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Navigating Uncertainty: Taking Methodological Cues from Relatives and Care Professionals for Researching the Perspectives of People with Profound Intellectual and Multiple Disabilities
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Femmianne Bredewold; Simon van der Weele – Journal of Intellectual & Developmental Disability, 2025
Background: Researching the perspectives of people with profound intellectual and multiple disabilities (PIMD) presents complexity and uncertainty. Traditional research often prioritises rational, objectivist methods, which may overlook this complexity. Aims: This study aimed to develop methodological cues for researchers studying the perspectives…
Descriptors: Research Methodology, Cues, Family Influence, Caregivers
Tacit Knowledge in Medical Consultations for Patients with Profound Intellectual and Multiple Disabilities: An Exploratory Qualitative Study
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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
What Is It Like to Be a Twin of a Person with Profound Intellectual and Multiple Disabilities?
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Jakub Niedbalski – Journal of Intellectual & Developmental Disability, 2025
Background: The aim of this study was to establish the perceived quality of life in twin siblings of individuals with profound intellectual and multiple disabilities (PIMD) living in Poland. Method: Semi-structured interviews were conducted with siblings of people with PMID. The interviews were subjected to thematic analysis according to grounded…
Descriptors: Twins, Quality of Life, Siblings, Severe Intellectual Disability
School Staff Perspectives on Using Augmentative and Alternative Communication with Students with Severe or Profound Intellectual and Multiple Disabilities
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Anna Rensfeldt Flink; Sofia Wallin; Johanna Larsson; Ellen Westling; Jakob Åsberg Johnels – Journal of Research in Special Educational Needs, 2025
This mixed methods survey study aims to investigate school staff's perspectives on using augmentative and alternative communication (AAC) with students with the most severe disabilities in Swedish school settings. The study employed a convergent mixed methods design, where both quantitative and qualitative data were collected and analysed in…
Descriptors: Foreign Countries, School Personnel, Attitudes, Augmentative and Alternative Communication
What Does It Mean to Be a 'Person' with Profound and Multiple Learning Disabilities? Presenting the Views of Family Members and Allies
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Ben Simmons; Stuart Read – British Journal of Learning Disabilities, 2025
Background: Individuals with profound and multiple learning disabilities are at the centre of debates about what it means to be a person. These debates sometimes start from the position that a person is somebody who possesses mature cognitive abilities, such as intentional communication skills and self-reflection (which individuals with profound…
Descriptors: Severe Disabilities, Multiple Disabilities, Learning Disabilities, Family Attitudes
'More than a Just a Physical Condition' -- Recognising the Educational and Emotional Needs of Children and Young Adults with Duchenne Muscular Dystrophy
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Janet Hoskin; Benjamin James; Jo Finch – European Journal of Special Needs Education, 2025
Advances in medical care have seen children and young people with rare and life shortening conditions, living longer. This is the case for those living with Duchenne Muscular Dystrophy, whose life expectancy has doubled over the last few decades from around 20 to 40 years. Improving care has tended to focus on the physical aspects of the…
Descriptors: Foreign Countries, Students with Disabilities, Genetic Disorders, Special Education
A Critical Commentary on the Categorisation of Students with Diagnoses in Greek Special Schools
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Vassilios Papadimitriou – British Journal of Special Education, 2025
In accordance with Greek law, students with special educational needs and/or disabilities attend mainstream schools, unless an Interdisciplinary Assessment, Counselling and Support Centre recommends otherwise based on the type or severity of the disability. This paper presents quantitative data from the Greek Statistical Authority regarding the…
Descriptors: Foreign Countries, Special Schools, Special Education, Inclusion