Addressing challenges in gaining informed consent for a research study investigating falls in people with intellectual disability

Portia Ho, Jenny Downs, Caroline Bulsara, Shane Patman, Anne Marie Hill

Research output: Contribution to journalArticle

3 Citations (Scopus)

Abstract

Accessible Summary: People with intellectual disability do not often take part in research. When people with intellectual disability are thinking about taking part in research, it is important that they are given support to participate in the decision-making. This study describes how an informed consent process was developed for people with intellectual disability and how it is working in a current study. Abstract: 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 challenge is to support them in making an informed decision to participate in research. Therefore, the aim of this study was to describe and reflect on a consent procedure used while gaining informed consent, when recruiting potential participants into an ongoing study. Methods A systematic and holistic consent procedure, underpinned by ethical guidelines, was developed and used alongside recommended strategies to engage people with intellectual disability in a research study. Results Only three participants (7.5%) were deemed capable of consenting independently, while 37 participants (92.5%) required the support of a proxy. Of these 37 participants, 22 participated in the consent process, while 15 depended mainly on their caregiver to make decisions for them. Adapted communication strategies were found to facilitate a person who has an intellectual disability's participation in the consent procedure. The adapted written information sheets were of secondary importance. Conclusion The consent procedure was a respectful means of determining a person's capacity to consent and indicating where there was a need for proxy consent. Appropriate communication strategies and the inclusion of familiar caregiver(s) were critical components for facilitating the person with an intellectual disability to participate in the consent procedure.

Original languageEnglish
Pages (from-to)92-100
Number of pages9
JournalBritish Journal of Learning Disabilities
Volume46
Issue number2
DOIs
Publication statusPublished - 1 Jun 2018

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Disabled Persons
Informed Consent
Intellectual Disability
Research
Proxy
Caregivers
Decision Making
Communication
Quality of Life
Research Personnel
Guidelines
Delivery of Health Care

Cite this

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title = "Addressing challenges in gaining informed consent for a research study investigating falls in people with intellectual disability",
abstract = "Accessible Summary: People with intellectual disability do not often take part in research. When people with intellectual disability are thinking about taking part in research, it is important that they are given support to participate in the decision-making. This study describes how an informed consent process was developed for people with intellectual disability and how it is working in a current study. Abstract: 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 challenge is to support them in making an informed decision to participate in research. Therefore, the aim of this study was to describe and reflect on a consent procedure used while gaining informed consent, when recruiting potential participants into an ongoing study. Methods A systematic and holistic consent procedure, underpinned by ethical guidelines, was developed and used alongside recommended strategies to engage people with intellectual disability in a research study. Results Only three participants (7.5{\%}) were deemed capable of consenting independently, while 37 participants (92.5{\%}) required the support of a proxy. Of these 37 participants, 22 participated in the consent process, while 15 depended mainly on their caregiver to make decisions for them. Adapted communication strategies were found to facilitate a person who has an intellectual disability's participation in the consent procedure. The adapted written information sheets were of secondary importance. Conclusion The consent procedure was a respectful means of determining a person's capacity to consent and indicating where there was a need for proxy consent. Appropriate communication strategies and the inclusion of familiar caregiver(s) were critical components for facilitating the person with an intellectual disability to participate in the consent procedure.",
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author = "Portia Ho and Jenny Downs and Caroline Bulsara and Shane Patman and Hill, {Anne Marie}",
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Addressing challenges in gaining informed consent for a research study investigating falls in people with intellectual disability. / Ho, Portia; Downs, Jenny; Bulsara, Caroline; Patman, Shane; Hill, Anne Marie.

In: British Journal of Learning Disabilities, Vol. 46, No. 2, 01.06.2018, p. 92-100.

Research output: Contribution to journalArticle

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T1 - Addressing challenges in gaining informed consent for a research study investigating falls in people with intellectual disability

AU - Ho, Portia

AU - Downs, Jenny

AU - Bulsara, Caroline

AU - Patman, Shane

AU - Hill, Anne Marie

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N2 - Accessible Summary: People with intellectual disability do not often take part in research. When people with intellectual disability are thinking about taking part in research, it is important that they are given support to participate in the decision-making. This study describes how an informed consent process was developed for people with intellectual disability and how it is working in a current study. Abstract: 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 challenge is to support them in making an informed decision to participate in research. Therefore, the aim of this study was to describe and reflect on a consent procedure used while gaining informed consent, when recruiting potential participants into an ongoing study. Methods A systematic and holistic consent procedure, underpinned by ethical guidelines, was developed and used alongside recommended strategies to engage people with intellectual disability in a research study. Results Only three participants (7.5%) were deemed capable of consenting independently, while 37 participants (92.5%) required the support of a proxy. Of these 37 participants, 22 participated in the consent process, while 15 depended mainly on their caregiver to make decisions for them. Adapted communication strategies were found to facilitate a person who has an intellectual disability's participation in the consent procedure. The adapted written information sheets were of secondary importance. Conclusion The consent procedure was a respectful means of determining a person's capacity to consent and indicating where there was a need for proxy consent. Appropriate communication strategies and the inclusion of familiar caregiver(s) were critical components for facilitating the person with an intellectual disability to participate in the consent procedure.

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