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, …

Objectives: People with intellectual disabilities are more vulnerable to and experience mental health concerns at a higher incidence than their peers without intellectual disabilities. This may be directly related to the aetiology of their intellectual disability but also occur because of negative psychological …

Despite the current terminology debate, little is known about the terminology experiences of people with disabilities and their relatives. Therefore, their interviews and letters to editors about disability terminology experiences published in Dutch newspapers between 1950 and 2020 were examined using …

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 …

Objective: For more than a decade, an increase in psychiatric disabilities has been reported worldwide among students in postsecondary education. Supported Education (SEd) interventions support students with psychiatric disabilities to return to or remain in education. As not much is known about the …

Globally, social inclusion of people with an intellectual disability has been a long-standing challenge. From the public stigma, lack of understanding and little societal exposure, to discrimination, maltreatment and abuse, all show to be examples of difficulties this minority group encounters all over …

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 …

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 …