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Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/2068

Appears in Collections:School of Nursing, Midwifery and Health Journal Articles
Peer Review Status: Refereed
Title: Adults with intellectual disabilities affected by cancer: critical challenges for the involvement agenda
Author(s): Forbat, Liz
McCann, Lisa Ann
Contact Email: elizabeth.forbat@stir.ac.uk
Keywords: intellectual disability
engagement
involvement
participative research
paternalism
Issue Date: Jan-2010
Publisher: Wiley-Blackwell
Citation: Forbat L & McCann LA (2010) Adults with intellectual disabilities affected by cancer: critical challenges for the involvement agenda, European Journal of Cancer Care, 19 (1), pp. 91-97.
Abstract: Cancer incidence and prevalence in people with intellectual disabilities are poorly documented. Changing demographic patterns, however, mirror those in the general population with increased longevity leading to higher numbers of people developing cancer in the future. Little is known about the service and support needs of this group, but there is a precedent to understand their experiences to inform research and service development if appropriately tailored approaches are to be adopted. This article outlines a project that sought to develop an advisory forum of adults with intellectual disabilities affected by cancer, to inform the development of a research agenda. The process of this work is described alongside a critical appraisal of the tensions in involving people with intellectual disabilities as advisors on cancer research and practice. We discuss and challenge the underlying ideologies, which lie in the path of fully engaging with marginalized patients.
Type: Journal Article
URI: http://hdl.handle.net/1893/2068
DOI Link: http://dx.doi.org/10.1111/j.1365-2354.2008.00979.x
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: Cancer Care Research Centre

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