The Impact of Living with Klinefelter Syndrome: A Qualitative Exploration of Adolescents and Adults.
Klinefelter syndrome (XXY) is a common yet significantly underdiagnosed condition with considerable medical, psychological and social implications. Many health care providers lack familiarity with XXY, resulting in medical management challenges and a limited understanding of the personal impact of t...
| Publicado en: | Journal of Genetic Counseling Vol. 26; no. 4; pp. 728 - 738 |
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| Autores principales: | , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Aug2017
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=123992111&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 123992111 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Aug2017 vid: 26 iid: 4 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 123992111 123992111 123992111 10.1007/s10897-016-0041-z 123992111 ppf: 728 ppct: 10 formats: fmt: @attributes: type: P tig: atl: The Impact of Living with Klinefelter Syndrome: A Qualitative Exploration of Adolescents and Adults. aug: au: Turriff, Amy Macnamara, Ellen Levy, Howard Biesecker, Barbara affil: Ophthalmic Genetics & Visual Function Branch, National Eye Institute , National Institutes of Health , 10 Center Drive MSC 1860, Building 10, Room 10N226 Bethesda 20892 USA sug: subj: Klinefelter's Syndrome In Adolescence Klinefelter's Syndrome In Adulthood Human Adolescence Adult Qualitative Studies Psychosocial Aspects of Illness Genetic Counseling Surveys Thematic Analysis Adolescent: 13-18 years Adult: 19-44 years ab: Klinefelter syndrome (XXY) is a common yet significantly underdiagnosed condition with considerable medical, psychological and social implications. Many health care providers lack familiarity with XXY, resulting in medical management challenges and a limited understanding of the personal impact of the condition. Genetic counselors benefit from understanding the challenges adolescents and men with XXY face to effectively address their medical and psychosocial needs. The purpose of this study was to understand the impact of living with XXY as an adolescent or an adult. Individuals aged 14 to 75 years with self-reported XXY were recruited from online support networks to complete a web-based survey that included open-ended questions. Open-ended responses were coded and analyzed thematically ( n = 169 to 210 for each open-ended question). Over half of respondents to the open-ended questions reported challenges in finding health care providers who are knowledgeable about XXY, with many describing an extensive diagnostic odyssey and relief when receiving a diagnosis. Individuals sought support coping with the challenges they face and acknowledgement of the positive aspects of XXY. Recommendations are made for how genetic counseling can enhance quality of life for individuals living with XXY. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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