What parents find important in the support of a child with profound intellectual and multiple disabilities

Background The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of family-centred care'. To what extent family-centred principles are also applied to the support of persons with profound intellectual and multiple disabilities (PIMD) is not yet known. Aim The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child. In addition, we examined which child or parent characteristics influence these parental opinions. Method In total, 100 parents completed an adapted version of the Measure of Processes of Care. Mean unweighted and weighted scale scores were computed. Non-parametric tests were used to examine differences in ratings due to child (gender, age, type and number of additional disabilities, type of services used and duration of service use) and parent characteristics (gender, involvement with support and educational level). Results Parents rated situations related to Respectful and Supportive Care' and Enabling and Partnership' with averages of 7.07 and 6.87 respectively on a scale from 1 to 10. They were generally satisfied with the services provided, expressed in a mean score of 6.88 overall. The age of the child significantly affected the scores for Providing Specific Information about the Child'. Parents of children in the 612 years' age group gave significantly higher scores on this scale than did parents of children in the 17 years' age group (U=288, r=0.34). Conclusion This study shows that parents with children with PIMD find family-centred principles in the professional support of their children important. Although the majority of parents are satisfied with the support provided for their children, a substantial minority of the parents indicated that they did not receive the support they find important