PSYCHOLOGICAL ASSESSMENT IN PEDIATRIC REHABILITATION

]amie L. Spohn and Jane A. Crowley

Children's needs within a rehabilitative setting are different from adults in that recovery of skills and return to baseline are not the end point. Rather, it is an evolution toward the continued development of ever-changing abilities in emotional, behavioral, and cognitive structures. The goal of any pediatric rehabilitation process is to foster the continuing work of childhood. This additional distinguishing dimension of pediatric rehabilitation relates to the central requisite of the pediatric population— development. There is a dual goal: rehabilitation to prior levels and capacity 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 and/or changes 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 disability, acquired disability from illness or injury and chronic medical conditions. A recent estimate of the incidence of severe chronic illness seen in rehabilitation 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 medical 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 interrelationships among the aforementioned 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 and developmental milestones of separation/individuation. Cognitive sequelae of that central nervous system (CNS) disorder can also result in academic, social, and adaptive behavior deficits. In these cases, standard developmental schema often does not apply (2). These developmental scripts do not apply not only because of deficits, but because there are unique tasks to be mastered with a disability. 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 as well as typical developmental progress and engagement in the world, is an emotional maelstrom for the patient and his or her family (3).

It is possible that many problematic 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 astronomical. The challenges of hospitalization, a disruption of familiar routine, the therapy demands of the rehabilitation structure, absence of parents, and intrusive or painful medical procedures are additional tasks against which to hinder the patient's progress (5). In a broader context, there is prejudice against those with disability, and children must face the extra demands of bridging ignorance and misconceptions among their peers and anyone else they may encounter.

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 independence reflected in the school setting. Furthermore, the medical condition can itself change over a child's development, causing a need for constant adaption. A disease process can progress (eg, juvenile rheumatoid arthritis), or increasing body size can change the nature of mobility (eg, spina bifida), and prior function can be lost, requiring significant adjustment on the part of the child or teen, as well as their parents or guardians. The task is to have these experiences remain challenges to development and not become barriers. This argues for continued monitoring throughout a child's development as a vital factor 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. This allows for continuous modifications as support throughout the individual's developmental course.

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 childhood disability. The effects may be bidirectional (8), with the deficits from the medical condition interacting with parental features or the child's status resulting in disrupted and possibly ineffective 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 family levels. The family becomes a vital arena of intervention. The family is the first-order site of development and stimulation as well as a filter for the world at large.

 
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