Delivering difficult news.
Despite increasing evidence to the contrary, this erroneous belief is often reinforced by the media and some professional literature, both of which continue to blame parents, especially mothers, for children's physical disabilities and mental illnesses. The unfortunate result of such experiences in the lives of developing professionals is that many unwittingly carry negative stereotypes into their encounters with parents. These prejudices interfere with professionals' perceptions and ability to communicate constructively. These negative stereotypes will be broken down only when open-minded professionals are given opportunities to discuss their perceptions and attitudes with parents.
Parents = experts and partners
Professionals need to appreciate that parents are experts about their own child and can serve as teachers to professionals. Parents can also be partners in the process of diagnosis and treatment. However, rather than viewing mothers of children with disabilities as experts, professionals have misperceived them as hostile, demanding and probably psychopathological. But speaking out on behalf of the needs of loved ones is far from psychopathological; recent studies of female development make it clear that such behavior is a way for women to assert themselves in a healthy, appropriate fashion.
Techniques for successful collaboration
Setting: It is usually important for professionals to meet with parents separate from the child. Meetings should be scheduled for a time that is convenient for the parents, and with the understanding that the conversation can be continued at a second meeting. Participants will be more likely to engage in active give and take when: 1) each participant is seated in an equally comfortable chair; 2) all are at the same eye level; 3) each is seated at a conversational distance from others; and 4) each can take notes comfortably.
Thus, a separate room or seating area with a desk or table and adult-sized chairs is more appropriate than using a medical examining room or a room with furniture designed for young children. In addition, a separate setting provides the uninterrupted privacy parents need and deserve.
Including Dad: Some professionals always seem to expect mothers to attend meetings--as though they are at home with nothing better to do. At the same time, professionals often convey the unspoken message that fathers need not attend, because they are not involved enough anyway. Including fathers may require a special invitation. Not only does such an invitation counteract common male parenting patterns, it also communicates the view that Dad has an important role. Even divorced fathers without custody can participate.
Number of professionals? Sometimes information is presented to parents at a "team" meeting in which each professional involved has a turn presenting the findings in a particular area. In medical teaching settings, an "entourage" of medical students may attend. Some school systems convene team meetings because they believe that such meetings are mandated by Federal law; in fact, the law requires only that three professionals attend meetings with parents at which individualized education plans (IEPs) are created.
Not surprisingly, most parents report feeling overwhelmed when the number of professionals exceeds the number of parents! I believe that meetings including many professionals discourage parental participation and can contribute to a disorganized approach to the child and family. Meetings with one or two key professionals are usually preferable. One of the professionals present should be the person who will be involved in follow-up communications with the parents. Some parents also find the participation of a trained parent advocate very helpful.
Considering emotional impact
Communicating that a child has a "problem" is a challenging responsibility. No professional can make sad news sound like good news. Instead, the professionals can provide an opportunity for parents to begin the difficult process of mourning the loss of the "perfect" child they had anticipated and get on with the job of parenting the child they have.
For some professionals, delivering sad news to parents is an everyday, relatively routine, task. In dramatic contrast, the moment of hearing that news for the first time is an experience parents will never forget. The memories formed in those few moments will be painfully reviewed again and again in the years to come. This encounter can influence the perceptions of professionals that parents carry into the future--sometimes in negative, irreparable ways.
Because of the emotional impact of this meeting, professionals must approach it with compassion and an appreciation that delivering sad news in an appropriate manner takes time. Sad news cannot be constructively presented by a professional who is standing with one hand on the doorknob, poised to go on to the next "case." It requires a step-by-step discussion with everyone seated--and a readily available box of tissues.
Professionals always need to speak in understandable language. Few people--even the most well-educated--understand technical medical and educational terminology.
Step by step
A thoughtful, step-by-step manner of presenting difficult news takes into account parents' predictable shock and distress and provides appropriate educational information. The time to begin preparing parents for the possible, eventual presentation of difficult news is during the "history"--the initial meeting that occurs prior to an evaluation for the purpose of reviewing known, relevant facts about the child's condition. Professionals can actively involve parents in this process by asking for their observations of the child's development in the areas (for example, hearing, language, motor skills or memory) that the team will be evaluating. Professionals can also ask parents to talk about their goals for the evaluation process.
The meeting in which the difficult news is to be delivered can begin with a review of the parents' observations and concerns. This can be followed by the professionals' observations, which confirm or further clarify those of the parents. Then, the professional can gradually move on to the diagnosis and prognosis by taking parents "inside" the child's body to explain the relationships between internal processes and observable behaviors in understandable, everyday language.
Finally, professionals must present the difficult news using specific diagnostic terminology. Because some professionals want to "protect" parents from the distress associated with these terms, they may postpone using specific terminology or rely on euphemisms. However, since parents are usually worried and aware that something is amiss, avoidance of diagnostic terms is not helpful; it only leaves parents fearful and uncertain.
In fact, knowledge of specific diagnostic terminology empowers parents to learn and grow in three ways. First, by speaking openly about the diagnosis, professionals and parents can discuss possible future problems and means of coping. Second, knowledge of diagnostic terms gives parents access to educational materials. Third, since local and national support groups are usually organized according to specific diagnoses, diagnostic information allows parents to benefit from the resources these groups provide.
Professionals must take time to listen to parents' reactions, worries and fears. Diagnostic terminology is loaded with emotion and mystery. Professionals can validate parental worries and present further explanations if needed.
Acknowledging parental distress
When faced with the information that a child has a disability or serious illness, the mature, mentally healthy parent will be very upset. Such distress is an understandable, healthy reaction. Unfortunately, some believe that parents' emotional distress is not a relevant subject for discussion and that the "healthy" reaction is to suppress feelings and "be strong."
Nothing could be further from the truth. Keeping difficult feelings inside consumes a great deal of energy. A parent who is working hard to suppress feelings and worries has very little energy available to pay attention to and learn the vital information the professional can provide.
At this point, it can be useful to give parents explicit "permission" to be frightened and upset. It is useful to say something like, "[diagnostic term] is a frightening term," or "It's OK to cry." These statements make it clear that it is a normal, human reaction to be frightened by technical terminology that suggests a problem. Without this permission to be frightened, a parent may feel embarrassed by the way he or she feels, silently suppressing such feelings and pretending to understand when, in fact, he or she is unable to pay attention.
This critical step of acknowledging parents' emotional reactions gives parents the opportunity to talk about their shock, fear, sadness, even anger at the professional for providing the diagnosis. Agitation, confusion, anger and/or questioning behavior (such as repetitive questions about the diagnosis) are all signs of being upset and are part of the mourning process; they are not hostility or signs of parental "dysfunction."
It helps if the professional can say, "I appreciate how frightening it is to hear this news," or "I can appreciate that you must have all kinds of feelings, including very angry feelings, about this news." Comments like these validate parental emotions and explain that strong feelings are permissible and acceptable. Parents need to hear that--under the circumstances--it is normal to have many feelings at the same time. Parents also need to know that the professional is willing to listen patiently and will not criticize any emotional reactions.
After parents describe their feelings, the professional can gradually provide the educational information parents need to understand the diagnosis and to begin to meet the current needs of the child and the family.
Parents need to know that they are likely to experience a wide range of emotions because they will be going through a mourning process--mourning the loss of the child of their dreams. Giving lip service to such a mourning process does not bring it to an end. It takes time--time during which parents will need continued attention and concern.
Denial and anger
Denial is a human reaction to being upset and anxious. When professionals push harder to make a point that a parent seems to deny, the parent's anxiety will increase--further increasing denial. A more effective technique is to address the cause of the denial by acknowledging that the news is frightening and upsetting.
By specifically encouraging parents to talk about feelings of anger, professionals help prevent the clinical depression that may occur as parents try to cope with the birth or initial diagnosis of a child with a disability. In part, depression can be the result of a process that begins by turning angry feelings inward because there is no opportunity to express them.
The professional can also help by explaining the value of parents sharing the wide range of intense feelings each is likely to experience with each other--including the feeling of "going crazy." Parents need to know that these feelings are part of the mourning process, and that it will be helpful to speak openly with their loved ones, as well as with caring professionals. To prepare parents to be understanding and supportive of each other, it is also helpful to be remind them that individuals who are in mourning can severely test the patience of loved ones by speaking or behaving in troubling ways.
Sometimes, professionals feel upset themselves when parents are obviously distressed. The professional may cope with this personal discomfort (and believe he or she is meeting parental needs for information) by immediately presenting a thoughtful "lecture." Professionals may assume that the valuable information conveyed will help parents understand the child's condition and feel better. Instead, parents suffer through these lectures quietly and say little--even when asked if they have "any questions." They feel embarrassed about being upset, and further embarrassed for failing to understand the "lecture."
Parental questioning can sometimes provoke other unproductive professional behavior--especially when the professional isn't sure how to respond because the answer is unclear or unknown. In such situations, the professional can begin by acknowledging the validity of the concern expressed, and then say, "I don't know," or "I'm not sure," before suggesting a way for parents and professionals to work together to find answers.
Although parents need a great deal of information, the professional must consider the issues of dosage and timing. I am not aware of any specific "prescriptions" of information dosages for specific diagnostic conditions--especially during the stress of an initial discussion. Rather, it seems more useful to appreciate that parental needs for information are likely to change as the family confronts different challenges in different settings and stages of their lives. At the initial meeting, while validating parental concerns about the future, it is important to keep the focus on information the parent needs at that time.
Many parents of children with disabilities and/or special health care needs first hear the diagnostic news from professionals who will not be directly involved in the child's future care. It is essential that the primary care professional (or team) be given as much information as possible about the interaction between parents and professionals during the presentation of the diagnostic news. This will allow the primary care team to provide for continuing parental needs.
The professional team needs to explain that parent support groups can provide emotional support and practical information very effectively, often far more effectively than any professional. By participating in such groups, parents can end feelings of isolation, share their grief and learn practical solutions to everyday challenges.
To connect parents with such groups, professionals need to be knowledgeable about appropriate local and national organizations. Professionals may be asking too much when they expect the distraught parents of a newly diagnosed child to have the energy and courage to contact a group of strangers. Rather, with permission, the professional can arrange for the group to reach out to the "new" parents.
Even under the best of circumstances, well-intentioned, intelligent parents are unlikely to remember everything communicated verbally. While it can be helpful to take notes or make tape recordings, it is more effective if the professional explains that because it is very difficult to remember all that has been discussed, a written report will be prepared, using language understandable to lay persons, which summarizes the discussion in the meeting. This report will include the observations, the diagnosis and specific recommendations. Besides helping everyone remember what transpired during a particular meeting, such reports are valuable for other professionals who will be involved with the child and family but may be unfamiliar with the specific technical language professionals in the same specialty use when talking to each other.
Stanley D. Klein, Ph.D., is co-founder and editor-in-chief of Exceptional Parent. He frequently speaks to audiences of parents and professionals on the topic of delivering difficult news. Kim Schive is the associate editor of Exceptional Parent This article was adapted from a chapter that appears in Families, Physicians, and Children with Special Health Care Needs: Collaborative Medical Education Models. Readers are encouraged to share this article with health care professionals and educators.
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|Title Annotation:||includes a parent's response to her doctor after receiving a devastating diagnosis|
|Author:||Klein, Stanley D.; Schive, Kim|
|Publication:||The Exceptional Parent|
|Date:||Aug 1, 1996|
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