Provide support at the time of diagnosis
Situations requiring special consideration
Tension in the delivery room conveys the sense that something is seriously wrong. Communication is often delayed while the physician is involved with the mother’s care. The way the infant is presented may well set the tone for the early parent-child relationship.
Clarify role with physician regarding revealing information to enable immediate parental support.
Explain to parents briefly in simple language what the defect is and something concerning the immediate prognosis before showing them the infant. Later more information can be given when they are more ready to “hear” what is said.
Be aware of nonverbal communication. Parents watch facial expressions of others for signs of revulsion or rejection.
Present infant as something precious.
Emphasize well-formed aspects of infant’s body.
Allow time and opportunity for parents to express their initial response.
Encourage parents to ask questions, and provide honest, straightforward answers without undue optimism or pessimism.
Unless cognitive impairment (or mental retardation) is associated with other physical problems, it is often easy for parents to miss clues to its presence or to make defensive excuses regarding the diagnosis.
Plan situations that help parents become aware of the problem.
Encourage parents to discuss their observations of child but withhold diagnostic opinions.
Focus on what the child can do and appropriate interventions to promote progress (e.g., infant stimulation programs) to involve parents in their child’s care while helping them gain an awareness of the child’s condition.
If loss of motor or sensory ability occurs during childhood, the diagnosis is readily apparent. The challenge lies in helping the child and parents over the period of shock and grief and toward the phase of acceptance and reintegration.
Institute early rehabilitation (e.g., using a prosthetic limb, learning to read braille, learning to read lips).
Be aware that physical rehabilitation usually precedes psychologic adjustment.
When the cause of the disability is accidental, avoid implying that parents or child was responsible for the injury, but allow them the opportunity to discuss feelings of blame.
Encourage expression of feelings
Realization of the true impact may take months or years. Conflict over parents versus child’s concerns may result in serious problems. When condition is inherited, parents may blame themselves, or child may blame the parents.
Help each family member gain an appreciation of the others’ concerns.
Discuss hereditary aspect of condition with parents at time of diagnosis to lessen guilt and accusatory feelings.
Encourage child to express feelings by using third-person technique (e.g., “Sometimes when a person has an illness that was passed on by the parents, that person feels angry or bitter toward them”).
The child or parent may require additional time for the shock phase and may be able to attend to only one diagnosis before hearing significant information regarding other disorders.
Acknowledge parents’ understanding and acceptance of all diagnoses, especially when an obvious and more hidden disability coexists.
Appreciate the devastating consequences of more than one disability for a child, especially if they interfere with expressive-receptive abilities.
Parents require much support to deal with their own feelings and guidance in how to tell the child the diagnosis. They may want to conceal the diagnosis from the child. They may believe that the child is too young to know, will not be able to cope with the information, or will lose hope and the will to live.
Approach the subject of disclosure in a positive way by asking, “How will you tell your child about the diagnosis?” Help parents understand the disadvantages of not telling the child (e.g., deprives child of the opportunity to discuss feelings openly and ask questions, incurs the risk of child learning the truth from outside and sometimes less tactful sources, may lessen child’s trust and confidence in the parents after learning the truth).
Guide parents to see the potential problems involved in fostering a conspiracy.
Offer parents guidelines for how and what to tell the child about the disease or the possibility of death. Explanations should be tailored to child’s cognitive ability, be based on knowledge child already has, and be honest. Honesty must be tempered with concern for child’s feelings.
Assure parents that telling a child the name of the illness and the reason for treatment instills hope, provides support from others, and serves as a foundation for explaining and understanding subsequent events.
Acknowledge that being honest is not always easy because the truth may prompt the child to ask other distressing questions, such as “Am I going to die?” However, even this difficult question must be answered.