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Effects of the Attune & Stimulate-Checklist for Caregivers of People with Severe and Profound Intellectual Disabilities: A Randomised Controlled Trial
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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
Behavioural Interventions to Treat Anxiety in Adults with Autism and Moderate to Severe Intellectual Disabilities: The BEAMS-ID Feasibility Study
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Peter E. Langdon; Magdalena M. Apanasionok; Emma Scripps; Alastair Barrowcliff; Asit Biswas; Karen Bunning; Cheryl Burbidge; Katherine Byron-Daniel; Alex Cookson; Sarah Croom; Malwina Filipczuk; David Gillespie; Richard P. Hastings; Andrew Jahoda; Rachel McNamara; Lawrence Patterson; Dheeraj Rai; Robyn Steward; Kylie M. Gray – Journal of Applied Research in Intellectual Disabilities, 2024
Background: The aim of this feasibility study was to adapt and model a behavioural intervention for anxiety with autistic adults with moderate to severe intellectual disabilities. Method: Twenty-eight autistic adults with moderate or severe intellectual disabilities, 37 carers, and 40 therapists took part in this single-group non-randomised…
Descriptors: Autism Spectrum Disorders, Adults, Severe Intellectual Disability, Moderate Intellectual Disability
Tacit Knowledge in Dyads of Persons with Profound Intellectual and Multiple Disabilities and Their Caregivers: An Interpretative Literature Study
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Hoogsteyns, Maartje; Zaal-Schuller, Ilse; Huisman, Sylvia; Nieuwenhuijse, Appolonia Marga; Etten-Jamaludi, Faridi; Willems, Dick; Kruithof, Kasper – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Caring for persons with profound intellectual and multiple disabilities (PIMD) demands specific expertise. Tacit knowledge seems to play an important role, but little is known about its nature, including what is necessary for its development and transfer. Aim: To gain understanding of the nature and development of tacit knowledge…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Severe Disabilities, Knowledge Level
Meaningful Moments of Interaction with People with Profound Intellectual Disabilities: Reflections from Direct Support Staff
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Penninga, Wieneke; Nijs, Sara L. P.; Bakel, Hedwig J. A.; Embregts, Petri J. C. M. – Journal of Applied Research in Intellectual Disabilities, 2022
Background; High-quality, affective relationships are built on meaningful moments of interaction, which are challenging for support staff to establish with people with profound intellectual disabilities. Therefore, we explored what makes a moment of interaction meaningful to support staff and what circumstances facilitate meaningful moments of…
Descriptors: Interaction, Interpersonal Relationship, Caregivers, Employees
Building High-Quality Interpersonal Staff-Client Relationships with People with Severe to Profound Intellectual Disabilities and Challenging Behavior: Insights of Professionals and Relatives
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Maaike Hermsen; Rianne Simons; Hennie van Veen; Angela Prudon; Lina Rooijackers; Roy Otten; Renske Koordeman – Journal of Intellectual Disabilities, 2024
Background: Staff-client relationships impact the quality of support and life of people with severe to profound intellectual disabilities and challenging behavior, but are challenging to build due to clients' intense, complex and varying support needs. The present study explores the perspectives of professionals and relatives on what affects these…
Descriptors: Interpersonal Relationship, Severe Intellectual Disability, Behavior Problems, Individual Characteristics
Mingled Bodies and Voices: Maternal Reflections on Caregiver Expertise and Intellectual Disability
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MacGregor, Laura – Journal of Intellectual Disabilities, 2022
The risk of viral infection during the COVID-19 pandemic has caused many hospitals to prohibit all patient visitors, including family caregivers for people with intellectual disabilities. Drawing on a postmodern, intersubjective view of the body, as well as my experience as the mother of a young adult with profound disabilities, I argue that…
Descriptors: Mothers, Severe Intellectual Disability, Parent Attitudes, Caregivers
Use of Behaviour Change Techniques by Direct Support Professionals to Support Healthy Lifestyle Behaviour for People with Moderate to Profound Intellectual Disabilities
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Overwijk, Annelies; van der Putten, Annette A. J.; van der Schans, Cees P.; Willems, Mariël; Hilgenkamp, Thessa I. M.; Waninge, Aly – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Behaviour change techniques (BCTs) can be employed to support a healthy lifestyle for people with intellectual disabilities. The aim of this study is to determine whether and which BCTs are used by direct support professionals (DSPs) for supporting healthy lifestyle behaviour of people with moderate to profound intellectual…
Descriptors: Behavior Modification, Behavior Change, Health Promotion, Moderate Intellectual Disability
Orienting to Affect in Services for People with Severe or Profound Intellectual Disabilities: A UK-Based Investigation
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Walton, Chris; Antaki, Charles; Finlay, W. M. L. – Journal of Applied Research in Intellectual Disabilities, 2020
Background: This study argues for displays of affect by people with severe or profound intellectual disabilities to be analysed in the course of everyday interactions with the people who support them. Method: Conversation analysis is applied to the affective displays of residents of a social care service for people with severe or profound…
Descriptors: Severe Intellectual Disability, Interaction, Affective Behavior, Caregivers
Siblings' and Parents' Perspectives on the Future Care for Their Family Member with Profound Intellectual and Multiple Disabilities: A Qualitative Study
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Kruithof, Kasper; IJzerman, Lisa; Nieuwenhuijse, Appolonia; Huisman, Sylvia; Schippers, Alice; Willems, Dick; Olsman, Erik – Journal of Intellectual & Developmental Disability, 2021
Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings' role regarding future care/support for their family member, we interviewed eight…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Siblings, Role
Dementia in People with Severe or Profound Intellectual (and Multiple) Disabilities: Focus Group Research into Relevance, Symptoms and Training Needs
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Dekker, Alain D.; Wissing, Maureen B. G.; Ulgiati, Aurora M.; Bijl, Bas; van Gool, Gaby; Groen, Marieke R.; Grootendorst, Esther S.; van der Wal, Ina A.; Hobbelen, Johannes S. M.; De Deyn, Peter P.; Waninge, Aly – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.…
Descriptors: Dementia, Severe Intellectual Disability, Multiple Disabilities, Clinical Diagnosis
Quality of Life of Persons with Profound Intellectual and Multiple Disabilities: A Narrative Literature Review of Concepts, Assessment Methods and Assessors
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Nieuwenhuijse, Appolonia M.; Willems, Dick L.; van Goudoever, Johannes B.; Echteld, Michael A.; Olsman, Erik – Journal of Intellectual & Developmental Disability, 2019
Background: The objective of this study was to provide an overview of concepts, methods of assessment and assessors in empirical studies on quality of life (QoL) of persons with Profound Intellectual and Multiple Disabilities (PIMD). Method: A narrative literature review was conducted by searching electronic databases until December 2016, and the…
Descriptors: Quality of Life, Severe Intellectual Disability, Multiple Disabilities, Evaluation Methods
The Perspectives of Professional Caregivers on Quality of Life of Persons with Profound Intellectual and Multiple Disabilities: A Qualitative Study
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Nieuwenhuijse, A. M.; Willems, D. L.; van Goudoever, J. B.; Olsman, E. – International Journal of Developmental Disabilities, 2022
Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Caregiver Attitudes, Caregivers
Capacity Building for Quality Care and Education for Children with Severe to Profound Intellectual Disabilities in South Africa
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Vergunst, Richard; McKenzie, Judith; Hansen, Anthea – Journal of Intellectual Disabilities, 2022
In the South African context, children with severe to profound intellectual disabilities are not accommodated in the compulsory education system, although steps are being taken in this direction in acknowledgement of their right to education. Critical to this development is the training of educators and caregivers. There is a paucity of studies…
Descriptors: Foreign Countries, Special Education Teachers, Caregivers, Capacity Building
Exploring Spontaneous Interactions between People with Profound Intellectual and Multiple Disabilities and Their Peers
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Kamstra, A.; van der Putten, A. A. J.; Maes, B.; Vlaskamp, C. – Journal of Intellectual & Developmental Disability, 2019
Background: Peers living in the same group form important interaction partners for people with profound intellectual and multiple disabilities (PIMD). Given the severity of their disabilities, direct support persons (DSPs) play a significant role in facilitating interactions between these peers. This study explores the spontaneous interactions…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Interaction, Peer Relationship
Placing the Preferences of People with Profound Intellectual and Multiple Disabilities at the Center of End-of-Life Decision Making through Storytelling
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Watson, Joanne; Voss, Hille; Bloomer, Melissa J. – Research and Practice for Persons with Severe Disabilities, 2019
With a focus on the use of narrative approaches, this article is a commentary on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to…
Descriptors: Preferences, Death, Decision Making, Severe Intellectual Disability
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