Telling the Truth about Turner Syndrome: Disclosure of a diagnosis and infertility to a romantic partner

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dc.contributor.advisor Schneider, Gretchen Carroll, Niri 2015-05-18T18:50:16Z 2015-05-18T18:50:16Z 2015
dc.description.abstract Turner syndrome (TS) is a sex chromosome abnormality causing a variety of physical features, renal and cardiac defects, and infertility. TS occurs when one sex chromosome is partially or completely lost, resulting in a karyotype of 45,X, in true or mosaic form, in most affected females. Research has shown that women with TS often struggle with low self-esteem and have trouble forming social and romantic relationships. In addition, studies have identified infertility as the primary concern for these women, no matter their age. Little research however, has looked at the process and outcomes of disclosure of TS and infertility by these women, and research specifically on discussions with romantic partners is lacking. We created a qualitative study exploring the experiences of women with TS who disclosed their syndrome and infertility to romantic partners. This study involved semi-structured in-depth interviews with 10 women that focused on feelings about life with TS and infertility, disclosure to romantic partners and advice for other women. Our participants ranged in age from 23-38 years, and the number of partners they had ranged from one-10. We transcribed the interviews and subjected them to thematic analysis, which identified common themes among participants. We found that participants who were more confident and accepting of TS had more positive experiences with disclosure to partners. Often, a strong sense of self originated from having supportive parents. Participants also felt that there is a benefit of being in control of the disclosure conversation, and that disclosure to romantic partners presents unique challenges. Most participants had positive attitudes about TS, and appreciated the opportunity to share their experiences and offer advice to others with TS. This advice included seeking guidance from women who have disclosed to partners, disclosing in a comfortable manner, being proud of yourself, and creating a strong support network. Based on our participants’ experiences and advice, we hope to create a resource that health professionals, including genetic counselors, can share with other women with TS, to help them feel confident regarding disclosure.
dc.description.sponsorship Brandeis University, Graduate School of Arts and Sciences
dc.format.mimetype application/pdf
dc.language English
dc.language.iso eng
dc.publisher Brandeis University
dc.relation.ispartofseries Brandeis University Theses and Dissertations
dc.rights Copyright by Niri Carroll 2015
dc.subject Turner syndrome
dc.subject infertility
dc.subject disclosure
dc.subject romantic partners
dc.subject genetic counseling
dc.subject self-esteem
dc.subject advice
dc.title Telling the Truth about Turner Syndrome: Disclosure of a diagnosis and infertility to a romantic partner
dc.type Thesis
dc.contributor.department Graduate Program in Genetic Counseling MS Masters Genetic Counseling Brandeis University, Graduate School of Arts and Sciences

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