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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
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
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
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
Ilse Harmina Zaal-Schuller; K. Kruithof; M. Hoogsteyns; A.M. Nieuwenhuijse; D.L. Willems; S.A. Huisman – Journal of Intellectual & Developmental Disability, 2025
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…
Descriptors: Patients, Severe Intellectual Disability, Multiple Disabilities, Knowledge Level
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
Annemieke Hoogstad; Liesbeth Mevissen; Michelle Kraaij; Robert Didden – Journal of Mental Health Research in Intellectual Disabilities, 2024
Introduction: In persons with severe to moderate intellectual disability (SID), no valid and reliable diagnostic instrument is available to determine PTSD. In this study, a new instrument was evaluated: the Diagnostic Interview Trauma and Stressors -- Severe Intellectual Disability (DITS-SID). Methods: DITS-SID, Aberrant Behavior Checklist and…
Descriptors: Posttraumatic Stress Disorder, Adults, Intellectual Disability, Severe Intellectual Disability
Diane Fox; Julie Beadle-Brown; Jill Bradshaw; Christine Bigby; Lisa Richardson – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Previous research identifies organisational culture as one of a number of factors associated with the quality of life outcomes of group home residents' with intellectual and developmental disabilities. This study aims to elaborate on the dimensions of group home culture in settings in England. Method: Participant observations and…
Descriptors: Intellectual Disability, Group Homes, Developmental Disabilities, Organizational Culture
Sedlácková, Dagmar; Kantor, Jirí; Dömischová, Ivona; Kantorová, Lucia – British Journal of Learning Disabilities, 2023
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…
Descriptors: Experience, Mothers, Severe Disabilities, Severe Intellectual Disability
Nijs, S.; Zijlmans, M.; Schuengel, C.; Embregts, P. J. C. M. – Journal of Intellectual & Developmental Disability, 2023
Background: The high support needs of persons with profound intellectual and multiple disabilities hamper their possibilities for self-determination. To support their self-determination understanding of what this means for this group is necessary. Method: A three-round Delphi procedure with international experts was undertaken to operationalise…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Self Determination, Individual Characteristics
Wessels, Marleen D.; Van Assen, Arjen A. G.; Post, Wendy J.; Van der Putten, Annette A. J. – Journal of Intellectual & Developmental Disability, 2023
Background: There are no psychometrically validated instruments available to measure motor skills of children with profound intellectual and multiple disabilities (PIMD). In this study, the construct validity and reliability (Rho) of the Motor Development List for children with PIMD (MDL-PIMD), a proxy-reported measure, was investigated. Methods:…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Psychomotor Skills, Test Validity
Amanda Gillooly; Dave Dagnan; Richard Hastings; Chris Hatton; Nicola McMeekin; Susie Baines; S. -A. Cooper; Lucy Crawford; David Gillespie; Jenny Miller; Andrew Jahoda – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Almost no research has been published reporting on evaluations of the effectiveness of psychological interventions for people with severe to profound intellectual disabilities and depression. This paper describes the development and initial feasibility testing of an adapted Behavioural Activation therapy (BeatIt2) for this population.…
Descriptors: Severe Intellectual Disability, Psychological Needs, Intervention, Depression (Psychology)
Maria Baranowski; Margherita Cameranesi; Javier Mignone; Lindsay McCombe; Kayla Kostal; Jenna Heschuk; Shahin Shooshtari – Journal of Intellectual & Developmental Disability, 2024
Background: Deinstitutionalisation refers to the transition of individuals with intellectual and developmental disabilities from large institutions to smaller homes in the community. The purpose of this study was to explore how family members of persons with intellectual and developmental disabilities perceived their loved ones' community…
Descriptors: Severe Intellectual Disability, Severe Disabilities, Developmental Disabilities, Family Attitudes
Annamarie Elisabet Wyngaard; Catharina Jacoba Elizabeth Uys – Journal of Applied Research in Intellectual Disabilities, 2025
Background: When supporting learners with severe intellectual disabilities, teaching methods needs to be adapted. Vona du Toit Model of Creative Ability (VdTMoCA) aims to enhance participation and facilitate adaptive responses through targeted intervention principles. This study aimed to develop and evaluate the impact of an intervention programme…
Descriptors: Intellectual Disability, Independent Living, Severe Intellectual Disability, Students with Disabilities
Wessels, Marleen D.; van der Putten, Annette A. J.; Paap, Muirne C. S. – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Knowledge about the quality of assessment methods used in the support of people with profound intellectual and multiple disabilities (PIMD) is scarce. This study aimed to provide an overview of the assessment methods used in practice and to examine whether these instruments were studied for their psychometric properties for people with…
Descriptors: Foreign Countries, Severe Intellectual Disability, Multiple Disabilities, Evaluation Methods
