Parents’ experiences of collaborating with professionals in the support of their child with profound intellectual and multiple disabilities

Abstract

Background:

There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals.

Method:

A multiple case study (n = 4) was conducted. Observations were logged for every contact between professionals and parents during 12 months.

Results:

The mean number of contacts a month ranged from 1.9 to 16.7 across the cases. Most of the contacts were with the child’s direct support persons (85.2%) and exchanging information (35.5%) was the most common function. Issues concerning health (28.4%) were the most common subjects discussed. The majority of the mothers’ experiences were positive.

Conclusion:

Direct support persons play a crucial role; they need to be aware of this role and to be trained to fulfill their role to acknowledge parents as partners.