Background: Mothers of young adults with profound intellectual and multiple disabilities that live at home are less likely to be on the radar of formal services. We explored the experience of these mothers over the course of the COVID-19 pandemic. Methods: A qualitative study using three case studies. Transcripts were analysed using Interpretative…

Background: The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method: We interviewed 27 parents of persons with PIMD and analysed the data…

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…

Academic accommodations for students experiencing disabilities are increasingly available at postsecondary institutions. More studies of the efficacy of accommodations for student success are warranted, however. Given the increased gender gap in university participation, more focus on the unique impact of gender is also needed. Using a sample of…

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…

Purpose: The purpose of this study was to describe childhood dysarthria by means of auditory-perceptual analyses covering all speech subsystems. We aimed to identify the most seriously affected auditory-perceptual dimensions in the observed dysarthria profiles and to detect specific markers of childhood dysarthria against the backdrop of typical…

One of the phenomena that predicts poorer educational outcomes for young people, as well as poorer outcomes in other areas, is certainly the phenomenon of complex needs, i.e., challenges that cut across different domains, often combining psychosocial wellbeing, physical and mental health, socioeconomic background, the burden of different…

Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of…

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…

This paper is a methodological reflection drawn from a study on the transition from school into young adulthood in Aotearoa New Zealand. During this process, the personal priorities of young adults with significant disabilities often becomes overpowered by those involved in their post-school planning. Through the experiences of young adults living…

In pediatric health care there is increasing attention for a child-centered approach, also referred to as personalized care (Coyne, Hallstrom, & Soderback, 2016). In this care it is essential to assess personal relevant functioning, hence, to explore which activities are important for a child and to assess the quality of performance of these…

Article 24 of the "Convention on the Rights of Persons with Disabilities," along with "General Comment 4," explicitly outlines the right of every person to an inclusive education at every level. And yet, even amongst supporters of inclusive education, it is not uncommon for some students to be considered 'too disabled' to be…

Background: Families struggle to support family members with profound intellectual and multiple disabilities (PIMD), especially in low resourced settings where formal services may not be available. Method: The adapted Family Community Participation survey, measuring perceptions of community participation, was administered to 67 primary caregivers…

Background: Participation is a central aspect of quality of life, and it is indicative of high-quality outcomes for people with intellectual disabilities. However, participation is difficult to achieve for adults with profound intellectual and multiple disabilities. Aim: To describe staff members' perceptions of what participation means for adults…

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 was used. Findings: The essential meaning of the…