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Co-Producing Ethics Guidelines Together with People with Learning Disabilities
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Mary Bottomley; Jodie Bradley; Lisa Clark; Bryan Collis; Bojana Daw Srdanovic; Victoria Farnsworth; Annie Ferguson; Dan Goodley; Andrew Fox; Nikita K. Hayden; Charlotte Lawthom; Rebecca Lawthom; Claudia Magwood; Robert McLean; Ian Middleton; Alison Owen; Matty Prothero; Simon Rice; Simon Richards; Katherine Runswick-Cole; Kelly Scargill; Rohit Shankar; Toni Ann Wood – British Journal of Learning Disabilities, 2024
Background: We are a research team of clinical, academic and advocacy-based researchers with and without learning disabilities, working on the "Humanising Healthcare" (for people with learning disabilities) project. The project is dedicated to finding and sharing healthcare practices that enhance the lives of people with learning…
Descriptors: Ethics, Learning Disabilities, Guidelines, Researchers
End-Of-Life Care Research on People with Intellectual Disabilities: Challenges for Proactive Inclusion in an Irish Context
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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
Mental Capacity to Consent to Research? Experiences of Consenting Adults with Intellectual Disabilities and/or Autism to 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
Obtaining Consent from Young People with Autism to Participate in Research
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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