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Petersen HV Domanska K Bendahl PO Wong J Carlsson C Bernstein I Esplen MJ Nilbert M 《Journal of genetic counseling》2011,20(3):308-313
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. 相似文献
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Hereditary non-polyposis colorectal cancer (HNPCC) is one of our most common cancer syndromes and an increasing number of
individuals live in families with verified hereditary cancer. We conducted an interview study to explore experiences from
and perceived impact on life after genetic testing for HNPCC. Three major themes emerged: reactions and emotions, family relations
and implications for life. Among the reactions described were suspecting heredity, feelings of guilt, the importance of experiential
knowledge, and coping strategies. The impact on family relations was related to perceived responsibility for conveying information,
encountering different reactions among family members, and difficulties in communication and relations. The implications described
included uncertainty, adaptation, new choices and changes in life, family planning issues, and experiences of surveillance
programs. We suggest that the themes and sub-themes identified should be taken into account during genetic counselling in
order to facilitate the spread of information and to prepare family members for the impact on life that knowledge about hereditary
cancer may have. 相似文献
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