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Hart, Sarah M.; Pascucci, Mikayla; Sood, Sheetal; Barrett, Emily M. – British Journal of Learning Disabilities, 2020
(1.1) Background: Research assent is a term used with those deemed vulnerable, for whom modifications and additional considerations are required when requesting their voluntary agreement to participate in research. (1.2) Methods: The authors' research experiences and inclusive research principles were integrated with a review of literature on…
Descriptors: Informed Consent, Severe Intellectual Disability, Sampling, Research Methodology
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Cithambaram, Kumaresan; Duffy, Mel; Courtney, Eileen – British Journal of Learning Disabilities, 2019
Background: In recent times, people with intellectual disabilities are increasingly included in research studies; however, their participation in sensitive research such as palliative and end-of-life care is less frequent. The reasons for not including people with intellectual disabilities in these kinds of research studies are issues in relation…
Descriptors: Inclusion, Foreign Countries, Death, Health Services
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Sawhney, Indermeet; Zia, Asif; Adams, Danielle; Gates, Bob – British Journal of Learning Disabilities, 2019
Background: It is well established that valproate, and its valproic acid, sodium valproate, and valproate semisodium forms is a highly teratogenic drug and evidence suggests that use in pregnancy leads to physical birth defects in 10% of children born compared with a background rate of 2% to 3%. Congenital malformations associated with valproate…
Descriptors: Females, Intellectual Disability, At Risk Persons, Pregnancy
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Ho, Portia; Downs, Jenny; Bulsara, Caroline; Patman, Shane; Hill, Anne-Marie – British Journal of Learning Disabilities, 2018
Background: People with intellectual disability encounter substantial healthcare discrepancies, yet are under-represented in research. While people with intellectual disability can make valuable contributions to research and consequently improve their quality of life, researchers encounter multiple challenges including them in research. One…
Descriptors: Intellectual Disability, Informed Consent, Injuries, Research
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Hamilton, Jahnese; Ingham, Barry; McKinnon, Iain; Parr, Jeremy R.; Tam, Louise Yuen-Chong; Le Couteur, Ann – British Journal of Learning Disabilities, 2017
Background: Adults with intellectual disabilities and/or autism are often excluded from participating in health and healthcare research. Understanding study information, which is an important aspect of demonstrating capacity to give informed consent, can be a particular challenge. This study surveyed clinical researchers to discover: (i) their…
Descriptors: Adults, Intellectual Disability, Cognitive Ability, Informed Consent
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Rowe, Michelle – British Journal of Learning Disabilities, 2016
This article provides a timely response in regard to the Department of Health's current initiative to financially reward GPs to prioritise and undertake dementia screening for people with learning disabilities over the age of 50¬†years and for people with Down syndrome over the age of 40¬†years. Whilst GPs are becoming increasingly aware of their…
Descriptors: Dementia, Screening Tests, Learning Disabilities, Down Syndrome
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Jepson, Marcus – British Journal of Learning Disabilities, 2015
This study describes the experiences of a researcher negotiating consent with people with learning disabilities to become participants in a research study. The study was about how the Mental Capacity Act (MCA) was applied to everyday decision-making in social care settings. However, before data collection could begin, the researcher had to follow…
Descriptors: Mental Retardation, Decision Making, Legislation, Data Collection
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Loyd, Daisy – British Journal of Learning Disabilities, 2013
Young people with autism were involved in a study examining the participation of young people with autism in drama education. This study considers the approaches devised to obtain consent from ten young people with autism who communicated in different ways. The process of obtaining consent and monitoring assent is outlined and evaluated. The…
Descriptors: Late Adolescents, Autism, Ethics, Foreign Countries
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Barnes, Jennifer Clare; Summers, S. J. – British Journal of Learning Disabilities, 2012
This paper describes the process of couple therapy with a client who has a mild learning disability and cerebral palsy, and her partner, who also has cerebral palsy (all information has been anonymised and pseudonyms are used throughout). Informed consent was gained from both individuals for the purposes of writing about their case. Therapy…
Descriptors: Learning Disabilities, Physical Disabilities, Psychotherapy, Cerebral Palsy