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Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: Involving people affected by cancer in research: a review of literature
Authors: Hubbard, Gill
Kidd, Lisa
Donaghy, Edward
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Keywords: user involvement
participatory research
Issue Date: May-2008
Publisher: Wiley-Blackwell
Citation: Hubbard G, Kidd L & Donaghy E (2008) Involving people affected by cancer in research: a review of literature, European Journal of Cancer Care, 17 (3), pp. 233-244.
Abstract: The purpose of the literature review was to find out why people affected by cancer have been involved in research; how they have been involved and the impact of their involvement. We used systematic methods to search for literature, applied inclusion and exclusion criteria, conducted a quality appraisal, selected relevant data from the included articles for analysis, and provided a narrative summary of these data. The literature shows that people affected by cancer, particularly women with breast cancer, have been involved in a range of research programmes, projects and initiatives especially in the USA, UK, Canada and Australia. Their involvement has impacted upon research design, accrual and response rates. There is increasing recognition of the need for an infrastructure, including formal recruitment procedures, training and mentoring, to support an agenda of involvement and a need to challenge the ethos of traditional research, which does not easily lend itself to this agenda. Further critique of the role of ‘experiential knowledge’ in research is required so that researchers and people affected by cancer can work in partnership.
Type: Journal Article
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Rights: The publisher does not allow this work to be made publicly available in this Repository. Please use the Request a Copy feature at the foot of the Repository record to request a copy directly from the author; you can only request a copy if you wish to use this work for your own research or private study.
Affiliation: HS Research - Highland

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