In summary, children with special health care needs account for a large percent of children in a primary care practice. It is imperative that the primary care provider be familiar with the associated medical conditions of each child and the need to provide routine health care.
Furthermore, it is critical for the primary care provider to be familiar with the frequently occurring acute med- ical illnesses in children with disabilities and the com- mon manner in which they may present.
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3
Psychological Assessment in
Pediatric Rehabilitation
Jane A. Crowley and Kayla White-Waters
The goal in pediatric rehabilitation is not an end point as in the adult world. Rather, it is a process toward the con- tinued development of ever-changing abilities and emo- tional, behavioral, and cognitive structures. The goal of any pediatric rehabilitation process is to foster the contin- uing work of childhood. This additional distinguishing dimension of pediatric rehabilitation relates to the central imperative of the pediatric population—development.
There is a dual goal: rehabilitation to prior levels and habilitation for the remaining development in that child’s or teen’s life. An important tool for establishing current levels, setting future goals, and tracking progress over time is psychological assessment.
The rehabilitation physician and the team will treat a wide array of medical conditions among their patients.
Rehabilitation medicine departments will encounter requests for treatment for those with congenital dis- ability, acquired disability from illness or injury, and chronic medical conditions. A recent estimate of the incidence of severe chronic illness seen in rehabilita- tion is more than 1 million children in the United States (1). These children, and those who survive catastrophic illness or injury, are a growing population due to med- ical advances that reduce mortality, covering the full age range from infancy to young adulthood.
In acknowledging that normal development assumes an intact sensory, motor, and overall neurologic system for interaction with the environments of family and the
larger world, the children and teens we work with do not have the standard equipment or inter-relationships among skills. For example, a child’s motor disability can easily alter the basic emotional developmental tasks.
The protraction of physical dependence that is a reality for a child with a congenital disability like spina bifida, at the very least, risks altering the psychological mile- stones of separation/individuation. Cognitive sequelae of that central nervous system (CNS) disorder can also result in academic and adaptive behavior deficits. In these cases, standard developmental schema often do not apply (2). Not only because of deficits, but because there are unique tasks to be mastered with a disabil- ity. Functional use of a wheelchair, doing activities of daily living (ADLs) with one arm, self-catheterization, and visual competence with a field cut are but a few specific “milestones” our patients face. In the case of a traumatic injury, the disruption of a normal life, with typical developmental progress and engagement in the world, is an emotional maelstrom for the patient and his or her family (3).
Potential distortions in many aspects of the nurturing and individuating demands of competent development abound in children with disabling conditions (4). The barrage of medical technology and interventions is vast in variety and effectiveness. Yet, the psychological cost of these necessities can be high. The challenges of hospitalization, a disruption of familiar routine, the
therapy demands of rehabilitation, absence of parents, and intrusive or painful medical procedures are addi- tional tasks against which to bulwark the patient (5). In a broader context, there is prejudice against those with disability, and children must face the extra demands of bridging ignorance and misconceptions.
In line with the centrality of development, the objects of assessment constitute a “moving target.” Environmental demands change, as does the child’s or teen’s abilities to meet them. At school age, the child must now function competently in the ever-increasing demands for indepen- dence reflected in the school setting. Furthermore, the medical condition can itself change over a child’s devel- opment. A disease process can progress (for example, juvenile rheumatoid arthritis), or increasing body size can change the nature of mobility (for example, spina bifida), and prior function can be lost. The task is to have these experiences remain challenges to development and not become barriers. This argues for continued moni- toring throughout a child’s development as a vital fac- tor and the importance of psychological assessment as a vital part of that monitoring to be utilized throughout the pediatric course of a patient’s life.
The relationship of family functioning to outcome in pediatric disability has been widely demonstrated (6,7). The challenge to a family is to walk an unfamiliar path, as few families have direct experience with child- hood disability. The effects may be bidirectional (4), with the deficits from the medical condition interact- ing with parental features or the child’s status result- ing in disrupted parenting approaches. Parents often must assume an additional role as case manager and advocate in the medical and educational systems. In addition, they have to “translate” their child’s issues to other family members at the nuclear and extended fam- ily levels. The family becomes a vital arena of interven- tion. The family is the first-order site of development and stimulation as well as a filter for the larger world.