Fear of devaluation: Understanding the experience of intersexed women with androgen insensitivity syndrome

Alderson, Julie; Madill, Anna; Balen, Adam

doi:10.1348/135910704322778740

Cited by 72 publications

(91 citation statements)

References 29 publications

(22 reference statements)

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“…5 If medical information were offered, it might have been incomplete, and absence of opportunities for discussion might have been common. [6][7][8][9] Personal 6,7 and professional 8,9 accounts documenting people's precarious fact-finding missions proliferate in professional and service-user literatures. Words like 'testes' and 'Y chromosome' may continue to be omitted by clinicians.…”

Section: Introductionmentioning

confidence: 99%

Service users’ experiences of obtaining and giving information about disorders of sex development

Green

Creighton

et al. 2009

BJOG

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Objective To quantify participants' experiences of obtaining and giving information about disorders of sex development (DSD).Design Cross-sectional survey study that asked people about their current and past experiences relating to DSD disclosure.Setting A large tertiary referral centre for DSD management in the UK.Population One hundred of 126 people with a confirmed diagnosis of DSD who were invited to participate in the study formed the usable sample.Methods All people who attended clinic for follow-up during the study period and members of a patient support group whose annual meeting fell within the study period were asked to complete the Middlesex Communication Survey.Main outcome measures The Middlesex Communication Survey.Results Younger participants were more likely to report having been appropriately informed about their diagnosis than older people. Nearly half of the former had been fully informed about their diagnosis by age 15 years, compared with 0% of the older age group. In terms of information sharing, mothers were most likely to be the person with whom the participant had shared (almost/all) DSD information (74%), followed by current partners (71%). Information relating to genital surgery, presence of testes and clitoral anomalies were the least likely aspects to have been unambiguously shared with even the most informed person.Conclusions Our results suggest that difficulties in obtaining DSD information from care providers were common, and that communication has improved for younger participants. The study also confirmed that many people with DSD continue to struggle with confiding, even in those closest to them, about aspects of their diagnosis. Care protocol needs to centralise psychological adaptation, which should also be a primary focus for future research.

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Section: Introductionmentioning

confidence: 99%

Service users’ experiences of obtaining and giving information about disorders of sex development

Green

Creighton

et al. 2009

BJOG

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“…Las preocupaciones psicológicas no se planteaban, en ningún caso, en la línea de un posible cuestionamiento de las intervenciones. Roen (2008) ha analizado las relaciones "resbaladizas entre la asignación quirúrgica del sexo y las consideraciones psicosociales": si bien la cirugía se propone -siguiendo a Money-para favorecer un desarrollo psicosexual adecuado (Woodhouse & Christie, 2005), los psicólogos intervienen ayudando a los afectados y a sus familiares en el afrontamiento de los efectos psicosociales de las cirugías (Alderson, Madill, & Balen, 2004). "Los 'temas' psicosociales son el primo pobre a las respuestas quirúrgicas" (Roen, 2008, p. 52).…”

Section: Lo Psicosocial En El Protocolo Clásico De Moneyunclassified

“…Consideramos importante, pues, que se tengan en cuenta los propios efectos iatrogénicos derivados de la investigación. Por objetividad y ética, defendemos el uso de metodologías que tiendan a la horizontalidad, como la investigación-acción participativa (Alderson, Madill, & Balen, 2004;Boyle, Smith, & Liao, 2005), que den agencia a las personas y no las sitúen como objetos de estudio. En el caso de menores de edad, abogamos por investigaciones que respeten la comprensión que ellos hacen de sí mismos y que no utilicen un lenguaje que patologice o etiquete de forma peyorativa sus conductas o "variantes" de género -respetando así, por otro lado, la normativa antidiscriminatoria de la Asociación Americana de Psicología (Ansara & Hegarty, 2012)-.…”

Section: Lo Psicosocial En Las Publicaciones Científicas Biomédicasunclassified

Usos de lo psicosocial en la investigación y tratamiento de las intersexualidades/DSD

2016

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r e S u m e N Desde el punto de vista médico, la 'ambigüedad sexual' en bebés recién nacidos ha sido catalogada como una urgencia psicosocial, que dispara un protocolo de diagnóstico e intervención -quirúrgica y hormonal-para "fijar" el sexo y "corregir" el cuerpo. Desde perspectivas sociales y críticas, se prefiere hablar de variabilidad sexual, es decir, de cuerpos sexuados que no encajan con las expectativas dualistas de lo que es considerado propio de un cuerpo de hombre o de un cuerpo de mujer, o en los que diferentes componentes del sexo -cromosómico, hormonal, gonadal o anatómico-no son coherentes. En las últimas décadas, ha surgido una fuerte controversia en torno a la intersexualidad y a la necesidad de cambiar no solo la gestión médica, sino también los modelos sociales y la representación de imaginarios dualistas. No obstante, parece existir una amplia brecha entre los contextos y lenguajes de la gestión médica y los propios de las movilizaciones políticas y de derechos humanos. Las reflexiones bioéticas, el papel de los grupos de apoyo y las posibles intervenciones psicosociales pueden abrir vías de actuación y puentes de diálogo y traducción entre estos espacios incomunicados. En ese sentido, este artículo pretende realizar un análisis de los significados, usos y prácticas de lo psicosocial en la investigación y tratamiento de las intersexualidades/DSD, para explorar hasta qué punto se está produciendo el llamado "giro psicosocial", o si seguimos en un paradigma de gestión predominantemente biomédico.Palabras clave psicosocial; psicología; intersexualidades; DSD a b S t r a c t From a medical point of view, "sexual ambiguity" in new born babies has been categorized as a psychosocial emergency, which sets in motion a diagnostic and interventional protocol -both surgical and hormonal-in order to "determine" the sex and "correct" the body. From social and critical perspectives, it's preferred to speak about sexual variability , that is, about sexed bodies that don't fit into the dualistic expectations of what is considered a suitable for a man's or a woman's body, or in which the different sex componentschromosomal, hormonal, gonadal, or anatomic-are not consistent. In the last decades a strong controversy around intersexuality and the need to change not only the medical management, but also the social models, and the representation of the dualistic collective imagination, has arisen. Nevertheless there seems to be a wide gap between the medical management

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“…Other women report that they "gained a better self-confidence and a new value as women" (Ekdal et al 2005). However, many adult patients with intersex syndromes state that their condition is unseen in society and is surrounded by shame and mystery-making (Hirseland 2003); that contact with medical services enhances feelings of uncertainty instead of facilitating understanding of the diagnosis (Holt & Slade 2003, Jürgensen et al 2006; and that medical professionals evade patients' requests for information (Alderson et al 2004).…”

Section: Intersex Cconditions and Aadult Ppatients' Eexperiences Of Smentioning

confidence: 99%

Why do ‘we’ perform surgery on newborn intersexed children?

Zeiler

Wickström

2009

Feminist Theory

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Few parents-to-be consider that their child may be born with ambiguous sex. Still, parents of a newborn child with ambiguous sex are expected to make a far-reaching decision for the child: should the child be operated upon so that it has either female or male genitals? The aim of this article is to examine, phenomenologically, why parents decide to have their children undergo genital surgery when it is not necessary for the child’s physiological functions. Drawing on phenomenological work by Maurice Merleau-Ponty, Simone de Beauvoir and Sara Ahmed, we examine parents’ frustration when their child’s sex is ambiguous and their experiences of the practice of medical sex assignment. We also examine parental identity work when the child has been assigned a sex and the interaction between parents and medical professionals when parents make decisions regarding surgery on their child. Furthermore, we provide a critical perspective on the surgical practice.

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Fear of devaluation: Understanding the experience of intersexed women with androgen insensitivity syndrome

Cited by 72 publications

References 29 publications

Service users’ experiences of obtaining and giving information about disorders of sex development

Service users’ experiences of obtaining and giving information about disorders of sex development

Usos de lo psicosocial en la investigación y tratamiento de las intersexualidades/DSD

Why do ‘we’ perform surgery on newborn intersexed children?

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