copyright Olwen Harkema

1994 - Psychological damage as a result of a lack of parental participation

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.

Otwen Harkema

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.

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