Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/1259
Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: A review of literature about involving people affected by cancer in research, policy and planning and practice
Authors: Hubbard, Gill
Kidd, Lisa
Donaghy, Edward
McDonald, Charlotte
Kearney, Nora
Contact Email: gill.hubbard@stir.ac.uk
Keywords: Cancer
Community-based research and or services
Decision-making
Self care
Involvement
Issue Date: Jan-2007
Publisher: Elsevier
Citation: Hubbard G, Kidd L, Donaghy E, McDonald C & Kearney N (2007) A review of literature about involving people affected by cancer in research, policy and planning and practice, Patient Education and Counseling, 65 (1), pp. 21-33.
Abstract: Objective: To systematically review the literature on involving people affected by cancer in healthcare research, policy and planning and practice. Methods: Database searches, cited author, and grey literature searches were conducted. Results: 131 documents were included. Rationales for the agenda of involvement represent two polar characteristics of modernity: individualism and collectivism. In research, people acted as advocates, strategists, advisors, reviewers and as participatory researchers. In policy and planning, people were involved in one-off involvement exercises and in longer-term partnerships. Men, those with rare cancers, children, and people who are socially deprived have been rarely involved. There is little research evidence about the impact of involvement. Training and information, resources and a change in attitudes and roles are required to implement an agenda of involvement. Conclusion: The USA, the UK, followed by Canada and Australia have promoted an agenda of involvement. Practice implications: A dissemination strategy to share good practice; involvement of all types of people; an individualised and flexible approach; training, resources and a shift in thinking from paternalism towards partnership working are required. More research is needed about the impact of involvement and relationships between rationales for involvement and implementation.
Type: Journal Article
URI: http://hdl.handle.net/1893/1259
URL: http://www.sciencedirect.com/science/journal/07383991
DOI Link: http://dx.doi.org/10.1016/j.pec.2006.02.009
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
Cancer Care Research Centre
University of Dundee
University of Stirling
HS Research - Stirling

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