Use this URL to cite or link to this record in EThOS: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.818757
Title: An exploration of disclosure and psychological outcomes in individuals with Turner Syndrome
Author: Nisbet, Mhairi
ISNI:       0000 0004 9355 9574
Awarding Body: University of Glasgow
Current Institution: University of Glasgow
Date of Award: 2020
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Abstract:
Objectives Previous literature exploring diagnostic disclosure in girls with Turner Syndrome (TS) is limited and has not yet examined how girls feel about disclosing their condition to others. Moreover, research conducted from the joint perspectives of girls and their parents is lacking. The primary aim of this study was to explore the experiences of diagnostic disclosure and disclosure to others in adolescent girls with TS and their parents/guardians. The secondary aim was to examine the impact of TS on girls and on their family’s lives. Design A qualitative method utilising Interpretative Phenomenological Analysis (IPA) was employed within this study. Methods Five girls with TS and one parent/guardian of each girl completed dyadic and individual semi-structured interviews. Interviews were audio recorded and analysed verbatim. Data were analysed in accordance with IPA guidelines, with a focus on the dynamic interactions within dyads. Results Analysis identified three superordinate themes across the ten participants’ accounts: (i) Communication and Support, (ii) Stigmatisation of TS and (iii) Psychological Consequences. Eleven related sub-themes are described alongside relevant quotations. Conclusions The present findings provide insight into the lived experience of receiving a diagnosis of TS, highlighting a desire from both girls and their parents to conceal TS from others and demonstrating the varying impact TS can have within families. These insights provide potential recommendations for both clinicians and parents, such as ensuring direct conversations about infertility occur within treatment and facilitating open, honest communication. Future research exploring barriers around disclosure to others may enable girls and their families to facilitate this conversation.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (D.Clin.Psy.) Qualification Level: Doctoral
EThOS ID: uk.bl.ethos.818757  DOI: Not available
Keywords: BF Psychology
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