Multi-stakeholder opinion statement on the care of individuals born with differences of sex development: common ground and opportunities for improvement.

BACKGROUND: In the last 15 years, the care provided for individuals born with differences of sex development (DSD) has evolved, with a strong emphasis on interdisciplinary approaches. However, these developments have not convinced some stakeholders to embrace the current model of care. This care model has also paid insufficient attention to socio-cultural differences and global inequalities. SUMMARY: This article is an opinion statement, resulting from in-depth discussions and reflection among clinicians, patients, and family support organizations based in the US and Europe, where we seek areas of common ground and try to identify opportunities to further develop resources. The product of these conversations is summarized in 10 panels. The corresponding sections provide additional discussion on some of the panel items. KEY MESSAGES: Participants identified areas of agreement and gained a deeper understanding of the reasons behind disagreements on certain matters and identified the necessary steps to foster future consensus. We offer preliminary recommendations for guiding clinical management and resource allocation. By promoting a broader consensus, we aim to enhance the quality of care and well-being for individuals of all ages who have a DSD.

Language Mapping using tEEG and EEG Data with Convolutional Neural Networks.

Tripolar electroencephalography (tEEG) has been found to have significantly better signal-to-noise ratio, spatial resolution, mutual information, and high-frequencies compared to EEG. This paper analyzes the tEEG signals acquired simultaneously with the EEG signals and compares their ability to map language to left and right hemispheres using convolutional neural networks (CNNs). The results show that while the time-domain features of tEEG and EEG signals lead to comparable functional mapping, the frequency domain features are significantly different. The left and right hemisphere classification performances using tEEG are equivalent in time and frequency domains. However, frequency domain classification for EEG results in less accuracy. Clinical Relevance- This technique could quickly, and noninvasively, guide clinicians about language dominance when preparing for resective surgery.

Environmental and political implications of underestimated cropland burning in Ukraine.

Open burning is illegal in Ukraine, yet Ukraine has, on average, 300 times more fire activity per year (2001-2019) than most European countries. In 2016 and 2017, 47% of Ukraine was identified as cultivated area, with a total of 70% of land area dedicated to agricultural use. Over 57% of all active fires in Ukraine detected using space-borne Visible Infrared Imaging Radiometer Suite (VIIRS) during 2016 and 2017 were associated with pre-planting field clearing and post-harvest crop residue removal, meaning that the majority of these fires are preventable. Due to the small size and transient nature of cropland burns, satellite-based burned area (BA) estimates are often underestimated. Moreover, traditional spectral-based BA algorithms are not suitable for distinguishing burned from plowed fields, especially in the black soil regions of Ukraine. Therefore, we developed a method to estimate agricultural BA by calibrating VIIRS active fire data with exhaustively mapped cropland reference areas (42 958 fields). Our study found that cropland BA was significantly underestimated (by 30%-63%) in the widely used Moderate Resolution Imaging Spectroradiometer-based MCD64A1 BA product, and by 95%-99.9% in Ukraine's National Greenhouse Gas Inventory. Although crop residue burns are smaller and emit far less emissions than larger wildfires, reliable monitoring of crop residue burning has a number of important benefits, including (a) improving regional air quality models and the subsequent understanding of human health impacts due to the proximity of crop residue burns to urban locations, (b) ensuring an accurate representation of predominantly smaller fires in regional emission inventories, and (c) increasing awareness of often illegal managed open burning to provide improved decision-making support for policy and resource managers.

Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet.

The treatment and care of individuals who have a difference of sex development (DSD) have been revised over the past two decades and new guidelines have been published. In order to study the impact of treatments and new forms of management in these rare and heterogeneous conditions, standardised assessment procedures across centres are needed. Diagnostic work-up and detailed genital phenotyping are crucial at first assessment. DSDs may affect general health, have associated features or lead to comorbidities which may only be observed through lifelong follow-up. The impact of medical treatments and surgical (non-) interventions warrants special attention in the context of critical review of current and future care. It is equally important to explore gender development early and refer to specialised services if needed. DSDs and the medical, psychological, cultural and familial ways of dealing with it may affect self-perception, self-esteem, and psychosexual function. Therefore, psychosocial support has become one of the cornerstones in the multidisciplinary management of DSD, but its impact remains to be assessed. Careful clinical evaluation and pooled data reporting in a global DSD registry will allow linking genetic, metabolomic, phenotypic and psychological data. For this purpose, our group of clinical experts and patient and parent representatives designed a template for structured longitudinal follow-up. In this paper, we explain the rationale behind the selection of the dataset. This tool provides guidance to professionals caring for individuals with a DSD and their families. At the same time, it collects the data needed for answering unsolved questions of patients, clinicians, and researchers. Ultimately, outcomes for defined subgroups of rare DSD conditions should be studied through large collaborative endeavours using a common protocol.

"I knew it was wrong the moment I got the order": A narrative thematic analysis of moral injury in combat veterans.

OBJECTIVE: Moral injury is a nascent construct intended to capture reactions to events that violate deeply held beliefs and moral values. Although a model of moral injury has been proposed, many of the theoretical propositions of this model have yet to be systematically studied. METHOD: We conducted semistructured interviews with eight veterans who reported experiencing morally injurious events during war zone deployments. RESULTS: Using narrative thematic analysis, five main themes and associated subthemes emerged from the data. The main themes capture the timing of the event, contextual factors that affected the decision-making process during the morally injurious event, reactions to the moral injurious event, search for purpose and meaning, and opening up. CONCLUSION: The findings from the present study supported an existing model of moral injury, while extending it in several important ways. Preliminary clinical recommendations and directions for future research are discussed based on the study findings. These include directly exploring the context surrounding the morally injurious event, examining the veterans' moral appraisals, and helping them assume appropriate responsibility for their actions to reduce excessive self-blame. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Involving Individuals with Disorders of Sex Development and Their Parents in Exploring New Models of Shared Learning: Proceedings from a DSDnet COST Action Workshop.

The level of connection between health care professionals and people who experience a condition that affects sex development is variable. These people and associated support groups need to be included in discussions about research and healthcare delivery. The aim of this study was to understand the experiences of individuals with disorders of sexual development (DSD), their parents, health care providers, and support groups. Workshop planning, preparation, delivery, and evaluation involved members of working groups from the COST Action DSDnet. A coordinator, in collaboration with a support group representative, led the workshop design and delivery. Our successful, facilitated workshop involved 33 attendees from 8 EU countries. The workshop provided individuals with DSD, parents, advisory groups, and professionals with an opportunity for shared learning. Outputs focused on 7 key areas, including diagnosis, childhood, and transition to adult care as well as fostering discussion around registries, future research topics, consent processes, and information needs across the life course. The importance of trustworthy and knowledgeable providers, time to understand such rare conditions, and the place support groups have in a life course approach were valuable learning points for all attendees. In conclusion, workshops can be designed and delivered in meaningful ways for all those involved in care of individuals with rare conditions.

Caring for individuals with a difference of sex development (DSD): a Consensus Statement.

The term differences of sex development (DSDs; also known as disorders of sex development) refers to a heterogeneous group of congenital conditions affecting human sex determination and differentiation. Several reports highlighting suboptimal physical and psychosexual outcomes in individuals who have a DSD led to a radical revision of nomenclature and management a decade ago. Whereas the resulting recommendations for holistic, multidisciplinary care seem to have been implemented rapidly in specialized paediatric services around the world, adolescents often experience difficulties in finding access to expert adult care and gradually or abruptly cease medical follow-up. Many adults with a DSD have health-related questions that remain unanswered owing to a lack of evidence pertaining to the natural evolution of the various conditions in later life stages. This Consensus Statement, developed by a European multidisciplinary group of experts, including patient representatives, summarizes evidence-based and experience-based recommendations for lifelong care and data collection in individuals with a DSD across ages and highlights clinical research priorities. By doing so, we hope to contribute to improving understanding and management of these conditions by involved medical professionals. In addition, we hope to give impetus to multicentre studies that will shed light on outcomes and comorbidities of DSD conditions across the lifespan.

Stigma and Spiritual Well-being among People Living with HIV/AIDS in Southern Appalachia.

The Appalachian South is disproportionately affected by HIV/AIDS. Partly due to the negative connotation that this disease carries in religiously conservative areas, HIV-related stigma remains a critical barrier to HIV care in the South. However, spirituality is a well-documented, effective coping mechanism among persons living with HIV/AIDS (PLWH). The purpose of this study was to examine the relationship between HIV-related stigma and spiritual well-being among a sample of PLWH (n = 216) in Appalachian counties of Tennessee and Alabama using the HIV Stigma Scale and the Spiritual Well-being Scale. Overall, disclosure of HIV status was the most highly reported stigma concern. Women reported higher levels of stigma and religious well-being than men. While existential well-being was negatively correlated with stigma, no significant overall correlation was found between religious well-being and stigma. Our findings reveal the importance of defining theology and differentiating between cultural religious conditioning and internalized beliefs.

Anticipating Needs at End of Life in Narratives Related by People Living With HIV/AIDS in Appalachia.

As part of a mixed methods study determining end-of-life and advanced care planning needs in southern Appalachia, a narrative analysis was done of stories told in interviews of 8 selected participants using transcript data. Narratives were fraught with contradiction and paradox. Tensions were evident about living in Appalachia, the Bible Belt, and an area wherein distances are long and community rejection can occur as news travels quickly. The primary finding was that stigma, from several sources, and shrinking circles of social support for people living with HIV/AIDS, all of whom were in treatment, combined to create a sense of solitariness. Narratives were fraught with tensions, contradictions, and paradoxes. Living in Appalachia, the Bible Belt, and an area wherein distances are long and community rejection can occur as news travels quickly. The rejection-based religiously based stigma was often predicated on stereotypes about sexual behavior and illicit drug use. Diagnosis was a key turning point after which many spiraled downward financially and socially. Implications for research and advanced care planning are included.

Exploring Holistic Comfort in Children Who Experience a Clinical Venipuncture Procedure.

PURPOSE: Children often experience the uncomfortable effects of invasive procedures as a part of primary care and during times of illness. Holistic comfort has been well documented in adult literature but little research exists on the understanding of holistic procedural comfort from the child's perspective. In this study, holistic comfort related to an invasive venipuncture procedure was explored in children age 5 to 7 years and their caregivers of all ages. DESIGN: A qualitative descriptive design described by Sandelowski was used. METHOD: The philosophical underpinnings of naturalistic inquiry of Guba and Lincoln were used. Semistructured interviews were conducted with 13 child and 15 caregiver participants. Children also drew pictures to help describe their perceptions. FINDINGS: Traditional thematic content analysis described by Hsieh and Shannon yielded four overarching themes of holistic comfort related to venipuncture procedures in children: Body Comfort, Cognitive and Emotional Comfort, Comfort in the Procedure Surroundings, and Comfort Play. CONCLUSIONS: Numerous recommendations for future research are included. Implications for nursing and related health sciences, organizational and administrative policy, invasive procedures, theory, and methods were found and are discussed. Findings from this study will assist nurses in providing procedure management for children from a holistic care perspective.

The Complexities of "Struggling to Live Life".

Purpose The purpose of the study was to explore and describe perceptions and experiences of young adults with type 1 diabetes mellitus (T1DM) living in Appalachia, Tennessee. Methods Qualitative descriptive analysis of in-depth interviews of 9 young adults (male = 3, female = 6) 18 to 30 years of age living in Appalachian counties in Tennessee provided the basis of identifying the salient concerns from the perspective of this diverse group related to living daily with T1DM. Data analysis was facilitated by using NVivo 11 Pro and consisted of iterative review of the accounts in 3 phases: immersion, reduction, and interpretation. Results Findings revealed that young Appalachian adults had some common, consistent experiences living with T1DM. Major themes included the struggle toward adulthood, the daily struggle of living with diabetes, the strong desire to live life, the supportive environment, the development of one's identity by diabetes, the disruptiveness of diabetes' demands, and the pros and cons of technological development in diabetes management. Conclusion Health vulnerabilities are multiplied for young adults living with T1DM in Appalachian Tennessee. Participants pointed to living in communities with social stigma, lack of T1DM knowledge, and lack of access to health care that compares with the quality of care they experienced when in pediatric care. They also expressed fear about pregnancy, diabetes complications, and the dangers of hypoglycemia. Individual and community-based empowerment programs focusing on T1DM accompanied by insurance reimbursement and T1DM policy reinforcement are necessary to reduce health disparities and improve quality of life in this underserved population of young adults in Appalachia.

Marginalization: A Revisitation With Integration of Scholarship on Globalization, Intersectionality, Privilege, Microaggressions, and Implicit Biases.

In 1994, the concept of marginalization was explored in an article in Advances in Nursing Science. This is a revisitation of the concept incorporating new scholarship. This update is founded on feminism, postcolonialism, critical race theory, and discourse deconstruction, all viewpoints that have been explicated in nursing. The purpose of this analysis is to look at new scholarship and concepts useful to applying marginalization in nursing knowledge development from the standpoint of Bourdieu's macro, meso, and micro levels. New scholarship includes globalization, intersectionality, privilege, microaggressions, and implicit bias. Implications for decreasing health disparities through this new scholarship are discussed.

The Marijuana Phenomenon: Contradictions and Silence.

The United States is trending toward more permissiveness regarding recreational and medicinal marijuana (MJ). Many conditions for which MJ is recommended, prescribed, or self-prescribed are symptoms that advanced practice nurses address daily. Yet, the silence of nursing scientists on ethics, practices, and policies regarding such clinical decisions is deafening. This is but one of many contradictions about MJ use that we discuss in this article. We do not propose to resolve these contradictions; that is left to the community of nurse scientists in interprofessional discourse. Collectively, we must explore these contradictions and, through evidence-based policy recommendations, overcome the silence about how providers view MJ, how it might be helpful, its risks, and cultural shifts that have accompanied a changed political/legal environment. Long term, we must close the gaps in the nursing knowledge base regarding MJ as it affects users and how it is used interventionally.

Girlhood Betrayals of Women Childhood Trauma Survivors in Treatment for Addiction.

PURPOSE: This research explored the understanding of trauma from the perspective of women who had experienced abuse and neglect in childhood. The goal was to better conceptualize potential avenues or interventions for prevention and treatment. DESIGN: Qualitative description of the accounts of eight women who were childhood trauma survivors and in treatment for addiction. Open-ended interviews focused on key events or experiences during childhood and adolescence and the use of drugs and alcohol. FINDINGS: Four levels of betrayal fit the accounts the participants gave as the dominant theme in their narratives. "Primary betrayal" referred to the direct victimization by a perpetrator; "secondary betrayal" referred to the complicity, denial, or indifference of another adult to the child's victimization; "tertiary betrayal" referred to failures of responsible individuals in community settings to protect the child; and "quaternary betrayal" represented self-betrayals. Substance misuse was an adolescent self-betrayal that provided initial solace yet ultimately threatened the integrity of the girls. We found an almost complete lack of support in family and community settings for the participants. CONCLUSIONS: These findings on betrayal inform health care for trauma survivors and can be a framework for preventing violence against children. CLINICAL RELEVANCE: Interventions for child and adolescent trauma survivors are critical to prevent the life-long health sequelae of childhood trauma. Pivotal times to engage these survivors include periods when they may be accessed in school and healthcare settings.

Survivor guilt: analyzing the concept and its contexts.

Survivor guilt, a concept associated with the interpersonal process of "surviving" harm while others do not, increasingly appears in nursing, medicine, and psychology literature. Paradoxically, the phenomenon is rarely defined and often poorly described. Combining Rodger's evolutionary concept analysis with a comprehensive literature review, we explain the attributes, antecedents, consequences, related concepts, and surrogate terms of survivor guilt. A new definition emerged from the evolving use of the concept in new contexts. Survivor guilt is a valid form of suffering for which effective interventions need to be developed. This analysis extends the concept, laying the foundation for comprehensive treatment strategies.

"It's Killing Us!" Narratives of Black Adults About Microaggression Experiences and Related Health Stress.

Perceived racism contributes to persistent health stress leading to health disparities. African American/Black persons (BPs) believe subtle, rather than overt, interpersonal racism is increasing. Sue and colleagues describe interpersonal racism as racial microaggressions: "routine" marginalizing indignities by White persons (WPs) toward BPs that contribute to health stress. In this narrative, exploratory study, Black adults (n = 10) were asked about specific racial microaggressions; they all experienced multiple types. Categorical and narrative analysis captured interpretations, strategies, and health stress attributions. Six iconic narratives contextualized health stress responses. Diverse mental and physical symptoms were attributed to racial microaggressions. Few strategies in response had positive outcomes. Future research includes development of coping strategies for BPs in these interactions, exploration of WPs awareness of their behaviors, and preventing racial microaggressions in health encounters that exacerbate health disparities.

Narrative thematic analysis of baccalaureate nursing students' reflections: critical thinking in the clinical education context.

This study sought to identify characteristics of clinically situated critical thinking in nursing students' reflections, originally part of a study guided by Richard Paul's model of critical thinking. Nurses are expected to apply critical thinking in all practice situations to improve health outcomes, including patient safety and satisfaction. In a previous study, Paul's model of critical thinking was used to develop questions for reflective writing assignments. Within that study, 30 nursing students completed six open-ended narratives of nurse-patient clinical encounters during an 8-week period. Improvements were seen in critical thinking scores after the intervention. This article reports the qualitative analysis of the content of six open-ended narratives. Six overarching themes were identified and combined into a tentative conceptual model. Faculty's understanding of the characteristics of critical thinking in the context of clinical education will help them to teach and evaluate students' progress and competencies for future practice.

Continuing the conversation in nursing on race and racism.

Nursing values include diversity and a commitment to the elimination of health disparities. However, nursing comprises predominantly white, female nurses. The authors explore structural and interpersonal sources of disparities experienced by black persons, including white privilege. Here, the authors advocate for a continuation of the racism conversation, specifically among white nurses. Racial disadvantages stem from structural inequalities from daily slights, and usually unintended subtle racism toward black people on the part of white people, including white nurses. By raising consciousness on how we propagate subtle racism, nursing can progress faster in eliminating health disparities. Topics include postracialism, colorblindness, institutional racism, white privilege, health disparities, clinical encounters, subtle racism, and racial microaggressions. Suggestions for open dialogue, historical awareness, education, research, and practice are highlighted. Difficulties involved in confronting racism and white privilege are explored.

Women's body image: implications for mental health nursing interventions.

The aim of this concept analysis is to define women's body image in the context of mental health and to describe its antecedents and consequences. The analysis is grounded in a selective review delimited to literature about women's self-perceived body image. The psychological, social, and spiritual effects of a negative body image will be explored. Implications for mental health clinicians and researchers will be presented.

Anger in the trajectory of healing from childhood maltreatment.

When a girl is abused during childhood, she may not experience anger, only helplessness or numbness. Only later may the emotion of anger surface. Little is known about anger cognitions or behaviors as they occur across the years of the healing trajectory from childhood maltreatment. Data for the present secondary analysis were derived from a large narrative study of women thriving in adulthood despite childhood abuse. The purpose of this analysis was to examine the phenomenon of anger and its role in the recovery process of 6 midlife women. The 6 cases were purposefully selected because their interviews contained rich descriptions of anger experiences. Because each woman was interviewed 3 times over a 6- to 12-month period, 18 transcripts were available for in-depth examination. A typology was constructed, depicting 5 types of anger. Anger ranged from nonproductive, self-castigating behavior to empowering, righteous anger that enabled women to protect themselves from further abuse and to advocate for abused children. Study findings are relevant to extant theories of women's anger and feminist therapies.