Family caregiver costs of chronically ill and handicapped children: method and literature review.

Studies to date on the costs to family caregivers of children with chronic diseases and disabilities were surveyed. The survey was conducted in the context of an economic framework, which set cost categories and definitions as well as causal factors influencing costs. Emphasis was placed on variations in costs, and in particular on identifying those categories of families whose cost burdens are high. The analysis indicated a high cost burden for families in all disease categories studied, although a lack of uniformity in data presentation and in the variables studied prevented specific generalizations to be made about the numbers or characteristics of families with high costs. Suggestions are made for increasing the uniformity of data in future studies.