Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study

PURPOSE: Women carrying the mutated BRCA gene, have approximately an 80% life-time risk of developing breast cancer with 50% risk of their children inheriting the gene mutation. Many parents find it difficult to know when and how to disclose this information to their children and how such disclosure...

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Main Authors: Rowland, E, Plumridge, G, Considine, A, Metcalfe, A
Format: Journal article
Language:English
Published: Elsevier 2016
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author Rowland, E
Plumridge, G
Considine, A
Metcalfe, A
author_facet Rowland, E
Plumridge, G
Considine, A
Metcalfe, A
author_sort Rowland, E
collection OXFORD
description PURPOSE: Women carrying the mutated BRCA gene, have approximately an 80% life-time risk of developing breast cancer with 50% risk of their children inheriting the gene mutation. Many parents find it difficult to know when and how to disclose this information to their children and how such disclosure might affect their child&amp;apos;s future decision-making. <br/><br/> METHOD: This study explored the communication of genetic risk information in families using qualitative semi-structured interviews conducted with parents, children (7-11years) and young people (12-18years) affected or at risk from a BRCA gene mutation. Thematic analysis was applied to coded transcripts producing four themes; family communication, perception of cancer risks, risk management strategies and impact of genetic risk communication in children and young people&amp;apos;s decision making. <br/><br/> RESULTS: Twenty-seven individuals from 11 families took part, recruited through purposive sampling techniques. Cancer risk caused by a BRCA gene mutation induced a sense of fear in parents about their children&amp;apos;s future. As a result, parents with hereditary breast cancer disclosed limited information about the risks associated with prophylactic surgery and/or the psychological and emotional impacts of surgery on body image. This had implications to children and young people&amp;apos;s perceptions of prophylactic procedures, which were already influenced by cultural understandings of the &amp;apos;desirable body&amp;apos; and increasing acceptance and proliferation cosmetic surgery. <br/><br/> CONCLUSION: Lack of risk management information and the acculturation of cosmetic surgery combined to limit children and young people&amp;apos;s understanding of the impact of hereditary breast cancer; reducing their ability to actualise the physiological, psychological and emotional consequences of surgery.
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spelling oxford-uuid:56b85dbe-35e3-4c20-b5c0-600d11853e6a2022-03-26T16:52:09ZPreparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview studyJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:56b85dbe-35e3-4c20-b5c0-600d11853e6aEnglishSymplectic Elements at OxfordElsevier2016Rowland, EPlumridge, GConsidine, AMetcalfe, APURPOSE: Women carrying the mutated BRCA gene, have approximately an 80% life-time risk of developing breast cancer with 50% risk of their children inheriting the gene mutation. Many parents find it difficult to know when and how to disclose this information to their children and how such disclosure might affect their child&amp;apos;s future decision-making. <br/><br/> METHOD: This study explored the communication of genetic risk information in families using qualitative semi-structured interviews conducted with parents, children (7-11years) and young people (12-18years) affected or at risk from a BRCA gene mutation. Thematic analysis was applied to coded transcripts producing four themes; family communication, perception of cancer risks, risk management strategies and impact of genetic risk communication in children and young people&amp;apos;s decision making. <br/><br/> RESULTS: Twenty-seven individuals from 11 families took part, recruited through purposive sampling techniques. Cancer risk caused by a BRCA gene mutation induced a sense of fear in parents about their children&amp;apos;s future. As a result, parents with hereditary breast cancer disclosed limited information about the risks associated with prophylactic surgery and/or the psychological and emotional impacts of surgery on body image. This had implications to children and young people&amp;apos;s perceptions of prophylactic procedures, which were already influenced by cultural understandings of the &amp;apos;desirable body&amp;apos; and increasing acceptance and proliferation cosmetic surgery. <br/><br/> CONCLUSION: Lack of risk management information and the acculturation of cosmetic surgery combined to limit children and young people&amp;apos;s understanding of the impact of hereditary breast cancer; reducing their ability to actualise the physiological, psychological and emotional consequences of surgery.
spellingShingle Rowland, E
Plumridge, G
Considine, A
Metcalfe, A
Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study
title Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study
title_full Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study
title_fullStr Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study
title_full_unstemmed Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study
title_short Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study
title_sort preparing young people for future decision making about cancer risk in families affected or at risk from hereditary breast cancer a qualitative interview study
work_keys_str_mv AT rowlande preparingyoungpeopleforfuturedecisionmakingaboutcancerriskinfamiliesaffectedoratriskfromhereditarybreastcanceraqualitativeinterviewstudy
AT plumridgeg preparingyoungpeopleforfuturedecisionmakingaboutcancerriskinfamiliesaffectedoratriskfromhereditarybreastcanceraqualitativeinterviewstudy
AT considinea preparingyoungpeopleforfuturedecisionmakingaboutcancerriskinfamiliesaffectedoratriskfromhereditarybreastcanceraqualitativeinterviewstudy
AT metcalfea preparingyoungpeopleforfuturedecisionmakingaboutcancerriskinfamiliesaffectedoratriskfromhereditarybreastcanceraqualitativeinterviewstudy