Pediatric Annals

Counseling Families of Children With Cerebral Palsy

Mark L Wolraich, MD

Abstract

The pediatrician's most important and most difficult role in providing care to children with cerebral palsy is communicating with families. Cerebral palsy is a static but permanent injury to a child's motor cortex. As such there is nothing that physicians can do to cure this condition, and unfortunately while therapy is helpful, no medicine or surgery will significantly ameliorate the symptoms. Advances in modern medicine have, however, created a climate where physicians are expected to provide cures, or at least dramatic habilitation. Since cerebral palsy is not a condition where this expectation can be met, both families and physicians can become frustrated. Providing good communication and appropriate counseling are the most important roles for physicians in these circumstances. This article will highlight some of the important issues in counseling families of children with cerebral palsy, and provide suggestions for dealing with these issues.

THE INITIAL INTERVIEW- AFFECT

The pediatricians first encounter with parents of children with cerebral palsy is often at the time of diagnosis. This is a very important time in the lives of the parents, and can influence the tone of the relationship they develop with their child and their physician. The normal reactions of parents in similar situations have been well described by Drotar et al. ' These reactions usually include shock, denial, sadness, anger, adaptation and reorganization. While parents go through most of these feelings, the intensity and duration of these feelings will vary greatly. For instance, denial may be strong and prolonged in one parent and almost absent in another. The physician should not assume that all parents go through the same reactions in a stereotypic manner. The physician needs to probe and listen to the parents in order to determine their particular reactions.

Most parents wonder what they did wrong. Feelings of guilt will vary greatly from parent to parent. The role of the pediatrician is to clarify any information that might lead to unrealistic feelings of guilt while assuring the parents of the normalcy of their reaction. A common mistake made by some physicians is to close the discussion about the parents' guilt feelings by offering information only. Statements like: "You shouldn't feel guilty because ..." may cause parents to refrain from discussing persistent unrealistic feelings for fear that their physician will think them stupid or incompetent. It is best to clarify the facts, but also to state that the parents may still have persistent feelings of guilt, and if so, they should feel free to discuss those feelings.

The first conference with the parents should focus mainly on the parents' reaction to the diagnosis. Statements such as: "I know this must be difficult for you," or "This is quite shocking information," will let parents know that their turmoil has been experienced by other parents in the same situation. It is even helpful for the physicians to express their own feelings with such statements as: "It is difficult for me to have to tell you." This not only helps to facilitate the discussion, but also conveys the physician's own humanness. There is also a need to help parents identify supportive people to turn to such as grandparents or clergy. There may be long periods of silence during the initial session. These periods of silence can be uncomfortable for the physician but helpful in allowing the parents to grieve and gather their thoughts. Literally holding a parent's hand, or putting a hand on a parent's shoulder is an extremely effective method for a physician to quietly express empathy.

INITIAL INTERVIEW- CONTENT

In addition to helping parents deal with their feelings, the initial interview should…

The pediatrician's most important and most difficult role in providing care to children with cerebral palsy is communicating with families. Cerebral palsy is a static but permanent injury to a child's motor cortex. As such there is nothing that physicians can do to cure this condition, and unfortunately while therapy is helpful, no medicine or surgery will significantly ameliorate the symptoms. Advances in modern medicine have, however, created a climate where physicians are expected to provide cures, or at least dramatic habilitation. Since cerebral palsy is not a condition where this expectation can be met, both families and physicians can become frustrated. Providing good communication and appropriate counseling are the most important roles for physicians in these circumstances. This article will highlight some of the important issues in counseling families of children with cerebral palsy, and provide suggestions for dealing with these issues.

THE INITIAL INTERVIEW- AFFECT

The pediatricians first encounter with parents of children with cerebral palsy is often at the time of diagnosis. This is a very important time in the lives of the parents, and can influence the tone of the relationship they develop with their child and their physician. The normal reactions of parents in similar situations have been well described by Drotar et al. ' These reactions usually include shock, denial, sadness, anger, adaptation and reorganization. While parents go through most of these feelings, the intensity and duration of these feelings will vary greatly. For instance, denial may be strong and prolonged in one parent and almost absent in another. The physician should not assume that all parents go through the same reactions in a stereotypic manner. The physician needs to probe and listen to the parents in order to determine their particular reactions.

Most parents wonder what they did wrong. Feelings of guilt will vary greatly from parent to parent. The role of the pediatrician is to clarify any information that might lead to unrealistic feelings of guilt while assuring the parents of the normalcy of their reaction. A common mistake made by some physicians is to close the discussion about the parents' guilt feelings by offering information only. Statements like: "You shouldn't feel guilty because ..." may cause parents to refrain from discussing persistent unrealistic feelings for fear that their physician will think them stupid or incompetent. It is best to clarify the facts, but also to state that the parents may still have persistent feelings of guilt, and if so, they should feel free to discuss those feelings.

The first conference with the parents should focus mainly on the parents' reaction to the diagnosis. Statements such as: "I know this must be difficult for you," or "This is quite shocking information," will let parents know that their turmoil has been experienced by other parents in the same situation. It is even helpful for the physicians to express their own feelings with such statements as: "It is difficult for me to have to tell you." This not only helps to facilitate the discussion, but also conveys the physician's own humanness. There is also a need to help parents identify supportive people to turn to such as grandparents or clergy. There may be long periods of silence during the initial session. These periods of silence can be uncomfortable for the physician but helpful in allowing the parents to grieve and gather their thoughts. Literally holding a parent's hand, or putting a hand on a parent's shoulder is an extremely effective method for a physician to quietly express empathy.

INITIAL INTERVIEW- CONTENT

In addition to helping parents deal with their feelings, the initial interview should provide information. Because of the emotional climate, parents will not remember most of what they hear during the first interview. This means information should be limited to essentials. Subsequent interviews will allow time for more in-depth explanations and recommendations. When one parent cannot be present or when information needs to be conveyed quickly, such as when informed consent is required for surgery, using a recorder and providing the audiocassette recordings of the interview to the parents can be helpful. Two studies have shown the efficacy of this technique in helping parents learn and retain information.2,3 Tape recording the interview allows the pediatrician to give more detailed information than the parent or parents are likely to remember. The parents can then listen to the tape later when they are more calm. They can also use the tape to explain their child's condition to other close relatives. Sometimes, even though the parents understand their child's problem, it is difficult for them to explain it to others, and they are often asked to do so. Recording the actual session is much more personal and individualized than commercial materials that might be available.

The diagnostic terms used also need to be considered carefully. Some terms such as cerebral palsy and mental retardation are likely to cause a strong parental reaction. This does not mean that the terms should be avoided if appropriate. It does mean that it is important to determine what the terms mean to the parents. Inaccurate stereotypes or their experience with an atypical case may make them unduly pessimistic. Parents will usually not attempt to clarify the terms themselves unless they are asked, because they are afraid of seeming ignorant.

When parents learn they have a child with cerebral palsy, the two questions most frequently asked are: Will the child walk? and will the child be mentally retarded? These two questions are difficult to answer when the child is an infant. Unless the pediatrician is very sure of the prognosis, it is better not to answer these questions directly. Eithet overly optimistic or overly pessimistic projections are likely to come back to haunt the predictor. It is best to acknowledge the parents' appropriateness in asking the questions and to explain the difficulty in predicting future functioning. It also helps to acknowledge that the uncertainty is frustrating and frightening.

It is difficult to be the bearer of bad tidings and most pediatricians will try to make the situation easier or less traumatic for the parents. Sometimes this can result in the physicians being misunderstood. Other terms for cerebral palsy such as "nonprogressive neuromuscular dysfunction" may not have the same emotional impact, but also will not convey the true nature of the disability to the parents. It is best to use the terms the parents are likely to hear in the future and which will most effectively tell them what they are dealing with, while supporting them in their reactions to the term.

OTHER SUPPORT

It is frequently helpful for parents of a newly diagnosed child with cerebral palsy to speak to other parents of children with cerebral palsy and to participate in parent groups such as those arranged by United Cerebral Palsy. There are aspects of their new experience which can be shared better this way than with professionals. However, parents may not be ready to talk to other parents immediately after finding out about their child's diagnosis. Many times they initially want some privacy and need to first cope with the diagnosis themselves before turning to others. One must also be cautious because mismatches between parents can make for awkward situations. For instance, if the contacted parents are extremely enthusiastic and dedicated parents, it may be difficult for parents who have mixed feelings about their child. Care should be taken in arranging contacts. It is also important in arranging the contact, to have the contact parents call the new parents because the new parents are less likely to make the contact on their own, for fear of imposing on the other family.

Another difficult situation is when parents disagree between themselves. The care and management of children in our society still usually remains the primary responsibility of the mother. This means that she is frequently the person who brings the child in for all the evaluations and therapy sessions. Fathers have less opportunity to learn about their child's condition directly. The mother then is put in the role of not only understanding her child's condition, but also explaining it to her husband. Culturally, the father is also less able to express his frustrations and emotional distress. It is important for the pediatrician caring for children with cerebral palsy to encourage the participation of husbands and to offer to meet directly with the fathers.

COUNSELING OTHER FAMILY MEMBERS

There are other family members the pediatrician needs to consider. Psychiatric difficulties have been found in normal siblings of handicapped children.4 Siblings frequently have misinformation about their sibling's condition and can fear that they are the cause of their sibling's condition or that they may somehow catch the same condition. Siblings can frequently develop anger, resentment or guilt because the child with cerebral palsy demands so much of the parents time, and the sibling may be required to help with the child's care. The sibling may have no one to talk to about these fears and resentment. They may be hesitant to bother their parents particularly if the parents have difficulty accepting the problem themselves. The parents in this situation may close off possibilities for communication with the siblings. It is even more difficult in situations where cerebral palsy is felt to be a socially unacceptable condition by parents or the sibling peers.

Because the disabled child has many medical needs, the physician's attention is focused on this family member. It is important to identify the emotional conflicts in siblings. This can be done most easily by the primary care pediatrician because he or she is usually providing care for all the children in the family. It is important to meet with siblings individually to assess their feelings so that steps can be made to encourage counseling if needed, or to encourage the parents to deal sensitively with siblings. The physician can help parents identify the need for counseling if it is appropriate.

Grandparents are also important family members who should not be overlooked. Although society has been changing, grandparents still frequently play an important role in family life. The better informed they are about their grandchild's condition, the better they will be able to cope and support the parents. It is important for physicians to offer to meet with grandparents or other close family members if the parents feel this would be helpful. Tape recording the initial counseling sessions, as stated previously, can also be of benefit in this situation because it allows the parents to play the tape for the grandparents, relieving them of the responsibility of being overnight "experts."

OTHER ASPECTS OF COUNSELING

An inordinate emphasis has been placed on making sure that the parents accept their child's condition. However, spending a great deal of effort to attain this goal is not always productive. It is not as important to determine how parents describe their child's condition, as it is to determine what services they obtain and what demands they place on their child and the professional staff involved in the child's care. It is entirely possible for parents to obtain appropriate services for their child and have realistic short-term goals while refusing to accept the long-term implications of the diagnosis. Time and experience are the keys to the parents' acceptance of their child's condition.

A common complaint voiced by parents is that professionals frequently fail to recognize parents as knowledgeable resources in the decisions that need to be made about the child's care. This is stated eloquently by a group of professionals who are also parents of developmentally disabled children.5 It is important, where possible, to include the parents in decisions about their child's therapy. It is also important to encourage parents to share any new information they hear about new therapies. This will sometimes help identify new services, but will also help parents to avoid spending time and effort on unsubstantiated therapies.

Anticipatory guidance is another important role of the pediatrician, because he or she will follow children and their families from the birth of the child to adulthood. There are certain times that can be anticipated as being stressful in the course of the development of a child with cerebral palsy. These are listed above.

It is helpful to discuss these periods with parents before they occur so that the parents can prepare for them and, therefore, be better able to cope with the stress that these times create.

In situations where the pediatricians are caring for children with severe cerebral palsy, it is also important for the physician to remain as nonjudgmental as possible. Some parents are willing to sacrifice much of their own comforts and way of life while receiving minimal feedback from their severely disabled child. While most individuals including the physician would not be willing to make the same sacrifice, it is a mistake to automatically view this as unusual or pathological behavior. Some families report alienation from their local physicians who have tried to convince them that their choice of action was inappropriate. This opinion should only be expressed when other family members, particularly siblings, are being adversely affected by parents who are devoting all their time to the child with cerebral palsy. By attempting to keep their child at home, the parents are in most cases providing a better and more loving environment than can be provided in any alternative placement and providing it at lower cost to the state. Helping parents to identify community resources such as daycare and respite care can help the parents to continue to provide care for their child in a way that makes them comfortable.

Children with cerebral palsy frequently have multiple medical, psychological, language and educational needs. This requires the families to interact with professionals from a number of disciplines and can be very confusing. The information can be contradictory, or care recommendations in one area can impact on other areas. For instance, a change in seizure medication may change the child's muscle tone and therefore his or her needs for adaptive seating devices, and may also affect the child's cognitive performance.

In order to deal with each child as a whole person rather than a collection of separate problems, interdisciplinary communication is essential. This can be difficult, especially when the professionals work for different agencies such as a hospital, a school, and a social service department. The importance of developing interdisciplinary services has been the thrust of programs for developmentally disabled children such as the University Affiliated Programs and it has been adopted by the educational system under PL-94-142 (the Education for All Handicapped Children Act). It is important for the pediatrician to see that this approach is utilized with his or her patient. If programs such as Crippled Children Services are available, this may be the best resource. Cooperation with the school system by attending the child's staffing or at least providing a written report can also be helpful. Where no coordinated services are available, the physician may need to take over this responsibility and serve as the professional who pulls the other professionals together to see that coordinated services are provided. Unfortunately, to date, third party payers have not recognized the importance of this coordination and are not willing to provide the financial support required to adequately compensate for the time it requires. However, the importance of this coordination cannot be stressed too strongly. Care cannot be optimal, and can often be an added burden and is frustrating to already stressed families, if interdisciplinary coordination is not provided.

In summary, the role of the physician in the care of the child with cerebral palsy must be seen in a flexible and not altogether "medical" light. Long before modern technical medicine care, Tolstoy expressed this in War and Peace:

Their [doctors'] usefulness did not depend on making the patient swallow substances for the most part harmful (the harm was scarcely perceptible, as they were given in small doses), but they were useful, necessary and indispensihle because they satisfied a mental need for the invalid and those who loved her.

It is the "mental" needs of the child and family .. . for empathy, for information, for ways to cope with the long road of services and care needs that lie ahead . . . that the physician can best serve.

REFERENCES

1. Drotar D, Baskievicg A, lrvin N, et al: The adaptation ot parents to the birth of an infant with a congenital malformation: A hypothetical model. Pediatrics 1975. 56:710-716.

2. Wolraich MD, Healy A. Henderson M: Audio-cassette recordings: An aid to parent counseling. Spma Bifida Therapy 1979; 1:96-99.

3. Wolraich ML, Lively S, Schule F. et al: Effects of intensive initial counseling on the retention of information by parents of children with meningomyelocele. Journal of Developmental and Behavioral Pediatrics 1981: 2:163-165.

4. Fbznanslci E: Psychiatric difficulties in siblings of handicapped children. Pediatrics 1969, 8:232-234.

5. Tumbull AP. Turnbull HR: Parents Speak Out- Vieus from the Other Side of the Two- Wir. Mirror, Columbus, Ohio, Charles E. Merrill Publishing Co.. 1978.

10.3928/0090-4481-19860301-09

Sign up to receive

Journal E-contents