Advanced

Living with Hereditary Non-polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing.

Carlsson, Christina LU and Nilbert, Mef LU (2007) In Journal of Genetic Counseling 16(6). p.20-811
Abstract
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... (More)
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. (Less)
Please use this url to cite or link to this publication:
author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Journal of Genetic Counseling
volume
16
issue
6
pages
20 - 811
publisher
Springer
external identifiers
  • scopus:35948960277
ISSN
1059-7700
DOI
10.1007/s10897-007-9117-0
language
English
LU publication?
yes
id
f021bfd1-1505-4ba8-8131-961867c0e2f3 (old id 606801)
alternative location
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=17705030&dopt=Abstract
date added to LUP
2008-01-04 11:18:18
date last changed
2017-05-28 03:49:31
@article{f021bfd1-1505-4ba8-8131-961867c0e2f3,
  abstract     = {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.},
  author       = {Carlsson, Christina and Nilbert, Mef},
  issn         = {1059-7700},
  language     = {eng},
  number       = {6},
  pages        = {20--811},
  publisher    = {Springer},
  series       = {Journal of Genetic Counseling},
  title        = {Living with Hereditary Non-polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing.},
  url          = {http://dx.doi.org/10.1007/s10897-007-9117-0},
  volume       = {16},
  year         = {2007},
}