The moment parents are informed that their child has been born with or has acquired some developmental disability is remembered, because it is something which completely changes family life in the long run. Every parent experiences a process of mourning and abandoning fantasies about the child held before, all in a very short period of time. Then there is the phase of recovery and adjustment to new circumstances of family life. Various studies showed that timely counselling and informing about the nature of their child's disability, as well as about the possibilities of recovery and education, significantly reduce parental stress and their concerns and help them in the process of adjustment to raising their child.
There are different ways in which children cope with feelings of uncertainty, helplessness, fear and grief when a family member is ill. The question parents ask themselves in such situations is at which age the child can understand the concept of disease.
Understanding the concept of disease
It is well understood that all children, including the youngest ones, share the atmosphere filled with emotions with others in their environment and assume even the content they do not understand. They feel the emotions of their parents and close persons. This means that, although young, children younger than four do not necessarily understand the concept of disease, but they participate in the atmosphere emerging from a situation when a family member is ill and they behave accordingly.
The child may become agitated, prone to behaviours below his/her age, demand attention, while older children may show attention problems and agitation, which may turn into aggressive behaviour due to the perceived loss of safety and routine in his/her everyday life. Older children (older than 7), can be more conscious of the meaning of disease. Although they do not necessarily ask open questions about the type and course of the disease, they tend to think about disease in general, relating it to their previous knowledge and experience and, more that we can assume, they can be preoccupied with the consequences of mother’s or father’s disease for them.
How can we tell the child about disease in the family?
How we can tell the child that his/her mother, father, brother or sister are sick so that the does not experience that as a huge stress depends on the age of the child. We should be guided by the need to communicate true information in a way which the child can understand. It is of utmost importance that the child feels protected by the caring approach of a close person. Therefore, the person who talks to the child should be the one who can cope with his/her anxiety in a balanced manner and show an honest and caring stance. The child needs to be informed about the treatment and what consequently may change in everyday activities of the family.
Parents often believe that they are protecting their child if they hold back some things. Is it protection of the child, or should we do the opposite, inform the child about the details of therapy and treatment?
One of the prejudices which adults hold related to child’s reactions is that the child is not aware of the situation and that it is better not to sadden the child by talking about it. The other extreme would be informing the child about every smallest detail related to the disease of a loved one, and burdening the child with the data which we are not even sure the s/he can understand or how s/he will feel about them.
Information given to younger children should be simple, without unnecessary details and specifications. We can expect that older children and those with wider knowledge, after the initial information, will ask more detailed questions and ask for explanations themselves. If parents do not have some information or if they do not know them at that moment, it is important to admit it to the child and to add that they will inform the child about everything important for their family. It is of utmost importance not to project our fears on inabilities to cope with uncertain outcomes onto the child, and to give exact information about the current situation.
Every ill person has his/her unique way of coping with the new situation causing changes in our own adjustment and in communication with other family members, which altogether impact on the whole organisation of family life. It also means that everybody contributes in the attempts to establish a new balance in family life which is often difficult.
Confronted with a more severe disease, at the beginning family members often react with denial and refusal to accept the situation, which is followed by depression and grief related to the possible course and outcome of the disease and finally by acceptance and adjustment. The process is demanding and painful for all family members, especially for the child for whom it even may be relatively traumatic.
It is not the same if the family was confronted with disease suddenly or gradually and expectedly. If it was gradually, the family was given an opportunity to prepare resources and adjust better, which may start with searching for and finding relevant information about the disease and available treatments, personal preparation for coping, asking for support and help from professional services, family or friends, which certainly alleviates the feeling of helplessness an individual feels in coping with disease.
Elevated levels of anxiety accompanying disease enhances emotional responses, which also increases the probability of negative emotions. Besides worries relative to disease, negative reactions from other family members who care of the ill family member can additionally burden the child. Families which have difficulties in functioning, show rigidity and disorganisation in stressful situations. Families which successfully cope with difficulties, can go through such crisis even strengthened by experience, feel closer and show more trust among family members.
In case one family member is ill, priorities change, and fulfilling the needs of some family members is delayed for a shorter or a longer period of time. If it is a chronic disease and life conditions have to be changed in the long term, besides care and selflessness, it is important to take care that disease of one family member does not become exclusive and central organisational principle of the family, but that the needs of other members are also respected to some degree. It is especially important in families where one of the children is ill, and other children become neglected and start showing difficulties in psychological adjustment.
It is not rare that family members, apart from increased responsibilities, efforts and investment of energy involved in the care of the ill family member, also have to cope with their personal feelings of guilt, helplessness, anger and other possible emotions which may burden and confuse them.
Sharing increased responsibility and care
Other family members have to find the way of sharing their increased responsibilities and care so that the balance of each of them is not seriously shattered. It is necessary to avoid situations where some family members are under too much burden, while others avoid to be involved in the care and help to the ill family member, which may be a reflection of personal anxiety related to disease, or the style of functioning in the family.
Commitment to providing care for the ill family member can vary from being overly involved to keeping completely out of it. Both patterns have negative consequences, although commitment proved to be a predictor of good functioning of the family, the cohesion reflecting the strength showed by family members as individuals and as a group in critical moments. How a family will accept the disease of their member also depends on the messages communicated in the family, on the family narrative and myths and on the impact of unconscious fantasies of family members and the whole system of beliefs in that family.
In such situatiosn, which are unique processes for every family, it is especially important that the child shares painful experience with other family members, and that the child is not excluded from the process of treatment experience, especially that the child is not taken away from the family to protect him/her. Closeness, connection and trust among family members proved to be the most important protective factor for the child in such situations.
Written by: Sanja Jusufbegović, clinical psychologist
Other texts by the same author:
Shared Custody – questions and dilemmas
Sleep disorders in pre-school children
Eating disorders in pre-school children