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 self-determination for persons with profound intellectual and multiple disabilities. The quantitative output of Likert scales guided us in finding consensus or differences in the qualitative data. First round qualitative data were analysed thematically.
Results: The analysis revealed four topics: (1) statements regarding the characteristics of the person with profound intellectual and multiple disabilities, (2) statements regarding characteristics of the social environment, (3) statements regarding the concept of self-determination, and (4) statements regarding the definition and operationalisation of concepts.
Conclusion: Consensus was found on the assumption that persons with profound intellectual and multiple disabilities can live a self-determined life and on the importance of the interplay between persons with profound intellectual and multiple disabilities and the environment in order to experience self-determination.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.3109/13668250.2022.2147053 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Cognitive and behavioral impact of antiseizure medications, neuromodulation, ketogenic diet, and surgery in lennox-gastaut syndrome: A comprehensive review.
Epilepsy Behav
January 2025
Division of Child Neurology, Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, AR, USA. Electronic address:
Lennox-Gastaut syndrome (LGS) is a severe developmental and epileptic encephalopathy marked by drug-resistant seizures and profound cognitive and behavioral impairments, with nearly 95% of individuals affected by moderate to severe intellectual disability. This review comprehensively explores the cognitive and behavioral impacts of current treatment options for LGS, including antiseizure medications (ASMs), neuromodulation strategies, the ketogenic diet, and surgical interventions. Given the limited availability of LGS-specific data for several ASMs, the evidence base is supplemented with findings from general epilepsy populations and individuals with epilepsy and intellectual disabilities.
View Article and Find Full Text PDFGenetic etiology of Perrault syndrome in Iranian families: first report from Iran and literature review.
J Appl Genet
January 2025
Genetics Research Center, University of Social Welfare and Rehabilitation Sciences, Koodakyar Avenue, Daneshjoo Blvd, Evin, Tehran, 1985713834, Iran.
Perrault syndrome (PS) is an extremely rare autosomal recessive condition characterized primarily by bilateral sensorineural hearing loss in both genders and primary or secondary ovarian failure in females. Neurological features such as cerebral ataxia, peripheral neuropathy, epilepsy, and intellectual disability are frequent manifestations of PS. To date, six genes have been reported to cause PS, and nearly 100 families have been identified worldwide with this syndrome.
View Article and Find Full Text PDFSocial Internet Use by People With Intellectual Disabilities: A Systematic Review and Thematic Synthesis of Qualitative Studies.
J Intellect Disabil Res
January 2025
Tranzo, Tilburg School of Social and Behavioral Sciences, Tilburg University, Tilburg, The Netherlands.
Introduction: Although existing research has explored both the benefits and risks associated with social internet use amongst people with intellectual disabilities (ID), a comprehensive understanding of the underlying reasons for this engagement is still lacking. This systematic review synthesizes literature investigating the reasons for social internet use amongst people with ID.
Methods: Eight electronic databases (Cinahl, Cochrane, Embase, ERIC, Google Scholar, Medline, PsycINFO and Web of Science) were systematically searched in June 2023 and November 2024 and screened using active machine learning techniques.
Epidemiology of constipation and its associated factors in an ageing population of people with an intellectual disability in Ireland: A cross-sectional study.
J Intellect Dev Disabil
September 2024
School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.
Constipation impacts health-related quality of life with a burden similar to other chronic conditions. This study characterises the prevalence of constipation and its associated factors in older adults with intellectual disability. Data from the Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing was analysed using bivariate and multivariate approaches.
View Article and Find Full Text PDFParents' tacit knowledge of their child with profound intellectual and multiple disabilities: A qualitative study.
J Intellect Dev Disabil
December 2024
Department of Ethics, Law & Humanities, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands.
Background: Parents' tacit knowledge plays an important role in the care of persons with profound intellectual and multiple disabilities (PIMD). As little is known about its nature and use, we aimed to explore this parental tacit knowledge.
Method: We conducted semi-structured interviews with parents ( = 11) about their tacit knowledge of their child, based upon video recordings they made of their child's behaviour, and analysed the data thematically.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!