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

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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; Lindholm, Elisabet; Berndtsson, Ina; Lundstam, Ulf; Hultén, Leif; Carlsson, Eva.

I: Scandinavian Journal of Caring Sciences, Vol. 26, Nr. 1, 03.2012, s. 20-27.

Forskningsoutput: TidskriftsbidragArtikel i vetenskaplig tidskrift

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Persson, Eva ; Lindholm, Elisabet ; Berndtsson, Ina ; Lundstam, Ulf ; Hultén, Leif ; Carlsson, Eva. / Experiences of living with increased risk of developing colorectal and gynaecological cancer in individuals with no identified gene mutation. I: Scandinavian Journal of Caring Sciences. 2012 ; Vol. 26, Nr. 1. s. 20-27.

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TY - JOUR

T1 - Experiences of living with increased risk of developing colorectal and gynaecological cancer in individuals with no identified gene mutation

AU - Persson, Eva

AU - Lindholm, Elisabet

AU - Berndtsson, Ina

AU - Lundstam, Ulf

AU - Hultén, Leif

AU - Carlsson, Eva

PY - 2012/3

Y1 - 2012/3

N2 - 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.

AB - 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.

KW - Cancer

KW - Genetics

KW - Lived experience

UR - http://www.scopus.com/inward/record.url?scp=84857064865&partnerID=8YFLogxK

U2 - 10.1111/j.1471-6712.2011.00898.x

DO - 10.1111/j.1471-6712.2011.00898.x

M3 - Article

C2 - 21595729

AN - SCOPUS:84857064865

VL - 26

SP - 20

EP - 27

JO - Scandinavian Journal of Caring Sciences

JF - Scandinavian Journal of Caring Sciences

SN - 1471-6712

IS - 1

ER -