A relational approach to youth healthcare: Examining young people's, parents' and clinicians' experiences in the context of variations in sex characteristics.

According to popular understandings, children grow from a state of dependence to eventually become independent adults. Interdependence helps to disrupt the in/dependence binary and is a useful concept for making sense of the experiences young people with variations in sex characteristics in relation to healthcare. This study used semi-structured interviews with 32 health professionals, 33 caregivers and 12 young people recruited in the UK and Sweden. The analysis is guided by the questions: (1) how do young people, carers and health professionals position themselves in the adult/young person relationship in the context of healthcare? (2) how is the (in/ter)dependence of young people imagined when young people, carers and health professionals talk about healthcare? Our analysis shows how carers and health professionals might support dominant understandings about young people growing towards independence while providing little opportunity for young people's agency and voice. Interviews with young people gave clear examples of their negotiating relational ways of being, seeking agency in the context of healthcare and not simply becoming independent of adults. This analysis also draws attention to the ways young people might be silenced within healthcare contexts. The present paper is based on secondary analysis of data from the SENS. It works with concepts of relationality and interdependence to draw out the possibilities of voice and agency for young people with variations in sex characteristics in healthcare contexts.

Hypospadias surgery: understanding parental emotions, decisions and regrets.

This paper builds an argument about genital surgery in the context of medical treatment of children and young people with variations in sex characteristics. First, I set out what is known from existing research including psychological research, surgical follow-up studies and parental regret studies. Second, I present an analysis of surgeons' talk about children, young people and parents in relation to genital surgery. This paper focuses most specifically on hypospadias surgery, but the argumentation is relevant for other kinds of genital surgery carried out in the context of genital variations. The questions guiding this paper are: what research evidence supports hypospadias surgery and what research evidence brings this surgery into question? How might a new interpretation of the evidence, in light of psychosocial research and human rights concerns, contribute to a new perspective on elective genital surgery on minors with variations in sex characteristics? I draw out implications for clinicians supporting parents to decide whether a surgical pathway is the best option for their child.

'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.

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.

Intersex or Diverse Sex Development: Critical Review of Psychosocial Health Care Research and Indications for Practice.

Intersex or diverse sex development (dsd) can be conceptualized as an aspect of bodily diversity that has particular psychosocial implications. This is a review of psychosocial health care literature, published from 2007 to 2017, focusing on the well-being of people with a diagnosis relating to sex development. The analysis I offer here takes a critical psychological approach, questioning norms and taken-for-granted assumptions. This approach works from the understanding that how we know and how we talk about a phenomenon affects people in material and life-changing ways. This article offers recommendations concerning health care communication, the importance of taking time for emotion, and the process of building supportive relationships. The research reviewed provides clear evidence of psychosocial harm that is done through genital intervention and evidence that parents do not routinely give fully informed consent before their children undergo treatment. Finally, I highlight key points and recommendations for health professionals, indicating how psychosocial professionals can contribute to health care and well-being in the context of dsd when appropriately resourced and trained.

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

INTRODUCTION: Psychological research provides insights into how parents approach medical decisions on behalf of children. The medical decision of concern here is the surgical alteration of a hypospadic penis, whose urethral opening does not appear at the tip. Hypospadias surgery is routinely carried out in infancy, despite criticism by international organizations concerned about children's rights. The focus of this study is on the framing of hypospadias surgery. OBJECTIVES: The objective was to examine how health professionals frame hypospadias and hypospadias surgery in medical and non-medical ways. DESIGN: This was a qualitative study designed to build on the experimental research of Streuli et al. who investigated how medical versus non-medical information affects decision-making about non-essential childhood genital surgery. METHODS: Semi-structured interviews were undertaken with 32 health professionals. Theoretically informed thematic analysis was used to examine how health professionals talk about hypospadias surgery and about supporting parents to make treatment decisions. RESULTS: The analysis suggests that medical professionals' engagement with parents underestimates the effect of framing in influencing parental decisions about hypospadias surgery. Some psychological specialists in this area are actively framing hypospadias in ways that enable some parents to choose a non-medical pathway. Psychologically informed ways of talking about a child's genital difference focus on psychological qualities, including affect, well-being, and unconditional positive regard. CONCLUSIONS: The best interests of children with hypospadias may well be served when psychological pathways are highlighted, providing opportunities to support the flourishing of children whose genital appearance raises the question of medical intervention. Statement of Contribution What is already known on this subject? Framing significantly affects medical decision-making in ways that people typically fail to perceive. Parents frequently consent to non-essential hypospadias (penile) surgery for their sons, despite the risks and ethical concerns. What does this study add? Medical teams could do more to consider framing when counselling parents about their son's hypospadias. Psychological specialists can help parents to frame their son's penile difference in terms of well-being and love. The best interests of children with hypospadias may be served by highlighting psychological care pathways.

Vaginal Construction and Treatment Providers' Experiences: A Qualitative Analysis.

STUDY OBJECTIVE: To investigate specialist clinicians' experiences of treating vaginal agenesis. DESIGN: Semi-structured interviews. SETTING: Twelve hospitals in Britain and Sweden. PARTICIPANTS: Thirty-two health professionals connected to multidisciplinary teams (MDTs) including medical specialists and psychologists. INTERVENTIONS AND MAIN OUTCOME MEASURES: Theoretical thematic analysis of recorded verbatim data. RESULTS: The gynecologist and psychologist interviewees share certain observations including the importance of psychological readiness for and appropriate timing of treatment. Three overlapping themes are identified in our theoretical analysis of the MDT clinicians' talk: (1) the stigma of vaginal agenesis and the pressure to be "normal" can lead patients to minimize the time, effort, physical discomfort, and emotional cost inherent in treatment. (2) Under pressure, treatment might be presented to patients with insufficient attention to the potential psychological effect of the language used. Furthermore, the opportunity to question what is "normal" in sex is generally not taken up. It can be challenging to help the women to transcend their medicalized experiences to come to experiencing their bodies as sexual and enjoyable. (3) The reality of treatment demands, which are not always adequately processed before treatment, can lead to discontinuation and even disengagement with services. CONCLUSION: The MDT clinicians in this study emphasized the importance of psychological input in vaginal construction. However, such input should proactively question social norms about how women's genitalia should appear and function. Furthermore, rather than steering patients (back) to treatment, the entire MDT could more explicitly question social norms and help the women to do the same. By shifting the definition of success from anatomy to personal agency, the clinical focus is transformed from treatment to women.

From Knowing Nothing to Knowing What, How and Now: Parents' Experiences of Caring for their Children With Congenital Adrenal Hyperplasia.

Objective: This study investigates various kinds of knowing that European parents use when caring for their children with congenital adrenal hyperplasia (CAH). Methods: Semi-structured qualitative interviews with 20 parents of 22 children with CAH. Results: Parents emphasized the importance of knowing what CAH is and what support their child needs, but also knowing how to cope and make sense of the new situation, how to attend to their child's medical needs as well as how to talk to their child. Parents also reported challenges related to connecting with their social network, experiences of emergency care, and how to help their children become independent. These challenges require knowing now : being able to respond appropriately to unique circumstances. Conclusions: Parents experience diverse challenges that may moderate the effects of the diagnosis on children's well-being. Parenting children with CAH requires the development of knowing that goes beyond medical information.

"It's Part of Me, Not All of Me": Young Women's Experiences of Receiving a Diagnosis Related to Diverse Sex Development.

STUDY OBJECTIVE: To understand young women's experiences of receiving a diagnosis related to diverse sex development. DESIGN: A qualitative narrative analysis of interviews. SETTING: Karolinska University Hospital. PARTICIPANTS: Nine women (aged 20-26 years) with complete androgen insensitivity syndrome, XY or XX gonadal dysgenesis. INTERVENTIONS: Semistructured interviews. MAIN OUTCOME MEASURES: A narrative approach was used to analyze the interviews. This involved identification of individual narratives of receiving the diagnosis, as well as identification of key issues that were common across interviews. RESULTS: The analysis showed how participants' prediagnosis life experiences framed how medical information was perceived upon diagnosis. All participants had been informed about their condition before the study, but not all remembered the name of their diagnosis. Participants described positive characteristics of health professionals, such as being flexible and able to adapt to patients' individual needs. Clinicians' strategies, such as normalizing patients' experiences, were usually perceived as supportive, but were not always considered helpful. After the diagnosis, participants were worried about potential social, practical, and philosophical issues. CONCLUSION: This research highlighted the importance of clinicians taking an exploratory and individualized approach to the sensitive process of disclosing a diagnosis related to diverse sex development to young adults. There are various strategies health professionals can use that might help young people to develop their knowledge about their condition: (1) repeating information to help the patient remember; (2) using language that is not too medicalized; and (3) communicating in a way that is meaningfully connected to patients' everyday lives.

The Body as a Site of Gender-Related Distress: Ethical Considerations for Gender Variant Youth in Clinical Settings.

The present article maps out understandings about embodied distress among gender-nonconforming youth. Feminist bioethics and queer-inflected clinical perspectives are used to inform thinking about ethical, nonpathologizing health care in the case of gender-related distress. Specific attention is directed at self-harming among gender variant and trans youth. This is contextualized in relation to the role that self-harm plays for some LGBT youth, where it may be seen as a rite of passage or as reasonable and inevitable way of coping. The particular complexities of self-harm among trans youth seeking clinical intervention are examined. Queer bioethics is proposed as potentially facilitating productive uncertainty with regard to the diverse imagined futures of gender variant and trans youth.

The psychological impact of a diagnosis of Alzheimer's disease.

Research on the experience of receiving and living with a diagnosis of dementia is sparse. Existing studies have focused on the initial reactions to the diagnosis rather than longer term adjustment and coping. The current study uses interpretative phenomenological analysis to explore personal experiences of receiving a diagnosis and to investigate aspects of the experience of adjusting and adapting to dementia. This is a cross-sectional study drawing on semi-structured interviews with 10 participants who had a diagnosis of mild Alzheimer's disease. The findings illustrated the importance, to people with Alzheimer's disease, of understanding and making sense of the diagnosis to help them deal with issues of loss and to make positive adjustments to their lives through employing specific coping strategies. The findings also appeared to challenge misconceptions held by some professionals in relation to possible negative effects of disclosing a diagnosis of dementia.

Pushing the boundaries: understanding self-harm in a non-clinical population.

This study investigates 122 people's descriptions of their self-harm experiences using thematic analysis. Analysis revealed four themes: What counts as self-harm, What leads to self-harm, Intentions and Managing stigma. Our participants challenged commonly accepted understandings in terms of method, outcome and intentions. Several difficulties associated with discriminating between suicidal and non-suicidal self-harm were highlighted, which may be important in clinical practice. Few participants mentioned diagnosed psychiatric disorders; they best understood self-harm through their social experiences. Focusing on social understandings of self-harm may help reduce associated stigma and barriers to help-seeking.

Gender roles, suicidal ideation, and self-harming in young adults.

This study investigates whether positive and negative conventional gender roles relate to suicidal ideation and self-harming in different ways among young adults. Participants completed an online survey about previous self-harm, recent suicidal ideation, and positive and negative aspects of conventional masculinity and femininity. Logistic regression analyses showed that negative femininity positively predicted self-harm and recent suicidal ideation status. Positive femininity was unrelated. Positive masculinity was negatively related to suicidal ideation and self-harming while negative masculinity was negatively related to self-harming only. The findings suggest that it is not the conventional feminine gender role per se that is associated with suicidality but specific negatively evaluated aspects. Conceptualizing gender as a multivariate construct may be useful in the gender socialization theory of suicidal behavior.

Youth on the virtual edge: researching marginalized sexualities and genders online.

Research shows clear links between lesbian, gay, bisexual, and transgender (LGBT) youth and deliberate self-harm (DSH), but there is a lack of research investigating the social context of young LGBT people's lives and helping to explain the higher DSH risk. In this article, we report on a small-scale methodological study intended to test the feasibility of online qualitative interviews for investigating young people, sexual and gender identity, and emotional distress. There are many methodological dilemmas arising from researching such sensitive issues with marginalized groups. The study reported here was designed to examine (a) sampling diversity in terms of sexuality, gender identities, and class; and (b) the type of data produced. We found that a virtual methodology was effective in recruiting young LGBT participants who might otherwise not take part in research. Online interviewing successfully produced in-depth, "immediate" data that potentially gave access to insights that might not emerge through face-to face interviews.

The non-display of authentic distress: public-private dualism in young people's discursive construction of self-harm.

This article draws from focus groups and interviews investigating how young people talk about self-harm. Some of the research participants had personal experience of self-harm but this was not a prerequisite for their inclusion in the study. Thematic coding was used initially to organise and give an overview of the data, but the data were subsequently analysed using a discourse analytic approach. The article focuses on the young people's constructions of deliberate self-harm such as 'cutting'. Throughout the focus groups and interviews, a dichotomy was set up by the young people between authentic, private self-harm which is rooted in real distress (and warrants a sympathetic response) and public, self-indulgent attempts to seek attention. This dualistic construction is discussed in some detail and located in various socio-cultural contexts. It is argued that the dualism illustrates contemporary ambivalence about mental health and youth.

Selling your self? The psychological impact of street sex work and factors affecting support seeking.

Previous research investigating the risks of female street sex work has tended to focus on the most tangible risks to physical health and safety. This is reflected in the provision of support services for sex workers, where these aspects are prioritised. There is little research focusing solely on the psychological risks of sex work. This qualitative study aimed to explore the perceived psychological impact of street sex work and factors that affected support seeking. Interviews were carried out with a sample of UK female street sex workers (n = 7) who attended a drop-in clinic and health professionals (n = 5) who provided input to the drop-in service. The analytic process, which drew from an interpretative phenomenological approach, revealed four main themes that work together to describe the emotional impact of selling sex. Implications for support services and future research are highlighted.

Avoiding shame: young LGBT people, homophobia and self-destructive behaviours.

This paper reports on findings from qualitative research conducted in the UK that sought to explore the connections between sexual identities and self-destructive behaviours in young people. International evidence demonstrates that there are elevated rates of suicide and alcohol abuse amongst lesbian, gay, bisexual and transgender (LGBT) youth. Rarely included in this body of research are investigations into young LGBT people's views and experiences of self-destructive behaviours. Data from interviews and focus groups with young LGBT participants suggest a strong link between homophobia and self-destructive behaviours. Utilising a discourse analytic approach, we argue that homophobia works to punish at a deep individual level and requires young LGBT people to manage being positioned, because of their sexual desire or gendered ways of being, as abnormal, dirty and disgusting. At the centre of the complex and multiple ways in which young LGBT people negotiate homophobia are 'modalities of shame-avoidance' such as: the routinization and minimizing of homophobia; maintaining individual 'adult' responsibility; and constructing 'proud' identities. The paper argues that these strategies of shame-avoidance suggest young LGBT people manage homophobia individually, without expectation of support and, as such, may make them vulnerable to self-destructive behaviours.

Making sense of suicide: a discourse analysis of young people's talk about suicidal subjecthood.

Though there is a substantial body of literature on youth suicide, relatively few studies provide a detailed analysis of young people's own understandings of suicidal behaviour. The present research pays particular attention to how young people make sense of suicide, in the understanding that suicide only becomes possible insofar as it is imaginable. Interviews and focus groups (including 69 participants in total) with people aged 16-24 years provide the empirical material for this study. Research participants were recruited across a range of ethnic groups and sexual orientations, and drawn from rural and urban areas in the North of England and South Wales. Four frameworks for understanding youth suicide are discussed in this paper. These frameworks of understanding variously (i) cast suicidal subjects as Other, (ii) highlight suicide as something that is accessible to young people, (iii) demonstrate the desire to rationalise suicidal behaviour, and (iv) define suicidal subjects in terms of their relationships with others. The interwoven meanings that run through these four frameworks, and their connection with existing literature, are discussed and the implications for suicide prevention are indicated.

Lesbian, gay, bisexual and transgender young people's experiences of distress: resilience, ambivalence and self-destructive behaviour.

The research presented in this paper set out to explore the cultural context of youth suicide and more specifically any connections between sexual identity and self-destructive behaviour, in the light of international evidence about the disproportionate risk of suicidal thoughts and suicide attempts in lesbian, gay, bisexual and transgender (LGBT) young people. The empirical basis for the paper is qualitative research that was carried out in the North West of England and South Wales. Focus groups and interviews were conducted with a total of 69 young people, with a purposive sample to reflect diversity of sexual identity, social class and regional and rural-urban location. The paper presents a thematic analysis of the data specifically relating to the experiences of LGBT young people. A range of strategies that LGBT young people employ in the face of distress are described. These are categorised as resilience, ambivalence and self-destructive behaviour (including self-harm and suicide). The potential implications for health and social care of these strategies include the need for ecological approaches and for sexual cultural competence in practitioners, as well as prioritisation of LGBT risk within suicide prevention policies.

Extending systematic reviews to include evidence on implementation: methodological work on a review of community-based initiatives to prevent injuries.

Unintentional injury is a leading cause of mortality and disability among young and old. While evidence about the effectiveness of interventions in reducing injuries is accumulating, reviews of this evidence frequently fail to include details of implementation processes. Our research, of which the work reported here formed a part, had two main objectives: (1) to identify evidence about the implementation of interventions aimed at reducing unintentional injuries amongst children and young people; and (2) to explore methods for systematically reviewing evidence on implementation. Existing systematic reviews of the effectiveness of interventions aiming to reduce unintentional injuries in children and young people formed the starting point for the work reported here. In summary, many of the published papers we identified contained little information on implementation processes and, even when these were discussed, the extent to which authors' claims were based on research evidence was unclear. On the basis of the studies we reviewed implementation data were insufficiently strong to provide a sound evidence base for practitioners and policymakers. Notwithstanding this, we identified valuable data about the context in which such initiatives are implemented and the type of factors that might impinge on implementation. This work has implications in three areas: (1) researchers with an interest in evidence-based public health could be encouraged to consider implementation issues in the design of intervention studies; (2) funding bodies could be encouraged to prioritise intervention studies using mixed methods that will enable researchers to consider effectiveness and implementation; (3) journal editors could work towards increasing the quality of reporting on implementation issues through the development of guidelines.