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Occupational performance characteristics of children and adolescents with congenital heart disease Imms, Christine

Abstract

This study explored the occupational performance characteristics of children and adolescents who have congenital heart disease. Children with congenital heart disease have been found to be at risk for neurological deficits and to experience an increase in problem behaviors, learning and academic difficulties and an increase in emotional or mental health disorders. Recently, pediatric cardiologists have advocated the establishment of rehabilitation programs for these children focusing almost exclusively on exercise. This somewhat narrow focus does not encompass the multitude of deficits that often accompany congenital heart disease. Occupational therapy theory provides a broader framework for exploring the range o f difficulties these children are experiencing as the literature suggests they may be under-performing in occupational performance areas o f self-care, productivity and leisure. This prospective descriptive study assessed children and adolescents with congenital heart disease to determine their ability to participate in self-care, productivity and leisure tasks. The sample of 35 participants aged 7.0 - 16.5 years underwent assessment using standardized measures. The data were analyzed descriptively and inferentially. The t-test was used to determine whether a statistically significant difference existed between the group means and the test means. Participants had complex congenital heart disease and had experienced at least one open-heart surgery with cardiopulmonary bypass and hypothermia, a median of 9.3 years prior to participation. In comparison to test means, participants were found to have significantly reduced skills in self-care, productivity and leisure as reported by parents. They also had significantly reduced skills in visual motor integration and motor control as measured directly. There was no significant difference found in performance on either visual perception or fine motor skills and participants reported a moderately high sense of self-worth. Contrary to anecdotal opinion, this study found that children with congenital heart disease do not grow out of early difficulties during middle childhood. Further investigation is required into the efficacy of interventions aimed at increasing their ability to undertake meaningful occupations of childhood. Rehabilitation programs must address more than exercise. In addition, intra-rater reliability analysis suggested that a review of the process used to establish inter-rater reliability in commonly used tests and measures is warranted.

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