Ethical Research Involving People with Intellectual Disabilities

Griffin, Timothy; Balandin, Susan

doi:10.1002/9780470713198.ch3

Cited by 35 publications

(9 citation statements)

References 23 publications

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“…Although formalised procedures for ascertaining the consent of people with learning disabilities who ‘lack capacity’ are new within the United Kingdom, surrogate consent procedures have been in place for several years in North America and Australia (Bach & Rock 1996; Griffin & Balandin 2004; Iacono & Murray 2003). These procedures appear to offer a helpful approach to consent where individuals lack capacity, but they have proved complex and difficult to implement in practice (McVilly & Dalton 2006, p. 187).…”

Section: Ethical Reviewmentioning

confidence: 99%

Research ethics committees and the benefits of involving people with profound and multiple learning disabilities in research

Boxall¹,

Ralph²

2011

Brit J Learn Disabil

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Accessible summary• People with learning disabilities who do not use speech are often left out of research.• Ways of doing research which do not use words (for example, using photographs) might make it easier for them to join in. • Ethics committees decide if plans for research projects are good enough.• It is important for ethics committees to stop people from being hurt by research.But they also need to know about the positive things that can happen for people with learning disabilities who get involved in research. • This article explains what happened when Martha (not her real name), a woman with learning disabilities who did not use speech, got involved in a research project at the hostel where she lived. • We hope this article will help researchers and ethics committees think about the positive things that can happen when people with learning disabilities get involved in research. SummaryAlthough there is increasing interest in service user involvement in research, such involvement rarely extends to people with profound and multiple learning disabilities. New developments in visual methodologies offer the potential for people with profound and multiple learning disabilities to be included in research. At the same time, however, tighter regulation of the UK Research Governance Framework and the requirements of the Mental Capacity Act 2005 have increased the complexity of ethical approval processes. In reaching decisions about whether or not to grant approval, ethics committees are obliged to consider the potential harm to research participants and also the potential benefits. This article documents the benefits of involvement for 'Martha', who participated in a research project using photographic methods at the hostel where she lived. We hope the article will stimulate debate about ethical approval and the use of creative methodologies in research with people with profound and multiple learning disabilities.Keywords Profound and multiple learning disabilities, research ethics, research methods, visual methods ª

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Section: Ethical Reviewmentioning

confidence: 99%

Research ethics committees and the benefits of involving people with profound and multiple learning disabilities in research

Boxall¹,

Ralph²

2011

Brit J Learn Disabil

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“…Exclusion from research participation, whilst acceptable in some circumstances (e.g. when the use of proxies is justified), can have unintended social costs (Clements, Rapley, & Cummins 1999;Griffin & Balandin 2004). If researchers exclude participants with CCN, they risk contributing to the perpetuation of stigma and societal oppression (McVilly & Dalton 2006;Shivas 2004; Smith-Chandler & Swart 2014) and producing research findings that contribute to stereotyping (Iacono & Carling-Jenkins 2012).…”

Section: Participant Recruitment and Data Collection Methodsmentioning

confidence: 99%

“…Alternative methods have been used by researchers and HRECs who understand consent not to be a dichotomy between 'yes' and 'no' (Dye, Hendy, Hare, & Burton 2004), or who assume that all participants have the capacity to consent unless the researcher discovers otherwise (Dalton & McVilly 2004;Iacono & Carling-Jenkins 2012). Studies using alternative methods of obtaining informed consent such as assent, progressive consent (Dalton & McVilly 2004;Griffin & Balandin 2004;McVilly & Dalton 2006;Ramcharan & Cutcliffe 2001), supported decision making (Iacono 2006;Iacono & Carling-Jenkins 2012), the use of pictorial communication (Boxall & Ralph 2009), or video recording participant consent (Paterson & Carpenter 2015), reframe the purpose of obtaining informed consent toward inclusion rather than exclusion, and are highly applicable to AAC research.…”

Section: Participant Consentmentioning

confidence: 99%

The Ethics of Inclusion in AAC Research of Participants with Complex Communication Needs

Taylor

Balandin

2020

Scandinavian Journal of Disability Research

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If qualitative researchers in lifelong disability are to produce authentic findings on the experiences, perceptions and expectations of people with disabilities, research methods must include people with disabilities as participants. People with complex communication needs (CCN) are often excluded from participating in generic research, disability research and augmentative and alternative communication (AAC) research because of negative assumptions by researchers, Human Research Ethics Committees [HRECs] and collaborating disability organisations about their cognitive capability and ability to consent to participation. Such attitudes disadvantage people with CCN, perpetuate their social exclusion and are a breach of human rights under the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006). However, there are indications of improvements in ethical approaches to inclusive research that enable people with CCN to execute their right to be involved in research and have their voices heard.

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“…Confidentiality is of course a key requirement for all research, and the expected safeguards were in place. However, when focus groups are used, researchers need to be more perceptive to confidentiality and privacy issues (Griffin & Balandin ). Usual rules on privacy and confidentiality issues within focus groups are clearly stated prior to commencing groups, and this was also evident in study A.…”

Section: Informationmentioning

confidence: 99%

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

Taua

Neville

Hepworth

2014

Int J Mental Health Nurs

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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.

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Ethical Research Involving People with Intellectual Disabilities

Cited by 35 publications

References 23 publications

Research ethics committees and the benefits of involving people with profound and multiple learning disabilities in research

Research ethics committees and the benefits of involving people with profound and multiple learning disabilities in research

The Ethics of Inclusion in AAC Research of Participants with Complex Communication Needs

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

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