Informed Consent or Assent Strategies for Research With Individuals With Deafblindness or Dual Sensory Impairment: A Scoping Review [PDF]
Archives of Rehabilitation Research and Clinical Translation, 2021 Objective: To synthesize evidence on existing informed consent/assent strategies and processes that enable the participation of individuazls with deafblindness or dual sensory impairment in research.
Abinethaa Paramasivam, BSc +4 more
doaj +2 more sources
Similarities and Differences in Health, Social Trust, and Financial Situation in People With Usher Syndrome, a Bio-Psychosocial Perspective [PDF]
Frontiers in Psychology, 2020 PurposeThe primary aim was to describe the similarities and differences among the general health, physical health, psychological health, social trust, and financial situations of people with Usher syndrome (USH) types 1, 2, and 3.
Moa Wahlqvist +6 more
doaj +2 more sources
The lived experiences of work and health of people living with deaf-blindness due to Usher syndrome type 2 [PDF]
International Journal of Qualitative Studies on Health & Well-Being, 2020 Purpose: This study aimed to explore lived experiences with working life from the perspective of people with deafblindness due to Usher syndrome type 2 (USH2).
Mattias Ehn +3 more
doaj +2 more sources
Cognitive Assessment of Children Who Are Deafblind: Perspectives and Suggestions for Assessments [PDF]
Frontiers in Psychology, 2020 The overall goal of a cognitive assessment is to improve communication, learning, and quality of life for a child who is deafblind. This article will give a brief description and perspective on different evaluation approaches as a basis for reliable ...
Jude Nicholas, Jude Nicholas
doaj +2 more sources
Life strategies of people with deafblindness due to Usher syndrome type 2a - a qualitative study [PDF]
International Journal of Qualitative Studies on Health & Well-Being, 2019 Purpose: To explore life strategies in people with Usher syndrome type 2a. Background: There are no studies on life strategies in people with Usher syndrome.
Mattias Ehn +3 more
doaj +2 more sources
Trends in U.S. National Institutes of Health Funding for CHARGE Syndrome Research, 2000 to 2024. [PDF]
Am J Med Genet AAmerican Journal of Medical Genetics Part A, Volume 200, Issue 1, Page 258-262, January 2026.
Othman M, Slavin LJ, James TG.
europepmc +2 more sources
Editorial: Development, Wellbeing, and Lifelong Learning in Individuals With a Dual Sensory Loss [PDF]
Frontiers in Psychology, 2021 Marleen J. Janssen +2 more
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Protocol: Strategies to Enhance Inclusion in Informed Consent Practice for People With Vision and/or Hearing Support Needs: A Systematic Review. [PDF]
Campbell Syst RevABSTRACT An equitable and accessible informed consent process is needed to support agency and mutual decision‐making. This systematic review aims to gather and characterise the evidence supporting methods that enhance inclusion and accessibility in informed consent practice for people with vision and/or hearing support needs.
O'Hare F +8 more
europepmc +2 more sources
Exploring Mental Functions in Deafblindness: A Multi‐Method Analysis Using the International Classification of Functioning, Disability, and Health framework [PDF]
Alzheimers DementAbstract Background Individuals living with deafblindness can face complex cognitive and psychological challenges that can significantly affect their daily functioning, independence, and overall quality of life. Despite these challenges, there is a notable lack of standardized cognitive assessments that are both accessible and suitable for this ...
Dumassais S, Wittich W.
europepmc +2 more sources
International Journal of Qualitative Methods, 2023 Informed consent is essential in research involving people with disabilities to protect their rights and ensure ethical conduct. Individuals with communicative vulnerability, such as those living with deafblindness, face difficulties when the research ...
Walter Wittich +2 more
doaj +1 more source