Background: Historically, people with intellectual disability have been exploited in and excluded from scientific research. To facilitate greater representation of adults with intellectual disability as research respondents, we sought to understand their interest in research participation and factors affecting their willingness to volunteer to participate, such as the core value of trust.
Methods: Our survey measured attitudes of adults with intellectual disability towards research in general and research specifically involving adults with intellectual disability as respondents, as well as their prior research experiences, trust of researchers and interest in future research participation.
Results: Participants reported positive attitudes towards research and strong interest in future participation opportunities, and trust of researchers was positively correlated to both. The belief that 'research about adults with intellectual disability is very important' also predicted participants' interest in future research participation.
Conclusions: Our findings indicate that adults with intellectual disability support the direct involvement of adults with intellectual disability in research as respondents. Trustworthy rapport with researchers and positive views about research foster greater inclusion of this population.
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http://dx.doi.org/10.1111/jir.12877 | DOI Listing |
J Appl Res Intellect Disabil
January 2025
Department of Occupational Therapy, MGH Institute of Health Professions, Boston, Massachusetts, USA.
Background: Young adults with intellectual and/or developmental disabilities lack access to mental health supports. Peer-delivered services may fill this gap. We adapted a theory-driven and evidence-based peer mentoring intervention for virtual-delivery and investigated its acceptability and participants' preliminary response.
View Article and Find Full Text PDFAm J Med Genet A
January 2025
Department of Maxillofacial Orthognathics, Graduate School of Medical and Dental Sciences, Institute of Science Tokyo, Tokyo, Japan.
SATB2-associated syndrome (SAS) is characterized by intellectual disability, neurodevelopmental disorders, cleft palate, and dental abnormalities. SAS is caused by variants in the special AT-rich sequence-binding protein 2 (SATB2), which encodes a transcription factor containing two CUT domains and a homeobox (HOX) domain. Here, we report the case of a 16-year-old male diagnosed with SAS using exome sequencing and investigate the functional consequences of previously reported SATB2 variants, including those in this case.
View Article and Find Full Text PDFJ Appl Res Intellect Disabil
January 2025
Department of Psychology, York University, Toronto, Ontario, Canada.
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 disabilities completed questionnaires.
Dev Med Child Neurol
January 2025
Department of Clinical and Molecular Medicine, Norwegian University of Science and Technology, Trondheim, Norway.
Aim: To compare the prevalence and clinical characteristics of cerebral palsy (CP), and perinatal mortality, in children born to non-immigrant mothers with children born to immigrant mothers.
Method: This was a registry-based cross-sectional study. Data on children born from 2000 to 2016 were extracted from the Medical Birth Registry of Norway and linked to the Norwegian Quality and Surveillance Registry for Cerebral Palsy.
Mol Genet Genomic Med
February 2025
Tampere University Hospital, Wellbeing Services County of Pirkanmaa, Tampere, Finland.
Background: MECP2 variants cause X-chromosome-linked rare developmental syndromes. Typically, the mutation is sporadic, occurs in females and is fatal in men. Accurate genetic and clinical diagnostics are considered essential for the management of symptoms and the development of new treatments.
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