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

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

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

Marital status and gender differences as key determinants of COVID-19 impact on well-being, job satisfaction and resilience in health care workers and staff working in academia in the UK during the first wave of the pandemic

BACKGROUND: The COVID-19 pandemic is an unprecedented global public health crisis that continues to exert immense pressure on healthcare and related professional staff and services. The impact on staff wellbeing is likely to be influenced by a combination of modifiable and non-modifiable factors. OBJECTIVES: The aim of this study is to evaluate the effect of the COVID-19 pandemic on the self-reported wellbeing, resilience, and job satisfaction of National Health Service (NHS) and university staff working in the field of healthcare and medical research. METHODS: We conducted a cross sectional survey of NHS and UK university staff throughout the COVID-19 pandemic between May-November 2020. The anonymous and voluntary survey was disseminated through social media platforms, and via e-mail to members of professional and medical bodies. The data was analysed using descriptive and regression (R) statistics. RESULTS: The enjoyment of work and satisfaction outside of work was significantly negatively impacted by the COVID-19 pandemic for all of staff groups independent of other variables. Furthermore, married women reporting significantly lower well-being than married men (P=0.028). Additionally, the well-being of single females was significantly lower than both married women and men (P=0.017 and P<0.0001, respectively). Gender differences were also found in satisfaction outside of work, with women reporting higher satisfaction than men before the COVID-19 pandemic (P=0.0002). CONCLUSION: Our study confirms that the enjoyment of work and general satisfaction of staff members has been significantly affected by the first wave of the COVID-19 pandemic. Interestingly, being married appears to be a protective factor for wellbeing and resilience but the effect may be reversed for life satisfaction outside work. Our survey highlights the critical need for further research to examine gender differences using a wider range of methods

Requests for cosmetic genitoplasty: how should healthcare providers respond?

Demand for cosmetic genitoplasty is increasing. Lih Mei Liao and Sarah M Creighton argue that surgery carries risks and that alternative solutions to women's concerns about the appearance of their genitals should be develope

A brief interactive training for health care professionals working with people affected by “female genital mutilation”: initial pilot evaluation with psychosexual therapists

The aim of the study was to evaluate a 90-minute professional training and education workshop on working with women affected by “female genital mutilation” (FGM). Forty-nine psychosexual therapists attended the workshop and completed the same questionnaire eliciting FGM knowledge and attitudes at the beginning and end of the workshop. Pre- and post-differences in responses to the questionnaire were taken to be the effect of the workshop intervention. Participant satisfaction was independently obtained by the conference organisers. Participants' knowledge of FGM improved significantly following the workshop. Post-workshop, more participants were able to identify the year FGM was made illegal (X2 (5, N = 97) = 32.36, p N = 97) = 29.10, p 2 (6, N = 97) = 29.10, p t = 4.6, p t = 2.9, p = 0.004). Regarding shifts in attitude following the intervention, the participants expressed greater disagreement with circumcision on consenting adult males (U = 806.5, p = 0.046 (one-tailed), r = 0.18). This suggests that a 90-minute interactive group workshop could be highly acceptable to recipients and enhance knowledge about FGM