An exploration of disclosure and psychological outcomes in individuals with Turner Syndrome.

Nisbet, Mhairi (2020) An exploration of disclosure and psychological outcomes in individuals with Turner Syndrome. D Clin Psy thesis, University of Glasgow.

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.

• Item Type: Thesis (D Clin Psy)
• Qualification Level: Doctoral
• Keywords: Turner Syndrome, Growth Hormone Treatment, Psychological Outcomes, Disclosure, Interpretative Phenomenological Analysis
• Subjects: B Philosophy. Psychology. Religion > BF Psychology
• Colleges/Schools: College of Social Sciences
• Supervisor's Name: O'Connor, Professor Rory
• Date of Award: 2020
• Depositing User: Ms Mhairi Nisbet
• Unique ID: glathesis:2020-81705
• Copyright: Copyright of this thesis is held by the author.
• Date Deposited: 09 Oct 2020 14:14
• Last Modified: 14 Sep 2022 10:50
• Thesis DOI: 10.5525/gla.thesis.81705
• URI: https://theses.gla.ac.uk/id/eprint/81705