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Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations

Bartuma, Katarina LU ; Nilbert, Mef LU and Carlsson, Christina LU (2012) In Hereditary Cancer in Clinical Practice 10.
Abstract
Background: A growing number of individuals are diagnosed with hereditary cancer. Though increased levels of anxiety and depression have been demonstrated around the time of genetic counselling, most individuals handle life at increased risk well. Data have, however, been collected on individual basis, which led us to focus on family perspectives of hereditary cancer. Methods: Lynch syndrome represents a major type of hereditary colorectal and gynaecological cancer. We preformed open-ended interviews with 27 informants from 9 Lynch syndrome families. Inductive content analysis revealed three major themes: transition to a risk family, patterns of communication and influence on family relations and individual roles. Results: Family members... (More)
Background: A growing number of individuals are diagnosed with hereditary cancer. Though increased levels of anxiety and depression have been demonstrated around the time of genetic counselling, most individuals handle life at increased risk well. Data have, however, been collected on individual basis, which led us to focus on family perspectives of hereditary cancer. Methods: Lynch syndrome represents a major type of hereditary colorectal and gynaecological cancer. We preformed open-ended interviews with 27 informants from 9 Lynch syndrome families. Inductive content analysis revealed three major themes: transition to a risk family, patterns of communication and influence on family relations and individual roles. Results: Family members described how learning about Lynch syndrome shifted focus from daily issues to concerns about cancer. Changes in communication related to difficulties in talking to children about heredity and informing new family members and distant relatives about an increased risk of cancer. Influence on relations was exemplified by family members taking on different roles, e. g. females often being responsible for coordinating information about heredity and providing support. Families in which members had experienced cancer at young age typically informed children soon after learning about heredity and at young age, whereas families with experience of cancer at higher age postponed information and thereby also genetic counselling. Conclusions: Three major family perspectives are described in Lynch syndrome families; becoming a risk family, patterns of communication and influence on family relations. Since these issues are central, our findings suggests that such family perspectives should be considered during genetic counselling in order to contribute to information spread, help family members cope with the increased risk, and motivate family members at risk to undergo surveillance. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Family, Relations, Communication, Lynch syndrome, Qualitative analysis
in
Hereditary Cancer in Clinical Practice
volume
10
publisher
Termedia Publishing House
external identifiers
  • wos:000307513300001
  • scopus:84863200746
ISSN
1897-4287
DOI
10.1186/1897-4287-10-6
language
English
LU publication?
yes
id
d9550310-9ab7-41ae-a0e5-eff615ca9d29 (old id 3070021)
date added to LUP
2012-10-05 07:04:55
date last changed
2017-07-23 03:17:49
@article{d9550310-9ab7-41ae-a0e5-eff615ca9d29,
  abstract     = {Background: A growing number of individuals are diagnosed with hereditary cancer. Though increased levels of anxiety and depression have been demonstrated around the time of genetic counselling, most individuals handle life at increased risk well. Data have, however, been collected on individual basis, which led us to focus on family perspectives of hereditary cancer. Methods: Lynch syndrome represents a major type of hereditary colorectal and gynaecological cancer. We preformed open-ended interviews with 27 informants from 9 Lynch syndrome families. Inductive content analysis revealed three major themes: transition to a risk family, patterns of communication and influence on family relations and individual roles. Results: Family members described how learning about Lynch syndrome shifted focus from daily issues to concerns about cancer. Changes in communication related to difficulties in talking to children about heredity and informing new family members and distant relatives about an increased risk of cancer. Influence on relations was exemplified by family members taking on different roles, e. g. females often being responsible for coordinating information about heredity and providing support. Families in which members had experienced cancer at young age typically informed children soon after learning about heredity and at young age, whereas families with experience of cancer at higher age postponed information and thereby also genetic counselling. Conclusions: Three major family perspectives are described in Lynch syndrome families; becoming a risk family, patterns of communication and influence on family relations. Since these issues are central, our findings suggests that such family perspectives should be considered during genetic counselling in order to contribute to information spread, help family members cope with the increased risk, and motivate family members at risk to undergo surveillance.},
  author       = {Bartuma, Katarina and Nilbert, Mef and Carlsson, Christina},
  issn         = {1897-4287},
  keyword      = {Family,Relations,Communication,Lynch syndrome,Qualitative analysis},
  language     = {eng},
  publisher    = {Termedia Publishing House},
  series       = {Hereditary Cancer in Clinical Practice},
  title        = {Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations},
  url          = {http://dx.doi.org/10.1186/1897-4287-10-6},
  volume       = {10},
  year         = {2012},
}