Breaking Difficult News in a Cross-cultural Setting: a Qualitative Study about Latina Mothers of Children with Down Syndrome
Giving difficult news to patients represents a common dilemma for health care professionals. Based on three decades of research, various authors have proposed guidelines outlining the ideal setting, delivery, and timing. Existing publications focus on patients of European descent and may not be appl...
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Veröffentlicht in: | Journal of genetic counseling 2012-08, Vol.21 (4), p.582-590 |
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creator | Sheets, Kayla M. Baty, Bonnie J. Vázquez, Juan Carlos Carey, John C. Hobson, Wendy L. |
description | Giving difficult news to patients represents a common dilemma for health care professionals. Based on three decades of research, various authors have proposed guidelines outlining the ideal setting, delivery, and timing. Existing publications focus on patients of European descent and may not be applicable in cross-cultural settings. We explored perceptions of Spanish-speaking mothers who have a child with Down syndrome and how they preferred to receive the news of their child’s diagnosis. We conducted semi-structured qualitative interviews (
n
= 14), which were coded and analyzed by thematic networks to identify common themes. Six significant themes emerged: Cultural Belief System, Communication, Support/Lack of Support, Feelings Engendered, Medical Issues, and Medical System. One overarching theme of mother-child bonding encompassed all sub-themes. The mothers desired the news in a more positive, balanced light and with more complete explanations about the condition. Mothers felt excluded from the diagnostic process and wanted to be better informed about the need for diagnostic studies. Participants used religious beliefs to explain the reason for their child’s condition. Many factors influenced Latina mothers’ ability to bond initially with their children with Down syndrome. Ideally, these factors should be acknowledged during informing interviews to assist Latino families in adjustment. |
doi_str_mv | 10.1007/s10897-011-9425-2 |
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n
= 14), which were coded and analyzed by thematic networks to identify common themes. Six significant themes emerged: Cultural Belief System, Communication, Support/Lack of Support, Feelings Engendered, Medical Issues, and Medical System. One overarching theme of mother-child bonding encompassed all sub-themes. The mothers desired the news in a more positive, balanced light and with more complete explanations about the condition. Mothers felt excluded from the diagnostic process and wanted to be better informed about the need for diagnostic studies. Participants used religious beliefs to explain the reason for their child’s condition. Many factors influenced Latina mothers’ ability to bond initially with their children with Down syndrome. Ideally, these factors should be acknowledged during informing interviews to assist Latino families in adjustment.</description><identifier>ISSN: 1059-7700</identifier><identifier>EISSN: 1573-3599</identifier><identifier>DOI: 10.1007/s10897-011-9425-2</identifier><identifier>PMID: 22147086</identifier><identifier>CODEN: JGCOET</identifier><language>eng</language><publisher>Boston: Springer US</publisher><subject>Attachment ; Bad or surprising news ; Biomedical and Life Sciences ; Biomedicine ; Bonding ; Children ; Clinical Psychology ; Commons dilemma ; Cross-Cultural Comparison ; Disability ; Down Syndrome - psychology ; Down's syndrome ; Ethics ; Female ; Gynecology ; Hispanic ; Hispanic Americans ; Human Genetics ; Humans ; Latin American people ; Mothers ; Mothers - psychology ; Multicultural counseling ; News ; Original Research ; Public Health ; Qualitative research ; Thematic networks</subject><ispartof>Journal of genetic counseling, 2012-08, Vol.21 (4), p.582-590</ispartof><rights>National Society of Genetic Counselors, Inc. 2011</rights><rights>2012 National Society of Genetic Counselors, Inc.</rights><rights>National Society of Genetic Counselors, Inc. 2012</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4862-9ccd743747c71aff0d26ef8459adc4a97731b26e54f339e92835d3f2cad44f2e3</citedby><cites>FETCH-LOGICAL-c4862-9ccd743747c71aff0d26ef8459adc4a97731b26e54f339e92835d3f2cad44f2e3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s10897-011-9425-2$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s10897-011-9425-2$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>314,780,784,1417,12846,27924,27925,30999,31000,41488,42557,45574,45575,51319</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/22147086$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Sheets, Kayla M.</creatorcontrib><creatorcontrib>Baty, Bonnie J.</creatorcontrib><creatorcontrib>Vázquez, Juan Carlos</creatorcontrib><creatorcontrib>Carey, John C.</creatorcontrib><creatorcontrib>Hobson, Wendy L.</creatorcontrib><title>Breaking Difficult News in a Cross-cultural Setting: a Qualitative Study about Latina Mothers of Children with Down Syndrome</title><title>Journal of genetic counseling</title><addtitle>J Genet Counsel</addtitle><addtitle>J Genet Couns</addtitle><description>Giving difficult news to patients represents a common dilemma for health care professionals. Based on three decades of research, various authors have proposed guidelines outlining the ideal setting, delivery, and timing. Existing publications focus on patients of European descent and may not be applicable in cross-cultural settings. We explored perceptions of Spanish-speaking mothers who have a child with Down syndrome and how they preferred to receive the news of their child’s diagnosis. We conducted semi-structured qualitative interviews (
n
= 14), which were coded and analyzed by thematic networks to identify common themes. Six significant themes emerged: Cultural Belief System, Communication, Support/Lack of Support, Feelings Engendered, Medical Issues, and Medical System. One overarching theme of mother-child bonding encompassed all sub-themes. The mothers desired the news in a more positive, balanced light and with more complete explanations about the condition. Mothers felt excluded from the diagnostic process and wanted to be better informed about the need for diagnostic studies. Participants used religious beliefs to explain the reason for their child’s condition. Many factors influenced Latina mothers’ ability to bond initially with their children with Down syndrome. Ideally, these factors should be acknowledged during informing interviews to assist Latino families in adjustment.</description><subject>Attachment</subject><subject>Bad or surprising news</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedicine</subject><subject>Bonding</subject><subject>Children</subject><subject>Clinical Psychology</subject><subject>Commons dilemma</subject><subject>Cross-Cultural Comparison</subject><subject>Disability</subject><subject>Down Syndrome - psychology</subject><subject>Down's syndrome</subject><subject>Ethics</subject><subject>Female</subject><subject>Gynecology</subject><subject>Hispanic</subject><subject>Hispanic Americans</subject><subject>Human Genetics</subject><subject>Humans</subject><subject>Latin American people</subject><subject>Mothers</subject><subject>Mothers - psychology</subject><subject>Multicultural counseling</subject><subject>News</subject><subject>Original Research</subject><subject>Public Health</subject><subject>Qualitative research</subject><subject>Thematic networks</subject><issn>1059-7700</issn><issn>1573-3599</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2012</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>eNqNkUuLFDEUhYMozkN_gBsJuHETzbNScac146i0irSui3RVMp2xOhnzsGnwx5uiRhFBxlXCzXcO5-YA8IjgZwRj-TwR3CqJMCFIcSoQvQOOiZAMMaHU3XrHQiEpMT4CJyldYYxVK8h9cEQp4RK3zTH48Soa_dX5S3jmrHVDmTL8YPYJOg817GJICc3DEvUE1ybnir6oL5-KnlzW2X03cJ3LeIB6E0qGqzryGr4PeWtigsHCbuumMRoP9y5v4VnYe7g--DGGnXkA7lk9JfPw5jwFX16ff-7eoNXHi7fdyxUaeNtQpIZhlJxJLgdJtLV4pI2xLRdKjwPXSkpGNnUkuGVMGUVbJkZm6aBHzi017BQ8XXyvY_hWTMr9zqXBTJP2JpTUE0YZ45gocjuKaYupJIT_D8poDaOaij75C70KJfq680zRRlIqVKXIQg3zt0dj--vodjoeKtTPhfdL4X0tvJ8L72nVPL5xLpudGX8rfjVcAbkAezeZw-2O_buLjmPRztZ0UaYq8pcm_hn6X3l-Ai1dxOY</recordid><startdate>201208</startdate><enddate>201208</enddate><creator>Sheets, Kayla M.</creator><creator>Baty, Bonnie J.</creator><creator>Vázquez, Juan Carlos</creator><creator>Carey, John C.</creator><creator>Hobson, Wendy L.</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>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>RC3</scope><scope>7X8</scope></search><sort><creationdate>201208</creationdate><title>Breaking Difficult News in a Cross-cultural Setting: a Qualitative Study about Latina Mothers of Children with Down Syndrome</title><author>Sheets, Kayla M. ; Baty, Bonnie J. ; Vázquez, Juan Carlos ; Carey, John C. ; Hobson, Wendy L.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4862-9ccd743747c71aff0d26ef8459adc4a97731b26e54f339e92835d3f2cad44f2e3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2012</creationdate><topic>Attachment</topic><topic>Bad or surprising news</topic><topic>Biomedical and Life Sciences</topic><topic>Biomedicine</topic><topic>Bonding</topic><topic>Children</topic><topic>Clinical Psychology</topic><topic>Commons dilemma</topic><topic>Cross-Cultural Comparison</topic><topic>Disability</topic><topic>Down Syndrome - psychology</topic><topic>Down's syndrome</topic><topic>Ethics</topic><topic>Female</topic><topic>Gynecology</topic><topic>Hispanic</topic><topic>Hispanic Americans</topic><topic>Human Genetics</topic><topic>Humans</topic><topic>Latin American people</topic><topic>Mothers</topic><topic>Mothers - psychology</topic><topic>Multicultural counseling</topic><topic>News</topic><topic>Original Research</topic><topic>Public Health</topic><topic>Qualitative research</topic><topic>Thematic networks</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Sheets, Kayla M.</creatorcontrib><creatorcontrib>Baty, Bonnie J.</creatorcontrib><creatorcontrib>Vázquez, Juan Carlos</creatorcontrib><creatorcontrib>Carey, John C.</creatorcontrib><creatorcontrib>Hobson, Wendy L.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Social Sciences Premium Collection</collection><collection>ProQuest Central (Corporate)</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>Nursing & Allied Health Database</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>ProQuest Pharma Collection</collection><collection>Technology Research Database</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Natural Science Collection</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>Social Science Premium Collection</collection><collection>British Nursing Database</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>Natural Science Collection</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Engineering Research Database</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>SciTech Premium Collection</collection><collection>Sociology Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>ProQuest Biological Science Collection</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Psychology Database</collection><collection>Sociology Database</collection><collection>Biological Science Database</collection><collection>Nursing & Allied Health Premium</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of genetic counseling</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Sheets, Kayla M.</au><au>Baty, Bonnie J.</au><au>Vázquez, Juan Carlos</au><au>Carey, John C.</au><au>Hobson, Wendy L.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Breaking Difficult News in a Cross-cultural Setting: a Qualitative Study about Latina Mothers of Children with Down Syndrome</atitle><jtitle>Journal of genetic counseling</jtitle><stitle>J Genet Counsel</stitle><addtitle>J Genet Couns</addtitle><date>2012-08</date><risdate>2012</risdate><volume>21</volume><issue>4</issue><spage>582</spage><epage>590</epage><pages>582-590</pages><issn>1059-7700</issn><eissn>1573-3599</eissn><coden>JGCOET</coden><abstract>Giving difficult news to patients represents a common dilemma for health care professionals. Based on three decades of research, various authors have proposed guidelines outlining the ideal setting, delivery, and timing. Existing publications focus on patients of European descent and may not be applicable in cross-cultural settings. We explored perceptions of Spanish-speaking mothers who have a child with Down syndrome and how they preferred to receive the news of their child’s diagnosis. We conducted semi-structured qualitative interviews (
n
= 14), which were coded and analyzed by thematic networks to identify common themes. Six significant themes emerged: Cultural Belief System, Communication, Support/Lack of Support, Feelings Engendered, Medical Issues, and Medical System. One overarching theme of mother-child bonding encompassed all sub-themes. The mothers desired the news in a more positive, balanced light and with more complete explanations about the condition. Mothers felt excluded from the diagnostic process and wanted to be better informed about the need for diagnostic studies. Participants used religious beliefs to explain the reason for their child’s condition. Many factors influenced Latina mothers’ ability to bond initially with their children with Down syndrome. Ideally, these factors should be acknowledged during informing interviews to assist Latino families in adjustment.</abstract><cop>Boston</cop><pub>Springer US</pub><pmid>22147086</pmid><doi>10.1007/s10897-011-9425-2</doi><tpages>9</tpages></addata></record> |
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subjects | Attachment Bad or surprising news Biomedical and Life Sciences Biomedicine Bonding Children Clinical Psychology Commons dilemma Cross-Cultural Comparison Disability Down Syndrome - psychology Down's syndrome Ethics Female Gynecology Hispanic Hispanic Americans Human Genetics Humans Latin American people Mothers Mothers - psychology Multicultural counseling News Original Research Public Health Qualitative research Thematic networks |
title | Breaking Difficult News in a Cross-cultural Setting: a Qualitative Study about Latina Mothers of Children with Down Syndrome |
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