Ho, P., Bulsara, C., Patman, S., Downs, J., & Hill, A. (2018). Addressing challenges in gaining informed consent for a research study investigating falls in people with intellectual disability. British Journal of Learning Disabilities, 46 (2), 92-100.
Background: People with intellectual disability encounter multiple barriers to accessing quality, evidence based health care which is detrimental to their quality of life (Qol) and mortality. Engaging people with intellectual disability when conducting research is vital to address these QoL issues. People with intellectual disability have the right to engage in research pertinent to them but at present, they are under-represented in research and there are limited methods available to ensure that people with intellectual disability are fully supported to provide informed consent. Therefore the aim of this paper is to describe an informed consent process and reflect on the methods used when recruiting persons with intellectual disability 1 for a research study which is currently investigating falls among people with intellectual disability.
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.
accidental falls, informed consent, intellectual disabilities, mental competency, research participation
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