Background: Some adults with intellectual disabilities do not acquire oral feeding skills and are dependent on gastrostomy tube supplementation. Methods: Two adults with intellectual and multiple disabilities received intervention for oral consumption during daily meals (standardised food and liquid quantities, individualised procedural…

Background: Although particular technologies can enhance the quality of life (QoL) of people with profound intellectual and multiple disabilities (we use the term pervasive support needs), their objectives and outcomes are understudied. A systematic literature review was therefore conducted to explore this topic. Method: A search of four databases…

Background: Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger…

Sheltered work and leisure activities were locked down in at the Signo centre in March 2020 because of the COVID-19 pandemic. The Signo centre is a Norwegian national centre for adults with multiple, complex needs, including severe sensory loss/impairments. Tension and uncertainty rapidly spread among relatives and workers. To explore the impacts…

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…

There is a significant variability in the prevalence of psychotropic medication use among young autistic persons worldwide and this is under-studied in Australia. Apart from risperidone, approved by the Therapeutic Goods Administration to manage challenging behaviour, the appropriateness of other psychotropic medications prescribed to young…

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…

The purpose of this study was to examine factors affecting physical activity (PA) and sedentary pursuits of children with autism spectrum disorder (ASD) throughout the week, during weekdays, and on weekend days. Sixty-eight children with ASD aged 6-17 years participated in this study. An ActiGraph accelerometer and activity log were used to assess…

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…

People with severe/profound and multiple disabilities may receive insufficient stimulation and correspondingly show low levels of happiness (satisfaction). Various stimulation strategies have been proposed to address this situation. This study aimed to extend the assessment of two of those strategies (i.e., self-regulated and staff-regulated…

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.…