title: 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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: 's Heeren Loo Zorggroep, Amersfoort, the Netherlands.
authors.forename: Suzanne Lg
authors.initials: SL
authors.lastname: Jansen
authors.affiliation: Department of Special Needs Education and Youth Care, University of Groningen, Groningen, the Netherlands; 's Heeren Loo Zorggroep, Amersfoort, the Netherlands.
authors.forename: Annette Aj
authors.initials: AA
authors.lastname: van der Putten
authors.affiliation: Department of Special Needs Education and Youth Care, University of Groningen, Groningen, the Netherlands.
authors.forename: Carla
authors.initials: C
authors.lastname: Vlaskamp
mesh_terms: D000293:Adolescent; D000328:Adult; D019988:Children with Disabilities; D006801:Humans; D008607:Intellectual Disability / Q000451:nursing*; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D011368:Professional-Family Relations; D036301:Qualitative Research; D055815:Young Adult
keywords: case study; collaboration; communication; professionals; profound intellectual and multiple disabilities