Background: Support staff often face challenges with respect to experiencing meaningful moments of interaction with people with profound intellectual disabilities. Explicating such situational experiences of meaningfulness by staff members could facilitate the experience of meaningfulness for all staff. Method: In this multiple case study, three…

Introduction: The "Programma Perspectief" intervention aims to provide optimal support to people with profound intellectual and multiple disabilities. Knowledge concerning intervention fidelity is outdated and scarce as is typical for the support of persons with special needs. Methods: An survey amongst care professionals (n = 62)…

Background: This study explores communication partners' perceptions of their roles and responsibilities in the design, planning and use of augmentative and alternative communication (AAC) with individuals with severe/profound intellectual disability. Methods: A qualitative descriptive approach was used. Purposive sampling, data collection and…

Background: Initiating meaningful moments of interaction with people with profound intellectual disabilities can prove to be difficult for support staff. Exploring the behaviour of support staff that precedes the initiations of behaviour by people with profound intellectual disabilities helps to shed light upon the potential facilitating effects…

Background: Facilitating adult sibling involvement for individuals with pervasive support needs is important. This study explores the attitudes of healthcare professionals in this process. Method: The attitudes of healthcare professionals (n = 60) in the Netherlands were explored through an online, self-developed survey with open and closed-ended…

Background: Parents' decisions to use out-of-home support for children with intellectual disabilities significantly impact all family members, including siblings. However, siblings' perspectives on this transition to group homes remain underexplored. This study examines siblings' emotional experiences and changes in their personal and family lives…

Background: People with profound and multiple intellectual disabilities were disproportionately negatively affected by the COVID-19 pandemic. Few studies exist about the perceived longer-term impact of the pandemic on this group. Methods: Data were collected through a two-stage narrative interview process. Six family members told their story about…

Background: People with intellectual disability face numerous barriers to accessing basic preventative health care. This study documents the protocol, process and health outcomes of a multidisciplinary hospital-based Health Care Access Service providing pre-procedure sedation and general anaesthesia for adults with moderate to profound…

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…

Background: Communicating with people with severe/profound intellectual disabilities is essential for person-centred, rights-based support. Despite a proliferation of research around COVID-19, there is a dearth of evidence exploring its impact on communication with people with severe/profound intellectual disabilities. This study aimed to explore…

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…