Family Group Conferences within the integrated care system for young people with ID: a controlled study of effects and costs

BACKGROUND: The Dutch healthcare system and the roles of the government and citizens are changing. The government will be limiting its role in care and assistance, while citizens will be expected to increasingly care for themselves and each other. An important instrument to support this transformation involves utilizing people’s social network, in the form of the Family Group Conference. Studies on the use of these Family Group Conferences within various sectors are promising. Whether the Family Group Conference is also effective within the integrated care system for young people with intellectual disability (ID) is not yet known. METHODS: In this study, anonymized file data were collected from 71 clients who had taken part in a Family Group Conference and a comparable group of 53 clients who had not. Information about the present areas of concern in the family was retrospectively collected and scored by means of a standardized protocol. In addition, information about received care and support from the integrated care system for young people with ID was collected. The areas of concern were assessed at two moments in time, with a 12-month interval. Resource use was assessed for the entire research period of 12 months. RESULTS: The problems in the group of clients who had taken part in a Family Group Conference greatly decreased over a period of twelve months. There was a much smaller decrease in the number of problems in the group that had not taken part in a Family Group Conference. Resource use did not significantly differ between conditions. CONCLUSIONS: Our findings reveal that people with ID can also benefit from this approach, something which had been previously doubted. Support from the social network, however, does not substitute formal care.