Participation : Both a means and an end. A conceptual analysis of processes and outcomes in childhood disability

This paper outlines a conceptual approach that we believe should be used to inform research and practice aimed at supporting children whose lives are complicated by impairment and/or chronic medical conditions, and their families. We promote the idea that ‘participation’ in meaningful life activities should be an essential intervention goal, to meet the challenges of healthy growth and development, and to provide opportunities that will help ensure that young people with impairments reach their full potential across the lifespan. We also argue that both intervention activities and research can focus on participation as either an independent or dependent variable. The proposed framework, and associated hypotheses, are applicable to children and youth with a wide variety of conditions and their families. In taking a fresh ‘non-categorical’ perspective to child and youth health (i.e., looking beyond specific diagnoses), by asking new questions, and by exploring issues in innovative ways, we expect to learn lessons and develop creative solutions that will ultimately benefit children with a wide variety of impairments and challenges, and their families, everywhere.