Obtaining consent to participate in research: the issues involved in including people with a range of learning and communication disabilities

Abstract

Accessible summaryTitle: Saying 'yes' or 'no' to research • People with learning disability should get the chance to say 'yes' or 'no' to taking part in research. • This can be hard if you have difficulty in understanding or speaking.• This paper is about how we tried to find ways to help people understand and say what they felt about taking part in research. • We found:-people with learning disability need more time to make decisions about research -researchers need to be good at communicating and getting to know people -researchers need to use different ways to communicate -not just speech SummaryResearch in the field of learning disability presents particular ethical challenges when obtaining consent from participants. This is further exacerbated when the nature of the research requires participation at all ability levels and involves people with communication impairments. The process of obtaining consent in a research study with 48 participants at four levels of comprehension ability is discussed in this paper. The specific issues of recruitment, seeking consent, ongoing consent and feedback are detailed as are the adaptations made in this project to research methodology and the accessible methods of communication employed. Implications for researchers and future directions for further studies are presented.

‘You’re disabled, why did you have sex in the first place?’ An intersectional analysis of experiences of disabled women with regard to their sexual and reproductive health and rights in Gujarat State, India

“…Informed consent was sought from participants following an explanation of the research study, clarification that participants were free to withdraw from the study at any time, and assurance that participation was voluntary and anonymous. In one case where a participant was unable to provide consent directly, due to learning disability, consent was obtained from their guardian and assent obtained from the participant prior to inclusion in the study as per recommended practice in disability research [54,55]. Interviews covered a range of topics including: understanding of SRH, experience of using SRH services, and personal relationships.…”

14. Methodological challenges

“…The terms of engagement (Walmsley, 2004) need to be negotiated between everyone involved and protocols need to focus on how rapport is established and boundaries maintained. Research with so-called vulnerable groups makes examination of this dimension paramount; rapport-building requires particular skill and needs to be monitored (Cameron & Murphy, 2007). People with learning difficulties lack social networks and these are made up more of professionals than friends (Pockney, 2006).…”

“…Attention is paid to the language skills of participants (such as the number of information carrying words they can comprehend (Cameron & Murphy, 2007)) and the power dynamics at work between them and those who support them. (Quantifying the information carrying words is a simple test of the demands made by a sentence and involves counting the number of words that have to be understood for a sentence to be followed.…”

The Potential of Digital Technologies for Transforming Informed Consent Practices with Children and Young People in Social Research

“…The concerns about free and informed consent arise in relation to these groups mostly in relation to the potential for the abuse of power (knowingly or unconsciously) through participants feeling pressure to participate and/or not really understanding what they are participating in or why their participation is necessary (Cameron & Murphy, 2007;Flory & Emanuel, 2004;Stalker, 1998).…”