Background: Snoezelen is often used for people with profound intellectual and multiple disabilities, but scarcely evaluated. This study aimed to provide insight into the application and perceived effects of snoezelen from the perspective of support persons. Method: We conducted an international survey with professionals (n = 130) and relatives (n…

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: 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 an instruction protocol for the…

The capacity for all students to meaningfully access the curriculum is a central tenant of inclusion. Investigation into curriculum provision for students with severe intellectual disabilities or profound and multiple learning difficulties (S/PMLD) receives little consideration in the literature; however, it has increasing relevance in designing…

Background: Inclusive research advocates for the involvement of people with intellectual disabilities to be more than passive participants within the research process. Methods: This study used a participatory design with proxies to consult with 13 people with profound intellectual and multiple disabilities, on their musical preferences. Four…

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: 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: 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…

Background: Patients with profound intellectual and multiple disabilities (PIMD) cannot clearly express themselves. Therefore, tacit knowledge (TK) is crucial in caring for individuals with PIMD, while it possibly also plays a significant role in medical consultations. Method: A qualitative inductive, thematic analysis was performed of 14…

Introduction/background: This study aims to determine the impact of a person with profound intellectual and multiple disabilities on peer relationships of their siblings. Methods: Information obtained from typically developing siblings of individuals with profound intellectual and multiple disabilities served as research material for this study.…

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: Interactive engagement, specifically attention and initiation, are considered important skills for facilitating development and learning in students with severe/profound intellectual and multiple disabilities. Prior research has suggested that music therapy and multisensory storytelling are two promising interventions for supporting…

Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. Method: We conducted a mixed methods study,…

Of individuals with an intellectual disability, 1% are recognized as having a profound intellectual disability and commonly present at a mental age of roughly three years or below. While inclusive music education models and therapeutic models have received considerable attention, there is a scarcity of literature on music education for students…

Background: Caring for persons with profound intellectual and multiple disabilities (PIMD) demands specific expertise. Tacit knowledge seems to play an important role, but little is known about its nature, including what is necessary for its development and transfer. Aim: To gain understanding of the nature and development of tacit knowledge…