| 1. |
- Petersen, Helle Vendel, et al.
(author)
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Balancing Life with an Increased Risk of Cancer: Lived Experiences in Healthy Individuals with Lynch Syndrome
- 2014
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In: Journal of Genetic Counseling. - : Wiley. - 1059-7700 .- 1573-3599. ; 23:5, s. 778-784
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Journal article (peer-reviewed)abstract
- Possibilities to undergo predictive genetic testing for cancer have expanded, which implies that an increasing number of healthy individuals will learn about cancer predisposition. Knowledge about how an increased risk of disease influences life in a long-term perspective is largely unknown, which led us to explore lived experiences in healthy mutation carriers with Lynch syndrome. Individual interviews were subjected to descriptive phenomenological analysis. Four constitutions, namely, family context, interpretation and transformation, approach to risk and balancing life at risk were identified and formed the essence of the phenomenon "living with knowledge about risk." Family context influences how experiences and knowledge are interpreted and transformed into thoughts and feelings, which relates to how risk is approached and handled. The constitutions influence each other in a dynamic relationship and create a balancing act between anxiety and worry and feelings of being safe and in control.
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| 2. |
- Petersen, Helle Vendel, et al.
(author)
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Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study
- 2011
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In: Familial Cancer. - : Springer Science and Business Media LLC. - 1389-9600 .- 1573-7292. ; 10:4, s. 633-639
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Journal article (peer-reviewed)abstract
- An increasing number of individuals seek genetic counseling and hereby learn about hereditary cancer in the family. Lynch syndrome is associated with an inherited high risk for colorectal and gynecological cancer, but knowledge about how family members at risk perceive their situation is limited. We used the national Danish HNPCC register to collect data on self-concept from 413 individuals with Lynch syndrome. The recently developed Lynch syndrome self-concept scale contains 20 items within two subscales related to stigma-vulnerability and bowel symptom-related anxiety. Significantly higher total scores, indicating a greater impact on self-concept, were reported by females and by individuals with experience from cancer in close relatives, whereas individuals with less formal education scored significantly higher on the stigma and vulnerability subscale. Scores in the upper quartile were more often reported by women (odds ratio 1.8) and by individuals with less education (OR 1.8). This study provides the first extended use of the Lynch syndrome self-concept scale and suggests that the majority of the Danish mutation carriers adapt well to the situation, though knowledge about the increased risk of cancer seem to have a greater impact in females, individuals with less education and those with experience of cancer in close relatives.
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| 3. |
- Vendel Petersen, Helle, et al.
(author)
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Validation of a Self-Concept Scale for Lynch Syndrome in Different Nationalities
- 2011
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In: Journal of Genetic Counseling. - : Wiley. - 1059-7700 .- 1573-3599. ; 20:3, s. 308-313
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Journal article (peer-reviewed)abstract
- Learning about hereditary cancer may influence an individual's self-concept, which otherwise represents a complex but stable cognitive structure. Recently, a 20-statement self-concept scale, with subscales related to stigma-vulnerability and bowel symptom-related anxiety, was developed for Lynch syndrome. We compared the performance of this scale in 591 mutation carriers from Denmark, Sweden and Canada. Principal component analysis identified two sets of linked statements-the first related to feeling different, isolated and labeled, and the second to concern and worry about bowel changes. The scale performed consistently in the three countries. Minor differences were identified, with guilt about passing on a defective gene and feelings of losing one's privacy being more pronounced among Canadians, whereas Danes more often expressed worries about cancer. Validation of the Lynch syndrome self-concept scale supports its basic structure, identifies dependence between the statements in the subscales and demonstrates its applicability in different Western populations.
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