Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience…

Background: Olfaction provides information on very important dimensions of the environment; however the olfactory abilities of children and young people with profound intellectual and multiple disabilities (PIMD) remain largely unknown. This within-subjects study explores olfactory detection abilities in children with PIMD. Method: Twenty-two…

Background: Children and young people (CYP) with severe or profound and multiple learning disabilities are more likely to experience difficulties engaging for long periods. Finding ways to facilitate their engagement is crucial in promoting their social and emotional development and their mental well-being, particularly as they are more vulnerable…

Introduction: This paper aims to identify to what extent staff training interventions are successful in enhancing the development of communication skills in people with profound intellectual and multiple disabilities. Methods: A systematic review was undertaken, conforming to PRISMA guidelines. English language, peer reviewed, empirical studies of…

Background: Families with a child with profound intellectual and multiple disabilities have to manage the pervasive support needs of their child, which is a complex task. By properly supporting them, we can ensure these families live a positive and meaningful life. Method: A product to support these families was developed using the method of…

Background: The objective of this study is to explore experiences of Czech mothers caring for children with profound intellectual and multiple disabilities. Methods: Semistructured interviews combined with biographical narration of mothers of children with profound intellectual and multiple disabilities and a short questionnaire for demographic…

Background: Most parents of children with an intellectual disability or who are autistic identify positives in their family life and their own wellbeing, in addition to reported mental health challenges. Several models and interventions have been developed in relation to parent carer wellbeing. Few studies have asked parent carers how they support…

Background: Parents' tacit knowledge plays an important role in the care of persons with profound intellectual and multiple disabilities (PIMD). As little is known about its nature and use, we aimed to explore this parental tacit knowledge. Method: We conducted semi-structured interviews with parents (n = 11) about their tacit knowledge of their…

The Picture Exchange Communication System (PECS) is a popular augmentative and alternative communication intervention for individuals with developmental disabilities that includes six, sequential phases of instruction. We systematically reviewed published and unpublished single-case PECS studies for details about the percentage of participants…

Music is motivational, accessible and engaging for individuals with learning disabilities. Several systematic reviews have addressed the effects of music activity on people with learning disabilities; however, none has specifically reviewed the use of musical activity with people with profound and multiple learning disabilities. This review aimed…

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…

Background: Constipation is common in children with intellectual disabilities and/or autism, but poorly researched. This study looks to understand parental knowledge, attitudes and management practices towards constipation in children with intellectual disabilities and/or autism. Methods: A cross-sectional online survey developed with patient…

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: 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…