Assessments of the environment in which the child is living, working, playing, and growing are important in understanding the child’s development. A home visit by a social worker, community health nurse, and/or home-based intervention specialist can provide valuable information about the child’s social milieu. Often the home visitor can suggest additional adaptive equipment or renovations if there are challenges at home. If there is a suspicion of inadequate parenting, and, especially, if there is a suspicion of neglect or abuse (including emotional abuse), the child and family must be referred to the local child protection agency. Information about reporting hotlines and local child protection agencies usually is found inside the front cover of local telephone directories (see Chapter 22).
Intervention in the Primary Care Setting
The clinician must decide whether a problem requires referral for further diagnostic workup and management or whether management in the primary care setting is appropriate. Counseling roles required in caring for these children are listed in Table 10-4. When a child is young, much of the counseling interaction takes place between the parents and the clinician, and, as the child matures, direct counseling shifts increasingly toward the child.
The assessment process may be therapeutic in itself. By assuming the role of a nonjudgmental, supportive listener, the clinician creates a climate of trust, allowing the family to express difficult or painful thoughts and feelings. Expressing emotions may allow the parent or caregiver to move on to the work of understanding and resolving the problem.
Interview techniques may facilitate clarification of the problem for the family and for the clinician. The family’sideas about the causes of the problem and attempts at coping can provide a basis for developing strategies for problemmanagement that are much more likely to be implementedsuccessfully because they emanate, in part, from the family.The clinician shows respect by endorsing the parent’s ideaswhen appropriate; this can increase self-esteem and sense of competency.
Educating parents about normal and aberrant development and behavior may prevent problems through early detection and anticipatory guidance and communicates the physician’s interest in hearing parental concerns. Early detection allows intervention before the problem becomes entrenched and associated problems develop.
The severity of developmental and behavioral problems ranges from variations of normal to problematic responses to stressful situations to frank disorders. The clinician must try to establish the severity and scope of the patient’s symptoms so that appropriate intervention can be planned.
For the child, behavioral change must be learned, not simply imposed. It is easiest to learn when the lesson is simple, clear, and consistent and presented in an atmosphere free of fear or intimidation. Parents often try to impose behavioral change in an emotionally charged atmosphere, most often at the time of a behavioral violation. Similarly clinicians may try to teach parents with hastily presented advice when the parents are distracted by other concerns or not engaged in the suggested behavioral change.
Apart from management strategies directed specifically at the problem behavior, regular times for positive parent-child interaction should be instituted. Frequent, brief, affectionate physical contact over the day provides opportunities for positive reinforcement of desirable child behaviors and for building a sense of competence in the child and the parent.
Most parents feel guilty when their children have a developmental/behavioral problem. Guilt may be caused by the fear that the problem was caused by inadequate parenting or by previous angry responses to the child’s behavior. If possible and appropriate, the clinician should find ways to alleviate guilt, which may be a serious impediment to problem solving.
In many cases, a team of professionals is required to provide the breadth and quality of services needed to appropriately serve the child who has SHCN. The primary care physician should monitor the progress of the child and continually reassess that the requisite therapy is being accomplished.
Educational intervention for a young child begins as home-based infant stimulation, often with an early childhood specialist (e.g., nurse/therapist), providing direct stimulation for the child and training the family to provide the stimulation. As the child matures, a center-based nursery program may be indicated. For the school-age child, special services may range from extra attention in the classroom to a self-contained special education classroom.