Examining perceptions of a communication course for parents of children with profound intellectual and multiple disabilities.

The overall aim was to examine participants' perceptions of a communication course as held for parents of children with profound intellectual and multiple disabilities. The course curriculum included responsive strategies and augmentative and alternative communication. The research questions addressed the favourability, changes in parents' or children's communication and appreciated or unappreciated course features. Twenty-two written course evaluations were analysed. The mean scores for ratings were compared with ratings in a previous study, including those of parents of children with generally milder disabilities. Comments and answers to open-ended questions were analysed using thematic analysis. Participants were slightly more satisfied with the course as compared with parents who had children with milder disabilities. The thematic analysis suggested increased parental responsiveness after the course. Perceptions of augmentative and alternative communication varied. It was unclear whether the course altered the children's communication or not. The supportive social milieu offered by the course was highly appreciated. Although generalisation beyond this course and setting is to be determined, the results suggest that parents of children with profound intellectual and multiple disabilities can appreciate a communication course and find it useful. An individual approach within the group setting and practical learning opportunities seem important.

Exploring co-occurrence of sensory, motor and neurodevelopmental problems and epilepsy in children with severe-profound intellectual disability.

BACKGROUND: Severe to profound intellectual disability (SPID) is associated with multiple neurodevelopmental disorders and problems. In the most severe cases, the term profound intellectual and multiple disabilities (PIMD) is used. This study aimed to explore the co-occurring disorders and neurodevelopmental problems in a sample of twins where the proband had SPID. METHOD: Within a population-based sample of (30 312) twins, 20 individuals with a national patient register SPID diagnosis were identified. Parent telephone interview data (screening of neurodevelopmental disorders) and register data (APGAR, birth weight, intellectual disabilities, epilepsy, motor and sensory disorders) were gathered for probands and co-twins. RESULTS: The 20 individuals with SPID all had between one and five additional disorders or problems, with autistic traits, motor problems and epilepsy being the most common. Clear discordance was found for ID and all additional disorders and problems between probands with SPID and their non-SPID co-twins. CONCLUSION: Children with SPID almost never present without neurodevelopmental and/or sensory and/or motor comorbidities. This heterogeneity should be reflected in clinical routine and in research targeting individuals with SPID. The results support a previously suggested conceptualization of a S/PIMD "spectrum". Autism may be considered for inclusion in future elaborations of such a S/PIMD spectrum.