Shaping parents, shaping penises: How medical teams frame parents’ decisions in response to hypospadias

Roen, Katrina; Hegarty, Peter

doi:10.1111/bjhp.12333

Cited by 27 publications

(19 citation statements)

References 34 publications

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“…First, this study is one of very few to respond to Liao & Simmonds’ () call for studies of public understanding of intersex, and it extends findings that medical and psychosocial frames affect the perceived harms and benefits of medical intervention on intersex traits (Roen & Hegarty, ; Streuli et al, ). Within a medical framing, medical harms may make sense as a “necessary evil” that seem to co‐occur with interventions aimed at concealing or minimizing intersex traits.…”

Section: Discussionsupporting

confidence: 53%

“…Stigma reduction in this area might require unlearning these taken‐for‐granted assumptions about gender categories (Garfinkel, ). In practice, DSD clinicians often continue to frame health and well‐being for parents who find themselves challenged by decisions about medical interventions in ways that reproduce those gender binary beliefs (Roen et al, ; Roen & Hegarty, ). Incorporating greater awareness about non‐binary genders into medical education for clinicians who work in this area may address clinicians’ gender binary beliefs and judgments about the necessity for medical intervention.…”

Section: Discussionmentioning

confidence: 99%

“…Most chose surgery in the former condition, but most rejected it in the latter condition (Streuli, Vayena, Cavicchia‐Balmer, & Huber, ). Qualitative research continues to demonstrate that healthcare providers can inadvertently frame medical interventions as more essential than they actually are by implicitly invoking social norms about sexuality and gender in constructing medical harms and benefits (see e.g., Roen, Creighton, Hegarty, & Liao, ; Roen & Hegarty, for recent U.K. studies).…”

Section: Introductionmentioning

confidence: 99%

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Stigma as framed onYouTube: Effects of personal experiences videos on students’ beliefs about medicalizing intersex

Hegarty

Smith

Bogan‐Carey

2019

J Applied Social Pyschol

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People with physical intersex characteristics can be subject to medical interventions that risk human rights to bodily integrity and self‐determination. Proponents and opponents of medicalization use personal narrative videos on YouTube to frame intersex as a stigma best understood through a medical or social identity frame. Ninety‐nine psychology students watched one of two YouTube videos with either a medical or social identity frame, or participated in a comparison group who watched no video. Participants extracted the videos’ medical or social identity framing in their own words. The social identity video increased participants’ sense that medicine was more harmful and less beneficial, and the medical video decreased participants’ sense that medicine was harmful. Although the videos aimed at bringing about social understanding of intersex people, neither video impacted stigmatizing beliefs about intersex people as a group. Rather, effects of the videos on beliefs about harms of medicalization were moderated by two stigma measures; social distance and gender binary beliefs. Medical intervention on intersex has been justified, in part, on grounds that stigma is inevitable. While intersex stigma has rarely been empirically examined, the present study shows that people with less propensity to stigmatize see less benefit from medicalizing intersex traits and are more open to learning few framings from personal experience videos.

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Section: Discussionsupporting

confidence: 53%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Stigma as framed onYouTube: Effects of personal experiences videos on students’ beliefs about medicalizing intersex

Hegarty

Smith

Bogan‐Carey

2019

J Applied Social Pyschol

Self Cite

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“…In male newborns with severe hypospadias, urological surgery is certainly indicated for functional repair (80). Although a recent review (81) found that 80% of men are satisfied with childhood hypospadias repair, it is advisable to refrain from invasive surgery that is not essential for health and to encourage patient participation and decisions in the choices regarding the sexual sphere (82).…”

Section: Surgical Treatmentmentioning

confidence: 99%

Congenital Adrenal Hyperplasias Presenting in the Newborn and Young Infant

et al. 2020

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Congenital adrenal hyperplasia includes autosomal recessive conditions that affect the adrenal cortex steroidogenic enzymes (cholesterol side-chain cleavage enzyme; 3β-hydroxysteroid dehydrogenase; 17α-hydroxylase/17,20 lyase; P450 oxidoreductase; 21-hydroxylase; and 11β-hydroxylase) and proteins (steroidogenic acute regulatory protein). These are located within the three major pathways of the steroidogenic apparatus involved in the production of mineralocorticoids, glucocorticoids, and androgens. Many countries have introduced newborn screening program (NSP) based on 17-OH-progesterone (17-OHP) immunoassays on dried blood spots, which enable faster diagnosis and treatment of the most severe forms of 21-hydroxylase deficiency (21-OHD). However, in several others, the use of this diagnostic tool has not yet been implemented and clinical diagnosis remains challenging, especially for males. Furthermore, less severe classic forms of 21-OHD and other rarer types of CAHs are not identified by NSP. The aim of this mini review is to highlight both the main clinical characteristics and therapeutic options of these conditions, which may be useful for a differential diagnosis in the neonatal period, while contributing to the biochemical evolution taking place in the steroidogenic field. Currently, chromatographic techniques coupled with tandem mass spectrometry are gaining attention due to an increase in the reliability of the test results of NPS for detecting 21-OHD. Furthermore, the possibility of identifying CAH patients that are not affected by 21-OHD but presenting elevated levels of 17-OHP by NSP and the opportunity to include the recently investigated 11-oxygenated androgens in the steroid profiles are promising tools for a more precise diagnosis and monitoring of some of these conditions.

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“…57 More critical approaches highlight that the effect of framing is often underestimated by medical professionals and that, in favour of their child, nonmedical pathways can also be opened up for parents who have sons with hypospadias. 58 The issue of hypospadias illustrates the problem of knowledge gaps that is so relevant in the more "classical" dsd conditions, such as CAIS, too.…”

Section: Issues Associated With the Most Difficulty And Uncertainty Imentioning

confidence: 99%

Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent

2020

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Introduction: Diverse sex development (dsd) is an umbrella term for different congenital conditions with incongruence of chromosomal, gonadal, and phenotypic sex characteristics. These are accompanied by various uncertainties concerning health-related, medical, psychosocial, and legal issues that raise controversial discussion. Aim: The aim of this exploratory study was to investigate 3 questions: What are the most controversial and disputed issues in the context of intersex/dsd? Which issues are associated with the biggest knowledge gaps? Which issues involve the greatest difficulty or uncertainty in decision-making? A further aim was to investigate whether the group of persons concerned, the parents of intersex children, and the group of experts in the field had differing views regarding these questions. Methods: A self-developed questionnaire was distributed among persons concerned, parents of children with intersex/dsd, and experts in the field. It contained open and multiple-choice questions. The answers from 29 participants were entered into data analysis. A mixed-method approach was applied. Quantitative data were analysed descriptively. Qualitative data were analysed according to the principles of qualitative content analysis. Main Outcome Measure: Participants answered questions on the most controversial and disputed issues, issues associated with the biggest knowledge gaps, and issues associated with the most difficulty or uncertainty in decision-making. Results: The findings indicate that controversial issues and uncertainties mainly revolve around surgical interventions but also around the question of how to adequately consider the consent of minors and how to deal with intersex in the family. Significant differences were found between persons concerned and parents vs academic experts in the field regarding the perceptions of procedure of diagnostic investigation and/or treatment in adulthood, on legal questions concerning marriage/registered civil partnerships, and on lack of psychosocial counseling close to place of residence. Conclusion: The necessity of irreversible gonadal and genital surgery in early childhood is still a matter of strong controversy. To ensure the improvement in well-being of intersex persons, including a sexual health perspective, the positive acceptance of bodily variance is an important prerequisite. Psychosocial support regarding one-time decisions as well as ongoing and changing issues of everyday life appears to be an important means in reaching overall quality of life. Lampalzer U, Briken P, Schweizer K. Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent-A Pilot Study. Sex Med 2020;8:472e489.

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Shaping parents, shaping penises: How medical teams frame parents’ decisions in response to hypospadias

Cited by 27 publications

References 34 publications

Stigma as framed onYouTube: Effects of personal experiences videos on students’ beliefs about medicalizing intersex

Stigma as framed onYouTube: Effects of personal experiences videos on students’ beliefs about medicalizing intersex

Congenital Adrenal Hyperplasias Presenting in the Newborn and Young Infant

Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent

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