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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
Value, Vulnerability and Voice: An Integrative Review on Research Assent
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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
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
Addressing Challenges in Gaining Informed Consent for a Research Study Investigating Falls in People with Intellectual Disability
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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
Use of Valproate: Implications for Women with Intellectual Disabilities and the Wider Interdisciplinary Healthcare Team
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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
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
Will General Practitioners Be Adequately Prepared to Meet the Complexities of Enhanced Dementia Screening for People with Learning Disabilities and Down Syndrome: Key Considerations
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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