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Experiences of living with increased risk of developing colorectal and gynaecological cancer in individuals with no identified gene mutation
School of Health Sciences, University of Borås.
Colorectal Unit, Sahlgrenska University Hospital / Östra, Sahlgrenska Academy.
University West, Department of Nursing, Health and Culture, Division of Nursing.ORCID iD: 0000-0002-7182-511X
Colorectal Unit, Sahlgrenska University Hospital / Östra, Sahlgrenska Academy.
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2012 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 1, p. 20-27Article in journal (Refereed) Published
Abstract [en]

Background: In most families with familial cancers, mutations have not been demonstrated; thus, healthy individuals cannot be tested for mutation status. As a consequence, many persons at risk of familial cancer live with an unknown, but presumably high, risk of developing cancer.Aim: The aim of this study was to describe individuals’ perceptions of living with an increased isk of colorectal and gynaecologic cancer where the gene mutation is unknown.Methods: Interviews were conducted with 30 individuals with familial colorectal cancer. These ersons have no known mutation and therefore should be considered presumptive carriers. In onnection with the interviews, all participants were offered to take part in a surveillance programme consisting of a colonoscopy and gynaecological examinations. The interview ranscriptions were analysed by the use of qualitative content analysis.Results: Two themes emerged from the analyses: first, living under a threat with two ubthemes, threat awareness and distancing oneself from the threat. The second theme, living with uncertainty, was divided into four subthemes: influencing one’s family, being on the safe side, facing emotions evoked by examinations and trust and disappointment to the medical services.Conclusion: These persons live with a lifelong uncertainty with a varying intensity depending on what happens throughout the life trajectory. They have no diagnosis or patient group to elate to; therefore, the entire situation is often perceived as abstract. Thus, providing nformation and counselling needs to be more deeply elucidated, and we need to address both ituational and existential ways of uncertainty. This will, however, require professionals of all disciplines to understand the meaning of uncertainty and help ensure that its adverse effects re decreased with adequate nursing interventions.

Place, publisher, year, edition, pages
United Kingdom: Wiley-Blackwell, 2012. Vol. 26, no 1, p. 20-27
Keyword [en]
cancer, lived experience, genetics
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-3524DOI: 10.1111/j.1471-6712.2011.00898.xISI: 000300567200004Scopus ID: 2-s2.0-84857064865OAI: oai:DiVA.org:hv-3524DiVA, id: diva2:433618
Available from: 2011-08-10 Created: 2011-08-10 Last updated: 2017-12-08Bibliographically approved

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