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Consent, including advanced consent, of older adults to research in care homes: a qualitative study of stakeholders' views in South Wales

Wood, Fiona Claire, Prout, Hayley, Bayer, Anthony, Duncan, Donna, Nuttal, Jacqui, Hood, Kerenza and Butler, Christopher Collett 2013. Consent, including advanced consent, of older adults to research in care homes: a qualitative study of stakeholders' views in South Wales. Trials 14 , 247. 10.1186/1745-6215-14-247

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Abstract

Background Care home residents, especially those lacking capacity to provide consent for themselves, are frequently excluded from research, thus limiting generalisability of study findings. We set out to explore stakeholders’ views about the ethical and practical challenges associated with recruiting care home residents into research studies. Methods Qualitative individual interviews with care home residents (n = 14), their relatives (n = 14), and general practitioners (GPs) (n = 10), and focus groups (n = 2) with care home staff. Interviews focused on the issues of older adults consenting to research in care homes, including advanced consent, in general and through reference to a particular study on the use of probiotics to prevent Antibiotic Associated Diarrhoea. Data were analysed using a thematic approach incorporating themes that had been identified in advance, and themes derived from the data. Researchers discussed evidence for themes, and reached consensus on the final themes. Results Respondents were generally accepting of low risk observational studies and slightly less accepting of low risk randomised trials of medicinal products. Although respondents identified some practical barriers to informed consent, consenting arrangements were considered workable. Residents and relatives varied in the amount of detail they wanted included in information sheets and consent discussions, but were generally satisfied that an advanced consent model was acceptable and appropriate. Opinions differed about what should happen should residents lose capacity during a research study. Conclusions Research staff should be mindful of research guidance and ensure that they have obtained an appropriate level of informed consent without overwhelming the participant with unnecessary detail. For research involving medicinal products, research staff should also be more explicit when recruiting that consent is still valid should an older person lose capacity during a trial provided the individual did not previously state a wish to be withdrawn if they lose capacity, and provided they do not indicate objection or resistance after loss of capacity.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Subjects: R Medicine > RA Public aspects of medicine
Publisher: BioMed Central
Funders: HTA
Date of First Compliant Deposit: 30 March 2016
Date of Acceptance: 24 July 2013
Last Modified: 26 Dec 2017 20:37
URI: http://orca.cf.ac.uk/id/eprint/86900

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