Research participation by people with intellectual disability and mental health issues: an examination of the processes of consent

Article

Taua, Chris, Neville, Christine and Hepworth, Julie. 2014. "Research participation by people with intellectual disability and mental health issues: an examination of the processes of consent." International Journal of Mental Health Nursing. 23 (6), pp. 513-524. https://doi.org/10.1111/inm.12079
Article Title

Research participation by people with intellectual disability and mental health issues: an examination of the processes of consent

ERA Journal ID14085
Article CategoryArticle
AuthorsTaua, Chris (Author), Neville, Christine (Author) and Hepworth, Julie (Author)
Journal TitleInternational Journal of Mental Health Nursing
Journal Citation23 (6), pp. 513-524
Number of Pages12
Year2014
PublisherJohn Wiley & Sons
Place of PublicationAustralia
ISSN1324-3780
1445-8330
1447-0349
Digital Object Identifier (DOI)https://doi.org/10.1111/inm.12079
Web Address (URL)https://onlinelibrary.wiley.com/doi/epdf/10.1111/inm.12079
Abstract

Balancing the demands of research and ethics is always challenging, and even more so when recruiting vulnerable groups. Within the context of current legislation and international human rights declarations, it is strongly advocated that research can and must be undertaken with all recipients of health-care services. Research in the field of intellectual disability presents particular challenges in regards to consenting processes. This paper is a reflective overview and analysis of the complex processes undertaken, and events that occurred in gaining informed consent from people with intellectual disability to participate in a study exploring their experiences of being an inpatient in mental health hospitals within Aotearoa/New Zealand. A framework based on capacity, information, and voluntariness is presented, with excerpts from the field provided to explore consenting processes. The practical implications of the processes utilized are then discussed in order to stimulate debate regarding clearer and enhanced methods of gaining informed consent from people with intellectual disability.

Keywordscapacity, consent, dual disability, intellectual disability, mental health
ANZSRC Field of Research 2020429999. Other health sciences not elsewhere classified
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Byline AffiliationsUniversity of Queensland
Queensland University of Technology
Institution of OriginUniversity of Southern Queensland
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