Whose responsibility is it to talk with children and young people about intersex/differences in sex development? Young people’s, caregivers’ and health professionals’ perspectives

Introduction: Over the past two decades, there has been a shift from concealing diagnoses of sex development from impacted people to the broad principle of age-appropriate disclosure. This change is consistent with children’s rights and with general shifts towards giving children medical information and involving patients in medical decision-making. The present paper examines how health professionals, young people and caregivers with experience in this area talk about the process of telling children about a diagnosis relating to sex development. The focus is on (i) who is given the role of talking with children and young people about their medical condition and care in the context of a diagnosis relating to sex development and (ii) what strategies seem to work, and what dilemmas are encountered, in engaging children and young people in talk about their condition and healthcare. Method: Qualitative semi-structured interviews were carried out with 32 health professionals, 28 caregivers and 12 young persons recruited in the UK and Sweden, and thematic analysis was undertaken. Results: The analysis identifies strategies and dilemmas in communication and a widespread assumption that it is caregivers’ responsibility to talk with children/young people about the diagnosis. This assumption creates difficulties for all three parties. This paper raises concern about children/young people who, despite a more patient-centred care ethos, are nevertheless growing up with limited opportunities to learn to talk about intersex or differences in sex development with confidence. Discussion: Learning to talk about this topic is one step towards shared decision-making in healthcare. A case is made for services to take clearer responsibility for developing a protocol for educating children and young people in ways that involve caregivers. Such a process would include relevant medical information as well as opportunities to explore preferred language and meaning and address concerns of living well with bodily differences

Whose responsibility is it to talk with children and young people about intersex/differences in sex development? Young people’s, caregivers’ and health professionals’ perspectives

IntroductionOver the past two decades, there has been a shift from concealing diagnoses of sex development from impacted people to the broad principle of age-appropriate disclosure. This change is consistent with children’s rights and with general shifts towards giving children medical information and involving patients in medical decision-making. The present paper examines how health professionals, young people and caregivers with experience in this area talk about the process of telling children about a diagnosis relating to sex development. The focus is on (i) who is given the role of talking with children and young people about their medical condition and care in the context of a diagnosis relating to sex development and (ii) what strategies seem to work, and what dilemmas are encountered, in engaging children and young people in talk about their condition and healthcare.MethodQualitative semi-structured interviews were carried out with 32 health professionals, 28 caregivers and 12 young persons recruited in the UK and Sweden, and thematic analysis was undertaken.ResultsThe analysis identifies strategies and dilemmas in communication and a widespread assumption that it is caregivers’ responsibility to talk with children/young people about the diagnosis. This assumption creates difficulties for all three parties. This paper raises concern about children/young people who, despite a more patient-centred care ethos, are nevertheless growing up with limited opportunities to learn to talk about intersex or differences in sex development with confidence.DiscussionLearning to talk about this topic is one step towards shared decision-making in healthcare. A case is made for services to take clearer responsibility for developing a protocol for educating children and young people in ways that involve caregivers. Such a process would include relevant medical information as well as opportunities to explore preferred language and meaning and address concerns of living well with bodily differences

Clitoral surgery on minors: an interview study with clinical experts of differences of sex development

Objectives: Clitoral surgery on minors diagnosed with differences of sex development is increasingly positioned as a violation of human rights. This qualitative study identified how health professionals (HPs) navigate the contentious issues as they offer care to affected families. Design: Qualitative analysis of audio-recorded semistructured interviews with HPs. All of the interviews were transcribed verbatim for theoretical thematic analysis. Setting: Twelve specialist multidisciplinary care centres for children, adolescents and adults diagnosed with a genetic condition associated with differences of sex development. Participants: Thirty-two medical, surgical, psychological and nursing professionals and clinical scientists in 12 specialist centres in Britain and Sweden formed the interview sample. Results: All interviewees were aware of the controversial nature of clitoral surgery and perceived themselves and their teams as non-interventionist compared with other teams. Data analyses highlighted four strategies that the interviewees used to navigate their complex tasks: (1) engaging with new thinking, (2) holding on to historical assumptions, (3) reducing the burden of dilemmas and (4) being flexible. In response to recent reports and debates that challenge clitoral surgery on minors, HPs had revised some of their opinions. However, they struggled to reconcile their new knowledge with the incumbent norms in favour of intervention as they counsel care users with variable reactions and expectations. The flexible approach taken may reflect compromise, but the interviewees were often trapped by the contradictory values and assumptions. Conclusions: If the pathology-based vocabularies and narratives about genital diversity could be modified, and normative assumptions are questioned more often, clinicians may be more adept at integrating their new knowledge into a more coherent model of care to address the psychosocial concerns that genital surgery purports to overcome

Drawing the Line Between Essential and Nonessential Interventions on Intersex Characteristics With European Health Care Professionals

Human rights statements on intersex characteristics distinguish legitimate “medically necessary” interventions from illegitimate normalizing ones. Ironically, this binary classification seems partially grounded in knowledge of anatomy and medical interventions; the very expertise that human rights statements challenge. Here, 23 European health professionals from specialist “disorder of sex development” (DSD) multidisciplinary teams located medical interventions on a continuum ranging from “medically essential” to nonessential poles. They explained their answers. Participants mostly described interventions on penile/scrotal, clitoral/labial, vaginal, and gonadal anatomy whose essential character was only partially grounded in anatomical variation and diagnoses. To explain what was medically necessary, health care professionals drew on lay understandings of child development, parental distress, collective opposition to medicalization, patients “coping” abilities, and patients’ own choices. Concepts of “medical necessity” were grounded in a hybrid ontology of patients with intersex traits as both physical bodies and as phenomenological subjects. Challenges to medical expertise on human rights grounds are well warranted but presume a bounded and well-grounded category of “medically necessary” intervention that is discursively flexible. Psychologists’ long-standing neglect of people with intersex characteristics, and the marginalization of clinical psychologists in DSD teams, may contribute to the construction of some controversial interventions as medically necessary

Zuordnungen in Bewegung : Geschlecht und sexuelle Orientierung quer durch die Disziplinen

Durch aktuelle gesellschaftspolitische und rechtliche Debatten um geschlechtliche und sexuelle Vielfalt ist einiges in Bewegung geraten: Tradierte (Zu-)Ordnungen von Geschlecht sind durchlässiger geworden, strikte Regulierungen von Sexualität(en) sind aufgebrochen. Soziale Wirklichkeiten scheinen nun pluralisiert und neue Chancen für selbstbestimmte Lebens­weisen eröffnet. Zugleich haben institutionalisierte Vorstellungen von binären Ge­schlech­terdifferenzen und von Heterosexualität Spuren hinterlassen, die als ‚Einschreibungen’ der sozialen Verhältnisse weiter existieren. Der vorliegende Band ist das Ergebnis interdisziplinärer Reflexionen in den Sozial- und Geisteswissenschaften. Die Beiträge geben einen Einblick in unterschiedliche disziplinäre Perspektiven auf Gender- und Sexualitäts(zu)ordnungen. Sie spannen die Breite der For­schungsfelder mit ihrem jeweiligen Bezug zu Alltagspraktiken auf; vor dem Hintergrund der Fachkulturen und wissenschaftlichen Entwicklungen beleuchten sie begriffliche Konzepte, Fragestellungen sowie Arbeitsweisen und reflektieren vor allem auch die Gleichzeitigkeit von Kontinuität, Wandel und neuen Normierungsprozessen.Der vorliegende Band ist das Ergebnis interdisziplinärer Reflexionen in den Sozial- und Geisteswissenschaften. Die Beiträge geben einen Einblick in unterschiedliche disziplinäre Perspektiven auf Gender- und Sexualitäts(zu)ordnungen. Sie spannen die Breite der For­schungsfelder mit ihrem jeweiligen Bezug zu Alltagspraktiken auf; vor dem Hintergrund der Fachkulturen und wissenschaftlichen Entwicklungen beleuchten sie begriffliche Konzepte, Fragestellungen sowie Arbeitsweisen und reflektieren vor allem auch die Gleichzeitigkeit von Kontinuität, Wandel und neuen Normierungsprozesse

Författare och ölitteratur

Författare och ölitteratur – Innehållsförteckning: – Ett bobart själslandskap / Pia Prost – Tove Jansson och ön / Mia Österlund – Öar som litteraturens skådeplats / Sophia Lundström – Litteraturföreningarna längs kusten – Fortsättningen på Hemsöborna / Christian Pleijel – I en nyländsk skärgårdshylla / Thure Malmberg – Sjömansgossens lilla, lilla vän snyter ungar och rensar stuprör / Karin Erlandsson – Antologin Kvarken i ord och bild / Peter Björkman – Litteraturstigen sätter den åboländska fiktionen på kartan / Tove Hagström – Remigare necesse est – Ro är nödvändigt på Skärgårdshavet / Nalle Valtiala – Mitt Pellinge / Erika Englund – Historien om julgäddan från Korpo / Pia Prost – Sommarlivet på Röysö i bokform / Thomas Rosenberg – Praktverk avslöjar havets hemligheter / Cecilia Lundberg – På tur i det österbottniska havsbandet / Cecilia Lundberg – Skärinytt – Sista bilde