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Experiences of living with increased risk of developing colorectal and gynaecological cancer in individuals with no identified gene mutation

Persson, Eva LU orcid ; Lindholm, Elisabet ; Berndtsson, Ina ; Lundstam, Ulf ; Hultén, Leif and Carlsson, Eva (2012) In Scandinavian Journal of Caring Sciences 26(1). p.20-27
Abstract

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 risk of colorectal and gynaecologic cancer where the gene mutation is unknown. Methods: Interviews were conducted with 30 individuals with familial colorectal cancer. These persons have no known mutation and therefore should be considered presumptive carriers. In connection with the interviews, all participants were offered to take part in a surveillance programme... (More)

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 risk of colorectal and gynaecologic cancer where the gene mutation is unknown. Methods: Interviews were conducted with 30 individuals with familial colorectal cancer. These persons have no known mutation and therefore should be considered presumptive carriers. In connection with the interviews, all participants were offered to take part in a surveillance programme consisting of a colonoscopy and gynaecological examinations. The interview transcriptions were analysed by the use of qualitative content analysis. Results: Two themes emerged from the analyses: first, living under a threat with two subthemes, 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 relate to; therefore, the entire situation is often perceived as abstract. Thus, providing information and counselling needs to be more deeply elucidated, and we need to address both situational 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 are decreased with adequate nursing interventions.

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author
; ; ; ; and
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Cancer, Genetics, Lived experience
in
Scandinavian Journal of Caring Sciences
volume
26
issue
1
pages
20 - 27
publisher
Wiley-Blackwell
external identifiers
  • pmid:21595729
  • scopus:84857064865
ISSN
0283-9318
DOI
10.1111/j.1471-6712.2011.00898.x
language
English
LU publication?
no
id
ed3ffcfd-5692-4ac3-bb73-7b89639d56af
date added to LUP
2018-02-09 13:17:45
date last changed
2024-02-13 15:16:22
@article{ed3ffcfd-5692-4ac3-bb73-7b89639d56af,
  abstract     = {{<p>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 risk of colorectal and gynaecologic cancer where the gene mutation is unknown. Methods: Interviews were conducted with 30 individuals with familial colorectal cancer. These persons have no known mutation and therefore should be considered presumptive carriers. In connection with the interviews, all participants were offered to take part in a surveillance programme consisting of a colonoscopy and gynaecological examinations. The interview transcriptions were analysed by the use of qualitative content analysis. Results: Two themes emerged from the analyses: first, living under a threat with two subthemes, 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 relate to; therefore, the entire situation is often perceived as abstract. Thus, providing information and counselling needs to be more deeply elucidated, and we need to address both situational 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 are decreased with adequate nursing interventions.</p>}},
  author       = {{Persson, Eva and Lindholm, Elisabet and Berndtsson, Ina and Lundstam, Ulf and Hultén, Leif and Carlsson, Eva}},
  issn         = {{0283-9318}},
  keywords     = {{Cancer; Genetics; Lived experience}},
  language     = {{eng}},
  number       = {{1}},
  pages        = {{20--27}},
  publisher    = {{Wiley-Blackwell}},
  series       = {{Scandinavian Journal of Caring Sciences}},
  title        = {{Experiences of living with increased risk of developing colorectal and gynaecological cancer in individuals with no identified gene mutation}},
  url          = {{http://dx.doi.org/10.1111/j.1471-6712.2011.00898.x}},
  doi          = {{10.1111/j.1471-6712.2011.00898.x}},
  volume       = {{26}},
  year         = {{2012}},
}