Medical decision-making competence regarding puberty suppression: perceptions of transgender adolescents, their parents and clinicians
European Child & Adolescent Psychiatry, vol. 32, pp. 2343–2361
Abstract
According to international transgender care guidelines, transgender adolescents should have medical decision-making competence (MDC) to start puberty suppression (PS) and halt endogenous pubertal development. However, MDC is a debated concept in adolescent transgender care and little is known about the transgender adolescents', their parents', and clinicians' perspectives on this. Increasing our understanding of these perspectives can improve transgender adolescent care. A qualitative interview study with adolescents attending two Dutch gender identity clinics (eight transgender adolescents who proceeded to gender-affirming hormones after PS, and six adolescents who discontinued PS) and 12 of their parents, and focus groups with ten clinicians was conducted. From thematic analysis, three themes emerged regarding transgender adolescents' MDC to start PS: (1) challenges when assessing MDC, (2) aspects that are considered when assessing MDC, and (3) MDC's relevance. The four criteria one needs to fulfill to have MDC-understanding, appreciating, reasoning, communicating a choice-were all, to a greater or lesser extent, mentioned by most participants, just as MDC being relative to a specific decision and context. Interestingly, most adolescents, parents and clinicians find understanding and appreciating PS and its consequences important for MDC. Nevertheless, most state that the adolescents did not fully understand and appreciate PS and its consequences, but were nonetheless able to decide about PS. Parents' support of their child was considered essential in the decision-making process. Clinicians find MDC difficult to assess and put into practice in a uniform way. Dissemination of knowledge about MDC to start PS would help to adequately support adolescents, parents and clinicians in the decision-making process.
Authors 7
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Lieke Josephina Jeanne Johanna Vrouenraets corresponding Aachen Department of Medical Ethics and Health Law Department of Medical Psychology
Leiden University Medical Center · Willem-Alexander Kinderziekenhuis
Affiliation as printed
Department of Medical Ethics and Health Law, Leiden University Medical Center, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands. l.j.j.j.vrouenraets@lumc.nl
Department of Medical Psychology, Willem Alexander Children's Hospital, Leiden University Medical Center, Leiden, The Netherlands. l.j.j.j.vrouenraets@lumc.nl
Department of Medical Psychology, Willem Alexander Children's Hospital, Leiden University Medical Center, Leiden, The Netherlands
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Emma Kinderziekenhuis · Amsterdam University Medical Centers · Amsterdam UMC Location Vrije Universiteit Amsterdam
Affiliation as printed
Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, Location VUmc, Amsterdam, The Netherlands
Department of Child and Adolescent Psychiatry, Emma Children's Hospital, Amsterdam University Medical Centers, Location VUmc, Amsterdam, The Netherlands
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Amsterdam University Medical Centers · Amsterdam UMC Location Vrije Universiteit Amsterdam
Affiliation as printed
Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, Location VUmc, Amsterdam, The Netherlands
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Leiden University Medical Center · Amsterdam University Medical Centers · Amsterdam UMC Location Vrije Universiteit Amsterdam
Affiliation as printed
Department of Paediatric Endocrinology, Amsterdam University Medical Centers, Location VUmc, Amsterdam, The Netherlands
Department of Paediatrics, Leiden University Medical Center, Leiden, The Netherlands
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Amsterdam UMC Location University of Amsterdam · Amsterdam University Medical Centers · Levvel · University of Amsterdam
Affiliation as printed
Department of Child and Adolescent Psychiatry, Amsterdam University Medical Centers, Location AMC, University of Amsterdam and Levvel, Amsterdam, The Netherlands
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Martine Charlotte de Vries Aachen Department of Medical Ethics and Health Law Department of Paediatrics, Leiden University Medical Center
Leiden University Medical Center
Affiliation as printed
Department of Medical Ethics and Health Law, Leiden University Medical Center, Albinusdreef 2, 2333 ZA, Leiden, The Netherlands
Department of Paediatrics, Leiden University Medical Center, Leiden, The Netherlands
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Amsterdam UMC Location University of Amsterdam · Amsterdam University Medical Centers · Levvel · University of Amsterdam
Affiliation as printed
Department of Child and Adolescent Psychiatry, Amsterdam University Medical Centers, Location AMC, University of Amsterdam and Levvel, Amsterdam, The Netherlands
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