“It’s just another added layer of difficulty”: Language access equity and inclusion in pediatric interpreted medical encounters — Provider and interpreter perspectives

Limited English proficient or language-diverse patients and families in pediatric interpreted medical encounters (IME) are susceptible to health disparities and inequities in the US compared to English proficient patients and families in language-concordant medical encounters. Policies to improve access to language services intend to bridge this gap, yet evidence suggests that significant inequities still exist. This study explores perspectives of interpreters and pediatric critical care medical providers to better understand the complexities of IME in pediatric settings. Qualitative data were analyzed from two interview studies with medical interpreters and providers using thematic coding and inductive analysis. Several factors were identified by both interpreters and medical providers that negatively affected communication, equity, and inclusion. These included systems-level factors (e.g., time constraints and language variety), interpersonal factors (e.g., difficulties with communication and mistrust), and intrapersonal factors (e.g., implicit biases and judgements). These results highlight multiple layers of potential inequities which adversely affect patients and families in pediatric IME.; En los encuentros médicos interpretados (EMI) en pediatría en los EE.UU., las personas y familiares que acuden a una consulta médica con un dominio limitado del inglés o con otras lenguas están expuestas a perjuicios y desigualdades en materia de salud, en comparación con aquellas que dominan el inglés y que asisten a las consultas en su idioma. Las políticas para mejorar el acceso a los servicios lingüísticos pretenden salvar esta brecha, pero los datos indican que siguen dándose desigualdades significativas. Este estudio explora las perspectivas de intérpretes y de proveedores de atención sanitaria crítica pediátrica para comprender mejor las complejidades de los EMI en contextos pediátricos. Se analizan los datos cualitativos procedentes de dos estudios con entrevistas a intérpretes y proveedores de atención sanitaria utilizando codificación temática y análisis inductivo. Los resultados muestran que ambos grupos detectan varios factores que afectan negativamente a la comunicación, la equidad y la inclusión. Estos factores se localizan a nivel sistémico (como son las limitaciones de tiempo y la variedad lingüística), interpersonal (por ejemplo, las dificultades de comunicación y la desconfianza) y a nivel intrapersonal (como son los sesgos implícitos y los prejuicios). Estos resultados ponen de manifiesto las múltiples capas de desigualdades potenciales que perjudican a pacientes y familiares en los EMI en pediatría.; En les trobades mèdiques interpretades (EMI) en pediatria als EUA, les persones i familiars que acudeixen a una consulta mèdica amb un domini limitat de l'anglés o amb llengües diferents a aquesta s’exposen a perjudicis i desigualtats en matèria de salut, en comparació amb les que dominen l'anglès i que assisteixen a les consultes en el seu idioma. Les polítiques per millorar l'accés als serveis lingüístics pretenen salvar aquesta escletxa, però les dades indiquen que continuen donant-se desigualtats significatives. Aquest estudi explora les perspectives d’intèrprets i de proveïdors d’atenció sanitària crítica en pediatria per comprendre millor les complexitats de les EMI en contextos pediàtrics. S’analitzen les dades qualitatives procedents de dos estudis amb entrevistes a intèrprets i proveïdors d’atenció sanitària utilitzant una codificació temàtica i una anàlisi inductiva. Els resultats mostren que tots dos grups detecten diversos factors que afecten negativament la comunicació, l'equitat i la inclusió. Aquests factors es localitzen a nivell sistèmic (com són les limitacions de temps i la varietat lingüística), interpersonal (per exemple, les dificultats de comunicació i la desconfiança) i a nivell intrapersonal (com ara els biaixos implícits i els prejudicis). Aquests resultats palesen les múltiples capes de desigualtats potencials que perjudiquen pacients i familiars als EMI en pediatria

Adolescent Experiences with Self-Asphyxial Behaviors and Problematic Drinking in Emerging Adulthood

Self-asphyxial behavior to achieve a euphoric high (The Choking Game; TCG), occurs most often during early adolescence. Participants in TCG often engage in other risky behaviors. This study investigated the relationship between prior experience with TCG and problematic drinking behaviors in emerging adulthood. Emerging adults, 18 to 25 years old (N = 1248), 56% female, and 78% Caucasian completed an online survey regarding knowledge of and prior engagement in TCG and current drinking behaviors. Participants who personally engaged in TCG during childhood/adolescence or were familiar with TCG reported significantly more problematic drinking behaviors during emerging adulthood. Those present when others engaged in TCG but resisted participation themselves reported significantly less current problematic drinking behaviors than those who participated, but significantly more current problematic drinking behaviors than those never present. Emerging adults with increased social familiarity with TCG during adolescence endorsed greater problematic drinking behaviors. Results suggest resistance skills may generalize across time/activities

The architectures of media power: editing, the newsroom, and urban public space

This paper considers the relation of the newsroom and the city as a lens into the more general relation of production spaces and mediated publics. Leading theoretically from Lee and LiPuma’s (2002) notion of ‘cultures of circulation’, and drawing on an ethnography of the Toronto Star, the paper focuses on how media forms circulate and are enacted through particular practices and material settings. With its attention to the urban milieus and orientations of media organizations, this paper exhibits both affinities with but also differences to current interests in the urban architectures of media, which describe and theorize how media get ‘built into’ the urban experience more generally. In looking at editing practices situated in the newsroom, an emphasis is placed on the phenomenological appearance of media forms both as objects for material assembly as well as more abstracted subjects of reflexivity, anticipation and purposiveness. Although this is explored with detailed attention to the settings of the newsroom and the city, the paper seeks to also provide insight into the more general question of how publicness is material shaped and sited

Genome Rearrangements Detected by SNP Microarrays in Individuals with Intellectual Disability Referred with Possible Williams Syndrome

Intellectual disability (ID) affects 2-3% of the population and may occur with or without multiple congenital anomalies (MCA) or other medical conditions. Established genetic syndromes and visible chromosome abnormalities account for a substantial percentage of ID diagnoses, although for approximately 50% the molecular etiology is unknown. Individuals with features suggestive of various syndromes but lacking their associated genetic anomalies pose a formidable clinical challenge. With the advent of microarray techniques, submicroscopic genome alterations not associated with known syndromes are emerging as a significant cause of ID and MCA.High-density SNP microarrays were used to determine genome wide copy number in 42 individuals: 7 with confirmed alterations in the WS region but atypical clinical phenotypes, 31 with ID and/or MCA, and 4 controls. One individual from the first group had the most telomeric gene in the WS critical region deleted along with 2 Mb of flanking sequence. A second person had the classic WS deletion and a rearrangement on chromosome 5p within the Cri du Chat syndrome (OMIM:123450) region. Six individuals from the ID/MCA group had large rearrangements (3 deletions, 3 duplications), one of whom had a large inversion associated with a deletion that was not detected by the SNP arrays.Combining SNP microarray analyses and qPCR allowed us to clone and sequence 21 deletion breakpoints in individuals with atypical deletions in the WS region and/or ID or MCA. Comparison of these breakpoints to databases of genomic variation revealed that 52% occurred in regions harboring structural variants in the general population. For two probands the genomic alterations were flanked by segmental duplications, which frequently mediate recurrent genome rearrangements; these may represent new genomic disorders. While SNP arrays and related technologies can identify potentially pathogenic deletions and duplications, obtaining sequence information from the breakpoints frequently provides additional information

A study of referral bias in NMOSD and MOGAD cohorts.

BACKGROUND: Neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) are rare disorders often seen in highly specialized services or tertiary centres. We aimed to assess if cohort characteristics depend on the origin of the referral catchment areas serviced by our centre (i.e. local, regional or national). METHODS: Retrospective cohort study using a national referral service database including local (Oxfordshire), regional (Oxfordshire and neighbouring counties), and national patients. We included patients with the diagnosis of NMOSD, seronegative NMOSD or MOGAD, followed at the Oxford Neuromyelitis Optica Service. RESULTS: We included 720 patients (331 with MOGAD, 333 with aquaporin-4 antibody (AQP4)-NMOSD, and 56 with seronegative NMOSD. The distribution of diagnoses was similar across referral cohorts. There were no significant differences in the proportion of pediatric onset patients, sex, or onset phenotype; more White AQP4-NMOSD patients were present in the local than in the national cohort (81 % vs 52 %). Despite no differences in follow-up time, more relapsing MOGAD disease was present in the national than in the local cohort (42.9 % vs. 24 %, p = 0.029). CONCLUSION: This is the first study assessing the impact of potential referral bias in cohorts of NMOSD or MOGAD. The racial difference in the AQP4-NMOSD cohorts likely reflects the variation in the population demographics rather than a referral bias. The over representation of relapsing MOGAD patients in the national cohort probably is a true referral bias and highlights the need to analyze incident cohorts when describing disease course and prognosis. It seems reasonable therefore to compare MOGAD and NMOSD patients seen withing specialised centres to general neurology services, provided both use similar antibody assays

BAC-FISH refutes report of an 8p22–8p23.1 inversion or duplication in 8 patients with Kabuki syndrome

BACKGROUND: Kabuki syndrome is a multiple congenital anomaly/mental retardation syndrome. The syndrome is characterized by varying degrees of mental retardation, postnatal growth retardation, distinct facial characteristics resembling the Kabuki actor's make-up, cleft or high-arched palate, brachydactyly, scoliosis, and persistence of finger pads. The multiple organ involvement suggests that this is a contiguous gene syndrome but no chromosomal anomalies have been isolated as an etiology. Recent studies have focused on possible duplications in the 8p22–8p23.1 region but no consensus has been reached. METHODS: We used bacterial artificial chromosome-fluorescent in-situ hybridization (BAC-FISH) and G-band analysis to study eight patients with Kabuki syndrome. RESULTS: Metaphase analysis revealed no deletions or duplications with any of the BAC probes. Interphase studies of the Kabuki patients yielded no evidence of inversions when using three-color FISH across the region. These results agree with other research groups' findings but disagree with the findings of Milunsky and Huang. CONCLUSION: It seems likely that Kabuki syndrome is not a contiguous gene syndrome of the 8p region studied

Multi-centre parallel arm randomised controlled trial to assess the effectiveness and cost-effectiveness of a group-based cognitive behavioural approach to managing fatigue in people with multiple sclerosis

Abstract (provisional) Background Fatigue is one of the most commonly reported and debilitating symptoms of multiple sclerosis (MS); approximately two-thirds of people with MS consider it to be one of their three most troubling symptoms. It may limit or prevent participation in everyday activities, work, leisure, and social pursuits, reduce psychological well-being and is one of the key precipitants of early retirement. Energy effectiveness approaches have been shown to be effective in reducing MS-fatigue, increasing self-efficacy and improving quality of life. Cognitive behavioural approaches have been found to be effective for managing fatigue in other conditions, such as chronic fatigue syndrome, and more recently, in MS. The aim of this pragmatic trial is to evaluate the clinical and cost-effectiveness of a recently developed group-based fatigue management intervention (that blends cognitive behavioural and energy effectiveness approaches) compared with current local practice. Methods This is a multi-centre parallel arm block-randomised controlled trial (RCT) of a six session group-based fatigue management intervention, delivered by health professionals, compared with current local practice. 180 consenting adults with a confirmed diagnosis of MS and significant fatigue levels, recruited via secondary/primary care or newsletters/websites, will be randomised to receive the fatigue management intervention or current local practice. An economic evaluation will be undertaken alongside the trial. Primary outcomes are fatigue severity, self-efficacy and disease-specific quality of life. Secondary outcomes include fatigue impact, general quality of life, mood, activity patterns, and cost-effectiveness. Outcomes in those receiving the fatigue management intervention will be measured 1 week prior to, and 1, 4, and 12 months after the intervention (and at equivalent times in those receiving current local practice). A qualitative component will examine what aspects of the fatigue management intervention participants found helpful/unhelpful and barriers to change. Discussion This trial is the fourth stage of a research programme that has followed the Medical Research Council guidance for developing and evaluating complex interventions. What makes the intervention unique is that it blends cognitive behavioural and energy effectiveness approaches. A potential strength of the intervention is that it could be integrated into existing service delivery models as it has been designed to be delivered by staff already working with people with MS. Service users will be involved throughout this research. Trial registration: Current Controlled Trials ISRCTN7651747

Photolithographic patterning of conducting polyaniline films via flash welding

In this work, two significant advances in photolithographic patterning of polyaniline (PANI) films are reported. Firstly, flash welding was enhanced through the use of polymeric substrates, enabling complete penetration of the welding of PANI films with thicknesses ranging from 5 to over 14 mu m, significantly thicker than reported previously. Masking of parts of the PANI films during flash welding enabled the formation of adjacent conducting and insulating regions as the welding changes the electrical properties of the film. Raman spectroscopy was used to determine the sharpness of these edges, and indicated that the interface between the flash welded and masked regions of the PANI films was typically less than 15 mu m wide. Secondly, using longpass filters, light with a wavelength less than 570 nm was found not to contribute to the welding process. This was confirmed by the use of a 635 nm laser diode for welding the PANI films. This novel approach enabled patterning of PANI films using a direct writing technique with a narrow wavelength light source