Living a Cancer Surveillance Life: A Meta‐Ethnographic Synthesis of Everyday Experiences and Ambivalences for Women Living With Hereditary Risk of Breast and/or Ovarian Cancer
ABSTRACT Objective Women with or at risk of hereditary breast‐ and ovarian cancer (HBOC) often live a surveillance‐focused life from young adulthood. As they navigate a life of heightened medical vigilance, or a “cancer surveillance life,” we explore how women with HBOC, as well as their partners an...
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| Veröffentlicht in: | Psycho-oncology (Chichester, England) England), 2024-12, Vol.33 (12), p.e70054-n/a |
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| creator | Gislinge, Julie Isabelle Plougmann Byrjalsen, Anna Naver, Klara Vinsand Clausen, Helle Vibeke Ravn, Pernille Petersen, Kresten Rubeck Wadt, Karin Wahlberg, Ayo |
| description | ABSTRACT
Objective
Women with or at risk of hereditary breast‐ and ovarian cancer (HBOC) often live a surveillance‐focused life from young adulthood. As they navigate a life of heightened medical vigilance, or a “cancer surveillance life,” we explore how women with HBOC, as well as their partners and families, experience this particular kind of living through a thorough literature review of existing qualitative research.
Methods
We performed Boolean searches in PubMed, EMBASE, EBSCOhost, PSYCHinfo, Scopus, and Web of Science from April–May 2022, identifying 506 relevant articles. After eliminating duplicates and quantitative studies, we systematically analyzed 53 articles. Articles examining all aspects of living with HBOC were eligible for inclusion. Following quality assessment by a verified appraisal tool, 28 articles were included in this review. We undertook an “a‐lines‐of‐argument synthesis,” and identified key similarities across studies to highlight generalizable aspects of living with HBOC.
Results
We discovered five central themes which capture the ambivalences experienced by women living with HBOC: (1) an unresolved balancing act regarding genetic testing (2) burdens of relaying genetic information within the family (3) experienced risk discrepancies (4) preservation of the self and: (5) unsettled reproductive feelings.
Conclusions
Living with HBOC is filled with ambivalences, which are critical for decision making concerning disclosing risks to family members and children, choosing between risk‐reducing surgeries or surveillance, and family planning. Healthcare professionals should be aware of these findings when counseling women and families with HBOC to provide the best support possible in navigating their unique kind of living. |
| doi_str_mv | 10.1002/pon.70054 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_proquest_miscellaneous_3147973209</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>3149198881</sourcerecordid><originalsourceid>FETCH-LOGICAL-p1244-5587f687be16c2b4568eb42ad4106ac2d6234830fa045d752a311909d4d8fa6b3</originalsourceid><addsrcrecordid>eNpdkc9u1DAQxi1ERUvhwAsgS1y4pGs7jh1zW1YLRdp2EQX1GDnxpOuSf9hJIDcegVfhlfokdbpbDpw89vzmm_F8CL2i5IwSwhZd25xJQhL-BJ1QolREBaVP5ziRkWJcHaPn3t8SEmglnqHjWEkipBIn6O_Gjra5wRqvdFOAw1eDG8FW1XzDG1vCO7zEF9Dru99_1v2uaW-c7na2wFdT0-_AW4_bEq9HcJPRE17_6sBZCMUe68bgZZ3bUVf7h7J1-LqtocGHrte23-FzcGBsr92Ev1j_fZZ770D7fhZYhJLtqJ3VzWHCF-io1JWHl4fzFH37sP66Oo8224-fVstN1FHGeZQkqSxFKnOgomA5T0QKOWfacEqELpgRLOZpTEpNeGJkwnRMqSLKcJOWWuTxKXq71-1c-2MA32e19QXMm4F28FlMuVQyZkQF9M1_6G07uCZMN1OKqjRNaaBeH6ghr8FknbN1-HT2aEYAFnvgp61g-penJJtdzoLL2YPL2eft5UMQ3wN-6psl</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>3149198881</pqid></control><display><type>article</type><title>Living a Cancer Surveillance Life: A Meta‐Ethnographic Synthesis of Everyday Experiences and Ambivalences for Women Living With Hereditary Risk of Breast and/or Ovarian Cancer</title><source>MEDLINE</source><source>Wiley Journals</source><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><creator>Gislinge, Julie Isabelle Plougmann ; Byrjalsen, Anna ; Naver, Klara Vinsand ; Clausen, Helle Vibeke ; Ravn, Pernille ; Petersen, Kresten Rubeck ; Wadt, Karin ; Wahlberg, Ayo</creator><creatorcontrib>Gislinge, Julie Isabelle Plougmann ; Byrjalsen, Anna ; Naver, Klara Vinsand ; Clausen, Helle Vibeke ; Ravn, Pernille ; Petersen, Kresten Rubeck ; Wadt, Karin ; Wahlberg, Ayo</creatorcontrib><description>ABSTRACT
Objective
Women with or at risk of hereditary breast‐ and ovarian cancer (HBOC) often live a surveillance‐focused life from young adulthood. As they navigate a life of heightened medical vigilance, or a “cancer surveillance life,” we explore how women with HBOC, as well as their partners and families, experience this particular kind of living through a thorough literature review of existing qualitative research.
Methods
We performed Boolean searches in PubMed, EMBASE, EBSCOhost, PSYCHinfo, Scopus, and Web of Science from April–May 2022, identifying 506 relevant articles. After eliminating duplicates and quantitative studies, we systematically analyzed 53 articles. Articles examining all aspects of living with HBOC were eligible for inclusion. Following quality assessment by a verified appraisal tool, 28 articles were included in this review. We undertook an “a‐lines‐of‐argument synthesis,” and identified key similarities across studies to highlight generalizable aspects of living with HBOC.
Results
We discovered five central themes which capture the ambivalences experienced by women living with HBOC: (1) an unresolved balancing act regarding genetic testing (2) burdens of relaying genetic information within the family (3) experienced risk discrepancies (4) preservation of the self and: (5) unsettled reproductive feelings.
Conclusions
Living with HBOC is filled with ambivalences, which are critical for decision making concerning disclosing risks to family members and children, choosing between risk‐reducing surgeries or surveillance, and family planning. Healthcare professionals should be aware of these findings when counseling women and families with HBOC to provide the best support possible in navigating their unique kind of living.</description><identifier>ISSN: 1057-9249</identifier><identifier>ISSN: 1099-1611</identifier><identifier>EISSN: 1099-1611</identifier><identifier>DOI: 10.1002/pon.70054</identifier><identifier>PMID: 39706796</identifier><language>eng</language><publisher>England: Wiley Subscription Services, Inc</publisher><subject>Adult ; Anthropology, Cultural ; Breast cancer ; Breast Neoplasms - genetics ; Breast Neoplasms - psychology ; cancer predisposition ; Decision making ; Discrepancies ; Family planning ; Female ; Genetic Predisposition to Disease ; Genetic Testing ; genetics ; HBOC ; Health care ; Humans ; Literature reviews ; Medical personnel ; oncology ; Ovarian cancer ; Ovarian Neoplasms - genetics ; Ovarian Neoplasms - psychology ; Preservation ; Qualitative Research ; Quality assessment ; Relatives ; Surgery ; Surveillance ; systematic review ; Vigilance ; Women ; Young adults</subject><ispartof>Psycho-oncology (Chichester, England), 2024-12, Vol.33 (12), p.e70054-n/a</ispartof><rights>2024 John Wiley & Sons Ltd.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><orcidid>0000-0002-0200-1176</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Fpon.70054$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Fpon.70054$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,780,784,1417,27924,27925,30999,45574,45575</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/39706796$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Gislinge, Julie Isabelle Plougmann</creatorcontrib><creatorcontrib>Byrjalsen, Anna</creatorcontrib><creatorcontrib>Naver, Klara Vinsand</creatorcontrib><creatorcontrib>Clausen, Helle Vibeke</creatorcontrib><creatorcontrib>Ravn, Pernille</creatorcontrib><creatorcontrib>Petersen, Kresten Rubeck</creatorcontrib><creatorcontrib>Wadt, Karin</creatorcontrib><creatorcontrib>Wahlberg, Ayo</creatorcontrib><title>Living a Cancer Surveillance Life: A Meta‐Ethnographic Synthesis of Everyday Experiences and Ambivalences for Women Living With Hereditary Risk of Breast and/or Ovarian Cancer</title><title>Psycho-oncology (Chichester, England)</title><addtitle>Psychooncology</addtitle><description>ABSTRACT
Objective
Women with or at risk of hereditary breast‐ and ovarian cancer (HBOC) often live a surveillance‐focused life from young adulthood. As they navigate a life of heightened medical vigilance, or a “cancer surveillance life,” we explore how women with HBOC, as well as their partners and families, experience this particular kind of living through a thorough literature review of existing qualitative research.
Methods
We performed Boolean searches in PubMed, EMBASE, EBSCOhost, PSYCHinfo, Scopus, and Web of Science from April–May 2022, identifying 506 relevant articles. After eliminating duplicates and quantitative studies, we systematically analyzed 53 articles. Articles examining all aspects of living with HBOC were eligible for inclusion. Following quality assessment by a verified appraisal tool, 28 articles were included in this review. We undertook an “a‐lines‐of‐argument synthesis,” and identified key similarities across studies to highlight generalizable aspects of living with HBOC.
Results
We discovered five central themes which capture the ambivalences experienced by women living with HBOC: (1) an unresolved balancing act regarding genetic testing (2) burdens of relaying genetic information within the family (3) experienced risk discrepancies (4) preservation of the self and: (5) unsettled reproductive feelings.
Conclusions
Living with HBOC is filled with ambivalences, which are critical for decision making concerning disclosing risks to family members and children, choosing between risk‐reducing surgeries or surveillance, and family planning. Healthcare professionals should be aware of these findings when counseling women and families with HBOC to provide the best support possible in navigating their unique kind of living.</description><subject>Adult</subject><subject>Anthropology, Cultural</subject><subject>Breast cancer</subject><subject>Breast Neoplasms - genetics</subject><subject>Breast Neoplasms - psychology</subject><subject>cancer predisposition</subject><subject>Decision making</subject><subject>Discrepancies</subject><subject>Family planning</subject><subject>Female</subject><subject>Genetic Predisposition to Disease</subject><subject>Genetic Testing</subject><subject>genetics</subject><subject>HBOC</subject><subject>Health care</subject><subject>Humans</subject><subject>Literature reviews</subject><subject>Medical personnel</subject><subject>oncology</subject><subject>Ovarian cancer</subject><subject>Ovarian Neoplasms - genetics</subject><subject>Ovarian Neoplasms - psychology</subject><subject>Preservation</subject><subject>Qualitative Research</subject><subject>Quality assessment</subject><subject>Relatives</subject><subject>Surgery</subject><subject>Surveillance</subject><subject>systematic review</subject><subject>Vigilance</subject><subject>Women</subject><subject>Young adults</subject><issn>1057-9249</issn><issn>1099-1611</issn><issn>1099-1611</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNpdkc9u1DAQxi1ERUvhwAsgS1y4pGs7jh1zW1YLRdp2EQX1GDnxpOuSf9hJIDcegVfhlfokdbpbDpw89vzmm_F8CL2i5IwSwhZd25xJQhL-BJ1QolREBaVP5ziRkWJcHaPn3t8SEmglnqHjWEkipBIn6O_Gjra5wRqvdFOAw1eDG8FW1XzDG1vCO7zEF9Dru99_1v2uaW-c7na2wFdT0-_AW4_bEq9HcJPRE17_6sBZCMUe68bgZZ3bUVf7h7J1-LqtocGHrte23-FzcGBsr92Ev1j_fZZ770D7fhZYhJLtqJ3VzWHCF-io1JWHl4fzFH37sP66Oo8224-fVstN1FHGeZQkqSxFKnOgomA5T0QKOWfacEqELpgRLOZpTEpNeGJkwnRMqSLKcJOWWuTxKXq71-1c-2MA32e19QXMm4F28FlMuVQyZkQF9M1_6G07uCZMN1OKqjRNaaBeH6ghr8FknbN1-HT2aEYAFnvgp61g-penJJtdzoLL2YPL2eft5UMQ3wN-6psl</recordid><startdate>202412</startdate><enddate>202412</enddate><creator>Gislinge, Julie Isabelle Plougmann</creator><creator>Byrjalsen, Anna</creator><creator>Naver, Klara Vinsand</creator><creator>Clausen, Helle Vibeke</creator><creator>Ravn, Pernille</creator><creator>Petersen, Kresten Rubeck</creator><creator>Wadt, Karin</creator><creator>Wahlberg, Ayo</creator><general>Wiley Subscription Services, Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>7QJ</scope><scope>ASE</scope><scope>FPQ</scope><scope>K6X</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0002-0200-1176</orcidid></search><sort><creationdate>202412</creationdate><title>Living a Cancer Surveillance Life: A Meta‐Ethnographic Synthesis of Everyday Experiences and Ambivalences for Women Living With Hereditary Risk of Breast and/or Ovarian Cancer</title><author>Gislinge, Julie Isabelle Plougmann ; Byrjalsen, Anna ; Naver, Klara Vinsand ; Clausen, Helle Vibeke ; Ravn, Pernille ; Petersen, Kresten Rubeck ; Wadt, Karin ; Wahlberg, Ayo</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-p1244-5587f687be16c2b4568eb42ad4106ac2d6234830fa045d752a311909d4d8fa6b3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2024</creationdate><topic>Adult</topic><topic>Anthropology, Cultural</topic><topic>Breast cancer</topic><topic>Breast Neoplasms - genetics</topic><topic>Breast Neoplasms - psychology</topic><topic>cancer predisposition</topic><topic>Decision making</topic><topic>Discrepancies</topic><topic>Family planning</topic><topic>Female</topic><topic>Genetic Predisposition to Disease</topic><topic>Genetic Testing</topic><topic>genetics</topic><topic>HBOC</topic><topic>Health care</topic><topic>Humans</topic><topic>Literature reviews</topic><topic>Medical personnel</topic><topic>oncology</topic><topic>Ovarian cancer</topic><topic>Ovarian Neoplasms - genetics</topic><topic>Ovarian Neoplasms - psychology</topic><topic>Preservation</topic><topic>Qualitative Research</topic><topic>Quality assessment</topic><topic>Relatives</topic><topic>Surgery</topic><topic>Surveillance</topic><topic>systematic review</topic><topic>Vigilance</topic><topic>Women</topic><topic>Young adults</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Gislinge, Julie Isabelle Plougmann</creatorcontrib><creatorcontrib>Byrjalsen, Anna</creatorcontrib><creatorcontrib>Naver, Klara Vinsand</creatorcontrib><creatorcontrib>Clausen, Helle Vibeke</creatorcontrib><creatorcontrib>Ravn, Pernille</creatorcontrib><creatorcontrib>Petersen, Kresten Rubeck</creatorcontrib><creatorcontrib>Wadt, Karin</creatorcontrib><creatorcontrib>Wahlberg, Ayo</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>British Nursing Index</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>MEDLINE - Academic</collection><jtitle>Psycho-oncology (Chichester, England)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Gislinge, Julie Isabelle Plougmann</au><au>Byrjalsen, Anna</au><au>Naver, Klara Vinsand</au><au>Clausen, Helle Vibeke</au><au>Ravn, Pernille</au><au>Petersen, Kresten Rubeck</au><au>Wadt, Karin</au><au>Wahlberg, Ayo</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Living a Cancer Surveillance Life: A Meta‐Ethnographic Synthesis of Everyday Experiences and Ambivalences for Women Living With Hereditary Risk of Breast and/or Ovarian Cancer</atitle><jtitle>Psycho-oncology (Chichester, England)</jtitle><addtitle>Psychooncology</addtitle><date>2024-12</date><risdate>2024</risdate><volume>33</volume><issue>12</issue><spage>e70054</spage><epage>n/a</epage><pages>e70054-n/a</pages><issn>1057-9249</issn><issn>1099-1611</issn><eissn>1099-1611</eissn><abstract>ABSTRACT
Objective
Women with or at risk of hereditary breast‐ and ovarian cancer (HBOC) often live a surveillance‐focused life from young adulthood. As they navigate a life of heightened medical vigilance, or a “cancer surveillance life,” we explore how women with HBOC, as well as their partners and families, experience this particular kind of living through a thorough literature review of existing qualitative research.
Methods
We performed Boolean searches in PubMed, EMBASE, EBSCOhost, PSYCHinfo, Scopus, and Web of Science from April–May 2022, identifying 506 relevant articles. After eliminating duplicates and quantitative studies, we systematically analyzed 53 articles. Articles examining all aspects of living with HBOC were eligible for inclusion. Following quality assessment by a verified appraisal tool, 28 articles were included in this review. We undertook an “a‐lines‐of‐argument synthesis,” and identified key similarities across studies to highlight generalizable aspects of living with HBOC.
Results
We discovered five central themes which capture the ambivalences experienced by women living with HBOC: (1) an unresolved balancing act regarding genetic testing (2) burdens of relaying genetic information within the family (3) experienced risk discrepancies (4) preservation of the self and: (5) unsettled reproductive feelings.
Conclusions
Living with HBOC is filled with ambivalences, which are critical for decision making concerning disclosing risks to family members and children, choosing between risk‐reducing surgeries or surveillance, and family planning. Healthcare professionals should be aware of these findings when counseling women and families with HBOC to provide the best support possible in navigating their unique kind of living.</abstract><cop>England</cop><pub>Wiley Subscription Services, Inc</pub><pmid>39706796</pmid><doi>10.1002/pon.70054</doi><tpages>18</tpages><orcidid>https://orcid.org/0000-0002-0200-1176</orcidid></addata></record> |
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| ispartof | Psycho-oncology (Chichester, England), 2024-12, Vol.33 (12), p.e70054-n/a |
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| source | MEDLINE; Wiley Journals; Applied Social Sciences Index & Abstracts (ASSIA) |
| subjects | Adult Anthropology, Cultural Breast cancer Breast Neoplasms - genetics Breast Neoplasms - psychology cancer predisposition Decision making Discrepancies Family planning Female Genetic Predisposition to Disease Genetic Testing genetics HBOC Health care Humans Literature reviews Medical personnel oncology Ovarian cancer Ovarian Neoplasms - genetics Ovarian Neoplasms - psychology Preservation Qualitative Research Quality assessment Relatives Surgery Surveillance systematic review Vigilance Women Young adults |
| title | Living a Cancer Surveillance Life: A Meta‐Ethnographic Synthesis of Everyday Experiences and Ambivalences for Women Living With Hereditary Risk of Breast and/or Ovarian Cancer |
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