Conceptualizations of wellbeing among nonbinary individuals in the Midwestern United States: a photovoice study.

Background: Traditionally, gender has been viewed through an essentialist lens with fixed biology-based traits or polarized gender norms between women and men. As awareness of gender diversity grows, increasingly more people are coming out as nonbinary - or not exclusively a man or woman. Little has been explored regarding experiences unique to nonbinary individuals, particularly beyond a focus on adverse risks and outcomes to understand their wellbeing. This article discusses gendered experiences and the construction of wellbeing among nonbinary individuals. Aim: The purpose of this study was to conceptualize wellbeing as a complex multidimensional phenomenon through nonbinary individuals' perspectives. Methods: A virtual PhotoVoice study was conducted with 17 nonbinary adults in the Midwestern United States who participated in online group discussions and in-depth semi-structured interviews, which were analyzed with thematic analysis. Results: The analysis identified five core dimensions of nonbinary wellbeing: 1) Security, 2) Mental and physical health, 3) Autonomy, 4) Belonging, and 5) Gender positivity. Exemplary definitions of wellbeing are also presented. Discussion: Understanding how nonbinary individuals thrive challenges the framing of gender diverse experiences in adversity and presents a more holistic portrayal that community members and allies can strive toward. This study contributes an intersectional understanding of wellbeing in relation to identities of race, culture, age, disability, neurodiversity, and sociopolitical geographical context. The findings of this study can aid in practice, advocacy, and research to bolster the wellbeing of nonbinary people.

Matchmaking Methodology for Humanizing Transgender and Gender Diverse Health Research.

BACKGROUND: Current research on transgender and gender diverse (TGD) health focuses on a damage-centered approach to health outcomes, often further marginalizing and othering TGD individuals and their experiences. The Matchmaking Methodology is an approach that can be used to depathologizes and demedicalizes the TGD experience within research by decentering the cisgender gaze of TGD health research. OBJECTIVES: This article aims to provide researchers a humanizing approach to TGD health and wellness research by outlining the process of the matchmaking methodology that connects individuals to co-create research and knowledge from multiple standpoints-those of scholar, practitioner, and community member. METHODS: Shaped by an approach to co-editing a book on TGD health and social service best practices, the Matchmaking Methodology can be applied to research projects as an intentionally engage method that allows for the centering of TGD voices, the integration of practitioner expertise as well as that of academic scholars with community members through collaborative partnership to conduct and disseminate research. CONCLUSIONS: The matchmaking methodology for TGD health research can address some of the harmful and dehumanizing aspects that have historically dominated TGD-focused research. This approach focuses on the empowerment and critical consciousness of those participating in the collaborative partnership and centers their accountability to TGD individuals. Further, the involvement of practitioners and community members in the research process can translate to research that has a focus on real-life application and impact on best practices, interventions, and policy change.

Awareness of social care needs in people with epilepsy and intellectual disability.

BACKGROUND: Nearly a quarter of people with intellectual disability (ID) have epilepsy with large numbers experiencing drug-resistant epilepsy, and premature mortality. To mitigate epilepsy risks the environment and social care needs, particularly in professional care settings, need to be met. PURPOSE: To compare professional care groups as regards their subjective confidence and perceived responsibility when managing the need of people with ID and epilepsy. METHOD: A multi-agency expert panel developed a questionnaire with embedded case vignettes with quantitative and qualitative elements to understand training and confidence in the health and social determinants of people with ID and epilepsy. The cross-sectional survey was disseminated amongst health and social care professionals working with people with ID in the UK using an exponential non-discriminative snow-balling methodology. Group comparisons were undertaken using suitable statistical tests including Fisher's exact, Kruskal-Wallis, and Mann-Whitney. Bonferroni correction was applied to significant (p < 0.05) results. Content analysis was conducted and relevant categories and themes were identified. RESULTS: Social and health professionals (n = 54) rated their confidence to manage the needs of people with ID and epilepsy equally. Health professionals showed better awareness (p < 0.001) of the findings/recommendations of the latest evidence on premature deaths and identifying and managing epilepsy-related risks, including the relevance of nocturnal monitoring. The content analysis highlighted the need for clearer roles, improved care pathways, better epilepsy-specific knowledge, increased resources, and better multi-disciplinary work. CONCLUSIONS: A gap exists between health and social care professionals in awareness of epilepsy needs for people with ID, requiring essential training and national pathways.

Improving "Life Chances": Surveying the Anti-Transgender Backlash, and Offering a Transgender Equity Impact Assessment Tool for Policy Analysis.

Transgender inclusion within policy is critical yet often missing. We propose a policy tool to assesses human rights, access to resources and opportunities, language, and implications for transgender and nonbinary individuals. Acknowledging trans communities as standard policy practice can serve as an essential practice to shift dialogue and norms.

"Truly Listen to Us": Recommendations for Health Professionals to Bolster Wellbeing of Nonbinary Individuals.

Trans-affirming providers play significant roles in the health and wellbeing of nonbinary individuals. Yet, healthcare mistreatment is well-documented among gender-diverse patients, leading to clients withholding information and avoiding care for fear of experiencing bias. Concurrently, healthcare providers report feeling ill-equipped to serve nonbinary patients, often perpetuating cisnormative binary attitudes. The literature has established the challenges to accessing healthcare and the need for gender-affirming care. However, little is known about nonbinary people's perspectives on how best to deliver gender-affirming care that is inclusive of nonbinary patients. This participatory action PhotoVoice study identified community member recommendations for healthcare providers to bolster the wellbeing of nonbinary individuals through improved access to gender-affirming healthcare. Data were collected through group discussions, photography, and photo-elicitation interviews. Drawing upon research results, the authors identify recommendations for improving interpersonal care, increasing access to gender-affirming care, and advocating for related environmental and policy changes.

Zonisamide safety in pregnancy: Data from the UK and Ireland epilepsy and pregnancy register.

BACKGROUND: Animal data suggest teratogenic effects with zonisamide use and risk of pregnancy losses. Human data following zonisamide exposure are presently limited, but suggest low risk of malformation with elevated risk of low birth weight. OBJECTIVE: To calculate the major congenital malformation (MCM) rate of zonisamide in human pregnancy and assess for a signal of any specific malformation pattern and associations with birth weight. METHODS AND MATERIALS: Data were obtained from the UK and Ireland Epilepsy and Pregnancy register (UKIEPR) which is an observational, registration, and follow up study from December 1996 to July 2020. Eligibility criteria were use of zonisamide and to have been referred to the UKIEPR before the outcome of the pregnancy was known. Primary outcome was evidence of MCM. RESULTS: From December 1996 through July 2020 there were 112 cases of first trimester exposure to zonisamide, including 26 monotherapy cases. There were 3 MCM for monotherapy cases (MCM rate 13.0% (95% confidence interval 4.5-32.1)), and 5 MCM for polytherapy cases (MCM rate 6.9% (95% confidence interval 3.0-15.2)). While the median birth weight was on 71st and 44th centile for monotherapy and polytherapy cases respectively, there was a high rate of infants born small for gestational age (21% for both). CONCLUSION: These data raise concerns about a signal for potential teratogenicity with zonisamide in human pregnancy. Given the low numbers reported, further data will be required to adequately counsel women who use zonisamide in pregnancy.

Epilepsy, anti-seizure medication, intellectual disability and challenging behaviour - Everyone's business, no one's priority.

PURPOSE: People with Intellectual Disability (ID) and epilepsy are more likely to experience psychiatric conditions, challenging behaviour (CB), treatment resistance and adverse effects of anti-seizure medications (ASM) than those without. This population receives care from various professionals, depending on local care pathways. This study evaluates the training status, confidence, reported assessment and management practices of different professional groups involved in caring for people with ID, epilepsy and CB. METHODS: A cross sectional survey using a questionnaire developed by expert consensus which measured self-reported training status, confidence, and approaches to assessment and management of CB in people with ID and epilepsy was distributed to practitioners involved in epilepsy and/or ID. RESULTS: Of the 83 respondents, the majority had either a psychiatry/ID (n = 39), or Neurology/epileptology background (n = 31). Psychiatry/ID and Neurology/epileptology had similar confidence in assessing CB in ID-epilepsy cases, but Psychiatry/ID exhibited higher self-rated confidence in the management of these cases. While assessing and managing CB, Psychiatry/ID appeared more likely to consider mental health aspects, while Neurology/epileptology typically focused on ASM. CONCLUSION: Psychiatry/ID and Neurology/epileptology professionals had varying training levels in epilepsy, ID and CB, had differing confidence levels in managing this patient population, and considered different factors when approaching assessment and management. As such, training opportunities in ID should be offered to neurology professionals, and vice versa. Based on the findings, a best practice checklist is presented, which aims to provide clinicians with a structured framework to consider causal explanations for CB in this population.

Intersecting Experiences of Healthcare Denials Among Transgender and Nonbinary Patients.

INTRODUCTION: Transgender and nonbinary individuals experience high levels of health disparities and are more likely to experience denials of health care than their cisgender (nontransgender) counterparts. There is a lack of evidence on how healthcare denials vary by gender identity and other intersecting identity characteristics in the transgender and nonbinary populations. METHODS: Using data from the 2015 U.S. Trans Survey (n=27,715), multivariate logistic regressions were used to analyze (in 2019) the increased likelihood of experiencing denials of trans-related care and standard care across socioeconomic and identity characteristics among the transgender and nonbinary population, including race, age, educational attainment, disability, income, and gender identity. RESULTS: Almost 8% of the participants had been denied trans-specific health care, and >3% had been refused general health care. Transgender (compared with nonbinary), older, biracial, or multiracial, and lower-income participants, as well as those with less than a high school diploma and those with disabilities, were significantly more likely to experience refusal of care in general or trans-specific healthcare settings. CONCLUSIONS: There is a need for better training of healthcare providers to be inclusive and reduce denial rates of their transgender and nonbinary patients. However, it is also clear that current rates of denial must be considered through a whole-person lens, considering the experience of concurrent oppressed identities and recognizing the increased risk those with multiple marginalized identities experience in being denied needed health care.

One size does not fit all: differential transgender health experiences.

Transgender and nonbinary (TNB) adults face a multitude of challenges when attempting to access general health care. Issues include fear of discrimination and encounters with providers who are not familiar with treating the needs of this population. These challenges may result in the delay or denial of medically necessary care. This study explores nuanced experiences of gender identity and sexual orientation around accessing health care. Using a statewide sample of TNB individuals (N = 417), analyses include descriptive statistics and logistic regressions predicting delayed care due to fear of discrimination and having any medical intervention to understand the importance of transgender-inclusive care and other experiences across identities. Findings indicate differential experiences across gender identity, sexual orientation, and age. Access to a trans-inclusive primary care provider was one of the strongest indicators both for not delaying care due to fear of discrimination and having had a medical intervention. Providers should be provided with more nuanced training about being culturally responsive and aware of differences across sexual orientation within the TNB community. This will move toward ensuring not only increased access to needed care and medical interventions, but toward potentially lowering the rate of those who delay access to care due to fear of discrimination.

The reliable measurement of temporal trends in mortality attributed to epilepsy and status epilepticus in Northern Ireland between 2001-2015.

PURPOSE: Epilepsy mortality is of considerable public health concern, as a leading cause of premature neurological death. Recent English and Welsh mortality data suggests a falling mortality rate where epilepsy was the underlying cause of death, predominantly due to a reduction in status epilepticus (SE) mortality. We sought to validate this finding in Northern Ireland. METHODS: Officially recorded death certificate data related to epilepsy and SE were obtained from the Northern Ireland statistics and research agency. Data were analysed from 2001 to 2015. The outcomes were the age-adjusted mortality rate for epilepsy and SE. External validation of SE deaths was carried out using data from an intensive care national audit and research centre database. RESULTS: From 2001 until end of 2015, epilepsy was recorded at death certification in 1484 cases. 458 deaths were considered due to epilepsy. Among 75 in whom SE was recorded, SE was the cause of death in 46 patients. External validation found 103 total deaths related to SE in ICU departments in Northern Ireland, suggesting an overall under-ascertainment of officially recorded statistics. With respect to the 2013 European Standard Population, the mean age-adjusted mortality rate for epilepsy was 1.9 (95% C.I. 1.73-2.07) per 100,000 person years. For SE the mean age-adjusted mortality rate was 2.1 (95% C.I. 0.15-0.27) per 100,000 person years. CONCLUSIONS: Death certification in SE is likely to be an underestimate of the reality. Further efforts are urgently needed to determine the extent of SE-related deaths and all deaths in patients with epilepsy.

Hidden in plain sight: Non-convulsive status epilepticus-Recognition and management.

Non-convulsive status epilepticus (NCSE) is an electroclinical state associated with an altered level of consciousness but lacking convulsive motor activity. It can present in a multitude of ways, but classification based on the clinical presentation and electroencephalographic appearances assists in determining prognosis and planning treatment. The aggressiveness of treatment should be based on the likely prognosis and the underlying cause of the NCSE.

Pregnancy and epilepsy; meeting the challenges over the last 25 years: The rise of the pregnancy registries.

PURPOSE: Women with epilepsy (WWE), of all ages, have much to consider if their care is to be optimised and they are not to be denied the choices open to those without epilepsy. At no time is this more critical than during their child-bearing years when treatment decisions are complex. METHODS: In this article we will provide a personal commentary and review of the pertinent literature on how the management of WWE of childbearing years has changed over the last 25 years. As well as reflecting on the state of knowledge at the start of the 1990s and the approach to managing WWE at this time, we will demonstrate that in addition to much more information now being available that there has also been an attempt to standardise how WWE should be managed. RESULTS: As a means of achieving this increase in knowledge and standardisation of care, we argue that the various pregnancy registries have played a significant part in these positive developments. As vehicles for collecting clinically relevant data, they have provided information that has helped empower women and their health care providers to make sound clinical decisions, as well as highlighting the difficulties and unknowns. CONCLUSIONS: Still being active the pregnancy registries maintain a continued focus on the relevant issues relating to WWE.

Oxytetracycline age validation of an adult shortfin mako shark Isurus oxyrinchus after 6 years at liberty.

This study presents findings on an oxytetracycline injected adult male shortfin mako Isurus oxyrinchus recaptured in waters off of southern California after 6 years at liberty. During the period at liberty, the vertebral band-pair deposition rate was validated at one per year. This result indicates that from a time at or near sexual maturity, male I. oxyrinchus in the north-east Pacific Ocean exhibit a band-pair deposition rate of one band pair per year, while deposition rates for juveniles in the area have been validated at two band pairs per year.

Population pharmacokinetics of a single intramuscular administration of tulathromycin in adult desert tortoises (Gopherus agassizii).

Tulathromycin, a long acting macrolide antibiotic, has demonstrated efficacy against respiratory pathogens including Mycoplasma bovis and M. hyopneumoniae. A pharmacokinetic study was performed to evaluate the clinical applicability of tulathromycin in desert tortoises following a single intramuscular dose of 5 mg/kg. A single blood sample was collected from 110 different desert tortoises at 0.25, 0.5, 1, 4, 8, 24, 48, 72, 120, and 240 h following drug administration. Plasma concentrations of the parent form of tulathromycin were measured using liquid chromatography/mass spectrometry. As each tortoise was only bled once, pharmacokinetic parameters were initially estimated using a naïve pooled data approach. Given the variability in the data, population-based compartmental modeling was also performed. Using nonparametric population compartmental modeling, a two-compartment model with first-order absorption and elimination best fit the data. An observed Cmax of 36.2 ± 29.7 µg/mL was detected at 0.25 h (observed Tmax ). The elimination half-life (T½el ) was long (77.1 h) resulting in detectable plasma concentrations 240 h postadministration. This study represents a preliminary step in evaluating the utility of tulathromycin in chelonian species and demonstrates that population data modeling offers advantages for estimating pharmacokinetic parameters where sparse data sampling occurs and there is substantial variability in the data.

Acute neuromuscular respiratory failure: a population-based study of aetiology and outcome in Northern Ireland.

BACKGROUND: Acute neuromuscular respiratory failure (NMRF) is a life-threatening feature of a variety of neurological conditions that can present in extremis prior to the establishment of a definitive diagnosis, so early clinical decision making is difficult. Population-based data on the frequency, outcome and aetiological spectrum are lacking. OBJECTIVE: To establish accurate epidemiological descriptive statistics in this patient group. METHODS: The regional Intensive Care National Audit and Research Centre (ICNARC) database was searched for patients admitted with acute NMRF from 1/1/2000 to 31/12/2010. Demographics, diagnosis, length of intensive care unit (ICU) stay, follow-up and outcome (modified Rankin score (mRS)) were recorded. A comparison dataset of all non-NMRF neurology patients admitted to ICU was obtained. RESULTS: 55 patients were identified; age 17-88 (median 66 years), M:F ratio 1:1.5, incidence rate (IR) 2.81 (2.12 to 3.66) cases per million person-years and mortality rate (MR) 0.26 (0.08 to 0.60) deaths per million person-years. Causes included inflammatory neuropathy (65%), myasthenia gravis (18%), rhabdomyolysis (2%) and amyotrophic lateral sclerosis (9%), and 5% were undiagnosed. Follow-up ranged from 0 to 7 years (median 500.5 days); long-term mRS 1 (range 0-6). NMRF patients were older (p<0.0001), had longer ICU stay (p<0.0001), but significantly better outcome (p<0.0001) than 93 non-NMRF neurology patients requiring ICU admission. CONCLUSION: Inflammatory and degenerative neuromuscular conditions can present in acute NMRF. Long-term outcome is good and MR is low, and significantly better than in other neurology patients requiring ICU admission despite longer ICU stay.

The effect of socioeconomic status on treatment and pregnancy outcomes in women with epilepsy in Scotland.

Compared to the background population, people with epilepsy tend to have lower rates of education and employment, lower rates of marriage and childbearing, and lower overall socioeconomic status (SES). Disparities in epilepsy care based on sociodemographic factors have been observed in the literature, but it is not known whether any such disparities exist in the UK. The UK Epilepsy and Pregnancy Register is a prospective, observational, registration and follow-up study that was set up to determine the relative safety of all AEDs taken in pregnancy. Here, we report outcomes of registered pregnancies to women with epilepsy living in Scotland from December 1996 to June 2012, based on the degree of socioeconomic deprivation of their postcode area. The Scottish Index of Multiple Deprivation (SIMD) quintile scores from 2006 were used to determine degree of socioeconomic deprivation, and group 1 (most deprived) and group 5 (least deprived) were compared. There were 1526 pregnancies with complete outcome data to women living in Scotland. Of these, 1453 (95.1%) resulted in a live birth and 68 (4.7%) had a major congenital malformation (MCM). Postcodes could not be reliably identified or verified for an additional three women, who have been excluded from SIMD group analysis. Of all women included in this study, 32.4% were in group 1 and 13.2% in group 5. No difference in MCM rate was observed between the two groups (4.4% in group 1 compared to 4.7% in group 5, p=0.84). Women in group 5 were more likely to take preconceptual folic acid (56.8% compared to 14.0%, relative risk: 4.1; 95% CI: 3.1-5.2) and less likely to have generalized tonic-clonic seizures in pregnancy (13.0% compared to 29.2%, relative risk: 0.4; 95% CI: 0.3-0.7) than those in group 1. Women in group 5 were more likely to be on monotherapy regimens (80.2% compared to 65.9%, relative risk: 1.2; 95% CI: 1.1-1.3), less likely to be on valproate (19.5% compared to 28.0%, p=0.05), and more likely to be on lower doses of the drug (825.9mg/day compared to 1012.0mg/day, p=0.05) compared to those in group 1. Although no change in MCM rate was seen based on SES, differences in treatment between socioeconomic groups do exist, particularly for preconceptual folic acid consumption, AED regimen, and seizure frequency. Greater emphasis on the importance of preconceptual counseling, both to discuss AED choice and folic acid intake, would be of benefit, particularly to those living in areas of high socioeconomic deprivation, to improve equity of healthcare delivery for women with epilepsy in Scotland.

Stable isotopes and elasmobranchs: tissue types, methods, applications and assumptions.

Stable-isotope analysis (SIA) can act as a powerful ecological tracer with which to examine diet, trophic position and movement, as well as more complex questions pertaining to community dynamics and feeding strategies or behaviour among aquatic organisms. With major advances in the understanding of the methodological approaches and assumptions of SIA through dedicated experimental work in the broader literature coupled with the inherent difficulty of studying typically large, highly mobile marine predators, SIA is increasingly being used to investigate the ecology of elasmobranchs (sharks, skates and rays). Here, the current state of SIA in elasmobranchs is reviewed, focusing on available tissues for analysis, methodological issues relating to the effects of lipid extraction and urea, the experimental dynamics of isotopic incorporation, diet-tissue discrimination factors, estimating trophic position, diet and mixing models and individual specialization and niche-width analyses. These areas are discussed in terms of assumptions made when applying SIA to the study of elasmobranch ecology and the requirement that investigators standardize analytical approaches. Recommendations are made for future SIA experimental work that would improve understanding of stable-isotope dynamics and advance their application in the study of sharks, skates and rays.