Background: It is thought that physical health conditions start at a young age in people with profound intellectual and multiple disabilities (PIMD). Knowledge regarding the prevalence, associations and development of these physical health conditions could be used for purposes of prevention as well as …

The aim of this study was to gain insight into the visual functioning of children with profound intellectuual and multiple disabilities (PIMD). A mixed methods study was performed, determining cross-sectional quantitative ophthalmological/orthoptic data, and qualitative observational data with a standardized …

Background: Although particular technologies can enhance the quality of life (QoL) of people with profound intellectual and multiple disabilities (we use the term pervasive support needs), their objectives and outcomes are understudied. A systematic literature review was therefore conducted to explore …

Background Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume. Method We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire. …

Introduction Although the prevalence of dementia increases among people with severe/profound intellectual (and multiple) disabilities (SPI(M)D), dementia in people with SPI(M)D is not yet fully understood. Therefore, this study aimed to characterize the natural history of dementia in people with SPI(M)D, …

Background: Chronic constipation is common in people with intellectual disabilities, and seems to be highly prevalent in people with severe or profound intellectual and multiple disabilities (SPIMD). However, there is no current widely accepted definition for the constipation experienced by these individuals. …

In disability research, there is an increased focus on the well-being of families with a child with a disability, also known as family quality of life (FQOL). However, the well-being of families with a child with profound intellectual and multiple disabilities (PIMD) has not yet been explored, even though …

Background: Persons with profound intellectual and multiple disabilities (PIMD) are vulnerable when it comes to experiencing pain. Reliable assessment of pain-related behaviour in these persons is difficult. Aim To determine how pain items can be reliably scored in adults with PIMD. Methods: We developed …

Poster presentation, pitch included at the SIRG PIMD Leuven