ArticleBritish journal of health psychology2022
A qualitative study utilizing Interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome.
Article in British journal of health psychology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.
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Who cites it
5 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.
- Clinical practice guidelines for the care of girls and women with Turner syndrome.European journal of endocrinology · 2024Guideline
- Large-Scale Combat Operation Education and Training Needs: Implications for Military and Civilian Medical Education.The western journal of emergency medicine · 2025Article
- Stigma in differences of sex development: a scoping review.Journal of pediatric psychology · 2025Article
- Interpretative phenomenological analysis and genetic counseling.Journal of genetic counseling · 2025Review
- Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo explore the experiences of diagnostic disclosure and disclosure to others in adolescents with Turner syndrome (TS) and their parents/guardians. In addition, we sought to examine the impact of TS on girls with TS and their family's lives.
designA qualitative method utilizing interpretative phenomenological analysis (IPA) was employed.
methodsFive 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.
resultsAnalyses identified three superordinate themes across the 10 participant accounts: communication and support, stigmatization of TS, and psychological consequences. Ten related subthemes are described alongside relevant quotations, highlighting a gradual process of diagnostic disclosure within families and wider health care systems. Both girls and their parents appeared to express a general desire to conceal TS from others, indicating possible TS-related stigma. The results also demonstrate the varying impact TS can have within families.
conclusionsThe findings provide insight into the lived experience of receiving a diagnosis of TS and the possible difficulties around disclosure to others. Potential recommendations for clinicians and parents include ensuring direct conversations about infertility occur within treatment and facilitating open, honest communication.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.