A case study analysis of a successful birth center in northern Uganda.

BACKGROUND: Mothers and infants continue to die at alarming rates throughout the Global South. Evidence suggests that high-quality midwifery care significantly reduces preventable maternal and neonatal morbidity and mortality. This paper uses a case study approach to describe the social and institutional model at one birth center in Northern Uganda where, in over 20,000 births, there have been no maternal deaths and the neonatal mortality rate is 11/1000-a rate that is lower than many high-resource countries. METHODS: This case study combined institutional ethnographic and narrative methods to explore key maternal and neonatal outcomes. The sample included birthing people who intended to or had given birth at the center, as well as the midwives, staff, stakeholders, and community health workers affiliated with the center. Data were collected through individual and small group interviews, participant observation, field notes, data and document reviews. Iterative and systematic analytical steps were followed, and all data were organized and managed with Atlas.ti software. RESULTS: Findings describe the setting, an overview of the birth center's history, how it is situated within the community, its staffing, administration, clinical outcomes, and model of care. A synthesis of contextual variables and key outcomes as they relate to the components of the evidence-informed Quality Maternal and Newborn Care (QMNC) framework are presented. Three overarching themes were identified: (a) community knowledge and understanding, (b) community integrated care, and (c) quality care that is respectful, accessible, and available. CONCLUSIONS: This birth center is an example of care that embodies the findings and anticipated outcomes described in the QMNC framework. Replication of this model in other childbearing settings may help alleviate unnecessary perinatal morbidity and mortality.

Midwifery care during labor and birth in the United States.

The intrapartum period is a crucial time in the continuum of pregnancy and parenting. Events during this time are shaped by individuals' unique sociocultural and health characteristics and by their healthcare providers, practice protocols, and the physical environment in which care is delivered. Childbearing people in the United States have less opportunity for midwifery care than in other high-income countries. In the United States, there are 4 midwives for every 1000 live births, whereas, in most other high-income countries, there are between 30 and 70 midwives. Furthermore, these countries have lower maternal and neonatal mortality rates and have consistently lower costs of care. National and international evidences consistently report that births attended by midwives have fewer interventions, cesarean deliveries, preterm births, inductions of labor, and more vaginal births after cesarean delivery. In addition, midwifery care is consistently associated with respectful care and high patient satisfaction. Midwife-physician collaboration exists along a continuum, including births attended independently by midwives, births managed in consultation with a physician, and births attended primarily by a physician with a midwife acting as consultant on the normal aspects of care. This expert review defined midwifery care and provided an overview of midwifery in the United States with an emphasis on the intrapartum setting. Health outcomes associated with midwifery care, specific models of intrapartum care, and workforce issues have been presented within national and international contexts. Recommendations that align with the integration of midwifery have been suggested to improve national outcomes and reduce pregnancy-related disparities.

The clinical profile of patients attending a large, Australian pediatric gender service: A 10-year review.

Objectives: To better understand the clinical profile of patients attending a large Australian pediatric gender service. Retrospective clinical audit of patients seen at the Royal Children's Hospital Gender Service (RCHGS) over 10 years (2007-16). Setting: The RCHGS: Australia's largest pediatric gender service. Participants: Patients were eligible for inclusion if they had an appointment with the RCHGS between January 2007 - December 2016, and had either a self-reported gender which differed from what was presumed for them at birth or sought guidance regarding gender identity/expression. Main outcome measures: Demographic/developmental history, clinical presentation including information about gender identity/dysphoria, comorbidities, self-harm, suicidal ideation, gender-affirming treatment, psychosocial functioning. Results: 359 patients were first seen during the study period. Assigned females (54%) slightly outnumbered assigned males (46%), and presented at an older age (14.8 vs 12.4 years. Patients predominantly identified as transgender (87.2%) or non-binary (7.2%). Across the cohort, gender diversity was evident from a young age (median age 3), and symptoms of gender dysphoria were noted earlier in assigned males (median age 4) than assigned females (median age 11). Although 81% of patients met eligibility for GD, rates of hormonal treatment were much lower, with 29% of young people ≥10 years of age receiving puberty blocking treatment and 38% of adolescents ≥ 16 years of age receiving gender-affirming hormones (i.e. testosterone or estrogen). Many patients had mental health difficulties and/or neurodevelopment disorders, including major depressive disorder/low mood (51%), self-harm (25%), suicidal ideation (30%) and autism spectrum disorder (16%). Conclusion: This audit illustrates the complex profile and needs of transgender and gender diverse children and adolescents presenting to specialist gender services. Supplemental data for this article is available online at https://doi.org/10.1080/26895269.2021.1939221 .

Review of midwifery education in Uganda: Toward a framework for integrated learning and midwifery model of care.

OBJECTIVE: To examine the current approach to midwifery education and deployment in Uganda against the backdrop of the evidence presented in the Lancet Series on Midwifery and the International Confederation of Midwives Global Standards for Midwifery Education. To make a distinction between 'Midwifery Model of Care' and training in maternal health nursing and highlight the need for midwifery education that is in alignment with international standards and reflexive to the realities of the Ugandan clinical context. SETTING/PARTICIPANTS: A review of Ugandan nursing and midwifery education structure, curricula and current workforce configurations. A review of government reports and published literature regarding nursing and midwifery education. FINDINGS: The pathways for nursing and midwifery education in Uganda are too numerous and without clear pathways for educational advancement. The scope of practice for new graduates is not realistic to the context midwives will practice in. Overall, nursing and midwifery education curricula does not prepare graduates to International Confederation of Midwives Standards and lacks training and mentorship in the 'Midwifery Model of Care' making graduates closer to 'maternity nurses' than midwives. KEY CONCLUSIONS: The Ugandan midwifery education curricula and model needs to bring education standards into alignment with International Confederation of Midwives such that midwives are equipped to practice using the Quality Maternal Newborn Care Framework. Until this is accomplished maternal and newborn mortality rates will remain high, Uganda will continue to lose one of it's greatest resources, it's human capital, and the Sustainable Development Goal 3 will remain out of reach.

Predicting successful sperm retrieval in transfeminine adolescents after testicular biopsy.

PURPOSE: Increasing numbers of transgender adolescents are receiving gender-affirming treatments (GAT). Given GAT can impair reproductive function, clinical guidelines advise prior counselling regarding fertility preservation (FP). For transgender adults assigned male at birth, FP is usually achieved via a masturbatory sample and sperm cryopreservation. This is less straightforward in transgender adolescents, since they may not be developmentally ready to masturbate and/or masturbation may cause unacceptable gender dysphoria. Testicular biopsy represents an alternative method for sperm retrieval in these adolescents, but for those in early/mid puberty, it is difficult to predict whether sperm will be found. The purpose of this study was therefore to identify factors that predict successful sperm retrieval for cryopreservation via testicular biopsy. METHODS: A retrospective cohort study was undertaken at a tertiary-referral pediatric gender service. Subjects were included if they'd received a testicular biopsy in association with the commencement of GAT between 2010 and 2019. The primary outcome measure was successful sperm retrieval, and potential predictors included age, testicular volume and serum testosterone, LH and FSH levels. RESULTS: Of 25 subjects who received a biopsy prior to starting any GAT, 17 had successful sperm retrieval. While age, testosterone, LH and FSH levels showed minimal differences, testicular volume was significantly higher in those with successful sperm retrieval, and a threshold of ≥ 10 mL showed 92% sensitivity and 71% specificity in predicting successful retrieval. An additional 6 patients received a biopsy after starting puberty suppression and before commencement of oestrogen, and one of these individuals had sperm successfully retrieved despite > 2 years of regular puberty suppression. CONCLUSION: These findings suggest that testicular volume is most useful in predicting successful sperm retrieval following testicular biopsy in transgender adolescents and are likely to be of relevance to other young people undertaking FP, including those with cancer.

Should clinicians make chest surgery available to transgender male adolescents?

Bioethicists are increasingly engaged in considering the ethical issues associated with the care of transgender people. One such issue facing paediatric clinicians is requests for chest surgery from transgender male adolescents. For transgender young people who identify as male but have already progressed through the mid to late stages of puberty, hormone treatment will not reverse breast development. Some of these young people are distressed by their chest, and request surgery to remove this tissue. Demand for this surgery during adolescence is increasing. However, few paediatric hospitals make this intervention available to adolescents. This paper focuses on the following ethical question: Should clinicians make chest surgery available to transgender male adolescents? We argue that making chest surgery available to transgender male adolescents under some circumstances is ethically justifiable for three reasons, based on the concepts of beneficence, privacy, and non-discrimination. Firstly, the limited evidence to date suggests that chest surgery is beneficial to transgender male adolescents who seek this intervention. Secondly, chest surgery protects transgender adolescents' privacy by enabling them to better control disclosure of their transgender identity. Thirdly, chest surgery is already performed on other adolescent males for psychosocial reasons, such as in the case of gynaecomastia; non-discrimination thus provides a further reason for making chest surgery available to transgender male adolescents whose male gender identity is consistent. We suggest that the ethical justifiability of chest surgery in any specific transgender adolescent's case will depend on the individual patient's circumstances.

Bridge study protocol: an international, observational cohort study on the transition of healthcare for adolescents with chronic conditions.

INTRODUCTION: More than 10% of adolescents live with a chronic disease or disability that requires regular medical follow-up as they mature into adulthood. During the first 2 years after adolescents with chronic conditions are transferred to adult hospitals, non-adherence rates approach 70% and emergency visits and hospitalisation rates significantly increase. The purpose of the Bridge study is to prospectively examine associations of transition readiness and care experiences with transition success: young patients' health, health-related quality of life (HRQoL) and adherence to medical appointments as well as costs of care. In addition, we will track patients' growing independence and educational and employment pathways during the transition process. METHODS AND ANALYSIS: Bridge is an international, prospective, observational cohort study. Study participants are adolescents with a chronic health condition or disability and their parents/guardians who attended the New Children's Hospital in Helsinki, Finland, or the Royal Children's Hospital (RCH) in Melbourne, Australia. Baseline assessment took place approximately 6 months prior to the transfer of care and follow-up data will be collected 1 year and 2 years after the transfer of care. Data will be collected from patients' hospital records and from questionnaires completed by the patient and their parent/guardian at each time point. The primary outcomes of this study are adherence to medical appointments, clinical health status and HRQoL and costs of care. Secondary outcome measures are educational and employment outcomes. ETHICS AND DISSEMINATION: The Ethics Committee for Women's and Children's Health and Psychiatry at the Helsinki University Hospital (HUS/1547/2017) and the RCH Human Research Ethics Committee (38035) have approved the Bridge study protocol. Results will be published in international peer-reviewed journals and summaries will be provided to the funders of the study as well as patients and their parents/guardians. TRIAL REGISTRATION NUMBER: NCT04631965.

Measurement tools for gender identity, gender expression, and gender dysphoria in transgender and gender-diverse children and adolescents: a systematic review.

Increasing numbers of children and adolescents are being referred to gender services for gender-related concerns. Various instruments are used with these patients in clinical care, but their clinical validity, strengths, and limitations have not been systematically reviewed. In this systematic review, we searched MEDLINE, PubMed, and PsycINFO databases for available tools that assess gender identity, gender expression, or gender dysphoria in transgender and gender-diverse (TGD) children and adolescents. We included studies published before Jan 20, 2020, that used tools to assess gender identity, expression, or dysphoria in TGD individuals younger than 18 years. Data were extracted from eligible studies using a standardised form. We found 39 studies that met the inclusion criteria, from which we identified 24 tools. The nature of tools varied considerably and included direct observation, child and adolescent self-report, and parent-report tools. Many methods have only been used with small samples, include outdated content, and lack evaluation of psychometric properties. In summary, a paucity of studies in this area, along with sparse reporting of psychometric properties, made it difficult to compare the relative use of tools, and current tools have substantial limitations. Future research is required to validate existing measures and create more relevant, culturally appropriate tools.

Implementing an Evidence-Based Bundle to Reduce Early Labor Admissions and Increase Adherence to Labor Arrest Guidelines: A Quality Improvement Initiative.

BACKGROUND: At many hospitals, the cesarean birth rate among nulliparous term singleton vertex (NTSV) pregnancies is higher than World Health Organization benchmarks. Reducing NTSV cesarean birth is a national quality imperative. The aim of this initiative was to implement an evidence-based bundle at an urban community teaching hospital in at least 50% of labors in 60 days in order to reduce early labor admissions and increase adherence to evidence-based labor management guidelines shown to decrease cesarean birth. METHODS: Chart audits, root-cause analysis, and staff engagement informed bundle development. An early labor triage guide, labor walking path, partograph, and pre-cesarean checklist were implemented to drive change. Four Rapid Cycle Plan Do Study Act cycles were conducted over 8 weeks. RESULTS: The bundle was implemented in 58% of births. The bundle reduced early labor admissions labor from 41% to 25%. Team knowledge reflecting current guidelines in labor management increased 35% and 100% of cesareans for labor arrest met criteria. Patient satisfaction scores exceeded 98%. CONCLUSIONS: Implementing an evidenced-based bundle was effective in reducing early labor admissions and increasing utilization of and adherence to labor management guidelines. IMPLICATIONS FOR NURSING: Implementation of evidence-based bundles has the potential to achieve meaningful quality improvements in maternity care.

"No One Stays Just on Blockers Forever": Clinicians' Divergent Views and Practices Regarding Puberty Suppression for Nonbinary Young People.

PURPOSE: Approximately half of transgender or gender diverse youth identify as gender nonbinary (not entirely or exclusively male or female). This study aimed to explore the views and practices of Australian clinicians working with transgender or gender diverse young people regarding puberty suppression for nonbinary youth, including requests for ongoing puberty suppression into adulthood. METHODS: Individual semistructured key informant interviews were conducted with 14 clinicians (medical and mental health) in Australia to explore their practices, views, and decision-making regarding puberty suppression for nonbinary youth. Transcripts were analyzed using inductive content analysis. RESULTS: Requests for puberty suppression from nonbinary young people are occurring, with 12 of 14 clinicians reporting they have received such requests. Although all clinicians were prepared to support short-term puberty suppression for nonbinary youth, clinicians diverged in their preparedness to support long-term puberty suppression. Clinicians expressed concerns in relation to risks, resource allocation, and medicalization. Some clinicians required nonbinary young people to choose a masculinizing or feminizing puberty. Some clinicians also put forward arguments in favor of long-term puberty suppression, including potential psychosocial harm of discontinuing puberty suppression, respect for autonomy, equity, and harm minimization. Clinicians also highlighted practical challenges of obtaining long-term puberty suppression in the adult setting. CONCLUSIONS: The decision of whether to provide puberty suppression, particularly long-term, to a nonbinary young person is both ethically and clinically complex. There is currently a diversity of practice in this area, and evidence-based ethical guidelines and outcome data could promote more informed decision-making and support clinicians working in this complex area.

Forever young? The ethics of ongoing puberty suppression for non-binary adults.

In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing puberty suppression (OPS) to permanently prevent the development of secondary sex characteristics, as a way of affirming their gender identity. We argue that (1) the aim of OPS is consistent with the proper goals of medicine to promote well-being, and therefore could ethically be offered to non-binary adults in principle; (2) there are additional equity-based reasons to offer OPS to non-binary adults as a group; and (3) the ethical defensibility of facilitating individual requests for OPS from non-binary adults also depends on other relevant considerations, including the balance of potential benefits over harms for that specific patient, and whether the patient's request is substantially autonomous. Although the broadly principlist ethical approach we take can be used to analyse other cases of non-binary adults requesting OPS apart from the case we evaluate, we highlight that the outcome will necessarily depend on the individual's context and values. However, such clinical provision of OPS should ideally be within the context of a properly designed research study with long-term follow-up and open publication of results.

Adolescent and Parent Experience of Care at a Family-Based Treatment Service for Eating Disorders.

OBJECTIVE: Incorporating consumer perspectives is an important but often overlooked opportunity to optimize treatment engagement and outcomes for adolescents with eating disorders. This study explored the experience of care of adolescents and their parents at a multidisciplinary specialist eating disorders service providing family-based treatment (FBT) as first-line treatment. METHOD: Eighty-five adolescents and 145 parents who completed FBT at the service between 2013 and 2015 were surveyed in 2017 about their experience of care. A study-designed survey asked respondents to rate on Likert scales their experience of service access, intake assessment, education, support, interactions with the treatment team, recovery, and the discharge process. Open-ended comments on helpful and unhelpful aspects of the service provided further context on the ratings. RESULTS: Overall families were very positive about their experience, particularly in regard to assessment, education, interactions with the team, and achieving physical health. Although parents tended to be more satisfied, adolescents also held the service in high regard. Some areas were identified that could be improved, including treatment delays, carer support, therapeutic alliance, and preparation for discharge. CONCLUSIONS: Surveying families about their experience of care provides an important opportunity to identify service strengths as well as services gaps. The results indicated several areas that specialist eating disorder services could focus on to ensure that the services provided, including FBT, fully meet the needs of families and optimize adolescents' treatment experiences.

Long-term Puberty Suppression for a Nonbinary Teenager.

Many transgender and gender-diverse people have a gender identity that does not conform to the binary categories of male or female; they have a nonbinary gender. Some nonbinary individuals are most comfortable with an androgynous gender expression. For those who have not yet fully progressed through puberty, puberty suppression with gonadotrophin-releasing hormone agonists can support an androgynous appearance. Although such treatment is shown to ameliorate the gender dysphoria and serious mental health issues commonly seen in transgender and gender-diverse young people, long-term use of puberty-suppressing medications carries physical health risks and raises various ethical dilemmas. In this Ethics Rounds, we analyze a case that raised issues about prolonged pubertal suppression for a patient with a nonbinary gender.

What are the health outcomes of trans and gender diverse young people in Australia? Study protocol for the Trans20 longitudinal cohort study.

INTRODUCTION: Being transgender is frequently accompanied by gender dysphoria, which often coexists with mental health concerns. Increased referrals of transgender and gender diverse (TGD) youth to gender clinics have been observed in many countries. Nevertheless, there are limited empirical data on the presentation and outcomes of these patients, and there is an urgent need for more evidence to ensure optimal medical and psychosocial interventions. Here, we describe Trans20, a longitudinal study of TGD patients attending a multidisciplinary paediatric gender service in Melbourne, Australia. Trans20 aims to understand the demographic and clinical characteristics of these patients, to document the natural history of gender diversity presenting in childhood and to investigate long-term outcomes for those receiving interventions. METHODS AND ANALYSIS: Trans20 is a prospective cohort study based on children and adolescents first seen at the Royal Children's Hospital Gender Service (RCHGS) between February 2017 and February 2020. Current estimates indicate the final sample size will be approximately 600. Patients and their parents complete online questionnaires prior to the first appointment with RCHGS and regularly thereafter as part of routine clinical care. On discharge from RCHGS, patients are invited to continue undertaking questionnaires biennially. In this way, a naturally forming cohort study has been created. The primary outcomes include gender dysphoria, physical and mental health, schooling, family functioning and quality of life. Subgroup analyses based on factors such as gender identity, birth-assigned sex and treatment received will be performed using bivariate and multivariate modelling as appropriate, and relevant statistical methods will be applied for the repeated measures over time. ETHICS AND DISSEMINATION: The Royal Children's Hospital Human Research Ethics Committee approved this study (#36323). Findings from Trans20 will have translational impact by informing future treatment guidelines and gender affirming healthcare practices and will be disseminated through conferences and peer reviewed journals.