This study was undertaken to determine whether families of children with cystic fibrosis were experiencing difficulties in meeting family needs and in maintaining normal family relationships. It was found that families were not deprived of the essentials of living, but they were not able to maintain their usual pattern of family relationships. Time and energy precluded carrying on activities with each other and with the children; and there was breakdown in their ability to communicate adequately between themselves and the children regarding important family issues.
In order to preserve the family as a functioning unit, someone has to be concerned about the entire family. Of necessity, the family has focused on the sick child, leaving the physician, the nurse, the social worker and/or the social agencies to help the family refocus on its total situation, rather than just a part of it.
Traditionally, the mother takes care of the sick child. It is she who takes the child to the doctor's office and is responsible for carrying out his recommendations. In the care of a CF child, she assumes a heavy burden and frequently is fatigued from this responsibility. Because she is so tired and so occupied, she may misunderstand or distort what she is told by the physician, and may not be able to tell her husband or the children what they need to know in order to participate in family activities and in the care of the CF child.
This situation can easily lead to misunderstanding and tension within the family. To avoid this, both parents could be encouraged, at some point, to come together to the physician's office for discussion. Such discussions could lead to more consideration and appreciation being given to each other. It might lessen the tendency for each to blame the other for the child's illness and could avoid the feeling voiced by one mother, "I would like to blow him out of his chair so that he would help me and understand what I go through."
We also need to realize that the CF child is frequently aware of the demands he makes on the family. If these demands are not discussed freely, then everyone is caught in a "web of silence" revolving around his own feelings of frustration. This creates a burden for everyone, including the CF child, and if not discussed it can impair the psychological functioning of all members.
The CF child needs to be encouraged to participate in his own care program and to assume some responsibilities for himself. He should not reach the age of seven being unable to tie his own shoes or dress himself, as has been observed in some CF children. It would seem feasible, therefore, that the CF child should have an awareness of what is wrong with him, and what his abilities and limitations are.
The other siblings should also be given as much explanation as possible because they, too, are part of the family and attention and care is being diverted from them. This explanation could make for more understanding on the sibling's part. While it would still be difficult for him to accept some of the decisions made (such as why the parents could not get home from the hospital in order for him to use the family car for a senior prom), he would know that it was the situation that was causing the decrease in attention and care rather than rejection of him by the parents.
In order to give these families as much assistance as possible, the community's resources should be utilized. Frequently, the parents are unaware of these or need encouragement to avail themselves of services. The homemaker service or visiting nurse service could free the family from constant care; the local youth program could be helpful to the siblings in the family, and Family Service Agencies could be used for counseling on family problems.
In summary, this study points up the need for the total family to have an understanding and awareness of CF and to share such knowledge with one another; that all problems of the family have to be considered and not just those of the CF child; and that help from other professional people should be utilized along with sources of the community.
Hearing the Voice of a Shadow Child: Healthy Siblings Experience of Cystic Fibrosis and Other Life-Threatening Conditions
