The importance of the person/patient/survivor's lived experience across the cancer control continuum

Cancer ◽  
2021 ◽  
Author(s):  
Dana H. Bovbjerg ◽  
Jessica Manculich ◽  
Rebecca A. Shelby
2012 ◽  
Vol 10 (2) ◽  
pp. 123-133 ◽  
Author(s):  
Virginia Lee ◽  
Carmen G. Loiselle

AbstractDespite significant improvement in cancer survival, the fear of death still remains rooted in individuals' beliefs about cancer. Existential fears pertaining to cancer cut across the cancer control continuum and taint decisions related to prevention, screening, surveillance, and follow-up recommendations, as well as the overall management of cancer-related issues. However, individuals are innately predisposed to cope with their cancer-related fears through mechanisms such as reliance on the process of meaning making. To better appreciate the potential impact of existential concerns across the cancer control continuum, the Temporal Existential Awareness and Meaning Making (TEAMM) model is proposed. This tripartite model depicts three types of perceived threats to life related to cancer including a “social awareness” (i.e., cancer signals death), “personalized awareness” (i.e., I could die from cancer), and the “lived experience” (i.e., It feels like I am dying from cancer). This construal aims to enhance our understanding of the personal and contextual resources that can be mobilized to manage existential concerns and optimize cancer control efforts. As such, existential discussions should be considered in any cancer-related supportive approach whether preventive, curative, or palliative, and not be deferred only until the advanced stages of cancer or at end of life. Further delineation and validation of the model is needed to explicitly recognize and depict how different levels of existential awareness might unfold as individuals grapple with a potential, actual, or recurrent cancer.


2020 ◽  
pp. 92-98
Author(s):  
Angeline Letendre ◽  
Gail Garvey ◽  
Alexandra King ◽  
Malcolm King ◽  
Reg Crowshoe ◽  
...  

PURPOSE In Canada, Indigenous peoples’ cancer rates have increased, but cancer screening rates tend to be lower. When coupled with poor cancer prognosis, treatment barriers, and inaccessible health care, Indigenous patients with cancer experience many unmet needs. Further complicating their journey is a multijurisdictional system that complicates cancer control services, treatments, patient supports, and cancer surveillance. To address these issues, the Canadian Indigenous Research Network Against Cancer (CIRNAC) was developed. This article describes the forerunners and consultative process that created the network and the consensus model developed to ground this network with, by, and for Indigenous peoples. METHODS A consultative workshop was held to (1) establish and increase network membership, (2) enhance partnerships with Indigenous communities and other researchers, and (3) develop an Indigenous-led research program, new funding, and related initiatives. RESULTS Participants viewed the CIRNAC as a reflective parallel network led by Indigenous peoples that would identify research priorities within Canada, assess how these priorities align with Indigenous patients’ cancer care and research needs, and cross-check to see if these priorities align with each other. The network would also advocate for Indigenous elders/knowledge holders and community grassroot processes to drive research and training, thus demonstrating the power of the community voice and lived experience in research. In addition, the network would foster research partnerships to investigate alternative Indigenous models for cancer prevention, care, treatment, and support. CONCLUSION The CIRNAC evolved as a viable vehicle to address cancer with, for, and by Indigenous peoples. The network is guided by a preamble, a set of aims, and an inclusion engagement circle model. It is evolving through major world initiatives, with the aim of formally becoming an internationally linked national network.


1977 ◽  
Vol 113 (2) ◽  
pp. 193-195 ◽  
Author(s):  
H. T. Lynch

2007 ◽  
Vol 177 (4S) ◽  
pp. 130-130
Author(s):  
Markus Graefen ◽  
Jochen Walz ◽  
Andrea Gallina ◽  
Felix K.-H. Chun ◽  
Alwyn M. Reuther ◽  
...  

2005 ◽  
Vol 173 (4S) ◽  
pp. 296-296 ◽  
Author(s):  
Ryohei Hattori ◽  
Yasushi Yoshino ◽  
Momokazu Gotoh ◽  
Tokunori Yamamoto ◽  
Yoshinari Ono

2006 ◽  
Vol 175 (4S) ◽  
pp. 16-16
Author(s):  
Alexander Kutikov ◽  
Lindsay K. Fossett ◽  
Thomas J. Guzzo ◽  
Alan J. Wein ◽  
Keith N. Vanarsdalen ◽  
...  

1996 ◽  
Vol 41 (1) ◽  
pp. 85-85
Author(s):  
Terri Gullickson ◽  
Pamela Ramser
Keyword(s):  

2005 ◽  
Vol 24 (4, Suppl) ◽  
pp. S3-S8 ◽  
Author(s):  
Wendy Nelson ◽  
Michael Stefanek ◽  
Ellen Peters ◽  
Kevin D. McCaul

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