The main purpose of this article was to present a review of the literature from 1989 to 2005 for articles that examined the cost incurred by families as a result of caring for a child with disabilities. The review was performed according to an economic model developed by the authors and the guidelines set out by CCOHTA. Although not consistent across studies, the results show that the burden incurred by these families can be substantial, especially among those families who care for a child with a severe disability.
The absence of a consensus arising from the literature can be attributed to three factors: the absence of a theoretical base, methodological difficulties, and the absence of a standard in terms of which the resulting costs can be judged.
When analyzed according to the economic model proposed in the paper, it becomes evident that none of the studies reviewed employed a comprehensive economic approach to measuring costs. Of concern is that these costs cannot be accurately calculated or results interpreted without the full consideration of which resources and costs are relevant, and where they fit into the model. It is not feasible to measure all items, due to possible constraints in budgets, time, resources, and respondent burden. Yet, it is important that studies start off with a “big picture,” measure what is feasible, and then highlight the limits of their study in reference to this big picture. The commencement of the study with an inclusive and transparent approach would provide an indication of the extent of costs accounted for, which in turn would facilitate interpretation of results.
While results suggest that families can incur a substantial cost burden, there exists great variability across studies in reported costs. We noted a lack of uniformity in data collection and research methods across studies. The variability in costs is likely due to the variety of methods employed from one study to the next. Specifically, not all studies measured severity or included information on how disabilities were categorized and severity determined. All but two studies failed to account for time biases in data collection. Only one study employed a method that would allow the researchers to capture recurring costs over time. As well, some studies collected data on net cost while others collected data on gross cost of caring for a child with a disability. For the most part, studies were limited by their period of observation, which was short, consisted of one-time data collections, and relied on recall. What is more, a limited number of studies provided details on how resources included were determined, nor did they provide a cost per resource consumed, and few provided a monetary value for time or forgone opportunities.
With the exception of one study, there was an absence of a threshold net cost or decision rule in terms of which one could judge whether the burden was acceptable or not. In the absence of a stated threshold (which is, of course, subjective), it is impossible to determine the acceptability of the burden—gross or net. However, the results from some of the studies seem to suggest that the burden is in some cases excessive, with costs exceeding 5% to up to 12% of families' incomes and with net costs of up to $8,000 a year.
Despite the aforementioned methodological limitations, it must be acknowledged that the quality of some of these studies has improved when compared to those reviewed by Jacobs and McDermott (1989).18
The most noticeable improvement was the inclusion of variations of cost-time profiles in four of the 17 studies reviewed and the adoption of a prospective research design in two of the studies. Explicit reporting of variations in costs profiles, especially as depicted in frequency distributions, are of particular significance to policy makers as it helps to identify target groups (e.g., age, severity, disability) in need of public assistance.18
The lack of studies examining the economic cost of caring for a child with a disability gives impetus for further research in this area. To help guide further research, it is suggested that researchers adopt a conceptual model. For example, the economic model described in this paper is comprehensive and may prove useful for future research as it draws attention to the different variables that may be considered in calculating financial burden. Ideally, subsequent research should employ an economic framework and adopt a prospective and cross-sectional research design to capture recurring costs over time, at different ages, and during different seasons. Efforts should be made to report on specific costs as opposed to global cost. A breakdown of where money is spent could be useful to policy makers. In the future, researchers should make the effort to systematically review the local policies in force that could potentially offset family costs. A prime example of such a review is demonstrated in the work by Dobson et al.24
In their study, the authors made the effort to compare cost to the maximum benefits available. The studies should be transparent to facilitate interpretation of research findings, generalization across studies, and policy implications.
There are several limits to this review. First, the review is limited in that it focused on studies of family-incurred costs related to caring for a child with a physical disability. This type of sample was selected in an attempt to report on the most homogeneous population possible. Studies that reported on costs of caring for a child with a chronic illness or other condition only, such as cancer, epilepsy, HIV, or arthritis, were excluded from this review. Second, while we set out to include children with a physical disability only, sometimes samples included children with other conditions; however, they usually made up a smaller portion of the sample than children with a physical disability.
In conclusion, this review of literature demonstrates that little research has been performed to reveal the magnitude of costs imposed on families as caregivers for children with disabilities. This observation has been highlighted by many authors interested in the costs incurred by these families.3,22,33,41–43
Because of the variability and quality of methods, 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.