Families with a child with profound intellectual and multiple disabilities (PIMD) have to manage the child's pervasive support needs. To ensure that families are able to manage these needs, they should be properly supported. However, knowledge about the specific support needs of these families is sparse and fragmented, nor is it known if and which…

Siblings are important in the lives of individuals with an intellectual disability and pervasive support needs; however, adults' experiences of the things they do with or for their siblings with pervasive support needs remain underexplored. This study examined positive and challenging aspects of their roles related to their siblings. An online…

Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings' role regarding future care/support for their family member, we interviewed eight…

Background: Quality of Life (QoL) may be a factor in physicians' decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD. Method: We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD,…

Purpose: Most speech-language pathologists (SLPs) working with children with developmental language disorder (DLD) do not perform language sample analysis (LSA) on a regular basis, although they do regard LSA as highly informative for goal setting and evaluating grammatical therapy. The primary aim of this study was to identify facilitators,…

The application of restrictions plays a great part in daily support of people with moderate intellectual disability (ID). In this study we examine the evaluation of relatives of restrictions applied to their family members with moderate ID. Relatives are key and permanent figures in the lives of people with moderate intellectual disability.…

Introduction: People with intellectual disabilities and co-occurring psychopathology have a relatively high likelihood to engage in aggressive behavior. Nevertheless, structured clinical assessment of aggressive behavior, including when and where it occurs, is scarce in this population. Methods: On three wards specializing in the care for people…

Purpose: This study explores limitations in communication in daily life of children with developmental language disorder (DLD) from their parents' perspective as well as communicative abilities and social functioning in the classroom from their teacher's perspective. Furthermore, differences between children with mixed receptive-expressive…

Background: Direct support professionals' (DSPs') attitudes toward nutrition are important for supporting a healthy lifestyle of persons with intellectual disabilities. However, there are no instruments to measure it. The aim of this study was to compose a questionnaire and determine its internal validity. Method: The previously validated Health…

There is a growing recognition that research and implementation projects should be carried out "with" or "by" young people with chronic conditions, instead of "about" or "for" them. The current study aimed to explore how young people with chronic conditions experience their involvement in a participatory…

Background: Sex education programs have been developed with paid care staff as sex educators. However, no information is available about whether these programs are being delivered. Method: The aim of this study was to investigate whether paid care staff working in an organisation specialised in the care of people with mild to moderate intellectual…