Background: To build capacity among people with intellectual and developmental disabilities to become co-researchers they need the opportunity to learn about research.
Method: An inclusive research team developed an online training to support people with intellectual and developmental disabilities to serve as co-researchers. Seven participants were recruited as pilot trainees. The co-researcher training consisted of two 1-h training sessions. Pre- and post-surveys and a focus group were conducted to examine participant experiences with the co-researcher training.
Results: The participants were actively engaged during the co-researcher training sessions and shared they had a positive experience with it. They expressed that people with intellectual and developmental disabilities add value to the research team because of their lived experiences.
Conclusion: The co-researcher training can instill a baseline level of knowledge about research in people with intellectual and developmental disabilities, and can be adjusted for different types of research in different settings and organisations.
Lay Summary: People with intellectual and developmental disabilities would like to learn more about research. They would also like to learn more about how to do research. People with intellectual and developmental disabilities who work on research are called co-researchers. Two researchers and a co-researcher with disability wrote together about research for people with intellectual and developmental disabilities. Seven people with intellectual and developmental disabilities took part in the class. They answered questions about how they liked the class. They also gave their opinion about research. They learned about what research is and how to do research. The class can be changed so that it can be used by other organizations.
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http://dx.doi.org/10.1111/jar.13200 | DOI Listing |
Z Evid Fortbild Qual Gesundhwes
January 2025
Institut für Medizinmanagement und Gesundheitswissenschaften (IMG) der Universität Bayreuth, Bayreuth, Deutschland.
Introduction: Unmet health care needs are seen as a key indicator of equity in access to health care. With younger people, they can lead to poorer health outcomes in adulthood, and in older people they can be associated with an increased risk of mortality. The presence of a disability is considered a risk factor for unmet needs.
View Article and Find Full Text PDFDisabil Health J
January 2025
Institute for Exceptional Care, 1717 K Street NW, Suite 900, Washington, DC, 20006, USA. Electronic address:
Background: Persons with intellectual and/or developmental disabilities (IDD) are a growing population, frequently living with complex health conditions and unmet healthcare needs. Traditional clinical practice and research methods and measures may require adaptation to reflect their preferences.
Objective: The perspectives of people with IDD, caregivers/partners, and clinicians were obtained to provide insight into factors contributing to the health and wellness of people with IDD.
Spec Care Dentist
January 2025
Department of Head & Neck Surgery, Singapore General Hospital, Singapore, Republic of Singapore.
The cases of head and neck cancer among persons with intellectual disability (PWID) are infrequently reported and therefore poorly understood. PWID often face increased barriers of access to healthcare, which can be further compounded when faced with a cancer diagnosis. This report presents the case of a 34-year-old Chinese female patient with Rett syndrome and intellectual disability, presenting with two primary cancers of the tongue and the trachea.
View Article and Find Full Text PDFFront Child Adolesc Psychiatry
August 2024
Department of Occupational Therapy Sciences, Nagasaki University Graduate School of Biomedical Sciences, Nagasaki, Japan.
Background: Restricted and repetitive behavior (RRB) is a core symptom of autism spectrum disorder (ASD). The structure of RRB subcategories and their relationship with atypical sensory processing in Japan are not well understood. This study examined subcategories of the RRB in Japanese children with ASD and explored their relationship with sensory processing.
View Article and Find Full Text PDFNarra J
December 2024
Department of Community Medicine and Public Health, Faculty of Medicine and Health Sciences, Universiti Malaysia Sarawak, Sarawak, Malaysia.
Down syndrome is the most prevalent genetic condition contributing to intellectual disability. Advancements in medical care have significantly increased the life expectancy of people with this condition, making employment a vital component for independent living and quality of life. The aim of this study was to examine the current literature on the employability and employment experiences of individuals with Down syndrome, focusing on the evolution of the employment rate and factors influencing employment such as cognitive and personal factors, societal attitudes, challenges, and effective support systems.
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