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

<p>Abstract</p> <p>Background</p> <p>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 wel...

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Main Authors: Bartuma Katarina, Nilbert Mef, Carlsson Christina
Format: Article
Language:English
Published: BMC 2012-05-01
Series:Hereditary Cancer in Clinical Practice
Subjects:
Online Access:http://www.hccpjournal.com/content/10/1/6
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spelling doaj-25e3b40f6f3245d88c079d7c69d4a6622020-11-24T23:57:17ZengBMCHereditary Cancer in Clinical Practice1897-42872012-05-01101610.1186/1897-4287-10-6Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relationsBartuma KatarinaNilbert MefCarlsson Christina<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>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: <it>transition to a risk family, patterns of communication</it> and <it>influence on family relations and individual roles</it>.</p> <p>Results</p> <p>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.</p> <p>Conclusions</p> <p>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.</p> http://www.hccpjournal.com/content/10/1/6FamilyRelationsCommunicationLynch syndromeQualitative analysis
collection DOAJ
language English
format Article
sources DOAJ
author Bartuma Katarina
Nilbert Mef
Carlsson Christina
spellingShingle Bartuma Katarina
Nilbert Mef
Carlsson Christina
Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations
Hereditary Cancer in Clinical Practice
Family
Relations
Communication
Lynch syndrome
Qualitative analysis
author_facet Bartuma Katarina
Nilbert Mef
Carlsson Christina
author_sort Bartuma Katarina
title Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations
title_short Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations
title_full Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations
title_fullStr Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations
title_full_unstemmed Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations
title_sort family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations
publisher BMC
series Hereditary Cancer in Clinical Practice
issn 1897-4287
publishDate 2012-05-01
description <p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>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: <it>transition to a risk family, patterns of communication</it> and <it>influence on family relations and individual roles</it>.</p> <p>Results</p> <p>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.</p> <p>Conclusions</p> <p>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.</p>
topic Family
Relations
Communication
Lynch syndrome
Qualitative analysis
url http://www.hccpjournal.com/content/10/1/6
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