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. …

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: The “Care for Participation+” (CFP+) intervention was developed in order to change the attitudes of direct support professionals (DSPs) regarding the participation of adults with visual and severe or profound ID (VSPID). Aims: The aim of this study was to evaluate the effects of CFP+ on the …

Individuals with intellectual disability (ID) need support from direct support professionals (DSPs) to engage in a healthy lifestyle. However, literature shows DSPs feel insufficiently equipped to support a healthy lifestyle. Therefore, the aim of this study is to develop a theory-based program for DSPs …

Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research. Findings: The …

Background: There is a lack of theory-based interventions for direct support professionals (DSPs) to support a healthy lifestyle for people with moderate to profound intellectual disabilities (ID) despite their major role in this. This study aims to evaluate the preparation, implementation, and preliminary …

In light of current worldwide developments, the conference theme “Value Diversity” explicitly refers to the changes we need to see. This contribution is about Life expectancy of people with a severe or profound intellectual disability. Their life expectancy increases, which contributes to the risk of …

Background: Family quality of life (FQoL) of families that have a child with severe to profound intellectual disabilities (SPID) is an important and emerging concept, however, related variables are inconclusive. Aim: To gain a better understanding of variables related to the FQoL of families that have …

Aim Life expectancy of people with severe or profound intellectual disability (SPID) increases, which contributes to the risk of developing dementia. However, early detection and diagnosing dementia is complex, because of their low-level baseline functioning. Therefore, the aim is to identify observable …