Funding body of work: Centre for the Older Person's Agenda, Queen Margaret University, Edinburgh.
Adults with intellectual disabilities affected by cancer: critical challenges for the involvement agenda
Article first published online: 26 AUG 2009
© 2009 The Authors. Journal compilation © 2009 Blackwell Publishing Ltd
European Journal of Cancer Care
Volume 19, Issue 1, pages 91–97, January 2010
How to Cite
FORBAT, L. and MCCANN, L. (2010), Adults with intellectual disabilities affected by cancer: critical challenges for the involvement agenda. European Journal of Cancer Care, 19: 91–97. doi: 10.1111/j.1365-2354.2008.00979.x
- Issue published online: 21 DEC 2009
- Article first published online: 26 AUG 2009
- Accepted 28 April 2008
- intellectual disability;
- participative research;
FORBAT L. & MCCANN L. (2009) European Journal of Cancer Care19, 91–97 Adults with intellectual disabilities affected by cancer: critical challenges for the involvement agenda
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.