Hiperplasia adrenal congênita: estudo qualitativo sobre doença e tratamento, dúvidas, angústias e relacionamentos (parte I)

Telles-Silveira, Mariana; Tonetto-Fernandes, Vânia F.; Schiller, Paulo; Kater, Cláudio E.

doi:10.1590/s0004-27302009000900008

Cited by 8 publications

(10 citation statements)

References 14 publications

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“…Besides these consequences, we find those which are observed and emphasized in specialized DSD clinics, such as: communication difficulties among physician, patient and family, silence pact, apparent aloofness towards medical appointments, difficult adherence to or discontinuation of treatment, etc. (18).…”

Section: Clinical Effects Of This Modelmentioning

confidence: 99%

“…In addition, some articles also emphasize the need to include the child in the decision-making, and to adjust the medical terms to lay language (3,11,12,(16)(17)(18)22,35,(40)(41)(42)(43)(44)(45)(46)(47).…”

Section: The Chicago Consensusmentioning

confidence: 99%

“…The child's wellbeing and love should guide the treatment conducts, so that in the future the parents can tell their children why they made those decisions. This way, the partnership among teams and families should be the closest possible, bearing in mind that all of them are tending a central aspect of the child's personality -the development of sexuality and gender identity (12,18,34,48,(58)(59)(60)(61).…”

Section: Clinical Consequencesmentioning

confidence: 99%

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Management framework paradigms for disorders of sex development

Telles-Silveira

Knobloch

Kater

2015

Arch. Endocrinol. Metab.

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Until 2005, questions regarding medical treatment and diagnostic information on Disorders of Sex Development (DSD) were not systematically discussed with both the patients and their families; however, the way these patients are currently treated have been changing with time. Interventional changes in the clinical-psychotherapeutic-surgical areas of DSD determine not only different medical recommendations but also help to place the patient and the family into the decisional process of therapy. We must consider two paradigmatic periods that have influenced and transformed the clinical management framework of patients with DSD: a) The "Money era" (1955), which emphasized the role of the gonads as the diagnostic criterion, having the environment as determinant of the sex identity; and b) The Chicago Consensus (2005) phase, in which the role of genetics and molecular biology was critical for an early identification, as well as in building a proper sex identity, emphasizing ethical questions and the "stigma culture" . In addition, recent data have focused on the importance of interdisciplinarity and statements on questions concerning Human Rights as key factors in treatment decision making. Despite each of these management models being able to determine specific directions and recommendations regarding the clinical handling of these patients, we verify that a composite of these several models is the clinical routine nowadays. In the present paper, we discuss these several paradigms, and pinpoint clinical differences and their unfolding regarding management of DSD patients and their families. Arch Endocrinol Metab. 2015;59(5):383-90

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Section: Clinical Effects Of This Modelmentioning

confidence: 99%

Section: The Chicago Consensusmentioning

confidence: 99%

Section: Clinical Consequencesmentioning

confidence: 99%

See 1 more Smart Citation

Management framework paradigms for disorders of sex development

Telles-Silveira

Knobloch

Kater

2015

Arch. Endocrinol. Metab.

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“…A análise consistiu em interpretar os dados, levantar hipóteses e redefinir questões relevantes, conforme descrito detalhadamente em publicação anterior (11).…”

Section: Análise Dos Dadosunclassified

“…Desenho DA pesquIsA e metoDologIA sujeitos e procedimentos O presente estudo teve como referencial a metodologia qualitativa (15)(16)(17)(18)(19)(20)(21)(22), realizada a partir de um roteiro semiestruturado de entrevistas, conforme descrito em detalhes em publicação anterior (11).…”

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Hiperplasia adrenal congênita: estudo qualitativo sobre definição e redefinição sexual, cirurgia de dilatação e apoio psicológico (parte II)

Telles-Silveira

Tonetto-Fernandes

Schiller

et al. 2009

Arq Bras Endocrinol Metab

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ResumoObjetivo: Identificar questões relacionadas à definição e redesignação sexual e à cirurgia corretiva em pacientes com hiperplasia adrenal congênita (HAC) e compreender a inserção do psicólogo no seu atendimento. Métodos: Selecionaram-se 21 sujeitos: 7 especialistas de cinco instituições do Sistema Único de Saúde (SUS), 9 familiares e 6 pacientes com HAC, seguindose padrões da pesquisa qualitativa. Neste artigo, analisaram-se três das categorias estudadas: "definição e redesignação sexual" , "cirurgia e dilatação" e "psicologia" . Resultados: A situação de indefinição sexual é a que mais angustia os pais, enquanto a redesignação inquieta mais os médicos. A sensação de isolamento para lidar com a doença e tratamento foi comum nas pacientes; os procedimentos de dilatação foram sua principal queixa. Os médicos acham que a cirurgia deve ser feita com brevidade para evitar traumas posteriores. Conclusões: Diante de questões psicológicas complexas, chama a atenção o fato de que nem todo serviço de atendimento especializado conta com a presença de um psicólogo. Os exames de dilatação causam traumas nas pacientes. No grupo estudado, constataram-se dificuldades para lidar com as questões relacionadas à sexualidade. Arq Bras Endocrinol Metab. 2009;53(9):1125-36 Descritores Hiperplasia adrenal congênita; anomalias de diferenciação sexual; definição sexual; redesignação sexual; cirurgia reconstrutiva; psicologia; psicanálise AbstRAct Objective: To identify relevant questions related to sex definition and re-designation and reconstructive surgery in patients with congenital adrenal hyperplasia (CAH), and to understand the role of the psychologist in providing care for these patients. Methods: We selected 21 subjects: 7 pediatric endocrinologists from 5 Brazilian Public Health System institutions, 9 parents and 6 patients with CAH, according to a qualitative research model. In this paper, 3 of the studied categories are analyzed: "sex definition and re-designation" , "reconstructive surgery/ vaginal dilation" , and "psychology" . Results: Parents' main anguish relates to the situation of an unnamed sex at birth, whereas sex re-designation was distressful to physicians. A sense of loneliness when dealing with the disease and treatment was a common anguish among patients; dilation procedures were the major complaint. In general, physicians recommend that genital reconstructive surgery be performed early on to avoid future trauma. Conclusions: In such a complex scenario, it is remarkable that not all the reference service staff have a psychologist on duty. Difficulties to deal with questions involving sexuality were evident and dilation procedures are an additional source of trauma for these patients.

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Gender Dysphoria in a 62-Year-Old Genetic Female With Congenital Adrenal Hyperplasia

et al. 2016

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We report a case of gender dysphoria (GD) in a 62-year-old genetic female patient, raising the pros and cons of performing corrective surgery later in life. This 46,XX DSD patient was registered and reared as a girl; CAH was diagnosed late in childhood. Poor adherence to treatment and lack of proper psychological management contributed to evident GD. Living for years as a male, the patient applied for a legitimate male identification document in his late 50s; thereafter, he requested a sex-reassignment surgery "to disguise his female body upon his death." We informed the patient and family about surgery hazards, while analytical therapy allowed the group to evaluate the actual wish for surgery. When the wish was brought up, the role of death urged the group to rethink the course of treatment. During the process, it became clear that the patient's desire for surgery, more than a wish for changing the genitalia, expressed an impulse related to issues of endorsement and acceptance of his male identity. This report raises interesting questions about sexuality in a social context and prompts the idea that sexuality is broader than sex itself, raising new questions on the psychological risks faced when considering a body change after years of living with a disorder of sex development.

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Hiperplasia adrenal congênita: estudo qualitativo sobre doença e tratamento, dúvidas, angústias e relacionamentos (parte I)

Cited by 8 publications

References 14 publications

Management framework paradigms for disorders of sex development

Management framework paradigms for disorders of sex development

Hiperplasia adrenal congênita: estudo qualitativo sobre definição e redefinição sexual, cirurgia de dilatação e apoio psicológico (parte II)

Gender Dysphoria in a 62-Year-Old Genetic Female With Congenital Adrenal Hyperplasia

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