Perspective of patients and caregivers about stroke rehabilitation: the Quebec experience.

BACKGROUND: The unique perspectives of patients and caregivers on their experiences as users of rehabilitation services help identify areas for improvement for the continuum from acute care to community integration. OBJECTIVE: This study reports perceptions of persons with stroke and their caregivers in an existing continuum of stroke care, social services, and rehabilitation in the Province of Quebec. METHODS: A total of 10 focus groups were held, 5 with persons with stroke (n = 37, mean age 59.6 years (SD = 11.6); 21 men) and 5 others with caregivers (n = 31; mean age 58.8 years (SD = 15.1); 8 men). Discussions were transcribed and were the object of thematic content analysis using Nvivo. RESULTS: Participants expressed their general satisfaction toward the care received in inpatient, hospital, and rehabilitation settings. The information received about acute care, however, was deemed insufficient and fragmented, and access of rehabilitation services was often perceived to be difficult. In the community integration phase of the continuum, most participants stated that they had experienced poor accessibility to services of any kind. CONCLUSIONS: Persons with stroke and their relatives' perspectives about the services that they obtained throughout the rehabilitation continuum vary importantly according to the services examined. Adopting a continuum perspective is helpful to target priorities for improvement.

The personal costs of caring for a child with a disability: a review of the literature.

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.