Attitudes of Mothers of Children with Down Syndrome Towards Noninvasive Prenatal Testing
Noninvasive prenatal testing (NIPT) allows for highly sensitive detection of Down syndrome early in pregnancy with no risk of miscarriage, therefore potentially increasing the number of pregnancies identified with Down syndrome. This study assesses how mothers of children with Down syndrome perceive...
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| Veröffentlicht in: | Journal of genetic counseling 2014-10, Vol.23 (5), p.805-813 |
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| creator | Kellogg, Gregory Slattery, Leah Hudgins, Louanne Ormond, Kelly |
| description | Noninvasive prenatal testing (NIPT) allows for highly sensitive detection of Down syndrome early in pregnancy with no risk of miscarriage, therefore potentially increasing the number of pregnancies identified with Down syndrome. This study assesses how mothers of children with Down syndrome perceive NIPT, especially the impact they think it will have on their families and other families with children who have Down syndrome. Seventy-three self-reported mothers of children with Down syndrome responded to an anonymous online survey emailed to, and posted on, message boards of various Down syndrome support groups and networks. Data analysis included chi-square tests and thematic analysis. Fifty-nine percent of respondents indicated they would use NIPT in the future; respondents who had not used prenatal testing in the past were significantly less likely to report interest in using NIPT in the future than those who had prenatal testing previously (
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| doi_str_mv | 10.1007/s10897-014-9694-7 |
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p
< .001). Many respondents felt NIPT could lead to increased terminations (88 %), increased social stigma (57 %), and decreased availability of services for individuals with Down syndrome (64 %). However, only 16 % believed availability of new noninvasive tests would be the most important factor in determining the number of pregnancies with Down syndrome terminated in the future. Additionally, 48 % believed health care providers give biased or incorrect information about Down syndrome at the time of diagnosis, and 24 % felt this incorrect information leads to terminations of pregnancies affected with Down syndrome. Results suggest although mothers of children with Down syndrome believe new noninvasive testing will lead to an increase in termination of pregnancies with Down syndrome, they do not think it is the MOST important factor. They also highlight the need to provide a diagnosis of Down syndrome in a balanced and objective manner.</description><identifier>ISSN: 1059-7700</identifier><identifier>EISSN: 1573-3599</identifier><identifier>DOI: 10.1007/s10897-014-9694-7</identifier><identifier>PMID: 24481673</identifier><language>eng</language><publisher>New York: Springer US</publisher><subject>Adult ; Biomedicine ; Clinical Psychology ; Down syndrome ; Down Syndrome - diagnosis ; Down Syndrome - psychology ; Ethics ; Female ; Genetic testing ; Gynecology ; Human Genetics ; Humans ; Information provision ; Medical screening ; Middle Aged ; Mothers ; Mothers - psychology ; Noninvasive prenatal testing (NIPT) ; Original Research ; Parent attitudes ; Parent perceptions ; Pregnancy ; Prenatal Diagnosis ; Public Health ; Stakeholder views</subject><ispartof>Journal of genetic counseling, 2014-10, Vol.23 (5), p.805-813</ispartof><rights>National Society of Genetic Counselors, Inc. 2014</rights><rights>2014 National Society of Genetic Counselors, Inc.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c5845-1f53f667ca2eb538a2a78b0998666d1a3d6ceea8c1f1b5805f1a9ad315fefbdb3</citedby><cites>FETCH-LOGICAL-c5845-1f53f667ca2eb538a2a78b0998666d1a3d6ceea8c1f1b5805f1a9ad315fefbdb3</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/s10897-014-9694-7$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s10897-014-9694-7$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>230,314,780,784,885,1417,12846,27924,27925,30999,41488,42557,45574,45575,51319</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/24481673$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Kellogg, Gregory</creatorcontrib><creatorcontrib>Slattery, Leah</creatorcontrib><creatorcontrib>Hudgins, Louanne</creatorcontrib><creatorcontrib>Ormond, Kelly</creatorcontrib><title>Attitudes of Mothers of Children with Down Syndrome Towards Noninvasive Prenatal Testing</title><title>Journal of genetic counseling</title><addtitle>J Genet Counsel</addtitle><addtitle>J Genet Couns</addtitle><description>Noninvasive prenatal testing (NIPT) allows for highly sensitive detection of Down syndrome early in pregnancy with no risk of miscarriage, therefore potentially increasing the number of pregnancies identified with Down syndrome. This study assesses how mothers of children with Down syndrome perceive NIPT, especially the impact they think it will have on their families and other families with children who have Down syndrome. Seventy-three self-reported mothers of children with Down syndrome responded to an anonymous online survey emailed to, and posted on, message boards of various Down syndrome support groups and networks. Data analysis included chi-square tests and thematic analysis. Fifty-nine percent of respondents indicated they would use NIPT in the future; respondents who had not used prenatal testing in the past were significantly less likely to report interest in using NIPT in the future than those who had prenatal testing previously (
p
< .001). Many respondents felt NIPT could lead to increased terminations (88 %), increased social stigma (57 %), and decreased availability of services for individuals with Down syndrome (64 %). However, only 16 % believed availability of new noninvasive tests would be the most important factor in determining the number of pregnancies with Down syndrome terminated in the future. Additionally, 48 % believed health care providers give biased or incorrect information about Down syndrome at the time of diagnosis, and 24 % felt this incorrect information leads to terminations of pregnancies affected with Down syndrome. Results suggest although mothers of children with Down syndrome believe new noninvasive testing will lead to an increase in termination of pregnancies with Down syndrome, they do not think it is the MOST important factor. They also highlight the need to provide a diagnosis of Down syndrome in a balanced and objective manner.</description><subject>Adult</subject><subject>Biomedicine</subject><subject>Clinical Psychology</subject><subject>Down syndrome</subject><subject>Down Syndrome - diagnosis</subject><subject>Down Syndrome - psychology</subject><subject>Ethics</subject><subject>Female</subject><subject>Genetic testing</subject><subject>Gynecology</subject><subject>Human Genetics</subject><subject>Humans</subject><subject>Information provision</subject><subject>Medical screening</subject><subject>Middle Aged</subject><subject>Mothers</subject><subject>Mothers - psychology</subject><subject>Noninvasive prenatal testing (NIPT)</subject><subject>Original Research</subject><subject>Parent attitudes</subject><subject>Parent perceptions</subject><subject>Pregnancy</subject><subject>Prenatal Diagnosis</subject><subject>Public Health</subject><subject>Stakeholder views</subject><issn>1059-7700</issn><issn>1573-3599</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</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>eNqNkd1rFDEUxQdRbK3-Ab5IwBdfRnMnk68XoaxalfoBruBbyEyS3ZTZpE1mdtn_3mynliqIPuVCfudw7j1V9RTwS8CYv8qAheQ1hraWTLY1v1cdA-WkJlTK-2XGVNacY3xUPcr5AmMsBYWH1VHTtgIYJ8fVj9Nx9ONkbEbRoU9xXNt0PS7WfjDJBrTz4xq9ibuAvu2DSXFj0TLudDIZfY7Bh63OfmvR18LqUQ9oafPow-px9cDpIdsnN-9J9f3d2-XifX3-5ezD4vS87qloaQ2OEscY73VjO0qEbjQXHZZSMMYMaGJYb60WPTjoqMDUgZbaEKDOus505KR6PfteTt3Gmt6GMelBXSa_0Wmvovbq95_g12oVt6oFkFg2xeDFjUGKV1MJrzY-93YYdLBxygooY4JwLvH_oJgKyuGAPv8DvYhTCuUS1xQhTApZKJipPsWck3W3uQGrQ8VqrliVitWhYsWL5tndhW8VvzotAJ-BnR_s_t-O6uPZosXltEXZzMpcRGFl053Qf83zE4Owwwg</recordid><startdate>201410</startdate><enddate>201410</enddate><creator>Kellogg, Gregory</creator><creator>Slattery, Leah</creator><creator>Hudgins, Louanne</creator><creator>Ormond, Kelly</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><scope>5PM</scope></search><sort><creationdate>201410</creationdate><title>Attitudes of Mothers of Children with Down Syndrome Towards Noninvasive Prenatal Testing</title><author>Kellogg, Gregory ; Slattery, Leah ; Hudgins, Louanne ; Ormond, Kelly</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5845-1f53f667ca2eb538a2a78b0998666d1a3d6ceea8c1f1b5805f1a9ad315fefbdb3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><topic>Adult</topic><topic>Biomedicine</topic><topic>Clinical Psychology</topic><topic>Down syndrome</topic><topic>Down Syndrome - diagnosis</topic><topic>Down Syndrome - psychology</topic><topic>Ethics</topic><topic>Female</topic><topic>Genetic testing</topic><topic>Gynecology</topic><topic>Human Genetics</topic><topic>Humans</topic><topic>Information provision</topic><topic>Medical screening</topic><topic>Middle Aged</topic><topic>Mothers</topic><topic>Mothers - psychology</topic><topic>Noninvasive prenatal testing (NIPT)</topic><topic>Original Research</topic><topic>Parent attitudes</topic><topic>Parent perceptions</topic><topic>Pregnancy</topic><topic>Prenatal Diagnosis</topic><topic>Public Health</topic><topic>Stakeholder views</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Kellogg, Gregory</creatorcontrib><creatorcontrib>Slattery, Leah</creatorcontrib><creatorcontrib>Hudgins, Louanne</creatorcontrib><creatorcontrib>Ormond, Kelly</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><collection>PubMed Central (Full Participant titles)</collection><jtitle>Journal of genetic counseling</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Kellogg, Gregory</au><au>Slattery, Leah</au><au>Hudgins, Louanne</au><au>Ormond, Kelly</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Attitudes of Mothers of Children with Down Syndrome Towards Noninvasive Prenatal Testing</atitle><jtitle>Journal of genetic counseling</jtitle><stitle>J Genet Counsel</stitle><addtitle>J Genet Couns</addtitle><date>2014-10</date><risdate>2014</risdate><volume>23</volume><issue>5</issue><spage>805</spage><epage>813</epage><pages>805-813</pages><issn>1059-7700</issn><eissn>1573-3599</eissn><abstract>Noninvasive prenatal testing (NIPT) allows for highly sensitive detection of Down syndrome early in pregnancy with no risk of miscarriage, therefore potentially increasing the number of pregnancies identified with Down syndrome. 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p
< .001). Many respondents felt NIPT could lead to increased terminations (88 %), increased social stigma (57 %), and decreased availability of services for individuals with Down syndrome (64 %). However, only 16 % believed availability of new noninvasive tests would be the most important factor in determining the number of pregnancies with Down syndrome terminated in the future. Additionally, 48 % believed health care providers give biased or incorrect information about Down syndrome at the time of diagnosis, and 24 % felt this incorrect information leads to terminations of pregnancies affected with Down syndrome. Results suggest although mothers of children with Down syndrome believe new noninvasive testing will lead to an increase in termination of pregnancies with Down syndrome, they do not think it is the MOST important factor. They also highlight the need to provide a diagnosis of Down syndrome in a balanced and objective manner.</abstract><cop>New York</cop><pub>Springer US</pub><pmid>24481673</pmid><doi>10.1007/s10897-014-9694-7</doi><tpages>9</tpages><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
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| ispartof | Journal of genetic counseling, 2014-10, Vol.23 (5), p.805-813 |
| issn | 1059-7700 1573-3599 |
| language | eng |
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| source | MEDLINE; SpringerNature Journals; Access via Wiley Online Library; Applied Social Sciences Index & Abstracts (ASSIA) |
| subjects | Adult Biomedicine Clinical Psychology Down syndrome Down Syndrome - diagnosis Down Syndrome - psychology Ethics Female Genetic testing Gynecology Human Genetics Humans Information provision Medical screening Middle Aged Mothers Mothers - psychology Noninvasive prenatal testing (NIPT) Original Research Parent attitudes Parent perceptions Pregnancy Prenatal Diagnosis Public Health Stakeholder views |
| title | Attitudes of Mothers of Children with Down Syndrome Towards Noninvasive Prenatal Testing |
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