Returning to Earth: Setting a Global Agenda for the Anthropology of Cancer

Burke, Nancy; Mathews, Holly F.

doi:10.1080/01459740.2016.1255611

Cited by 19 publications

(9 citation statements)

References 18 publications

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“…Developing the K-CASCADE cohort will link together the expertise of an eminent network of HBOC scholars and clinicians that will benefit both countries and serve as a model for potential expansion to other countries and in other language contexts. The cross-cultural adaptation of the Family Gene Toolkit will help explore the similarities and differences in communication practices among HBOC families in the Swiss and Korean contexts, potentially providing important information about the Korean and Swiss contexts that affect HBOC discourse [78]. This comparison will also reveal context-specific characteristics regarding the influence of the health care system, insurance coverage, and socioeconomic aspects on the application of genetic knowledge that can provide useful information for adapting other digital health solutions within the Swiss and Korean contexts.…”

Section: Principal Findingsmentioning

confidence: 99%

Using a Tailored Digital Health Intervention for Family Communication and Cascade Genetic Testing in Swiss and Korean Families With Hereditary Breast and Ovarian Cancer: Protocol for the DIALOGUE Study

Kim¹,

Aceti²,

Baroutsou³

et al. 2021

JMIR Res Protoc

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Background In hereditary breast and ovarian cancer (HBOC), family communication of genetic test results is essential for cascade genetic screening, that is, identifying and testing blood relatives of known mutation carriers to determine whether they also carry the pathogenic variant, and to propose preventive and clinical management options. However, up to 50% of blood relatives are unaware of relevant genetic information, suggesting that potential benefits of genetic testing are not communicated effectively within family networks. Technology can facilitate communication and genetic education within HBOC families. Objective The aims of this study are to develop the K-CASCADE (Korean–Cancer Predisposition Cascade Genetic Testing) cohort in Korea by expanding an infrastructure developed by the CASCADE (Cancer Predisposition Cascade Genetic Testing) Consortium in Switzerland; develop a digital health intervention to support the communication of cancer predisposition for Swiss and Korean HBOC families, based on linguistic and cultural adaptation of the Family Gene Toolkit; evaluate its efficacy on primary (family communication of genetic results and cascade testing) and secondary (psychological distress, genetic literacy, active coping, and decision making) outcomes; and explore its translatability using the reach, effectiveness, adoption, implementation, and maintenance framework. Methods The digital health intervention will be available in French, German, Italian, Korean, and English and can be accessed via the web, mobile phone, or tablet (ie, device-agnostic). K-CASCADE cohort of Korean HBOC mutation carriers and relatives will be based on the CASCADE infrastructure. Narrative data collected through individual interviews or mini focus groups from 20 to 24 HBOC family members per linguistic region and 6-10 health care providers involved in genetic services will identify the local cultures and context, and inform the content of the tailored messages. The efficacy of the digital health intervention against a comparison website will be assessed in a randomized trial with 104 HBOC mutation carriers (52 in each study arm). The translatability of the digital health intervention will be assessed using survey data collected from HBOC families and health care providers. Results Funding was received in October 2019. It is projected that data collection will be completed by January 2023 and results will be published in fall 2023. Conclusions This study addresses the continuum of translational research, from developing an international research infrastructure and adapting an existing digital health intervention to testing its efficacy in a randomized controlled trial and exploring its translatability using an established framework. Adapting existing interventions, rather than developing new ones, takes advantage of previous valid experiences without duplicating efforts. Culturally sensitive web-based interventions that enhance family communication and understanding of genetic cancer risk are timely. This collaboration creates a research infrastructure between Switzerland and Korea that can be scaled up to cover other hereditary cancer syndromes. Trial Registration ClinicalTrials.gov NCT04214210; https://clinicaltrials.gov/ct2/show/NCT04214210 and CRiS KCT0005643; https://cris.nih.go.kr/cris/ International Registered Report Identifier (IRRID) PRR1-10.2196/26264

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Section: Principal Findingsmentioning

confidence: 99%

Using a Tailored Digital Health Intervention for Family Communication and Cascade Genetic Testing in Swiss and Korean Families With Hereditary Breast and Ovarian Cancer: Protocol for the DIALOGUE Study

Kim¹,

Aceti²,

Baroutsou³

et al. 2021

JMIR Res Protoc

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“…6 But the findings of Cao and colleagues might also prompt us to think more about cancer as a natural ceiling on human longevity rather than as a rising epidemic. Cancer incidence (although not necessarily death from cancer) rises exponentially with age, beginning at about the mid-point of the maximum human lifespan-that is, for most cancers after age 50-60 years.…”

Section: Cancer As a Ceiling Effectmentioning

confidence: 99%

Cancer and the limits of longevity

Tørring

2017

BMJ

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“…Lastly, the majority of the anthropology of cancer is done in an American context and anthropologists are calling for more research around the world (Burke & Mathews, 2017;McMullin, 2008). This exploration of life with cancer in a Norwegian context is an empirical and theoretical contribution to the field of medical anthropology.…”

Section: Introductionmentioning

confidence: 99%

“…Anthropology has the potentiality to address and nuance health challenges in various contexts and from people's perspectives. "Cancer is a global epidemic" (p. 180), Burke and Mathews (2017), argue. While mortality rates are decreasing in the global north, they are increasing in less developed countries.…”

Section: Introductionmentioning

confidence: 99%

Patient pathways as social drama: a qualitative study of cancer trajectories from the patient’s perspective

Hansen

Berntsen

Salamonsen

2019

International Journal of Qualitative Studies on Health and Well

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Purpose: The number of persons living with and beyond cancer is increasing. Such persons often have complex needs that last, and change, over time. The aim of this study is to get insights of lived experience of person diagnosed with colorectal cancer and to create an understanding of cancer trajectories as a dynamic process. This study thus explores Victor Turner's model of social drama in a cancer care context. Method: Turner suggests that crisis is a dynamic process structured by four phases: 1) breach of norm 2) crisis 3) redressive actions 4) reintegration or schism. The research team employed content analysis to explore material gathered through a series of qualitative interviews with nine Norwegian cancer patients over a period of one year. Results: To the authors' knowledge, Turner's model has not earlier been applied to such materials. The results show that Turner's model of social drama is useful in achieving new and possibly important knowledge on illness trajectories from a lived experience perspective. Conclusions: The model of social drama may contribute to a deeper understanding of the processes patients are going through in long-term illness trajectories, demonstrating that illness is not a static matter.

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Returning to Earth: Setting a Global Agenda for the Anthropology of Cancer

Cited by 19 publications

References 18 publications

Using a Tailored Digital Health Intervention for Family Communication and Cascade Genetic Testing in Swiss and Korean Families With Hereditary Breast and Ovarian Cancer: Protocol for the DIALOGUE Study

Using a Tailored Digital Health Intervention for Family Communication and Cascade Genetic Testing in Swiss and Korean Families With Hereditary Breast and Ovarian Cancer: Protocol for the DIALOGUE Study

Cancer and the limits of longevity

Patient pathways as social drama: a qualitative study of cancer trajectories from the patient’s perspective

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