More Appreciation of Life or Regretting the Test? Experiences of Living as a Mutation Carrier of Huntington’s Disease
Little is known about how the knowledge of being a mutation carrier for Huntington’s disease (HD) influences lives, emotionally and socially. In this qualitative study 10 interviews were conducted to explore the long term (>5 years) experiences of being a mutation carrier. The results showed a br...
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| Veröffentlicht in: | Journal of genetic counseling 2011-02, Vol.20 (1), p.70-79 |
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| creator | Hagberg, Anette Bui, The-Hung Winnberg, Elisabeth |
| description | Little is known about how the knowledge of being a mutation carrier for Huntington’s disease (HD) influences lives, emotionally and socially. In this qualitative study 10 interviews were conducted to explore the long term (>5 years) experiences of being a mutation carrier. The results showed a broad variety of both positive and negative impact on the carriers’ lives. The most prominent positive changes reported were a greater appreciation of life and a tendency to bring the family closer together. On the other hand, some participants expressed decisional regrets and discussed the negative impact this knowledge had on their psychological well-being. The knowledge variously served as either a motivator or an obstacle in pursuing further education, career or investment in personal health. Deeper understanding of people’s reactions to the certainty of knowing they will become affected with HD is essential for the genetic counseling team in order to provide appropriate support. |
| doi_str_mv | 10.1007/s10897-010-9329-6 |
| format | Article |
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Experiences of Living as a Mutation Carrier of Huntington’s Disease</title><source>MEDLINE</source><source>Wiley Online Library Journals Frontfile Complete</source><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><source>Springer Nature - Complete Springer Journals</source><creator>Hagberg, Anette ; Bui, The-Hung ; Winnberg, Elisabeth</creator><creatorcontrib>Hagberg, Anette ; Bui, The-Hung ; Winnberg, Elisabeth</creatorcontrib><description>Little is known about how the knowledge of being a mutation carrier for Huntington’s disease (HD) influences lives, emotionally and socially. In this qualitative study 10 interviews were conducted to explore the long term (>5 years) experiences of being a mutation carrier. The results showed a broad variety of both positive and negative impact on the carriers’ lives. The most prominent positive changes reported were a greater appreciation of life and a tendency to bring the family closer together. 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Experiences of Living as a Mutation Carrier of Huntington’s Disease</title><title>Journal of genetic counseling</title><addtitle>J Genet Counsel</addtitle><addtitle>J Genet Couns</addtitle><description>Little is known about how the knowledge of being a mutation carrier for Huntington’s disease (HD) influences lives, emotionally and socially. In this qualitative study 10 interviews were conducted to explore the long term (>5 years) experiences of being a mutation carrier. The results showed a broad variety of both positive and negative impact on the carriers’ lives. The most prominent positive changes reported were a greater appreciation of life and a tendency to bring the family closer together. On the other hand, some participants expressed decisional regrets and discussed the negative impact this knowledge had on their psychological well-being. The knowledge variously served as either a motivator or an obstacle in pursuing further education, career or investment in personal health. Deeper understanding of people’s reactions to the certainty of knowing they will become affected with HD is essential for the genetic counseling team in order to provide appropriate support.</description><subject>Adult</subject><subject>Appreciation</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedicine</subject><subject>Carriers</subject><subject>Child</subject><subject>Clinical Psychology</subject><subject>Emotions</subject><subject>Ethics</subject><subject>Experience</subject><subject>Female</subject><subject>Genetic Carrier Screening</subject><subject>Genetic counseling</subject><subject>Genetic counselling</subject><subject>Genetic testing</subject><subject>Gynecology</subject><subject>Human Genetics</subject><subject>Humans</subject><subject>Huntington Disease - genetics</subject><subject>Huntington Disease - psychology</subject><subject>Huntington's chorea</subject><subject>Huntington's disease</subject><subject>Huntingtons disease</subject><subject>Male</subject><subject>MEDICIN</subject><subject>MEDICINE</subject><subject>Middle Aged</subject><subject>Mutation</subject><subject>Original Research</subject><subject>Predictive testing</subject><subject>Psychological aspects</subject><subject>Psychological impact</subject><subject>Psychological wellbeing</subject><subject>Public Health</subject><subject>Qualitative research</subject><subject>Qualitative study</subject><subject>Regret</subject><subject>Social Behavior</subject><subject>Teams</subject><issn>1059-7700</issn><issn>1573-3599</issn><issn>1573-3599</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2011</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNqNks1uEzEUhUcIRNvAA7BBFhsWMOD_n1UVpaUFpUJCha3lTO6kLsl4sGdIu-M1eD2eBI8mFAmpCitbvt89vj4-RfGM4DcEY_U2EayNKjHBpWHUlPJBcUiEYiUTxjzMeyxMqRTGB8VRStcYY6MFeVwcUKyVpkQdFtuLEAFN2zZC5V3nQ4NCjea-BhQi-gSrCF3nmxXqrgBdQuqO0elNC9FDU0Ea2e9D3SXk0EXfjRozFzMSh_p53wwCXWh-_fiZ0IlP4BI8KR7Vbp3g6W6dFJ_fnV7Ozsv5x7P3s-m8rCSTuGRuCYRXSi2qpcOGmkpRTgSpOddOCOGokSBIpZWUHC-UkrVYYMYMqSSWtWSTohx10xbafmHb6Dcu3trgvN0dfc07sIJrRWjmX9_Ln_gvUxviyva9JVxLwjL-aj8O6coSlv9lUrwc6TaGb3020258qmC9dg2EPlktqTCEC_kfJGbKcEP3k4Jwpbkabn_xD3kd-thk9wco20rZIEdGqIohpQj13ZMItkPo7Bg6m0Nnh9DZYdjnO-F-sYHlXceflGVAjcDWr-F2v6L9cDbjuYJzJ935m5uaFcS_M98_z2_Y-vHq</recordid><startdate>201102</startdate><enddate>201102</enddate><creator>Hagberg, Anette</creator><creator>Bui, The-Hung</creator><creator>Winnberg, Elisabeth</creator><general>Springer US</general><general>Blackwell Publishing Ltd</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>0-V</scope><scope>3V.</scope><scope>7QJ</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88G</scope><scope>8AO</scope><scope>8FD</scope><scope>8FE</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AN0</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>HEHIP</scope><scope>K9.</scope><scope>KB0</scope><scope>LK8</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>M2S</scope><scope>M7P</scope><scope>NAPCQ</scope><scope>P64</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>RC3</scope><scope>7X8</scope><scope>7TK</scope><scope>ADTPV</scope><scope>AOWAS</scope><scope>DG2</scope><scope>DF2</scope></search><sort><creationdate>201102</creationdate><title>More Appreciation of Life or Regretting the Test? 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Experiences of Living as a Mutation Carrier of Huntington’s Disease</atitle><jtitle>Journal of genetic counseling</jtitle><stitle>J Genet Counsel</stitle><addtitle>J Genet Couns</addtitle><date>2011-02</date><risdate>2011</risdate><volume>20</volume><issue>1</issue><spage>70</spage><epage>79</epage><pages>70-79</pages><issn>1059-7700</issn><issn>1573-3599</issn><eissn>1573-3599</eissn><coden>JGCOET</coden><abstract>Little is known about how the knowledge of being a mutation carrier for Huntington’s disease (HD) influences lives, emotionally and socially. In this qualitative study 10 interviews were conducted to explore the long term (>5 years) experiences of being a mutation carrier. The results showed a broad variety of both positive and negative impact on the carriers’ lives. The most prominent positive changes reported were a greater appreciation of life and a tendency to bring the family closer together. 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| ispartof | Journal of genetic counseling, 2011-02, Vol.20 (1), p.70-79 |
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| language | eng |
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| subjects | Adult Appreciation Biomedical and Life Sciences Biomedicine Carriers Child Clinical Psychology Emotions Ethics Experience Female Genetic Carrier Screening Genetic counseling Genetic counselling Genetic testing Gynecology Human Genetics Humans Huntington Disease - genetics Huntington Disease - psychology Huntington's chorea Huntington's disease Huntingtons disease Male MEDICIN MEDICINE Middle Aged Mutation Original Research Predictive testing Psychological aspects Psychological impact Psychological wellbeing Public Health Qualitative research Qualitative study Regret Social Behavior Teams |
| title | More Appreciation of Life or Regretting the Test? Experiences of Living as a Mutation Carrier of Huntington’s Disease |
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