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Direct linkLaermans, P.; Morisse, F.; Lombardi, M.; Gérard, S.; Vandevelde, S.; de Kuijper, G.; Audenaert, K.; Claes, C. – International Journal of Developmental Disabilities, 2023
Introduction: Adults with intellectual disabilities have an increased vulnerability to mental health problems and challenging behaviour. In addition to psychotherapeutic or psychoeducational methods, off-label pharmacotherapy, is a commonly used treatment modality. Objective: The aim of this study was to establish evidence-based guideline…
Descriptors: Adults, Intellectual Disability, Drug Therapy, Behavior Problems
Lahaije, Siméon T. A.; Luijkx, Jorien; Waninge, Aly; van der Putten, Annette A. J. – Research and Practice for Persons with Severe Disabilities, 2023
In disability research, there is an increased focus on the well-being of families with a child with a disability, also known as family quality of life (FQOL). However, the well-being of families with a child with profound intellectual and multiple disabilities (PIMD) has not yet been explored, even though their well-being may be affected by the…
Descriptors: Well Being, Family Involvement, Students with Disabilities, Intellectual Disability
Baudelet, Margot; Van den Steen, Leen; Wouters, Sophie; De Bodt, Marc; Vanderveken, Olivier; Duprez, Fréderic; Van Nuffelen, Gwen – International Journal of Language & Communication Disorders, 2023
Background: Acute and late toxicities in patients treated with (chemo)radiotherapy for head and neck cancer (HNC) is common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. Aims: Since Dutch…
Descriptors: Cancer, Health Services, Test Validity, Indo European Languages
Wallace, Sarah J.; Worrall, Linda; Rose, Tanya A.; Alyahya, Reem S. W.; Babbitt, Edna; Beeke, Suzanne; de Beer, Carola; Bose, Arpita; Bowen, Audrey; Brady, Marian C.; Breitenstein, Caterina; Bruehl, Stefanie; Bryant, Lucy; Cheng, Bonnie B. Y.; Cherney, Leora R.; Conroy, Paul; Copland, David A.; Croteau, Claire; Cruice, Madeline; Dipper, Lucy; Hilari, Katerina; Howe, Tami; Kelly, Helen; Kiran, Swathi; Laska, Ann-Charlotte; Marshall, Jane; Murray, Laura L.; Patterson, Janet; Pearl, Gill; Quinting, Jana; Rochon, Elizabeth; Rose, Miranda L.; Rubi-Fessen, Ilona; Sage, Karen; Simmons-Mackie, Nina; Visch-Brink, Evy; Volkmer, Anna; Webster, Janet; Whitworth, Anne; Le Dorze, Guylaine – International Journal of Language & Communication Disorders, 2023
Background: Evidence-based recommendations for a core outcome set (COS; minimum set of outcomes) for aphasia treatment research have been developed (the Research Outcome Measurement in Aphasia--ROMA, COS). Five recommended core outcome constructs: communication, language, quality of life, emotional well-being and patient-reported…
Descriptors: Interpersonal Communication, Communication Skills, Aphasia, Foreign Countries
Van der Meulen, Anne Pier S.; Taminiau, Elsbeth F.; Hertogh, Cees M. P. M.; Embregts, Petri J. C. M. – International Journal of Developmental Disabilities, 2022
The application of restrictions plays a great part in daily support of people with moderate intellectual disability (ID). In this study we examine the evaluation of relatives of restrictions applied to their family members with moderate ID. Relatives are key and permanent figures in the lives of people with moderate intellectual disability.…
Descriptors: Family Attitudes, Moderate Intellectual Disability, Barriers, Well Being
Zonneveld, Ellen; van Schelven, Femke; Boeije, Hennie – Journal of Applied Research in Intellectual Disabilities, 2023
Background: The COVID-19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic. Method: Surveys were administered to three samples of relatives in the Netherlands in 2019 (N = 105)…
Descriptors: COVID-19, Quality of Life, Pandemics, Intellectual Disability
Kruithof, Kasper; Olsman, Erik; Nieuwenhuijse, Appolonia; Willems, Dick – Journal of Intellectual & Developmental Disability, 2022
Background: The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. Method: We interviewed 27 parents of persons with PIMD and analysed the data…
Descriptors: Severe Intellectual Disability, Multiple Disabilities, Parent Attitudes, Children
Thalen, Marloes; van Oorsouw, Wietske M.W.J.; Volkers, Karin M.; Embregts, Petri J.C.M. – Journal of Intellectual Disabilities, 2023
Background: Information regarding the common-daily support needs of older people with intellectual disabilities remains scarce, despite the necessity of such knowledge to the provision of adequate support. This exploratory study aims to identify the most important support needs. Method: A mixed-method design was conducted, in which 11…
Descriptors: Foreign Countries, Older Adults, Intellectual Disability, Needs
van Ewijk, Lizet; Bootsma, Tjitske M. C.; van Rijssen, Maren; ter Wal, Nicole – International Journal of Language & Communication Disorders, 2021
Background: Subjective well-being (SWB) and quality of life (QOL) are intricately related constructs. Recent research shows both constructs share some facets, but are distinct entities. It is unclear, both internationally and in the Netherlands, if and how SLTs address SWB in clinical practice. The current study was set up to explore Dutch SLTs'…
Descriptors: Speech Language Pathology, Allied Health Personnel, Speech Therapy, Well Being
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
Marscha M. Engelen; Marie-Christine J. P. Franken; Lottie W. Stipdonk; Sarah E. Horton; Victoria E. Jackson; Sheena Reilly; Angela T. Morgan; Simon E. Fisher; Sandra Van Dulmen; Else Eising – Journal of Speech, Language, and Hearing Research, 2024
Purpose: Stuttering is a speech condition that can have a major impact on a person's quality of life. This descriptive study aimed to identify subgroups of people who stutter (PWS) based on stuttering burden and to investigate differences between these subgroups on psychosocial aspects of life. Method: The study included 618 adult participants who…
Descriptors: Adults, Stuttering, Quality of Life, Psychological Patterns
Benítez, Isabel; Van de Vijver, Fons; Padilla, José Luis – Sociological Methods & Research, 2022
The aim of the study is to illustrate a comprehensive approach to item bias in cross-cultural research by integrating quantitative and qualitative data in a mixed methods design. We studied responses and response processes of Dutch and Spanish participants to quality of life items from five international studies. Item bias was evaluated by…
Descriptors: Cross Cultural Studies, Quality of Life, Statistical Bias, Foreign Countries
de Geus-Neelen, Karin C. J. M.; van Oorsouw, Wietske M. W. J.; Hendriks, Lex A. H. C.; Embregts, Petri J. C. M. – Journal of Intellectual & Developmental Disability, 2019
Background: Staff and relatives often act as advocates for people with severe to profound intellectual disability (ID). Since staff and relatives make proxy judgements about quality of life for people with severe to profound ID, it is important to know how well the perceptions of the two groups correspond with each other. Method: Fifty-one…
Descriptors: Severe Intellectual Disability, Quality of Life, Decision Making, Empowerment
Benítez, Isabel; Padilla, José Luis; van de Vijver, Fons; Cuevas, Amaya – Field Methods, 2018
This study illustrates how the cognitive interviewing (CI) method can provide qualitative evidence of item, construct, and method bias in cross-cultural research. CI was conducted with participants from the Netherlands and Spain, who responded to quality-of-life (QoL) items included in international survey research projects. Qualitative findings…
Descriptors: Interviews, Research Methodology, Cross Cultural Studies, Bias
Groenendijk, E. R.; Van Heijst, B. F. C.; Geurts, H. M. – Autism: The International Journal of Research and Practice, 2023
There are currently no old-age specific interventions for autistic adults. Therefore, in this explorative study, we examined the possible effects of a co-designed psychoeducation program for older autistic adults (55+ years), with a multiple case study design (N = 9, age 56-73 years; Netherlands Trial Register (code Trial NL5670)). For each…
Descriptors: Case Studies, Psychoeducational Methods, Intervention, Older Adults
