The Personal Costs of Caring for a Child with a Disability: A Review of the Literature

Abstract

This article presents a review of the literature published from 1989 to 2005 for articles that examined the economic burden incurred by families as a result of caring for a child with disabilities. The review was performed according to a comprehensive economic conceptual model developed by the authors and to the guidelines set out by Canadian Coordinating Office for Health Technology Assessment. The analysis indicated that the burden incurred by these families can be substantial, especially among families who care for a child with a severe disability. However, the variability and the quality of methods is such that the return on investment in knowledge of costs in this area is not as high as it could have been had methodological procedures been more standardized. A comprehensive and systematic approach is suggested for future research.