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A qualitative study utilizing Interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome

OBJECTIVES: To 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. DESIGN: A qualitative method utilizing interpre...

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Autores principales: Nisbet, Mhairi, O’Connor, Rory, Mason, Avril, Hunter, Elizabeth
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9545481/
https://www.ncbi.nlm.nih.gov/pubmed/35156277
http://dx.doi.org/10.1111/bjhp.12586
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author Nisbet, Mhairi
O’Connor, Rory
Mason, Avril
Hunter, Elizabeth
author_facet Nisbet, Mhairi
O’Connor, Rory
Mason, Avril
Hunter, Elizabeth
author_sort Nisbet, Mhairi
collection PubMed
description OBJECTIVES: To 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. DESIGN: A qualitative method utilizing interpretative phenomenological analysis (IPA) was employed. 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: Analyses 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. CONCLUSIONS: The 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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spelling pubmed-95454812022-10-14 A qualitative study utilizing Interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome Nisbet, Mhairi O’Connor, Rory Mason, Avril Hunter, Elizabeth Br J Health Psychol Original Articles OBJECTIVES: To 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. DESIGN: A qualitative method utilizing interpretative phenomenological analysis (IPA) was employed. 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: Analyses 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. CONCLUSIONS: The 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. John Wiley and Sons Inc. 2022-02-14 2022-09 /pmc/articles/PMC9545481/ /pubmed/35156277 http://dx.doi.org/10.1111/bjhp.12586 Text en © 2022 The Authors. British Journal of Health Psychology published by John Wiley & Sons Ltd on behalf of British Psychological Society. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Original Articles
Nisbet, Mhairi
O’Connor, Rory
Mason, Avril
Hunter, Elizabeth
A qualitative study utilizing Interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome
title A qualitative study utilizing Interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome
title_full A qualitative study utilizing Interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome
title_fullStr A qualitative study utilizing Interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome
title_full_unstemmed A qualitative study utilizing Interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome
title_short A qualitative study utilizing Interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome
title_sort qualitative study utilizing interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9545481/
https://www.ncbi.nlm.nih.gov/pubmed/35156277
http://dx.doi.org/10.1111/bjhp.12586
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