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Direct linkHoogsteyns, 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
Lotte Piekema; Annet ten Brug; Aly Waninge; Annette van der Putten – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Although particular technologies can enhance the quality of life (QoL) of people with profound intellectual and multiple disabilities (we use the term pervasive support needs), their objectives and outcomes are understudied. A systematic literature review was therefore conducted to explore this topic. Method: A search of four databases…
Descriptors: Quality of Life, Disabilities, Intellectual Disability, Assistive Technology
Zalmstra, Trees A. L.; Reinders-Messelink, Heleen A.; Elema, Agnes; Van Gils, Willemijn; Van Der Sluis, Corry K.; Van Der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2024
Background: A measure to provide insight regarding health-related quality of life of adults with severe motor and intellectual disabilities was lacking. For this reason, the CPADULT was developed. This measure includes domains relating to an individual's physical, mental, and social functioning. The purpose of this study was to assess the…
Descriptors: Test Validity, Test Reliability, Quality of Life, Adults
Karine Baumstarck; Sibylle Del Duca; Houria El Ouazzani; Ilyes Hamouda; Any Beltran Anzola; Marie-Anastasie Aim; Marie-Christine Rousseau – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger…
Descriptors: Quality of Life, Severe Disabilities, Multiple Disabilities, Intellectual Disability
Jean Ware; Susan Buell; Darren D. Chadwick; Jill Bradshaw; Juliet Goldbart – Journal of Applied Research in Intellectual Disabilities, 2024
Introduction: This paper aims to identify to what extent staff training interventions are successful in enhancing the development of communication skills in people with profound intellectual and multiple disabilities. Methods: A systematic review was undertaken, conforming to PRISMA guidelines. English language, peer reviewed, empirical studies of…
Descriptors: Children, Adults, Intellectual Disability, Severe Disabilities
Macey Barratt; Peter Lewis; Natalie Duckworth; Natasha Jojo; Viktorija Malecka; Signe Tomsone; Dita Rituma; Nathan J. Wilson – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children. Method: A qualitative…
Descriptors: Parent Attitudes, Quality of Life, Child Rearing, Parent Child Relationship
Sarah E. Bjornson; Adrienne Perry – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Children with severe developmental disabilities are frequently excluded from research, and little is known about their quality of life (QoL). Using a mixed-methods approach, this study examined relationships between school factors and QoL for these children and their families. Method: 171 parents of children with severe developmental…
Descriptors: Students with Disabilities, Developmental Disabilities, Severe Disabilities, Quality of Life
Zalmstra, Trees A. L.; Elema, Agnes; van Gils, Willemijn; Reinders-Messelink, Heleen A.; van der Sluis, Corry K.; van der Putten, Annette A. J. – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Insight in health-related quality of life (HRQoL) of adults with severe disabilities who are non-ambulatory is important, but a measure is lacking. The aim was to develop a HRQoL measure for this group. Method: The developmental process consisted of the adaptation process of a proxy HRQoL measure for children with severe disabilities…
Descriptors: Quality of Life, Adults, Severe Disabilities, Physical Disabilities
Van Keer, Ines; Van Leeuwen, Karla; Maes, Bea – Journal of Applied Research in Intellectual Disabilities, 2022
Background: It is generally acknowledged that parent social support is an important target for intervention. To explore the specific needs of parents of young children with a significant cognitive and motor developmental delay (SDD), we aim to chart the sources and perceived sufficiency of the social support they receive. Method: Within the…
Descriptors: Parent Attitudes, Social Support Groups, Intellectual Disability, Developmental Delays
Smits, Hedwig J. H.; Seelen-de Lang, Birgit L.; Penterman, Engelbertus J. M.; Nijman, Henk L. I.; Noorthoorn, Eric O. – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Elucidating the influence of mild intellectual disability (MID; IQ 50-70)/borderline intellectual functioning (BIF; IQ 70-85) and (comorbid) post-traumatic stress disorder (PTSD) on the quality of life of patients with serious mental illness (SMI) could improve their mental health care. Method: This study comprises a prospective…
Descriptors: Mental Disorders, Mild Intellectual Disability, Comorbidity, Posttraumatic Stress Disorder
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
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
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
Kruithof, Kasper; Willems, Dick; Etten-Jamaludin, Faridi; Olsman, Erik – Journal of Applied Research in Intellectual Disabilities, 2020
Background: Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge. Method: We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index…
Descriptors: Parent Child Relationship, Caregiver Role, Children, Intellectual Disability
Sien Vandesande; Evy Meys; Bea Maes – Journal of Applied Research in Intellectual Disabilities, 2025
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…
Descriptors: Siblings, Children, Adolescents, Emotional Response
