Streams of fun and cringe: Talking about Snapchat as mediated affective practice

How do young people interpret and negotiate their sense of being affected in the context of social media use? Our study draws on recent theorizing that views affective practices as discursive, relational and imbued with power. We specifically address practices that users engage in as they pursue forms of digitally mediated emotional involvement when using Snapchat, an image-based social media application. Our data consist of focus group dialogues with Norwegian students aged 16–19, recruited from schools selected for socio-economic and multicultural diversity. Excerpts exemplify how Snapchat use is not only engagingly talked about, but also affects non-digital everyday interactions. The analysis illustrates how young people’s talk about Snapchat deploys various discursive objects that convey promises of happiness and well-being, and affords particular forms of subjectivity. Image-sharing practices, and how they are communicated and felt, are embedded in and reproduce social norms, yet also provide spaces of belonging.acceptedVersio

'Does anyone else have this?' The role of emotion in forum discussions about medical conditions affecting sex characteristics

When people experience rare medical conditions or variations, searching online may be the only way to find others with similar experiences. This study examines what happens when people do just that. The dataset for the research has been generated from online posts by people living with variations of sex characteristics, which some call intersex variations. Our analysis focuses on how emotion appears in online posts, how affect becomes embodied in digital contexts, and how norms are negotiated as people relate to one another about the variations that some of them experience. We offer an analysis grounded in digital affect theory to contribute to health research literature. We suggest how health researchers and healthcare providers might develop more nuanced understandings of the emotional realities of people living with variations of sex characteristics

Reproductive justice for children and young people with gonadal variations: Intersex, queer and crip perspectives

INTRODUCTION: This article draws on understandings from reproductive justice, crip and queer theories to discuss gonadectomy for children and young people with gonadal variations. Gonadectomy is sometimes performed on people with gonadal variations without their free and informed consent. Some parents report experiencing pressure to consent to such surgery when their children are young. We understand this to be an issue of reproductive justice. METHOD: Semi-structured interviews were conducted with parents of affected children and young people (n = 13). Thematic coding was used to identify data relating to gonads, ovaries, testes and gonadectomy. The data were analysed using discursive questions drawn from a reproductive justice framework. ANALYSIS: Parents’ talk about gonads suggests a process of sense-making that can be emotionally challenging. Our analysis situates their talk within broader societal discourses of ablebodiedness and the sex binary. Parents explained their choices and decisions by centring various understandings. Some explained how gonadectomy made sense for maintaining binary sex and following medical advice. Others emphasised the child’s consent and bodily autonomy. Our analysis draws out how parents’ decisions navigate reproductive justice and injustice. CONCLUSIONS: Dominant beliefs about ablebodiedness and the sex binary appear to influence and frame decision-making about the gonads of children and young people with variations in sex characteristics. A crip, queer, and reproductive justice lens allows us to expand understandin

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

31st Annual Meeting and Associated Programs of the Society for Immunotherapy of Cancer (SITC 2016) : part two

Background The immunological escape of tumors represents one of the main ob- stacles to the treatment of malignancies. The blockade of PD-1 or CTLA-4 receptors represented a milestone in the history of immunotherapy. However, immune checkpoint inhibitors seem to be effective in specific cohorts of patients. It has been proposed that their efficacy relies on the presence of an immunological response. Thus, we hypothesized that disruption of the PD-L1/PD-1 axis would synergize with our oncolytic vaccine platform PeptiCRAd. Methods We used murine B16OVA in vivo tumor models and flow cytometry analysis to investigate the immunological background. Results First, we found that high-burden B16OVA tumors were refractory to combination immunotherapy. However, with a more aggressive schedule, tumors with a lower burden were more susceptible to the combination of PeptiCRAd and PD-L1 blockade. The therapy signifi- cantly increased the median survival of mice (Fig. 7). Interestingly, the reduced growth of contralaterally injected B16F10 cells sug- gested the presence of a long lasting immunological memory also against non-targeted antigens. Concerning the functional state of tumor infiltrating lymphocytes (TILs), we found that all the immune therapies would enhance the percentage of activated (PD-1pos TIM- 3neg) T lymphocytes and reduce the amount of exhausted (PD-1pos TIM-3pos) cells compared to placebo. As expected, we found that PeptiCRAd monotherapy could increase the number of antigen spe- cific CD8+ T cells compared to other treatments. However, only the combination with PD-L1 blockade could significantly increase the ra- tio between activated and exhausted pentamer positive cells (p= 0.0058), suggesting that by disrupting the PD-1/PD-L1 axis we could decrease the amount of dysfunctional antigen specific T cells. We ob- served that the anatomical location deeply influenced the state of CD4+ and CD8+ T lymphocytes. In fact, TIM-3 expression was in- creased by 2 fold on TILs compared to splenic and lymphoid T cells. In the CD8+ compartment, the expression of PD-1 on the surface seemed to be restricted to the tumor micro-environment, while CD4 + T cells had a high expression of PD-1 also in lymphoid organs. Interestingly, we found that the levels of PD-1 were significantly higher on CD8+ T cells than on CD4+ T cells into the tumor micro- environment (p < 0.0001). Conclusions In conclusion, we demonstrated that the efficacy of immune check- point inhibitors might be strongly enhanced by their combination with cancer vaccines. PeptiCRAd was able to increase the number of antigen-specific T cells and PD-L1 blockade prevented their exhaus- tion, resulting in long-lasting immunological memory and increased median survival