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Direct linkMichelle Murphy; Anne-Marie Martin – British Journal of Learning Disabilities, 2024
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…
Descriptors: COVID-19, Severe Intellectual Disability, Communication (Thought Transfer), Pandemics
Siméon T. A. Lahaije; Jorien Luijkx; Aly Waninge; Annette A. J. van der Putten – Intellectual and Developmental Disabilities, 2024
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…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Quality of Life, Children
Gemma Testerink; Annet ten Brug; Gerdine Douma; Annette van der Putten – Journal of Applied Research in Intellectual Disabilities, 2024
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…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Program Effectiveness, Professional Personnel
Rendoth, Tess; Duncan, Jill; Foggett, Judith – Journal of Research in Special Educational Needs, 2022
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…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Learning Disabilities, Inclusion
Enninga, Annemieke; Waninge, Aly; Post, Wendy J.; van der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2023
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…
Descriptors: Test Reliability, Pain, Behavior, Adults
Rushton, Rosie; Kossyvaki, Lila; Terlektsi, Emmanouela – British Journal of Learning Disabilities, 2023
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…
Descriptors: Music, Music Appreciation, Preferences, Severe Intellectual Disability
Petitpierre, Geneviève; Dind, Juliane; De Blasio, Catherine; Gremaud, Germaine – Journal of Applied Research in Intellectual Disabilities, 2022
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…
Descriptors: Olfactory Perception, Children, Adolescents, Stimuli
Luitwieler, Nicole; Luijkx, Jorien; Stege, Heleen A.; Grootoonk, Anneke; Schans, Cees P.; Putten, Annette A. J.; Waninge, Aly – Journal of Applied Research in Intellectual Disabilities, 2024
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…
Descriptors: Adolescents, Adolescent Development, Family Role, Severe Intellectual Disability
Maeve Goodall; Kate Irving; Mary Nevin – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Pain recognition and assessment in individuals with profound intellectual disabilities are challenging. Exploring effective methods of addressing this is essential. This study aims to discover current nursing practice in this area of care as the first of a four-phased appreciative inquiry study, to inform further research and practice.…
Descriptors: Pain, Severe Intellectual Disability, Nurses, Role
Dorsman, Naomi I.; Waninge, Aly; van der Schans, Cees P.; Luijkx, Jorien; Van der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume. Method: We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire. Results: Most participants (89.7%) assumed…
Descriptors: Foreign Countries, Adults, Siblings, Severe Intellectual Disability
Jakub Niedbalski – Journal of Intellectual Disabilities, 2024
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.…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Peer Relationship, Siblings
Doodeman, Tanja W. M.; Schuengel, Carlo; Sterkenburg, Paula S. – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Sensitive responsiveness is an important aspect in affect-regulation of people with severe to profound intellectual disabilities. Aim: This randomized controlled trial evaluated the Attune & Stimulate-checklist, a tool for detecting subtle and idiosyncratic communicative behaviours and responding adequately. Methods: Effects on the…
Descriptors: Severe Intellectual Disability, Interpersonal Communication, Responses, Caregivers
Andrews, Thomas; Hodge, Nick; Redmore, Ned – International Journal of Inclusive Education, 2022
In this paper we introduce Ashworth's lifeworld fractions as a methodological framework for inclusive research with autistic people 'with profound learning disabilities'. We first define the fractions and then evaluate their potential for enabling research within the 'third space' of inclusive research. Fundamental to the third space is the…
Descriptors: Inclusion, Autism, Pervasive Developmental Disorders, Severe Intellectual Disability
Linn Johnels; Helena Wandin; Shakila Dada; Jenny Wilder – British Journal of Learning Disabilities, 2024
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…
Descriptors: Students with Disabilities, Severe Intellectual Disability, Multiple Disabilities, Music Therapy
Kasper Kruithof; Erik Olsman; Dick Willems; Karin Volkers; Bas Kleijwegt; Appolonia Nieuwenhuijse – Journal of Applied Research in Intellectual Disabilities, 2024
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,…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Family Needs, Parent Role
