Background: For families with adolescent children, the transition to adulthood is usually challenging. This period may be extra demanding for families with a child with profound intellectual and multiple disabilities due to the child's strong and persistent support needs. To support these families during this phase and to facilitate the transition…

Background: Knowledge about the quality of assessment methods used in the support of people with profound intellectual and multiple disabilities (PIMD) is scarce. This study aimed to provide an overview of the assessment methods used in practice and to examine whether these instruments were studied for their psychometric properties for people with…

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…

Communication assessment of people with profound intellectual and multiple disabilities (PIMD) has seldom been investigated. Here, we explore approaches and decision making in undertaking communication assessments in this group of people. A questionnaire was sent to UK practitioners. The questionnaire elicited information about assessment…

Background: Children with profound intellectual and multiple disabilities (PIMD) demand intense family accommodations from birth and onwards. This study used an exploratory and qualitative study design to investigate stability and change in sustainability of daily routines and social networks of Swedish families of children with PIMD. Materials…

Background: Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods: A mixed method study was performed including qualitative data from interviews with 11…

Background: Sensory assessment of individuals with profound intellectual and multiple disabilities (PIMD) can be difficult for several reasons, including the idiosyncratic reactions that these individuals exhibit to environmental stimuli. This case report presents a combination of behavioural and physiological measurements aimed at providing an…

Background: People with an intellectual disability whose behaviours are perceived to be of serious harm to themselves or others are at risk of being subjected to restrictive interventions. Prevalence rates are difficult to determine, as most research is unable to draw on the results of population-level data. Method: The current study reports on…

Background: The supports paradigm has shifted focus from assessing competence and deficits among people with disabilities to identifying supports needed to live meaningful and productive lives in inclusive settings. Consequently, a rigorous and robust system is required that is capable of accurately determining the type and intensity of support…

Background: Because of the complexity of the problems that affect children with profound intellectual and multiple disabilities (PIMD), communication between parents and teachers at special educational centres is indispensable. Logs are widely used in the Netherlands although only little is known about the effectiveness and efficiency of…

Background: The idea that raising a child with disabilities has a negative impact on the parents' relationship is still widely accepted despite contradictory research findings. This article addresses the impact of raising a child with disabilities on family structure in the present Norwegian context. Method: Family demographics were collected at…

Background: The aim of this study was to analyse the impact of medical conditions of children with profound intellectual and multiple disabilities on the professional support they receive in centres for special education. Method: The medical files, the daily records and daily communication records between parents and professionals were reviewed…

Background: Obesity and the health problems associated with it have substantial economic consequences for health care systems. Little information is available concerning obesity-related problems among people with intellectual disabilities. The aims of this study were to analyse patterns of obesity among children and adolescents with intellectual…