that a child receives in the hospital is tailored according to the behaviour that the child exhibits at that particular moment.

Leaflets

Wolfer and Visintainer (1979) researched the possibilities for preparing children and parents for a tonsillectomy with printed material. As part of the preparation at home, use was made of leaflets that provided very specific information about this type of surgical procedure and the situation that children and parents would encounter in the hospital concerned. On inquiry, it was found that nineteen percent of parents had not used the leaflets. It also became evident from the research that preparation at home is only effective if it is followed up at the hospital by means of support for the parents at the most stressful moments.

Distraction

Bush and Cockrell (1987) describe that the level of anxiety of a child in hospital depends largely on the attitude of the mother in respect of her child. Mothers have an influence on the anxiety and coping behaviours (responses to change) of their child. In the case of a young, nervous child, distraction appears to be a successful method of reducing anxiety in the child. In addition, the provision of information forms a basis for exploratory behaviour in terms of the child’s environment. Ignoring the situation or showing signs of agitation does nothing to reassure an anxious child.

Large numbers

In his meta-analytical study, Saile (1988) comes to the conclusion that no economical and practicable methods and techniques have as yet been found for the effective preparation of large numbers of children at the same time.

Confidence

All in all, the knowledge concerning the effective aspects of psychological preparation of children and parents for a crisis situation (for example a tonsillectomy) is still fairly limited. What is certain is that parents who prepare themselves well are best placed to help their children cope well with the stressful situation with which they are faced.
Good preparation starts with the parent addressing his or her own fears and gathering information. A combination of factual information and personal care and attention boosts confidence in a good outcome and offers the best contribution towards personal growth.

This article has previously been published
in Kind en Ziekenhuis, March
1989, special issue on ‘Amandelen’
[Tonsils], page 19-20 and 32. The
author, Marguerite Kaptein-de Kock
van Leeuwen, is a Remedial Educationalist.

You can download a pdf-file as a complete facsimile of this article. By clicking here:

special_issue_preparation_and_information1989.pdf

A real-life story. In 1979, a mother wrote a letter to Kind en Ziekenhuis about the shocking way in which she was treated by an ophthalmologist. Her request for information concerning the operation that her young daughter needed to undergo was completely ignored. The way in which this mother was treated by this ophthalmologist was what motivated her to become a member of the association.

Is there any point in preparing healthy children, in groups, for a possible future hospital visit or hospitalisation? Back in 1983, the English child psychologist Joyce Robertson believed there wasn’t. She argued that hospital-related information is more likely to scare than reassure preschoolers. However, initiatives to inform children in groups are still being launched today, in 2008. This goes to show that Joyce Robertson’s plea to refrain from group-based information efforts has lost little of its relevance.

During the past twenty years there have been increasing attempts throughout the Western world to find ways of softening the experience of being in hospital for young children. Initially the main objective was to obtain unrestricted visiting to all children and to ensure that parents of under-fives could stay in hospital with them in order to help in their care and prevent the dangerous distress commonly seen in young children who go into hospital alone. Refences

In recent years activity has extended beyond the sick child in the hospital ward to healthy children in the community. Attempts are being made to inform all young children about hospitals. The hope is that children thus “prepared” who go into hospital will be better able to cope than if they had not had the benefit of foreknowledge.

Young children from play groups and infant schools have been taken on tours of children’s wards, told what happens there, and shown some of the treatment procedures. Speakers from voluntary organizations visit play groups and infant schools to talk to the children about hospitals, using books, slides, films and toy medical instruments to illustrate blood taking, injections and other procedures. Refence
These well-intentioned projects are misconceived, unnecessary, and potentially harmful. They assume that the children will be reassured by what they are told. But this educational approach neglects the fact that in the early years children are coping with fantasies, labile emotions, and limited comprehension. Talks about hospitals, with their undertones of separation and hurt, may impinge with disturbances for children.

What does “hospital” mean to the young child?

To a young child “hospital” can mean being on a visit to a big building where strange things are seen, smelled and heard. It can mean being ill, perhaps in pain, where there are doctors and nurses who interfere with or hurt one’s body. It can mean being in a strange place away from home and the people one is dependent upon. It can mean feeling frightened, confused and having a limited understanding of what is happening.

Hospital is a subject which cannot be divorced from worrying feelings. Adults and older children can understand the need for hospital and are glad of the help given. But very young children cannot understand why they should be ill or in pain; they are additionally made specially anxious by the threat to their bodies.

Young children are not unaware of illness, pain, and hospitals. In the course of family life they gradually come to know about being ill, getting medicine, hurting themselves, getting a plaster, going to the clinic, seeing the nurse, and having the doctor visit them at home. They see hospital buildings and ambulances and gradually learn their purpose in the haphazard way young children learn. The pace at which the picture is added to will depend upon the children’s ages and personal experiences; the family’s experiences of illness, accidents, birth and death; and what happens to the children’s playmates.

Examples of such learning follow:

1. Before Sarah was two years old her father injured his back and went to the local hospital. When she was taken to visit she saw that people were in bed and got their dinner there, that doctors and nurses looked after them and made them better. Then they went home, as her father did. That bit of learning was tied to immediate experience. Sarah’s play reflected her anxieties and her limited understanding. Her mother helped her to work through them.
   
   At three years of age she had an eye infection and was taken twice to outpatients. Her “preparation” was simple. She was told by her mother that she was going to the hospital where a doctor and nurse would look at her eye. The mother explained and comforted as needed. Sarah did not like the eye drops or the patch over her eye and said so. Afterwards there was much play about the visit, putting patches on her teddy bear’s eyes and telling her daddy about it. There was appropriate anxiety to be talked through such as why it had happened, what the doctor had done and how the eye would get better.
   
   The return visit to the outpatients a week later was unwelcome to Sarah but was accepted as necessary. More play and talk followed, about eyes and only about eyes, the subject of Sarah’s anxiety.
   
   Her other hospital experience was to visit a maternity ward to see a neighbour’s new baby. This appeared to put no strain on her. Sarah’s knowledge about hospitals had increased but it was still limited to her experiences and was under the control of her parents.
   
   
2. At three years of age Paul, Sarah’s friend next door, visited his mother in the maternity unit, his first experience of hospital. Some months later he saw Sarah’s eye patch and was told about her visit to the hospital where the doctors had made her better. He joined in the play with eye patches. Both mothers were on hand to correct confusions and to cope with anxieties that arose from the children’s play and talk.
   
   At four years of age Paul cut his head and was taken to outpatients. He complained bitterly as he was held and stitched. Comforting at the time, and play and talk afterwards, increased Paul’s understanding of what hospital is for. His knowledge about hospital is still limited but is realitybased and age-adequate. Unavoidably he is left with some anxiety.
   
   Sarah and Paul sometimes play at doctors and nurses, but there is much that these two children do not know about hospitals.
   
   The parents avoid many of the illustrated books on hospitals since these open up anxietymaking issues which they feel their children need not know about yet.

Learning about illness, accident and death, even in the safe setting of the family, inevitably causes anxiety. The parents do not tell the children too much but give as much knowledge as they need to know and can understand.

A person visiting a play group to talk about hospitals will know little or nothing about individual children, the ebb and flow of their inner strengths or their wishes to take in anxietymaking knowledge. The play group leader is unlikely to know about them in detail either, and would be unlikely to anticipate the impact of a talk on any one of the following four children:

1. Mary, aged four years, has been ill a great deal and has already been to hospital twice, at six months and at eighteen months of age. She does not talk about hospitals and may not remember the last stay. But as a result of illness and the hospital experiences she is more vulnerable to stress than other children in her play group. She gets worried when routines are changed or a strange person comes to the group. A visitor coming to talk about hospitals could not know this. Talk about hospitals and illness is likely to worry this child by reviving forgotten or repressed memories, then leave her to cope with the memories unaided.
   
   
2. Peter, age three years nine months, had an ear operation at two and a half years of age. The experience was upsetting and his mother was not with him. Since then he has been especially anxious about ambulances and about any cut or bruise to his body. He has more minor accidents than most children. Peter was difficult to settle into the play group, stopping and starting twice before he eventually settled three months ago.
   
   How would Peter react to a talk about hospitals? He has been through an ear operation and now he would be told of other things that might happen to him. Because of the emotional impact of such a talk, he may not listen properly; so to his basic anxiety might be added confusion and further threat. Group “preparation” could add to his problems.
   
   
3. Susan, aged four-and-a-half years, had difficulty in adjusting to play group. She started late but is now making efforts to be big and grown up. Everyone, especially the mother who is pregnant, is relieved that Susan is settled in play group before the birth of the next baby which will take place in hospital.
   
   The mother is in the process of preparing Susan for the new baby, and for herself being away in hospital. If Susan’s play group is told about hospitals, this already insecure girl could muddle who is going to hospital, she or the mother. It could unsettle her in the play group and thereby add to the family’s problems.
   
   
4. Three year old Stephen is going into hospital shortly to have an abdominal investigation and perhaps an operation. His parents are about to tell him they have not yet told the play group leader.
   
   If the children in his playgroup get a talk about hospital, Stephen’s parents may be forced to tell him about the impending hospital admission before they or he are ready. If this happens, it is clear that Stephen and his parents would not have been helped.
   The threat of an operation on their child will awaken anxieties in the parents and will affect the way in which they prepare Stephen. It may be thought that the parents should have told the child sooner, or that a visitor to the play group would introduce the subject better because parents get anxious. But families differ in the ways they cope with such situations. Some may need help, while others do not. These differences should be respected.

What of those children in a play group who have not been patients in hospital, who are not especially disturbed, who have the usual smattering of knowledge about hospitals and who play the usual “doctor and nurse” games? Some of these children will not listen to the talk about hospitals, others will not remember what is said. They may not be affected one way or another.

Others will listen to part of what is said. These are the children whose eyes glaze over at story time, and whose thoughts wander off. These children still live a lot of time in their own world, and join adults in theirs only fleetingly and not to order. They will go home with a very confused understanding of what they have been told about hospitals.

Some will sit rooted to the spot, seemingly fascinated by what they are told. The NAWCH Project Report on Preparing Children for Hospital refers with satisfaction to the children being “fascinated,” as if this confirmed the value of what they are being told about hospitals. Reference But this assumption has to be questioned. Children can be fascinated by many a frightening thing which does them no good at all. For example, a child will sit fascinated by a frightening television program until a parent turns it off. Then the child rushes about frantically or sits immobilized, anxiously sucking his thumb.

Play group children can be looked at in another way. There are considerable differences between them in their levels of language, comprehension, memory structure, and concentration. Some will not be able to differentiate between “if” and “when.” For example, one child was reported as asking after a hospital talk, “Can I take my Teddy?” He had probably understood that he was going to hospital.

The under-fives are living through a period of fast psychological growth and they are from time to time troubled by fantasies, anxieties and conflicts. Families know that, without warning, children’s moods change. They may become tense, go off their food, wet the bed, or become aggressive or anxious for some days or weeks.

Parents do not always know why and do not have to know why. They tolerate the inexplicable behaviour, they support, comfort and take their children to the doctor. Usually after a few days or weeks the children return to an even keel. They have worked through some troublesome feelings -- some aspect of psychological growth.

In any group there will be children who are working through something that is troubling them. To be told about hospital with its threat of illness, hurt and leaving home will add further anxieties to those they are already coping with in the course of normal development. This can only be disturbing to these children and their families.

When group talks are illustrated with medical instruments and books the emotional impact will be greatly increased. Children can shut their ears to some extent to protect themselves from what they do not want to hear. But visual material impresses more and is less easy to forget.

Group visits to hospital carry a further danger that the children see not only the planned exhibit but unplanned ones as well, which could confuse and frighten.

The examples in this paper have been of play group children but much that has been said relates also to the five-to seven-year-olds. These infant school children, too, need protection from educational experiments...for experiments they are.

Studies are lacking on the emotional effect of group instruction or group hospital visits upon young children who do not become patients. There is no evidence that young children who go into hospital a month or six months after a group session have been helped by the “preparation.” If children go to hospital how much will be accurately remembered of the “preparation?” And how relevant to the actual experiences will be the information that is retained?

It may be that adequate studies are impossible because of the great number of variables, their subtlety and complexity.

The aim of preparation

It should not be the aim of preparation to make children submit without protest or anxiety to hospital admission or procedures. Submissiveness is not the measure of successful preparation. Anxiety and protest are often appropriate. As Anna Freud said, “When the body submits, the mind retreats.” Reference

The true aim of preparation is to prevent children’s being overwhelmed by anxiety, so that in the longer term they can assimilate the experiences and not be damaged by them. Allowing children to express feelings of anger and sadness, and to play and talk afterwards, are the safest and most effective ways of helping them to cope. These carry no risks and are always helpful. Appropriate books and play materials can aid “working through” the experiences of hospital and the feelings about it.

When young children do go to hospital they need to have their parents to stay, to explain, to support and to comfort. If a parent is not there someone is needed who will take on these functions, ideally a substitute-mother who will stay around the clock. A specially assigned nurse or play person who attends with some consistency can help to a degree. (see earlier refences 3 and 4) References

In addition, preparing children is much more than the giving of information. It is to understand and respond to children’s individual reactions to such preparation, and that means knowing children’s histories. Adults are made anxious by the thought of young children going to hospital. But in contemplating the possibility it is important that we bear the anxiety within ourselves -- as parents, nurses, play group leaders, play specialists -- instead of passing it on to children who are too immature to bear that anxiety.

Joyce Robertson
Child Psychologist Robertson Centre,
London, England.

You can download a pdf-file as a complete facsimile of this article. By clicking here:
special_issue_preparation_and_information1983.pdf

Here you wil find more biographical information about Joyce Robertson.

On 16 January 1990, the director of Kind en Ziekenhuis, Margreet van Bergen, gave a lecture to a room full of patient communication advisors on preparing children and parents. The essence of her message was that a child must be prepared by an adult whom he or she trusts and who is also able to offer him or her emotional support. The motto is that a child receives the best preparation from a wellprepared adult.

Psychologist Joop Fahrenfort obtained his doctorate in 1993 with a thesis on the emotional problems of preschool children who have experienced hospitalisation. His research shows that parental participation can help prevent emotional problems. Fahrenfort argues that parents should be informed of this fact, preferably before their child is admitted to hospital. He anticipates that parents who are better informed will more readily opt for parental participation and rooming-in.

In the alarming but meticulous article by the Englishman Douglas published in 1975, it was argued that hospitalisation in a child’s first years of life can have consequences right up to puberty. In reality, this is almost the same as saying it has consequences for life. This does not mean to say that children can never overcome them. The idea that this traumatic event can leave scars behind, such as insecurity, quasi-indifferent behaviour, ticks or timidity is nevertheless rather alarming. What Douglas concluded is probably true. His extensive research was, however, conducted many years ago (and also a fairly long time prior to its publication), and since that time, much has changed. This raises the question of whether the problem identified in the research can occur in our situation here and how, how great the risk of this is and under what circumstances we should be concerned about this.

In the hope of being able to find a scientific answer to this question which could be used to do something positive in practice, we initiated the research project Extra Risico Opnamen [High-Risk Admissions]. This project was financed by the Praeventiefonds. It took fives years to complete, three of which were spent on field work.

Basic principles

The majority of members of Kind en Ziekenhuis will be reasonably familiar with the basic principles of the research: the long-term consequences of hospitalisation must be avoided at all costs; in the case of the youngest children, parental participation is the key to this; and the research must gauge the extent of the risk of long-term consequences and provide an answer to the question of whether parental participation has an effect on this (Douglas’ research did not provide any insight in regard to this last aspect).

The relationship between child and parental figure prior to, during and after the period of hospitalisation is of considerable importance for the answer to the question posed. Due to practical limitations, however, the significance of the hospital staff took a back seat in the research. The children who run the greatest risk of suffering from consequences are the children in their first years of life. This is easy enough to explain. Young children do not understand what is going to happen to them, cannot be informed of what is going to happen to them and find it hardest to cope without their ‘figure of attachment’, i.e. their guardian, who is normally a parent, usually the mother. The more intense vulnerability of children in their first years of life has been established by various researchers.

Young patients

Sixty-four families were involved in the research. They were ‘followed’ from the moment upon which it was decided to admit the child concerned to hospital. A few of these cases concerned (acute) emergency admissions, but in the majority of cases it concerned elective surgery. It was agreed that the research would be limited to medium-term admissions: young patients who would have to remain in hospital for at least one week in connection with an operation. The patients who were participating in the research were required to remain in hospital for an average of eleven nights, with a maximum of twenty-five nights. Three quarters of these children had already been admitted to hospital at least once before.
The age of the child is highly significant in terms of the consequences of admission to hospital. As already indicated above, being admitted to hospital and undergoing surgery have different implications for children of two years of age than for children of five years of age. In both cases, it is recommended that the father or mother stays overnight at the hospital, but, setting aside differences in character, the chance of the child falling into despair is less likely among older children. It was decided that only pre-school children aged between twelve and thirty-six months would be included in the project.

Data

In order to be able to satisfactorily investigate the basic principles and to be able to find enough ‘suitable’ families to take part, no less than six hospitals were involved in the research. Even with the cooperation of the hospitals, finding families who could potentially take part in the research proved a very difficult and time-consuming task. The field work involved obtaining information from each family at four different stages: prior to admission, during the period of hospitalisation, a few months after discharge and, finally, approximately one year after discharge.

The subject of rooming-in often only comes up on the day of admission

The researchers visited the families at home and at the hospital and also contacted them by telephone. The mother was usually the contact person, but in the case of a few families it was the father. Four categories of information were collated:

1. information concerning the behaviour of the child, both prior to and after hospitalisation, collected by means of a standardised interview with the parent. Based upon this information, scores were allocated for ‘problem behaviour’, for example sleeping problems;
2. information concerning the extent of parental participation, including rooming-in and the presence of the parents during the induction of anaesthesia;
3. video recordings of the interaction between parent and child, for which certain games were played in the home situation as part of the set programme. How the parent and child responded to each other at the beginning of their period of hospitalisation was filmed in the hospital;
4. a test for learning to speak and understanding spoken language, conducted by a research assistant on the young child a year after discharge. The level of language development was measured in relation to the child’s age.

Advice and information

Advice and information leaflets on parental participation were given to a proportion of the parents. The remainder of the families received no advice and no information leaflets. This was done in order to conduct a comparative study of the effect of informing parents. However, this study failed to demonstrate the favourable effect of advice and information. This was partly due to the fact that many parents who took part in the research had already had hospital experience. Furthermore, the attention of the parents who did not receive any advice or information leaflets had already been drawn to the possible risks of admission for their child as a result of the research.

Parental participation

In the field of parental participation, attention was paid not only to rooming-in, but to all ways in which parents can support their child during treatment in hospital. For children of pre-school age, it is now normal for the mother or (less commonly) the father to continue to carry out a substantial part of the child’s everyday care (feeding, washing, getting dressed etc). This was done by all families. The time when parents only came to ‘visit’ their sick infant is fortunately past. Nevertheless, the care is still often partly left to the nursing staff.
During the research, parental participation was assessed in terms of the number of hours that one or both parents were present, on average, in the morning, afternoon and evening. After all, presence and care go hand in hand. Furthermore, attention was paid to presence at critical moments, such as during an examination by the doctor or during induction of anaesthesia. Finally, the number of nights that one of the parents stayed at the hospital overnight was recorded. Seven families managed to stay over for ten nights or longer; the average was six nights. In twenty-three cases, the offer of rooming-in was declined.
In order to obtain an overall picture of parental participation, a combined score was calculated for all the components of the study together. Although visits from other people, such as a favourite grandma, can also have an impact, this factor had to be left out of consideration, as did the role of the hospital staff.

Sensitive parents

The most important question posed by the research was whether parental participation has a demonstrable effect on the emotional development of the child after discharge from the hospital. However, this question has a catch. It is after all perfectly possible for children to develop normally if they have parents who have a good eye for the needs of the child. Such parents are referred to by psychologists as ‘sensitive parents’. If sensitive parents do more in terms of parental participation than other parents, it could appear as if parental participation helps, whilst in reality it may simply be that it is the parents’ sensitivity that helps.
In order to overcome this problem, an estimate was made of the sensitivity of the care-providing parent.

This was done according to a method developed in the United States for analysing video images of the interaction between parent and child whilst playing games. The fact that the scores for sensitivity produced by means of this approach are of significance was confirmed at a later date on account of the fact that they were found to contain a prediction in terms of learning to talk.

The parent-child relationship is affected by a period of hospitalisation.

It was then possible to specify the extent to which the factors of presence and sensitivity of the parents had individually contributed to a favourable situation after the child had returned home from hospital. This made it possible to examine which aspect formed the best method of protection against future problems.
It was predicted that high scores for sensitivity and parental participation would go hand in hand with low scores for negative behaviour of the child. This was indeed confirmed. It was also found that parental presence was a better means for predicting future problems than sensitivity. In cases in which parental participation during a child’s stay in hospital has been less intensive, more negative behaviour will be observed on the part of the child towards the parent in a normal everyday situation two months after the child has been discharged.

Behavioural problems

Now that such an effect appears to be measurable within a broad diversity of parent-child situations, it can be concluded that the parent-child relationship is indeed affected by a period of hospitalisation. In some cases this relationship suffers damage, not because the parents were never there, but because they were not there enough. The children whose parental participation was less intensive were also found to have more behavioural problems in the long term (approximately one year after discharge), such as not wanting to go to bed, restlessness, disobedience or constant attention seeking.

Attachment

The above does not take into consideration what the parent-child relationship was like at the onset of the hospital admission. A great deal of attention was however paid to this in the research.

Specialist literature in this field makes a distinction with regard to children between secure and insecure attachment. According to a number of influential theorists, a secure attachment relationship means that the child has ‘until now’ had very few disappointing experiences in his or her life and has a great deal of trust in the availability of the parent.
Children with a secure attachment relationship are less inhibited when it comes to exploring their environment and find it easier to establish contact with strangers.

It is not possible to identify at first sight whether there is a secure or insecure attachment. In order to establish this, a (fairly complex) method was developed in the United States, which is currently applied in many research projects. The basic principle of this method involves taking video images of the parent and child to see amongst other things how the child responds to a short-term absence of the attachment figure. These video images were taken by us in the hospital, usually on the second day after admission of the child, therefore prior to the operation. Three experts on the attachment theory were called in to assess the types of attachment according to the standard system, a task which they are specially trained to do. Out of the 64 children, 37 were classified as being ‘secure attached’.

Shock

A study was conducted to establish whether secure attachment could be interpreted as a protective factor. It was predicted that the securely attached children participating in our research would display fewer relationship problems and few behaviour problems in the period after hospitalisation than the children classified as insecurely attached. This prediction was found to be substantially inaccurate. It was even found that the initially securely attached children, who as a group displayed fewer behavioural problems before they were admitted to hospital, showed distinctly more behavioural problems after a year than the other children.
With hindsight (!), this is not particularly difficult to explain. If the securely attached group are again divided into children with a relatively high level and children with a relatively low level of parental participation, it becomes evident that the increase in behavioural problems only occurs among the group of children with a relatively low level of parental participation. The most plausible explanation for why the prediction was incorrect, is that securely attached children experience a greater shock if their parents are not present in the hospital at critical moments than insecurely attached children. In such situations, therefore, the secure attachment does not have a protective effect. This result also became manifest in the form of negative behaviour towards the parent approximately two months after discharge. It is therefore a possibility that the secure attachment between a proportion of the parent-child pairs changed into an insecure attachment following hospitalisation.
This last assumption could not be assessed within the scope our research. It is however supported by publications from other researchers on the attachment quality of chronically ill children – children with a heart condition, cystic fibrosis or schisis.
The evidence suggests that these children are more likely to be insecurely attached than other children of the same age who have never been hospitalised, not because of the disease itself, but as a result of being admitted to hospital.

Resilience

Pre-school children who were admitted for a third, fourth or fifth time were, as expected, found to show more problems after the period of hospitalisation than those who had never been hospitalised before. This serves to confirm what has already come to light in previous research: that for a proportion of these young patients, the repetition of the event is in itself damaging.
There are however also young patients who have developed a certain resilience as a result of their hospital experience. The children who, despite a previous history of admissions, achieved a favourable score in the measurement prior to admission (i.e. showed fewer behavioural problems than the average of the group), also achieved relatively favourable results after returning home from hospital. This finding underlines the importance of careful guidance during a first admission to hospital at this sensitive stage of a life. The significance of this is also evident from an analysis of the effect of rooming-in with a view to preventing negative behaviour of the child towards the parental figure in the future. This effect was clearly much more evident among the patients who were being admitted to hospital for the first time.

Language development

It has been suggested that the negative consequences of hospitalisation could become manifest in a child in learning to talk and understand spoken language. The idea behind this theory is that language development is partly dependent on the parentchild relationship.
The children in our research were assessed on language development on average one year after their discharge from hospital. It was found that there was no direct and clear connection between the presence of parents at the hospital and progress in language. The sensitivity of the parent, as measured in relation to the hospital admission, was on the other hand found to have a bearing on this development. Children with relatively sensitive parents had at that time gained a lead over children with less sensitive parents in terms of learning to speak and understand.
Finally it was investigated whether a correlation could be found between manifestations of a disruption in a relationship, i.e. negative behaviour towards the mother (two months after returning home from hospital) and the child’s subsequent language development scores . This indeed proved to be the case: in the event of a disrupted relationship, language development was found to be delayed, not in terms of learning to speak, but certainly in terms of learning to understand spoken language.

Repressed anger

What happens to children during a period of hospitalisation? Apart from what we can see on the surface, repressed processes also take place which can affect the relationship between the child and the parent(s). This relationship suffered more frequently in the case of the children involved in our research who experienced a lower level of parental participation. Their reactions indicated that they were angry with their parents. As a pre-school age child has limited possibilities for expressing this anger and is dependant upon the parent, he or she is more inclined to develop repressed anger. This is often not perceptible to the parent.
It should be borne in mind that even the parents who have spent less time at the hospital have still gone to a great deal of effort in the interest of their child. They have supported their child as best as possible according to their own standards and circumstances. We are not talking about negligent parents here. Furthermore, you can make a connection between difficult behaviour of a child and hospitalisation, but many other children also show difficult behaviour, and they too fall behind with their speaking skills. Moreover, if a child is angry with a parent and is displaying negative behaviour, this is not necessarily an irreparable situation. Results obtained by other researchers indicate that the relationship can be repaired. In some families, however, this is not the case. In around ten percent of the sixty-four families that took part in our research, the initial score for behavioural problems had (more than) doubled a year after hospitalisation. Whether this increase in problems can be completely reduced to a rift in the relationship is not certain. The connection between these problems and a lack of parental participation during hospitalisation was however unmistakable.

Recommendations

The recommendations to parents have been established logically on the basis of the aforementioned research.
An important point, in the case of a scheduled admission, is that the parents should be prepared. Both the father and mother must, in so far as they possibly can, temporarily free themselves of their obligations.
The contribution of the father is of considerable importance. It is essential that appropriate arrangements are made for the care of any other children in the family. It is preferable for them to stay with people that they know and trust. If, however, the parents wish to continue to care for any brothers or sisters themselves, the parents can take turns to stay at the hospital, both during the day and at night. Staying the night at the hospital in a separate guest room or in a guest house is not recommended, because this means that the child is on his own at night anyway.
Parents need to be better informed of this issue by the hospital staff. Usually, but not always of course, the subject of rooming-in only comes up on the day of admission. This cannot be avoided in the case of an emergency admission, but certainly can in the case of a planned admission. For this reason it is strongly recommended that (inexperienced) parents with a child of pre-school age in principle always be informed of this issue prior to admission of the child. They must be informed of the psychological risks, the value of rooming-in and the practical problems that this may involve for the parents. From a logical perspective, this issue can best be discussed during the consultation in which the decision to admit the child takes place. The responsibility for ensuring that this conversation takes place should therefore lie with the doctor treating the child, whether this is a paediatrician or another specialist. The responsibilities of the nurse and the play specialist during the admission do not change as a result of this. The date of admission must be known in good time and not scheduled at the last minute, which is unfortunately an all to familiar occurrence.

Future

For Kind en Ziekenhuis it is essential that the conclusion of the research be grist to the mill in view of the fact that for many years now it has been working tirelessly to promote intensive parental participation and rooming-in. The importance of what has now been achieved is underlined by the results of our research. In the future, however, it will not be sufficient to simply check whether hospitals are offering the possibility of rooming-in. It has to be investigated whether parents are being sufficiently encouraged to accept this offer and whether rooming-in is actually taking place. A lack of information must no longer present an obstacle.
Another important point is the identification of a specific age group as the highest risk group. There is occasionally some concern that by making a distinction between age groups, the emotional needs of older children would be underestimated. The identification of a high-risk group can however be necessary for establishing agreements and formulating policy. Rooming-in, amongst other things, must remain a possibility for older children. In the case of children under the age of three, rooming-in must be established as the general norm.

This article has previously been published
in Kind en Ziekenhuis, September
1994, special issue on ‘Partners: ouders
en hulpverleners' [Partners: parents
and care providers], page 68-72. The
author, Joop Fahrenfort, was the initiator
of and senior researcher for the
research described in this article.

You can download a pdf-file as a complete facsimile of this article. By clicking here:
special_issue_preparation_and_information1994.pdf

Development of children's conception of illness

Child and youth psychologist Hendrik Koopman obtained his doctorate in 1993 with a thesis on how children perceive and conceptualize illness. In 1997, he wrote an article on this subject in Kind en Ziekenhuis. According to Koopman, preparing a child can only be successful if care providers convey their message in a way that relates to the vision that the child in question has of his or her own illness. The development of children in their thoughts about illness can be demonstrated in a model.

It was a beautiful, sunny, winter’s afternoon in February 1981. Two doctors came into the room and asked me how they should break the news to a boy of twelve, who had been admitted to the Buitenkliniek of the Leiden University Hospital in Noordwijk, that he did not have much longer to live. During the exchange of views that followed, certain problems came to light, such as: what should he and should he not (yet) be told; how much detail should the doctor go into in terms of the physical background; what information does he need to be able to understand his situation? I had to admit that I could not give a clear-cut answer to these questions. A sense of malaise persisted within me since that day. Attempts to gain an insight into the thought processes of children in regard to illness had largely foundered. The literature in this field focused primarily on the emotional responses of children prior to, during and after hospitalisation and on the possibilities for dealing with, or better still, preventing these responses. It became evident that very little was known about the cognitive aspects of how children perceive illness. It was found, for example, that many information leaflets had been written on the basis of working in practice with children. There was a distinct lack of attempts to formulate more general theoretical principles.

Why, what, how

An exception to this was an academic article on children’s conceptions of illness by Roger Bibace and Mary Walsh in the journal Pediatrics (1980). They built on the foundations of the Piaget theory. Piaget’s theory provides a framework for describing the development of a child’s thought as he or she gets older. The child’s attempts to gain an understanding of and control over the world around him are central to this theory. In this regard, Piaget makes a distinction between a number of developmental stages in thought:

• the sensorimotor stage (from birth to around two years old);
• the pre-logical period (2-7 years of age); 
• the concrete-logical period (7-11 years of age); 
• the formal-logical period (11+).

Bibace and Walsh used this classification as a basis for determining their own model of the different stages in relation to children’s conceptions of illness. In order to establish this model, they collected data by means of conducting interviews with children. ‘Why, what and how’ were the recurring core questions in relation to the subjects of Own illnesses, Illness of a loved one, Pain and Colds. The children were first asked to describe an illness. They were then asked to give explanations for the cause of the illness. Finally, they were asked for their insights into the possibilities for curing the illness. Bibace and Walsh’s stage model was then adapted by me and presented in a uni-dimensional model, the socalled Kijk-model [View Model].

Incomprehension

According to the View Model, the first stage in the development of conception about disease is characterised by incomprehension. This stage coincides with the sensorimotor stage of general cognitive development within Piaget’s model. At this stage, children are not concerned with the whats, whys and hows of the illness. In most cases the child would not respond to the content of the question. The answer given would be an association from the child’s own experiences.

Example: how do you catch a cold?

A cold is what you get on holiday.

I once threw up and my two brothers have also been sick in bed before when they were little.

Detachment

The second stage concerns detachment. This stage coincides with the pre-logical period of Piaget’s model. During this period, illness is defined by an external event that has attracted the attention of the child. The event may be a sound or an observation. The causal link between the event and the question more or less comes down to chance. In some cases, magical aspects play a role. The child’s thoughts focus on a single aspect. The child is unable to sufficiently differentiate between his or her own body and the external world.

Example: how do you catch a cold?

If you leave the window open, then your sheets get very cold and that can make you a bit ill.

Proximity

In the third stage, which also falls within the pre-logical period, the concept of proximity plays a prominent role. The child now describes and experiences illness in terms of persons, objects and events from their immediate environment. People become ill as a result of infection by other people in proximity to them. The child will always lay emphasis on spatial or temporal proximity. The child sees himself as a victim of events that overcome him. In this stage, the descriptions of the causes become clearer and less vague.

Example: how do you catch a cold?

Well, for example when somebody else has a cold and you get close, and the next day she is better and you have a cold.

Contact

The fourth stage is characterised by contact. This stage falls within the concrete-logical period of conception. The child is not yet capable of differentiating between mind and body. Both aspects can play a role in causing an illness. The definition of disease is becoming more extensive and can include various symptoms. Bad behaviour, just like contact with dirt or germs can cause illnesses. Bodily functions are included in the explanations about illness, particularly the functions that are observable from the outside. The source of illness is often physical contact. The illness can be cured by means of medication that is applied to the surface of the body.

Example: how do you catch a cold?

Well, when you sneeze really hard, little drops land on your face and there are germs in there that make you ill.

Internalisation

In the fifth stage, which also falls within the concrete-logical period, the concept of internalisation is established. For the first time, the child (roughly) looks within the body for a possible cause of a disorder.

The child identifies an external contaminant (such as smoke, germs) or an unhealthy physical condition (obesity, high blood pressure) as the source of illness. These factors have a direct effect on the organs within the body. According to the child, the illness can be cured by means of medication which must be ingested. It is during this stage that the child first discovers his or her own role in combating illness. Illness can, for example, be prevented by taking the proper precautions. It is also during this same stage that analogical reasoning develops (the heart as a pump, the stomach as storage place for food).

Example: how do you catch a cold?

When you cough, those germs go through the air and someone else can breathe them in and then I think it gets into your blood. Then you also get a cold.

Physiological

In the sixth stage, which corresponds to the highest development stage of conception, namely the formallogical period, the statements can be substantiated by physiological explanations. The child can describe and explain the occurrence of an illness in terms of organs and organ functions within the body. Structures and effects that are not directly visible can be described. The child is capable of constructing hypotheses on the relationship between the environment and the body. Associations can also be made with causes of an illness. There is a growing awareness of control over the development and curing of illnesses. The child realises that his own actions can substantially influence the final outcome.

Example: how do you catch a cold?

Well the germs get into your blood and the white blood cells will fight them and try to kill them but if they lose you will get ill.

Psycho-physiological

The seventh and final stage of this sub-classification, which also coincides with the formal-logical period, is characterised by psycho-physiological insight (body and mind).

The child is now capable of including the role of the mind in explanations concerning the development of disease. He or she has a growing awareness of the fact that a person’s thoughts and feelings can influence and change bodily functions. Physiological components are the principal cause of the development of an illness, but the role of the mind is also of importance. A person’s thoughts and feelings can also have a significant influence on their recovery.

Example: how do you catch a cold?

This can happen in various ways. Sometimes a cold is not so bad. It depends on how you feel.

Television

The View Model is an attempt to map out the development of children’s conceptions of illness in a comprehensible manner. It is however possible that variables other than age and the associated cognitive maturation may influence the development of children’s conceptions of illness.

Children are not concerned with the whats, whys and hows of the illness

Firstly in this regard, the history of illness of the child can affect this development. Furthermore, television plays a significant role. Children aged between ten and thirteen years were given health-related advertisements to watch. Almost half of all the children believed the advertisements that were shown to them. This influencing effect was particularly perceptible among the younger children and children from less privileged social backgrounds. The television was found to be the most significant source of information for all age groups (approximately half), followed by information from parents (approximately a quarter).
The literature in this field presents a diverse range of views and research results on the influence of the family on children’s conceptions. The role of the mother cannot be interpreted without ambiguity. A child with a mother who has an over-protective attitude in terms of illness does not necessarily develop the same or opposing ideas. The ideas of the mother in relation to illness are not necessarily indicative of the ideas of the child. The older children become, the more their explanations tend to resemble those of their mother’s. In other words: their conceptions of illness become increasingly similar to those of adults. Therefore, children do not learn about illness as a result of adults directly passing on definitions and values, but more as part of the general process of socialisation involved in becoming an adult. Children learn more from what their parents do and how they react than from their attitudes. If the parents have a higher level of education, this aids the development. A child’s social background has also been found to have an influence on children’s conceptions of illness. Children from higher social classes take a more individual and a less passive standpoint in their views on the causes of illness.

Feelings of guilt

Children in the first five stages of the View Model often think that an illness or admission to hospital is a punishment for bad or excessive behaviour. For them, it is not important whether the actions in question have taken place in reality or in their imagination. In this belief, they differ very little from their ancestors who regarded illness as a punishment for the collective or individual sins of man. Research conducted as early as 1936 showed that ninety percent of children believed that their illness was a result of their ‘bad’ behaviour. Eightyfive percent of the children with diabetes said that they had eaten too much sugar and ninety percent of children with heart problems believed that they were ill because they used to run too much. Many authors over the years have established that children have a tendency to blame themselves for an illness. This trend can even be identified among children with congenital disorders.
The fact that the child forms the idea that he or she has fallen ill because he or she has done something wrong is probably a defence mechanism. Feelings of guilt can help the child to cope with an emotion, such as helplessness. It appears that children (for the most part unconsciously) prefer to hold themselves responsible instead of admitting that illness can be caused by chance and that nothing can be done to prevent this.

Warnings

A possible explanation for this way of thinking lies in the fact that the cause of the illness is usually not clear to children. It is therefore natural for the child to implicate his or her own actions in an attempt to understand and explain the illness. Thoughts of guilt in children can, for example, originate as a result of a method of communication used by adults. Warnings from parents reinforce every latent fear that the child may have, that becoming ill is a form of punishment. A cold develops because the child disobeys instructions and does not want to wear his boots. A bone gets broken because the child does not take heed of his mother’s warnings not to roller skate on the street. An upset stomach could have been avoided if only the child had eaten what was expected of him. Poor eyesight is caused by reading small text, reading in bad light or persistently reading comic strips. These warnings about what can happen are often accompanied by the remark: ‘I told you so’ when something actually happens to the child.

Punishment

Children can also regard examination procedures or treatment as a punishment for bad behaviour. Healthy, non-anxious children dismiss the possibility that poor behaviour can cause illness. Ill and anxious children on the other hand use this type of explanation more frequently and over a longer period and do

The development of children's conception of illness

make a connection between illness and poor behaviour or carelessness.
A child’s conceptions of the causes of illness change when the child himself becomes ill. It also makes a difference whether the conceptions concerned relate to the child’s own illness or that of another. It has been found, for example, that children who do not have diabetes frequently attribute the disease to a person’s own actions (eating too much, drinking too much, too much sugar), whereas children with diabetes are more likely to put the cause down to chance. The danger of emphasising the child’s own actions as a cause of an illness is that this can amplify the feelings of guilt that the child may experience upon developing that illness. After all, they will think that the illness could have been prevented.
As far as adolescents, and certainly adults, are concerned, it is increasingly taken for granted that their conceptions of illness are commonsensical and rational in nature and are not clouded by feelings of guilt as a result of their own actions. Phenomena such as self-blame and egocentrism, however, have been found to arise among even the most intelligent of children. For example, a twelve-year-old leukaemia patient said: ‘I know that the doctor has told me that my illness is caused by too many white blood cells, but I still wonder whether I got it because of something that I’ve done.’ It is also often the case that the conceptions of adults are to a significant degree influenced by thoughts of guilt. ‘Searching for meaning’ is characteristic of the way in which many parents deal with their situation. In their search for an explanation for their child’s illness, many parents place blame on themselves.

Organs

One of the most striking characteristics of the View Model classification is that the use of physiological mechanisms as an explanation for the cause of illness only comes into play in the formal-logical period (aged eleven years and above). The information in the literature available on this subject largely supports this assumption. Among children aged from five to eighteen years, who have been admitted to hospital for various reasons, the five most frequently named internal parts of the body are: bones, veins, the heart, blood and the brain. Many children name organs that are associated with their illness or operation (appendix, tonsils).
There is often some confusion about the correct number of certain organs in the body (for example, two livers). Children under eight years of age are commonly of the opinion that the skin holds the body together, so that the blood cannot fall out (compare: fear of certain medical operations). Children’s ideas on the structure of the body and the functioning of organs and organ systems are for the most part vague, incomplete or even absent altogether. It has been found that children aged five to twelve years are generally capable of indicating the correct location of the brain. Young children, however, believe that the brain only has a function in mental processes.
They do not consider that the brain could also be involved in motor function and believe that arms and legs move by themselves. Only half of the children realise that the brain is involved in activities such as swimming. The others appear to believe that their arms and legs swim of their own accord.
Young children have little to no knowledge of their body, except for what they can see for themselves or in relation to what they have consumed. Their drawings of the body often include the stomach containing all the things that they have eaten (unchanged in terms of consistency). There is a fixed order in which children acquire knowledge of the insides of the human body.
First they obtain knowledge about the heart, then the brain and the stomach, and later the lungs. Just as with adults, knowledge of other organs, such as the liver, pancreas, kidneys or bladder, remains relatively small.

Processing

Knowledge of the development of children’s conceptions and perceptions of illness is an important condition for being able to treat children in an appropriate manner. With this knowledge, the care provider (or parent) will be able to connect with the child more easily and will be in a better position to ascertain what can and cannot be said to the child.

With regard to the form, organisation and content of knowledge and the transfer of information, children continually have to make choices about what is relevant and has a function in the management and treatment of an illness or disorder. It is insufficiently clear from the literature in this field as to when children should be informed about a chronic illness. In general, information is given to the child without any knowledge of his or her current illness behaviour or reactions to his or her medical situation. Likewise, it is often not known whether the child has already been given information, in whatever form, about his or her illness, or what the child’s family situation is. Other characteristics are also frequently unknown. It is advisable to take into account the stage of information processing in which the child is presently engaged in respect of his or her illness. Education at the onset of the illness should remain limited to the most essential information. The View Model demonstrates the undeniable importance of re-education.

Dialogue

Furthermore, the focus must be on informing the child by means of an exchange of information (dialogue) as opposed to a one-sided statement of details (monologue). It is more important for the care provider to listen to and understand what the child says than it is for the child to listen to and understand what the care provider is telling him. In order to achieve an effective approach, the gathering of information must precede the provision of information. It is important to tailor the information to the child’s stage of thinking in relation to the subject of illness.
The terminology must be carefully selected (consider whether words have double meanings). The information provided should preferably already be partly familiar to the child and only partly new. A child has difficulty in understanding the reason for a prescription if it concerns an internal bodily process. Only around the age of 11 years, when the child is capable of understanding bodily processes (stage six), can an attempt be made to inform the child at an ‘adult’ level. Knowledge on insight and practical consequences for the treatment must be assessed on a regular basis.

Observation

Observation is a determining factor in the thought processes of children. In general, observation of the causes of illness is initially principally directed towards the outside world and external conditions (exogenous). This manifests itself among other things in children’s behaviour and the way in which they react to illnesses and admissions to hospital. As the development progresses, the child obtains the ability to use information from his observations in a reflective manner to form an understanding of the illness, to distance himself from direct observations and to incorporate the internal functions of the body in the explanations (endogenous).
Observation can be regarded as a cognitive system because it partly determines how the area for attention is perceived. Observation is initially global, whereby the undifferentiated whole dominates. This is followed by an analytical stage, whereby observation is selectively focused on components. The final stage is synthetic, whereby components are combined to form a whole.

Aware

This classification can be applied to the progress of the development processes in conceptions of illness. The research data indicate that it is relevant to give observation a more central place in the original stages model. Based upon the perspective of the View Model, a process can be described whereby the child, via characteristic stages, is finally able to differentiate between several aspects at the same time in his explanations of the cause of illness and to also implicate the role of the psyche in these explanations. The child gradually becomes more aware of the internal functions of his body.
Observations become more differentiated and descriptions increasingly resemble adult views. The highest thinking stage does not always have to be achieved, as is evident for example from research conducted among mothers.
By means of this View Model, the explanations of children can be interpreted in a more generally applicable manner. Possible causes of an illness are associated ever more closely with the body and ultimately internalised. The model has a sort of general universality and progression through the stages takes place irrespective of the illness and variations in personal development and circumstances.

This article has previously been published
in Kind en Ziekenhuis, September
1997, special issue on ‘Schoolkinderen'
[School children], page 68-73.
The diagram was published in Kind
en Ziekenhuis, October 2004, special
issue on ‘Informatie en toestemming'
[Information and consent], page 114.
The author, Hendrik Koopman, works
as a child and youth psychologist in
the Paediatrics Department of the
University Medical Centre Leiden. He
obtained his doctorate in 1993 with a
thesis entitled ‘De kijk van kinderen:
Een cognitief structurele visie op de
ontwikkeling van het denken over
ziekte' [The perspective of children:
A cognitive structural vision on the
development of conceptions of illness]
(Amsterdam: Thesis Publishers).

You can download a pdf-file as a complete facsimile of this article. By clicking here:
special_issue_preparation_and_information1997.pdf

At the turn of the millennium, the UMC Utrecht/Wilhelmina Kinderziekenhuis (WKZ) introduced a groundbreaking initiative, which Jeanine van der Giessen wrote an article on in 2004. Since then, in the WKZ parents have been the most important informants of young children, and young people from the age of twelve are now approached directly. This new policy is completely in line with the policy championed by Kind en Ziekenhuis. It was therefore decided that printing this article again would be a good way to round off this special issue.

In paediatrics, good communication between the care provider, the parent(s) and the sick child is essential. The care provider communicates with the child via the parents and the child alternately, preferably in a ‘child-friendly’ manner. By childfriendly we refer to the provision of information whereby the child is taken seriously at his or her own level as a partner in the communication. This does not mean that all communication has to go exclusively via the child, but that the child must be given the opportunity during consultations, depending on his or her age, to participate actively in the discussion. The role of the parents in this is of inestimable value. In a process that took a number of years, the UMC Utrecht/Wilhelmina Kinderziekenhuis has developed a formal ‘child-friendly information’ policy. The introduction of this policy, which is taking place in three phases, is well underway. As part of the first phase, information on the policy and the background to its implementation is being distributed throughout the hospital. This is taking place amongst other things by means of presentations to the department management teams, the child information sector and the management consultations. The second phase involves the development of general information material. To this end, a leaflet for parents entitled ‘Hoe licht ik mijn kind voor’ [How do I inform my child?] is currently under development, along with a leaflet for adolescents in which attention is paid to subjects such as the Wet op de geneeskundige behandelingsovereenkomst (WGBO) [Medical Treatment Contracts Act], anaesthesia, pain and asking questions. In the third phase, which runs partly parallel to the second phase, information material relating to specific illnesses and the treatment thereof is to be developed or adapted. This material is aimed at parents and young people aged between twelve and eighteen years. During this phase, the ‘child-friendly information’ policy will also be discussed in training and continued training courses for care providers.

Principles

The hospital's vision of the way in which policy will be applied in practice can be summarised in six main principles.

1. a) Parents are the most important informants for their young children.
1. b) Young people from the age of twelve are approached directly for the provision of information.

Parents

In the written information for children from zero to twelve years of age, we have expressly decided to use the parent as the point of contact. The fact is that parents are the most important and most stable factor when it comes to informing the child. As far as the child is concerned, the parent is the person who is present the most, who the child trusts the most and with whom the most communication takes place. Parents know their own child better than anyone else and are in the best position to assess the level of development of their child. If a parent is well informed and has confidence in the care provider, this confidence will be passed on to the child. The most important objective of child-friendly information therefore lies in facilitating parents to inform their child. Written information material plays an important, supporting role in this. This does not mean that no information resources at all should be developed for children themselves, just that the emphasis should lie on the supporting function of the parents. In view of this, the written information material actively encourages parents to pass information on to their child themselves. The leaflets that will be compiled based upon the principle formulated will incorporate concrete instructions and tips on how this can best be done. Pictures or other illustrations aimed at children can form part of a leaflet, but only insupport of the written information.

Young people

Young people from twelve years of age form a special group in terms of information. In accordance with the Medical Treatment Contracts Act, they themselves (also) must give their consent for examination and treatment. This means that young people must always be approached directly when it comes to providing information. Given that at this age they are in a complex phase of development, it is important that the written information is tailored accordingly, not only as far as the form is concerned, but also in terms of content.

2. The child is taken seriously.

The term ‘serious’ can be viewed from two perspectives. On the one hand it means that the child is taken seriously in terms of ‘being a child’, and on the other hand that the child is taken seriously (at his or her own level) as a partner in the communications. This means that the child has the opportunity, depending on his or her age, to actively participate in the medical consultations. It is unfeasible to standardise the information requirements of children. Every child is unique and young children will not be capable of specifying themselves what their needs are in terms of information (specific to their illness). They simply do not have the experience or the frame of reference in relation to hospitals, illness and health that adults have in order to do so. The most significant framework that children have is that of ‘being a child’. This is a framework which adults can never again fully gain access to. Only children themselves are therefore in a position to indicate where their interests lie. With this in mind, we make a distinction in our information policy between knowledge that is valuable for the child (‘need to know’) and knowledge that is interesting for the child (‘nice to know’). In our eyes, establishing knowledge that is valuable for the child is a task for both parents and care providers, whilst it is the child’s prerogative to indicate what (else) he or she would be interested to know.

3. Communication based upon trust.

Two important objectives of the provision of information are to reduce fear and to establish trust in the treatment. In the case of adults, the effectiveness of these objectives has been confirmed by means of research, but it is still unclear as to the extent to which this also applies to children. The fact is, both objectives are based upon rational behaviour, something that children do not yet have, or have to a much lesser extent. The opposite to fear is trust. Building up trust is an equally essential objective of the provision of information to children. Trust forms the basis for a good relationship between care provider, parent and child. Children lose their trust and therefore become fearful if incorrect or incomplete information is given.

4. Dialogue instead of monologue.

The provision of information must be geared towards an exchange of information instead of a one-sided lecture. Communication in general and with children in particular is an active process. In order for it to be effective, the care provider must gather information (both verbal and non-verbal) as well as give information. This is why it is just as important that the care provider listens carefully to and understands what the child is saying as it is that the child listens to and understands what the care provider is saying. Sensitivity and responsiveness are key words in this regard: the signals sent out by the child must be heard and must be adequately responded to. This always demands an individual approach, i.e. made-to-measure information provision.

5. The provision of information in a child-friendly manner is a continuous process and not restricted to a particular place or time.

There is no one specific moment, as there is for adults, at which it is suitable to inform children. Informing children is a continuous process. Unlike adults, children do not make the distinction between the ‘hospital world’ and the ‘home situation’. Their need for information should therefore not be restricted to one moment, for example during the outpatients’ department consultation. Furthermore, they have not yet developed the same sense of time as adults. If a child is told that an operation will take place in four weeks, this can be difficult for him or her to visualise. A child will ask questions and demand an immediate answer at all manner of unpredictable moments. This is why it is important that those in the child’s environment (other family members, friends of the family, the school) are also informed as best as possible. Communication concerning the child’s illness must in so far as possible be integrated into the everyday life of the child. The provision of information should therefore not remain limited to the parents and the child him- or herself, but should extend to a broader circle of people within the child’s environment. This is also taken into account in the development of information material.

6. Targeted information instead of ‘PR oriented’ information.

Child-friendliness entails: creating a secure environment and having concern for the development of the child. For a child, security in the hospital is not a given. It is therefore the task of parents and care providers to help children cope with hospitalrelated stress. A misconception in this regard is that a secure environment for the child is primarily an environment in which there are lots of fun and nice things to do. This is only true to a limited extent and activities in this field only really serve to ‘brighten up’ the situation. They can occasionally even have a hampering effect when it comes to trying to allow the daily life of the child to take place as ‘normally’ as possible, such as by allowing the child the opportunity to play and have contact with friends.

A second factor that contributes to the feeling of security of the child is making the child’s environment predictable. This is an important function of the provision of information.
Targeted information to children means that:

• knowledge should in so far as possible be applied to ‘the framework’ that the child and the parents already have;
• basic knowledge should never be assumed, but should be offered routinely, both to parents and children;
• the essence of simple presentation does not lie so much in the method of presentation, but more in the selection of the information to be presented;
• ‘brightening up’ must only play a supporting role, and should never be an objective in itself.

Within the framework of the ‘childfriendly information’ policy, the six principles have now been translated into everyday practice, which means that from now on, all projects or initiatives relating to the provision of information will be assessed against these basic principles. The greatest changes are taking place in the field of written information, because both the existing material and the material to be developed need to be adapted in terms of form and content.

Responses

Although the new policy is still in the early stages of implementation, we received a considerable number of responses from care providers after its introduction. These were on the whole positive, but there was also some criticism. Opinion was high in terms of the practical feasibility of the policy. A small sample of the various comments, each of which is accompanied by a brief response from us, highlights a series of aspects which are relevant in the formulation and implementation of a real policy in the field of providing information to sick children.

‘The provision of child-friendly information in a children’s hospital is surely something that goes without saying? Who else would the information be targeted at?’
It is a misconception to think that child-friendly information is targeted solely at children. Parents are also inextricably tied in with this process. It does not make sense to only create leaflets (containing nice pictures) for children. This primarily has the role of ‘brightening up’ the situation and misses the objective at hand.

‘The new information policy is practical, at least now we do not have to develop material for all age groups.’
It is not feasible to develop and manage separate leaflets for all categories of children. It is therefore also important to make decisions from a practical perspective.

‘Won’t the leaflets be too boring if they do not contain any material for children?’
On the contrary. The leaflets will become more versatile, because you can also add supporting material to them. You can be very creative with this. The most important thing in this regard is not to lose sight of the objective of the material: can parents use the information to help prepare their child for an examination, treatment or admission to hospital? Imagine that you can add a functional drawing, a story that the parents can read to their child or photographs for example. Anything is possible, as long as it serves to assist the parents with informing their child.

‘In the development of information material, much more thought now goes into how to formulate the message, so that parents can really work with it.’
The objective of the leaflet or flyer is clear. The information material becomes more unequivocal and understandable as a result, because it must be of educational value as well as of informative value to the parents. This demands a different approach and a combination of methods and resources is often required.

‘It is good that adolescents receive special attention, as they are an age group which is often forgotten.’
From a legal perspective, adolescents have the right to make their own decisions in relation to examinations and treatment. Understandable information is therefore a necessity in order to allow them to do so. There is currently almost no information material that corresponds to the perspective of adolescents. For this reason we are making this a priority.

This article has previously been
published in Kind en Ziekenhuis, April
2004, special issue on ‘Good practice
2', page 53-57. The author, Jeanine
van der Giessen, is patient communication
advisor at the UMC Utrecht.

You can download a pdf-file as a complete facsimile of this article. By clicking here:
special_issue_preparation_and_information2004.pdf

A number of the contributions made in relation to the provision of information over the past thirty years will be published once again in this special issue. These contributions together provide an overview of the huge efforts that are required in order to ensure the provision of information to children and parents in an appropriate manner. It is telling that the content of this information is still very much of topical interest. The following article sketches the historical backdrop against which the selected contributions were established.

Preparing children for a visit to hospital is a tricky task. A classic, but telling example is that of a mother who prepares her young son for treatment in the hospital. In doing so she tells him, amongst other things, that he is going to get a ‘slangetje’ in his nose [the word slangetje has a double meaning in Dutch: it means a tube, but can also mean a small snake]. When the time comes for this to happen, he resists it with all his might. It later became clear why he had become so hysterical. Because his mother had told him that he was going to get a ‘slangetje’ in his nose, the child had thought that she was talking about the live type.

‘Be honest’

Up until the seventies, it was fairly widely believed that it was better not to tell toddlers and pre-school children who needed to be admitted to hospital anything in advance. At that time, however, changes in opinion were gradually being introduced. The recently established association Kind en Ziekenhuis took great pains to draw attention to the consequences of admission to hospital for children and pushed for the presence of parents during the hospitalisation of a child. In response to this, many doctors and nurses held the belief that the emotional reactions of children could be prevented by telling children in advance what was going to happen to them.

Parents were increasingly advised to tell children who were considered to be of an appropriate age what was in store for them. They therefore acted upon this advice as best they could. They were however unable to accurately convey what exactly was going to happen to them. The guidelines that parents were given by the hospital at that time generally consisted of little more than the instruction that they should not deceive the child but ‘be honest with them about everything’. The guidelines rarely contained information on the procedure and the treatment. Informing parents so that they could in turn prepare their child for hospitalisation was in itself unusual, so the chances of the parents receiving information that was important in the decision-making process concerning the treatment of their child were even slimmer.

‘Hot topic’

In the eighties, informing patients became a ‘hot topic’. This was partly due to the Herziene Erkenningseisen voor ziekenhuizen [Reviewed Acknowledgement Requirements for Hospitals] (1984), in which ‘patient information’ was made obligatory. Patient information desks with information leaflets in the house style appeared in hospitals and a new occupational group was formed, known as ‘patient communication advisor’. With great enthusiasm these officials launched new activities in the field of information and with equal fervour developed ‘products’ that were intended for the purpose of informing and preparing children. It has to be said that Kind en Ziekenhuis initially welcomed these activities, that was until the realisation began to hit home that the initiatives served more to benefit the hospital’s image than the interests of children and their parents.

Video camera

In many cases, the activities also had very little to do with the communication between children and parents on the one hand and doctors and nurses on the other hand. This is illustrated by the fact that video films were recorded on a regular basis and shown to children between two and twelve years of age, with a view to collectively preparing them for an anaesthetic or an operation, for example, thereby ignoring the fact that a pre-school child has a very different understanding of illness from a child who has already almost finished primary school. It was also not unheard of for an ENT doctor to film a tonsillectomy and to then show his handiwork to his future patients… Kind en Ziekenhuis therefore lobbied for money (from sponsors) and time to be spent on a film for parents which would clarify what a child will see, hear and feel when being given an anaesthetic and when coming round from an anaesthetic, for example. This way, parents would be better equipped to prepare their child thoroughly for the experience. Unfortunately, however, the plea made by Kind en Ziekenhuis never really found receptive ground.

A pre-school child has a very different understanding of illness from a child of twelve

Initiatives of this kind usually got bogged down in a debate about the supposed advantages and disadvantages.

Enthusiasm

Similar debates were often sparked in relation to information leaflets for children. The information was rarely targeted at a specific age group with an appropriate use of language for that group, because this would mean that several versions of the same leaflet would have to be created for the different age groups. It also cost a great deal of effort – and still does to this day – to curb the enthusiasm of teachers who want to prepare healthy young children for a possible admission to hospital in the future in the classroom. Hospitals were, and often still are, very willing to collaborate on teachers’ initiatives by giving pre-school classes guided tours of children’s wards.
Kind en Ziekenhuis should also search its own conscience as far as this is concerned. It was sometimes not easy to curb the enthusiasm of volunteers in our own ranks for these sorts of exercises. For these people, organising projects for children was a welcome step towards organising information sessions for parents in the schools concerned.

Environmental studies

All in all, once a certain approach to this issue had been established, it became difficult to change course. Kind en Ziekenhuis did not abandon the ‘schools project’, but tried to channel the enthusiasm into projects that more closely resembled those undertaken in environmental studies (what is a hospital, who works there and what is the daily schedule), in a similar way to how attention is paid in schools to learning about the post office or the supermarket for example.

Informed consent

The transition to the nineteen nineties was characterised by discussions concerning the legislative proposal in relation to the Wet op de Geneeskundige Behandelingsovereenkomst (WGBO) [Medical Treatment Contracts Act]. After the proposal had been adopted by the cabinet, it was passed to the Council of State in mid-1989, but it would take until 1995 for the law to finally come into force. One of the characteristic features of the WGBO was the introduction of informed consent. This means that a patient must be well informed in regard to his or her treatment, the possible risks and any alternatives before he or she can decide whether to consent to the treatment. The law pays attention amongst other things to the position of minors who need to undergo medical treatment. The law was evaluated for the first time in 2000. It was found that the application of the law in practice often proved problematic and many care providers were not aware of the rules in relation to minors.

Site

Since its establishment approximately thirty years ago, Kind en Ziekenhuis has been endlessly reiterating the importance of ensuring that parents and children are well informed. It has always been an essential point for attention and it speaks for itself that even the developments after the WGBO had come into force were followed with Argus’ eyes. Time and again, extensive attention has been paid in the special issues of the quarterly publication Kind en Ziekenhuis to the introduction of the new law, the interpretation and application of this law in practice and the results of the evaluation. Numerous lectures have also been devoted to this subject and extensive information has been published on the internet for parents as well as for professionals, not forgetting minors. The website ‘JA dokter, NEE dokter’ [YES doctor, NO doctor] has been created for the benefit of the latter. The information on this website is presented in the form of a comic strip. For the benefit of the three age groups that are also distinguished by the law, a text is available that has been specially adapted for these different age groups. Following the launch of this website, many doctors contacted the association to tell us that the content of the site had also proved highly informative for them. Or as one of them said: ‘Only now have I really got my head around it’.

You can download a pdf-file as a complete facsimile of this article. By clicking here:
special_issue_preparation_and_information2008.pdf

Design strategies that provide a better environment for preterm infants

Preterm infants are born during the most crucial phase of brain development, meant to occur in utero in preparation for birth at term. Instead, with preterm birth, this complex developmental process occurs in a hospital setting that is far different from the expected environment in utero.

In this presentation I will talk about the many challenges the Newborn Intensive Care setting presents to normal brain development, and will suggest design strategies that provide a better environment for preterm infants. In particular, we will develop the case for encouraging family participation in the care of the preterm infant, and especially for prolonged and intimate maternal-infant interaction. Even the needs of the caregivers for an appropriate environment cannot be forgotten, so I will address these concepts and concerns as well, in an attempt to present a design strategy (utilizing the single family room concept) that meets the needs of the babies, families, and caregivers.

Robert White, MD is head of the Newborn ICU at Memorial Hospital, South Bend Indiana, USA.
Presentation at the Conference Child-Centred Care = Family-Centred Care, organised by Kind en Ziekenhuis , the Dutch member association of EACH.
Rotterdam, December 1, 2008.

Considering the child like a person, respecting his or her specific needs and his or her rights (in and outside the hospital) will bare importance on this child's future and on how, as an adult, he or she will behave towards his or her own health and will care for it.

Thus, the way children and their parents are welcomed in a hospital, for example, is the reflection of the consideration that a society has for its members, the place it keeps for its children, their needs, their rights, and specifically in a hospital setting, their right to health. Respecting children's rights to health goes beyond a moral and legal obligation.

Thus, respecting all children's rights in the field of health is a project for which positive effects will be seen in the long term. Caring for children's rights to health is not only a question of law and rules but also a question of acting to ensure that these rights are being implemented.

APACHE (Association Pour l'Amélioration des Conditions d'Hospitalisation des Enfants) in 2005 published a report on the subject of the health of the child in the hospital, the health of the child outside of the hospital and the ways the child’s interests are being represented in France.
This report is based on two surveys realized by the organization into the actual practices of hospitals, on a survey on the place for parents of hospitalized children, a review of current literature on the topic, on the mails and testimonies received by the organization (mails from parents, professionals, organizations), and on telephonic interviews with professionals working in the field of children’s health.

This report bases its findings on the EACH Charter on hospitalized children, and also on the International Children’s Rights Convention (ICRC) and criteria stipulated by a French accreditation agency.

You can download the complete report here:

la_sante_des_enfants_en_france-translation.pdf

Implementation of the ten points of the EACH Charter needs a new approach in the training of doctors and nurses involved in the care of sick children. They need to regard children and their families/ carers as a unit and accept children as equal partners in all areas of health care. Children must be treated with understanding and sensitivity and their developmental needs met. They must be cared for in an environment suited to their needs and by staff trained in children's care.

Institutions and individuals dedicated to the rights of children can help EACH by promoting the acceptance of the principles of the EACH Charter by health authorities and governments. This will ensure the best possible care for sick children.

Some of the goals of the EACH Charter are still not achieved in Europe. Goals such as:

• The right of children to have their parents with them in hospital is sometimes restricted and made subject to a particular age or illness of the child or to the social standing of the family.
• The special needs of adolescents in hospitals are often not sufficiently addressed.
• In the daily hospital routine little regard still is given to what we know today about the psychological, emotional and social needs of children of different ages and developmental stages, their origin or their social or cultural background.
• Pain control for children is still a neglected area.
• Guidance for staff on established practice for action when a sick child shows signs of abuse or maltreatment is often missing.
• Children are still being admitted to adult wards.

When implementing the Charter in all European countries it furthermore has to be considered that

• Health care is subject to varying economic conditions and constraints.
• Health services are organised differently from country to country.

We invite parents...

to provide or arrange to provide the support and care their children need.

We invite those in public office...

to create the framework within which the parents may become active in the care of their child in hospital.

We invite those involved in the care of sick children...

to get acquainted with the rights of children in hospital and to act in accordance with those rights.

Implementation of the ten points of the EACH Charter needs a new approach in the training of doctors and nurses involved in the care of sick children. They need to regard children and their families/ carers as a unit and accept children as equal partners in all areas of health care. Children must be treated with understanding and sensitivity and their developmental needs met. They must be cared for in an environment suited to their needs and by staff trained in children's care.

Institutions and individuals dedicated to the rights of children can help EACH by promoting the acceptance of the principles of the EACH Charter by health authorities and governments. This will ensure the best possible care for sick children.

A common practice

The practice of restraining children, i.e. forced immobilization, during clinical procedures is still common in many countries. In many situations lack of experience or knowledge of other forms of intervention and alternatives are the main reasons for this practice.

Regarding invasive procedures requiring immobility and other painful or stressful procedures, forcible restraint is an unacceptable technique in direct contradiction to the child’s right to protection from all forms of physical or mental violence. It is not in the best interest of the child.