Opportunities and challenges of mainstreaming disaster risk management in faith institutions.

The coronavirus disease 2019 (COVID-19) epidemic had created mayhem world over in the year 2020 and confirmed the need and urgency of equipping religious leaders with disaster risk management (DRM) knowledge and skills. Religious leaders are often expected to be among the first responders when disasters strike. This is especially the case in Africa where faith communities often have greater reach among the populace than the state itself. Using multifaceted methodology and purposive sampling interview analysis, this article shows that the responses of religious leaders in Africa, Zimbabwe in particular, to COVID-19 highlighted the urgency of adopting a more focussed and deliberate approach towards equipping religious leaders with DRM knowledge and skills. It further demonstrates that in some areas religious leaders responded effectively (communicating the right message, impact mitigation activities, etc.), in most other areas, they were as unprepared and in a state of paralysis as the rest of the populace. It would however, be grossly unfair to critique their response since most of them have never been exposed to the basic tenets of DRM, either in their formation or as part of life-long learning. Contribution: The article concludes by suggesting mainstreaming tragedy hazard reducing in the curricula of religious institutions for stoppage, mitigation and actual answer to current and future tragedies within communities.

Listening to Stakeholders' Voices on Funding Social Inclusion in Sport for People with Disabilities-Proposal for Criteria.

The value of sport is extensively documented; however, there are still groups who do not have the opportunity to enjoy the benefits of sport due to lack of investment, particularly important for people with disabilities. A gap persists in understanding the effectiveness of inclusive sport programs in addressing equity-related targets, particularly on the effective methods of financing inclusion in sport for individuals with disabilities. Therefore, providing a platform for stakeholders to express their perspectives becomes crucial. Through focus groups and the World Café approach, the aim of this study was to gather insights from athletes, parents, professionals, and sport club managers regarding the funding of inclusive sport for people with disabilities. A total of 72 participants took part in nine focus groups in Portugal, Slovenia, and Hungary: 27 athletes with disabilities, 22 coaches, other technicians and parents, and 23 club managers/directors. Findings were divided into five topics: (1) perspectives on current funding satisfaction; (2) perspectives on sources and criteria for funding; (3) perspectives on ideal funding; (4) perspectives on ideas to reach decision-makers; and (5) proposals on ideal criteria for funding. Based on these findings, six measurable criteria for fair funding allocation were suggested that could develop a properly weighted system of criteria for decision-makers to assess the allocation of funding among inclusive sport organizations with the potential to catalyze broader policy and societal changes. Additionally, there is a pressing need to develop a funding model for inclusive sport for individuals with disabilities.

Equity in HIV/AIDS services requires optimization of mainstreaming sectors in Ethiopia.

BACKGROUND: Mainstreaming HIV and AIDS across sectors is crucial to close the disparities in service provision and coverage. However, evidence has shown that certain social groups are left behind in receiving HIV/AIDS services. The objective of this study was twofold: to understand the reasons behind the existing inequities and to explore challenges of equity in HIV/AIDS services in the Amhara region of Ethiopia. METHODS: Twenty-two adults (aged 26-57 years) from eighteen sectors that are mainstreaming HIV and AIDS were purposefully selected until the point of saturation and participated in a semi-structured in-depth interview conducted between January 20 and February 17, 2023. Interviewees were asked to describe their mainstreaming experiences in equitable HIV/AIDS services, reflect on the challenges and barriers that impede equitable service provision, or explain the reasons behind the existence of inequity in HIV/AIDS services. The interviews were audio recorded, transcribed, translated, and iteratively analysed, with early analysis informing subsequent interviews. An inductive-reflexive thematic analysis was conducted, whereby themes and subthemes were identified, and the relationships between subthemes and patterns were critically reviewed. RESULTS: The challenges to equitable HIV/AIDS service provision were grouped into eight thematic areas: (1) changing contexts that shifts public and government attention to emerging diseases, war and political instability, and poverty; (2) leadership-related, such as the lack of supervision and monitoring, not politicising HIV/AIDS (not providing political attention to HIV/AIDS) and weak intersectoral collaboration; (3) financial constraints due to a random budgeting and contract interruption with non-governmental organisations (NGOs); (4) lack of resources due to scarcity and unfair distribution; (5) inadequate skilled personnel due to inadequate numbers and lack of continuous professional and career development; (6) lack of equity-related evidence-based tools and guidelines; (7) inadequate understanding of equity due to lack of training and misunderstanding, and lack of access to equity-oriented tools and guidelines; and (8) cultural norms, values, and perceptions. CONCLUSIONS: This study identified critical challenges faced in the equitable HIV/AIDS services provision. To achieve equity in HIV/AIDS services, mainstreaming sectors need to invest in mechanisms to sustain services in emergency situations; identify effective leaders to maintain collaboration, monitoring, and evaluation; institutionalise responsive budgeting and establish alternative funds to maintain non-governmental organisations initiatives; provide continuous up-to-date training and create a common evidence-sharing platform; implement proper recruitment, education, and professional development of HIV/AIDS focal persons; and promote and practice culturally safe care. It is, therefore, essential to optimise sectors that are mainstreaming HIV/AIDS and incorporate equity considerations in their strategic plans and working guidelines.

Preparing tomorrow's doctors for the genomics era: A nationwide survey of UK medical students.

Introduction: Low confidence in genomics knowledge among clinicians is a major barrier to the integration of genomics into mainstream medicine. Here, we assessed the genomics confidence of UK medical students approaching graduation. Methods: We conducted a web-based nationwide survey of UK medical students in the final 2 years of study where participants rated their confidence in genomics concepts. Results: In total, 145 medical students across 19 medical schools participated. The amount of genomics teaching students reported receiving was positively associated with genomics confidence, with the amount of basic science teaching having the strongest influence. While confidence was high in core genomics principles, such as the difference between DNA, genes and chromosomes (95%), confidence dropped in clinical applications of genomics - only 50% reported a good understanding of the genetic contribution to disease and 28% reported good knowledge of clinically used genomic tests. Overall, 59% reported a poor understanding of variant interpretation; however, over half who reported receiving 'lots' of genomic medicine teaching reported a good understanding of this topic. Conclusion: Gaps in genomics knowledge and drivers in confidence have been identified herein, highlighting the need for improvements in undergraduate genomics education to prepare future doctors to confidently practise in the genomics era.

Environmental education in Ethiopia: History, mainstreaming in curriculum, governmental structure, and its effectiveness: A systematic review.

Environmental education works to achieve the aims of environmental protection through improving a person's environmental awareness, knowledge, attitudes, skills, active engagement, and drive to better the environment. Through a systematic review of various published and unpublished papers, governmental documents, reports, policies, curriculums, and sample surveys of different governmental sectors, this systematic review aimed to ascertain the mainstreaming of both formal and informal environmental education in the curriculum, governmental structure, its effectiveness, and identify the gap that will need to be filled in Ethiopia. So, the objective of this review is to give a good synopsis of environmental education development, point out any gaps that will need to be filled, and provide insights into its future development. The legal environmental right established in the 1995 Ethiopian constitution served as the driving force behind official environmental education and environmental response. As a result, environmental science has been assigned as a separate or autonomous subject in grades 1-4, as well as in many higher education programs and specializations. On the other hand, in secondary cycle primary school (grades five up to eight) as well as secondary school; environmental education uses a cross-curricula approach in a few natural and social subjects, which is marginalized, and covers only a few topics (titles) of the subjects. Environmental clubs and experts in environmental matters are also available at all levels within the non-formal environmental education system, which spans the federal, regional, district, and other cross-sectional sectors. However, there is a gap due to a lack of professional human resources, monitoring, evaluation, commitment, and expanding best practices, as well as the absence of integration among sectors. As a result, the governmental structure, educational policy, and curriculum demand updates with adequate environmental education experts. Environmental content should be incorporated at the governmental structure and all educational levels with proper implementation, either as standalone subjects or as diffused or integrated on equal footing at every subject level. Additionally, more research on environmental education is required.

Media Influence on Intergenerational Attitudes toward Non-Conventional Sexual Behaviors in Contemporary China: Evidence from Chinese General Social Survey.

Objective: Within the context of rapid sociocultural transformation in Chinese society over recent decades, exploring intergenerational disparities in attitudes toward non-conventional sexual behaviors holds sociological significance. Employing a methodology akin to cultivation analysis, this study focuses on the potential influence of television and the internet in narrowing or widening attitudinal disparities between distinct age groups. This is achieved by comparing heavy users of these media to individuals with light media consumption. Materials and Methods: In the present study, we utilized the 2017 wave of the Chinese General Social Survey, a dataset that is representative of the national demographic of China. Our objective was to explore the potential influence of both traditional media (TV) and new media (the internet) consumption on the attitudes of Chinese adults toward three forms of non-conventional sexual behavior, namely premarital, extramarital, and same-sex behaviors. Results: Firstly, compared to television, the internet is more likely to contribute to the liberalization of sexual attitudes, though this influence is age sensitive. Secondly, regarding the attitudes toward premarital sex and same sex behaviors, television tends to sustain or create consensus across different generations, whereas the internet tends to widen attitudinal gaps. Lastly, probably due to the moralized nature of extramarital sex in the Chinese context, both television and the internet maintain or produce the conservative consensus, though heavy television viewing could widen the attitudinal gap between young people and the other two age groups. Discussion and Conclusion: Our study reveals that for premarital sex and same-sex behaviors, heavy television viewing tends to foster or sustain intergenerational consensus, while frequent internet usage tends to augment intergenerational divergence or erode intergenerational agreements. However, the media's impact on intergenerational differences in attitudes toward extramarital sex exhibits distinctive features, likely stemming from the deeply moralized nature of extramarital affairs within Chinese society. To conclude, by conducting a comparative examination of various media landscapes, our research offers a mediated perspective that aids in comprehending the disparities in attitudes toward sexual behaviors across different generations in contemporary China.

Mainstreaming in parallel with ovarian cancer tumor testing to improve genetic testing uptake.

OBJECTIVES: Although genetic testing (GT) is universally recommended for patients with epithelial ovarian cancer (EOC), rates are low (34%). In 1/2019, we implemented mainstreaming-GT in parallel with tumor testing via MSK-IMPACT within oncology clinics. We sought to determine GT rates pre/post-mainstreaming and patient characteristics associated with GT. METHODS: Patients with newly diagnosed EOC seen at our institution from 7/1/2015-3/31/2022 were included. Clinical data were abstracted including social determinants of health (SDOH) variables, race/ethnicity, marital status, insurance, language, comorbidities, employment, and Yost index, a measure of socioeconomic status. GT rates were calculated overall and pre-/post-mainstreaming (1/2019). Logistic regression models were fit to identify variables associated with GT. RESULTS: Of 1742 patients with EOC, 1591 (91%) underwent GT. Rates of GT increased from 87% to 95% after mainstreaming (p < 0.001). Among 151 patients not undergoing GT, major reasons were lack of provider recommendation (n = 76, 50%) and logistical issues (n = 38, 25%) with few declining (n = 14, 9%) or having medical complications preventing GT (n = 7, 4.6%). High-grade serous histology, advanced stage (III/IV), and having a spouse/partner were associated with increased GT uptake (p < 0.01). Among SDOH variables, there were no differences by insurance, Yost score, language, comorbidities, employment, or race/ethnicity. In multivariable models, likelihood of GT increased with mainstreaming, even after adjustment for histology, stage, and marital status (OR 3.77; 95% CI: 2.56-5.66). CONCLUSIONS: Mainstreaming increased the likelihood of GT in patients with EOC. We found lower testing rates in patients without partners/spouses, non-high-grade serous histology, and early-stage disease, representing potential areas for future interventions.

Improving strategic planning for nature: Panacea or pandora's box for the built and natural environment?

This paper assesses how strategic planning for nature can be improved for England's built and natural environment using mainstreaming and landscape-scale concepts. Whilst both concepts feature in academic literature, there has been limited attention on their role as catalytic agents for strategic planning. Addressing this gap, evidence is used from two stakeholder workshops involving 62 senior policy experts managing a range of operational and hypothetical strategic spatial planning challenges. The results reveal a significantly weakened strategic planning arena characterised by policy disintegration, short termism and uncertainty. Key findings highlight the fallacy of pursuing strategic planning for nature in isolation from wider policy integration fusing environmental, economic and social components from the outset. Current barriers to progress include institutional inertia, technocratic vocabularies and neoliberalist priorities exacerbated by a weak underlying theory. Conversely opportunities for mainstreaming processes may help knowledge generation and exchange within transdisciplinary partnerships, whilst landscape scale thinking can improve understanding of issues using natures inherent geometry transforming processes and outcomes. The paper recommends the adoption of strategic planning pathways using mainstreaming and landscape-scale approaches working in tandem. Whilst focused on the English context, our findings are transferable to other planning systems in the Global North, especially those championing neoliberal market led policies.

Evaluation of a Training Program on Gender Mainstreaming in Health Research Evaluation at the Senegalese National Research Ethics Committee.

Health research must be of high ethical and scientific quality and consider the needs and experiences of women, men, and nonbinary individuals. National Research Ethics Committees (RECs) are in a strategic position to impede sex- and gender-blind research. In 2020 and 2021, training programs on gender mainstreaming and sex and gender approaches in research evaluation were launched in Senegal. They were evaluated through a mixture of qualitative and quantitative methods. Knowledge acquisition was 16.67%, 8.54%, and 28.42% for the trainees of 2021, 2020, and those who attended the training in both years, respectively. Gender mainstreaming was reported as pertinent in research ethics by 74% of participants. This training is expected to catalyze gender-transformative research ethics in West Africa.

Implementing mainstream genetic counseling within the area-wide network of the German Consortium Hereditary Breast and Ovarian Cancer (GC-HBOC): Satisfaction of primary care providers with the provided state-of-the-art training by the Cologne Center.

The German Cancer Society (Deutsche Krebsgesellschaft DKG) has published a position paper to address the challenges of cancer patient care in the era of genomic medicine. The German Consortium Hereditary Breast and Ovarian Cancer (GC-HBOC) has implemented this recommendation in its care concept for families at risk. Core elements are the outcome-oriented evaluation of structured and standardized clinical measures and reporting recommendations derived therefrom to primary care providers and patients. A cross-sector network with certified breast cancer and gynecological cancer centers was founded in 2015, starting from the Cologne Center of the GC-HBOC. To guarantee the knowledge transfer for mainstream genetic counseling, the Cologne center has established an educational program for physicians and specialized nurses in order to pilot trans-sectoral knowledge transfer on risk assessment and risk-stratified care. It consists of face-to-face lectures with written knowledge test, attending a genetic case conference and genetic counseling sessions with the opportunity to counsel under supervision. The lectures were accompanied by a structured evaluation of the participants' satisfaction and feedback of the needs in mainstream genetic counseling. Thereby, the network ensures that genetic counseling and testing is provided according to state-of-the-art knowledge and allows physicians to participate in knowledge-generating care outside the university setting and patients to receive care close to home. After multiple feedback cycles to improve the educational program, the GC-HBOC, in cooperation with the German Cancer Society, has now adopted this concept and developed a common and uniform online curriculum funded by the Federal Ministry of Health. https://www.krebsgesellschaft.de/fortbildung-familiaerer-krebs.html.

An Australian mainstream genetic testing program: Clinicians views about current and future practices.

PURPOSE: Germline genetic testing results can guide treatment decisions for oncology patients and are now offered to many cancer patients. Mainstream testing refers to genetic testing arranged by a non-genetics specialist. This repeated cross-sectional study aimed: (1) to capture clinician views on the existing mainstreaming genetic testing program for ovarian, breast, prostate, and endometrial cancer patients, and (2) to ascertain the interest of clinicians to consider changing practice to adopt mainstream testing. METHODS: Mainstreaming has occurred since 2015 for patients with ovarian and some breast cancer patients, expanding to include prostate cancer patients in 2019, and endometrial cancer patients in 2020. Two web-based surveys were administered within two health districts, covering seven hospitals in NSW. RESULTS: Fifty-four clinicians (70% response rate) participated. Clinicians who had arranged mainstream genetic testing (n = 30) were overall satisfied (76%), viewed the process as time-efficient and accessible for patients, and desired continuation of the program. Of those clinicians yet to engage in the program (n = 24), 88% expressed an interest in learning about mainstream testing. These clinicians identified time constraints, maintenance of current genetic knowledge, and completing the consenting and counseling process as barriers to mainstreaming. Future mainstreaming models are discussed. CONCLUSION: From the clinician's perspective, the mainstreaming program is considered a desirable pathway for germline testing of oncology patients. Access to ongoing education and resources is needed for the ongoing success of the program.

Patient decision aids in mainstreaming genetic testing for women with ovarian cancer: A prospective cohort study.

OBJECTIVE: To evaluate patient preference for short (gist) or detailed/extensive decision aids (DA) for genetic testing at ovarian cancer (OC) diagnosis. DESIGN: Cohort study set within recruitment to the Systematic Genetic Testing for Personalised Ovarian Cancer Therapy (SIGNPOST) study (ISRCTN: 16988857). SETTING: North-East London Cancer Network (NELCN) population. POPULATION/SAMPLE: Women with high-grade non-mucinous epithelial OC. METHODS: A more detailed DA was developed using patient and stakeholder input following the principles/methodology of IPDAS (International Patients Decision Aids Standards). Unselected patients attending oncology clinics evaluated both a pre-existing short and a new long DA version and then underwent mainstreaming genetic testing by a cancer clinician. Appropriate inferential descriptive and regression analyses were undertaken. MAIN OUTCOME MEASURES: Satisfaction, readability, understanding, emotional well-being and preference for long/short DA. RESULTS: The mean age of patients was 66 years (interquartile range 11), and 85% were White British ethnicity. Of the participants, 74% found DAs helpful/useful in decision-making. Women reported higher levels of satisfaction (86% versus 58%, p < 0.001), right amount of information provided (76.79% versus49.12%, p < 0.001) and improved understanding (p < 0.001) with the long DA compared with the short DA. There was no statistically significant difference in emotional outcomes (feeling worried/concerned/reassured/upset) between 'short' and 'long' DA; 74% of patients preferred the long DA and 24% the short DA. Patients undergoing treatment (correlation coefficient (coef) = 0.603; 95% CI 0.165-1.041, p = 0.007), those with recurrence (coef = 0.493; 95% CI 0.065-0.92, p = 0.024) and older women (coef = 0.042; 95% CI 0.017-0.066, p = 0.001) preferred the short DA. Ethnicity did not affect outcomes or overall preference for long/short DA. CONCLUSIONS: A longer DA in OC patients has higher satisfaction without increasing emotional distress. Older women and those undergoing treatment/recurrence prefer less extensive information, whereas those in remission preferred a longer DA.

Produzindo um currículo escolar para diversidade sexual e de gênero em um instituto federal / Producing a school curriculum for sexual and gender diversity in a federal institute / Elaboración de un currículo escolar para la diversidad sexual y de género en un instituto federal

Resumo: Esta pesquisa objetiva evidenciar como é produzido um currículo escolar que valorize a diversidade sexual e de gênero em um instituto federal. Para tanto, utiliza-se o conceito de trajetórias de vida como disparador teórico, metodológico e político dos objetivos desta pesquisa. Foram entrevistados 16 sujeitos que têm sua trajetória profissional marcada por ocuparem, em algum momento, uma representação dentro dos Núcleos de Gênero e Diversidade Sexual do Instituto Federal Sul-rio-grandense. A análise do material de pesquisa permite evidenciar que esses núcleos articulam processos políticos para a movimentação de diferentes mecanismos pedagógicos em prol do questionamento e/ou da manutenção de redes de sentidos sobre a diversidade. Por fim, compreende-se que esses núcleos operam espaços de abertura e fortalecimento político-pedagógico dos debates de gênero e de sexualidade nos institutos federais.

Resumen: Esta investigación tiene como objetivo resaltar cómo se produce en un instituto federal un currículo escolar que valora la diversidad sexual y de género. Para ello, se utiliza el concepto de trayectorias de vida como detonante teórico, metodológico y político de los objetivos de esta investigación. Fueron entrevistados 16 sujetos cuya trayectoria profesional estuvo marcada por haber sido, en algún momento, representante dentro de los Centros de Género y Diversidad Sexual del Instituto Federal de Rio Grande do Sul. El análisis del material de investigación muestra que estos centros articulan procesos políticos para el movimiento de diferentes mecanismos pedagógicos a favor de cuestionar y/o mantener redes de significados sobre la diversidad. Finalmente, se entiende que estos centros operan espacios para abrir y fortalecer debates político-pedagógicos sobre género y sexualidad en los institutos federales.

Abstract: This research aims to highlight how a school curriculum that values sexual and gender diversity is produced in a federal institute. To this end, the concept of life trajectories is used as a theoretical, methodological and political trigger for the objectives of this research. 16 subjects were interviewed whose professional trajectory were marked by having, at some point in their lives, been a representative within the Gender and Sexual Diversity Centers of the Federal Institute of Rio Grande do Sul. The analysis of the research material concludes that these centers articulate political processes towards the development of different pedagogical mechanisms in favor of questioning and/or maintaining networks of meanings about diversity. Finally, it is understood that the Gender and Sexual Diversity Centers operate spaces for opening and strengthening political-pedagogical debates on gender and sexuality in federal institutes in general.

Diversidad de género en la vejez / Gender diversity in old age

Objetivo: Analizar las publicaciones científicas relacionadas con la diversidad de género en la vejez en América Latina, a través de una revisión de la literatura, con el fin de identificar objetivos, conclusiones y metodologías de abordaje, así como los aspectos que pueden generar interés para el desarrollo de investigaciones sobre la temática. Metodología: La revisión se realizó en las bases de datos que integran EBSCO, además de la Biblioteca Cochrane y PubMed. Se incluyeron publicaciones que implicaban explícitamente a personas mayores y diversidad de género en su título y/o resultados relevantes en esta población, y que se hayan realizado en el contexto latinoamericano, en el período comprendido entre los meses de enero de 2012 y diciembre de 2022. Resultados: Se encontraron un total de 86 artículos, de los que 11 formaron la muestra final. El país con mayor número de publicaciones fue Brasil, predominando las metodologías cualitativas en el caso de artículos originales. Se identificaron diferentes aspectos relacionados con la interseccionalidad y la temática de estudio. Conclusiones: Se requiere mayor abordaje de la temática en el contexto latinoamericano, con el fin de generar políticas públicas en la vejez, desde las que se reconozca a las personas mayores pertenecientes a las disidencias sexuales.(AU)

Objective: To analyze scientific publications related to gender diversity in old age in Latin America through a literature search to identify objectives, conclusions, and approach methodologies, as well as those aspects that may generate interest for the development of research on the subject. Methodology: The literature search included the databases of EBSCO, the Cochrane Library, and PubMed. In addition, publications that explicitly focus on the elderly population and gender diversity were considered, including those that present relevant results on these topics conducted in the Latin American context from January 2012 to December 2022. Results: There were 86 articles, of which 11 were part of the final sample. Most of the publications were from Brazil, with a predominance of qualitative methodologies in the case of original articles. It was identified different aspects related to intersectionality and the theme of the study. Conclusions: It is necessary to approach the issue in the Latin American context, to generate public policies on old age, which recognize older persons belonging to sexual dissident groups.(AU)

A Severity Comparison between Italian and Israeli Rett Syndrome Cohorts.

Rett syndrome (RTT) is a neurodevelopmental disorder marked by profound cognitive, communication, and motor impairments. Despite identified genotype/phenotype connections, the extent of clinical severity varies even among individuals sharing the same genetic mutation. Diverse sociocultural environments, such as the level of inclusivity of the scholar system, the time spent with family, and the intensity of the rehabilitative intervention provided, might influence their development diversely. This study examines the severity of RTT in people in Italy and Israel, countries with distinct contradictory approaches to caring for those with intricate disabilities, across two age groups. Data from 136 Italian and 59 Israeli girls and women with RTT were assessed and divided into two age categories: above and below 12 years. The RARS, a standardized RTT-specific clinical severity tool, was administered. Despite no differences in age and genetic characteristics, the Italian group showed better scores in the RARS motor and disease-related characteristics areas in both age groups. Moreover, the young Italian participants gathered better total RARS scores and emotional and behavioral characteristics area scores. Furthermore, the young group showed significantly less scoliosis, foot problems, and epilepsy than the older group. These findings endorse the inclusion of girls with RTT in the regular schooling system for a limited daily period, investing in high activity levels within the home and community environments, and suggest continuously providing the person with daily occasions of physical activity and socialization.

Adolescents and Young Adults Evaluating a Website for Affective-Sexual Information and Education: Multicenter Cross-Sectional Study.

BACKGROUND: Today's young people have long been demanding a paradigm shift in the emotional and sexual education they receive. While for them, affective-sexual and gender diversity is already a reality, the sexual and reproductive health professionals they encounter lack sufficient training. The digital devices and affective-sexual education websites aimed at today's young people must also be thoroughly evaluated. The website Sexe Joves is a website on sexuality by the Department of Health of the Government of Catalonia (Spain). It is designed for people aged 14 to 25 years. It currently needs to undergo a process of evaluation. Affective-sexual education aimed at young people must stem from their participation and the whole range of sexual and gender diversity in order to reach the entire population equally. OBJECTIVE: The aim of this study was to evaluate the website Sexe Joves as a source of affective-sexual health information, education, and communication for young people. It takes into account sex, gender identity, sexual orientation, socioeconomic status, and location within Catalonia (urban, semiurban, and rural areas). METHODS: This was an observational, descriptive, and cross-sectional study that forms part of a larger mixed methods study. An ad hoc questionnaire was used to collect data. In total, 1830 participants were included. The study was carried out simultaneously in all the territorial administrations of Catalonia. RESULTS: Almost 30% of the sample obtained were young people who experience affective-sexual and gender diversity. Of those surveyed, only 14.2% (n=260) said they were familiar with the website and of these, 6.5% said they used it (n=114). The website content rated most indispensable was on sexual abuse, harassment, and violence, followed by sexually transmitted infections; 70.5% (n=1200) reported that they visit pornographic websites. CONCLUSIONS: The results of this study will contribute to the design of new strategies for the website Sexe Joves, a public health resource, in order to improve affective sexual education for young people. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.3390/ijerph192416586.

Tailoring evidence into action: using a codesign approach for biodiversity information in the Tropical Andes / Toma de decisiones basadas en la evidencia: un enfoque de codiseño para la información sobre biodiversidad en los Andes tropicales / Tomada de decisão baseada em evidências: uma abordagem de co-design para informações sobre biodiversidade nos Andes tropicais

Biodiversity conservation is a complex and transdisciplinary problem that requires engagement and cooperation among scientific, societal, economic, and political institutions. However, historical approaches have often failed to bring together and address the needs of all relevant stakeholders in decision­making processes. The Tropical Andes, a biodiversity hotspot where conservation efforts often conflict with socioeconomic issues and policies that prioritize economic development, provides an ideal model to develop and implement more effective approaches. In this study, we present a co­design approach that mainstreams and improves the flow of biodiversity information in the Tropical Andes, while creating tailored outputs that meet the needs of economic and societal stakeholders. We employed a consultative process that brought together biodiversity information users and producers at the local, national, and regional levels through a combination of surveys and workshops. This approach identified priority needs and limitations of the flow of biodiversity information in the region, which led to the co­design of user­relevant biodiversity indicators. By leveraging the existing capacities of biodiversity information users and producers, we were able to co­design multiple biodiversity indicators and prioritize two for full implementation ensuring that the data was findable, accessible, interoperable, and reusable based on the FAIR principles. This approach helped address limitations that were identified in the stakeholder engagement process, including gaps in data availability and the need for more accessible biodiversity information. Additionally, capacity­building workshops were incorporated for all producers of biodiversity information involved, which aimed to not only improve the current flow of biodiversity information in the region but also facilitate its future sustainability. Our approach can serve as a valuable blueprint for mainstreaming biodiversity information and making it more inclusive in the future, especially considering the diverse worldviews, values, and knowledge systems between science, policy, and practice.

La conservación de la biodiversidad es un problema complejo y transdisciplinario que requiere el compromiso y la cooperación entre instituciones científicas, sociales, económicas y políticas. Sin embargo, los enfoques tradicionales/convencionales  a menudo no logran  reunir y abordar las necesidades de todos los actores relevantes en los procesos de toma de decisiones. Los Andes tropicales, un área clave  de biodiversidad donde los esfuerzos de conservación a menudo entran en conflicto con cuestiones socioeconómicas y políticas que priorizan el desarrollo económico, proporcionan un modelo ideal para desarrollar e implementar enfoques más efectivos. En este estudio, presentamos un enfoque co-diseño que integra y mejora el flujo de información sobre biodiversidad en los Andes tropicales, creando resultados personalizados que satisfacen las necesidades, tanto económicas como sociales, de las partes interesadas. Empleamos un proceso de consulta que reunió a usuarios y productores de información sobre biodiversidad a nivel local, nacional y regional, a través de encuestas y talleres. Este enfoque ha permitido identificar necesidades prioritarias y limitaciones del flujo de información sobre biodiversidad en la región; lo cual llevó al codiseño de indicadores de biodiversidad relevantes para los usuarios. Aprovechando las capacidades existentes de los usuarios y productores de información sobre biodiversidad, pudimos co-diseñar múltiples indicadores de biodiversidad y priorizar dos de estos para su implementación completa, asegurando que los datos sean localizables, accesibles, interoperables y reutilizables, según los principios FAIR. Este enfoque ayudó a abordar las limitaciones que se identificaron en el proceso de participación de las partes interesadas; incluidas las brechas en la disponibilidad de datos y la necesidad de información sobre biodiversidad más accesible. Además, se incorporaron talleres de desarrollo de capacidades para todos los productores de información sobre biodiversidad involucrados, los cuales apuntaron no sólo a mejorar el flujo actual de información sobre biodiversidad en la región, sino también facilitar su sostenibilidad futura. Nuestro enfoque puede servir como un modelo valioso para incorporar la información sobre biodiversidad y hacerla más inclusiva en el futuro; especialmente si consideramos las diversas perspectivas globales, valores y sistemas de conocimiento implicados en las interacciones entre  la ciencia, la política y su aplicación práctica.

A conservação da biodiversidade é um problema complexo e transdisciplinar que requer compromisso e cooperação entre instituições científicas, sociais, económicas e políticas. No entanto, as abordagens tradicionais/convencionais muitas vezes não conseguem reunir e responder às necessidades de todos os intervenientes relevantes nos processos de tomada de decisão. Os Andes tropicais, uma área chave para a biodiversidade onde os esforços de conservação entram frequentemente em conflito com questões socioeconómicas e políticas que dão prioridade ao desenvolvimento económico, fornecem um modelo ideal para desenvolver e implementar abordagens mais eficazes. Neste estudo, apresentamos uma abordagem de co-design que integra e melhora o fluxo de informações sobre biodiversidade nos Andes tropicais, criando resultados personalizados que atendem às necessidades, tanto econômicas quanto sociais, das partes interessadas. Empregamos um processo de consulta que reuniu usuários e produtores de informações sobre biodiversidade nos níveis local, nacional e regional, por meio de pesquisas e workshops. Esta abordagem permitiu identificar necessidades prioritárias e limitações do fluxo de informação sobre a biodiversidade na região; o que levou à concepção conjunta de indicadores de biodiversidade relevantes para os utilizadores. Aproveitando as capacidades existentes dos utilizadores e produtores de informação sobre biodiversidade, fomos capazes de conceber em conjunto vários indicadores de biodiversidade e priorizar dois deles para implementação total, garantindo que os dados sejam localizáveis, acessíveis, interoperáveis ​​e reutilizáveis, de acordo com os princípios FAIR. Esta abordagem ajudou a resolver as limitações identificadas no processo de envolvimento das partes interessadas; incluindo lacunas na disponibilidade de dados e a necessidade de informações mais acessíveis sobre biodiversidade. Além disso, foram incorporados workshops de capacitação para todos os produtores de informação sobre biodiversidade envolvidos, que visaram não só melhorar o fluxo actual de informação sobre biodiversidade na região, mas também facilitar a sua sustentabilidade futura. A nossa abordagem pode servir como um modelo valioso para incorporar informações sobre biodiversidade e torná-las mais inclusivas no futuro; especialmente se considerarmos as diversas perspectivas globais, valores e sistemas de conhecimento envolvidos nas interações entre ciência, política e sua aplicação prática.

Genetic services survey-experience of people with rare diseases and their families accessing genetic services in the Irish Republic.

Irish Health Service objectives state that patients with rare diseases should have timely access to genomic diagnostics with appropriate pre and post-test counselling. However, waiting times for clinical genetics outpatient appointments, during the study period, were up to two years as staffing levels remain low. A targeted public online survey was conducted in January 2022 to capture the experiences of Rare Disease families trying to access genetic testing and clinical genetic clinics in the Irish Republic. Irish patients experience significant waiting times to access clinical genetic services and self-report anxiety and stress, related to delayed access to diagnosis, clarity around recurrence risk and follow-up management. This negatively impacts personal decisions around family planning, education and employment and has a significant impact on family members seeking clarity on their own risk. Mainstream genetic testing activity is significant. Families report concern over the competency of health care professionals arranging and delivering genetic results and delays in accessing clinical genetics expertise to take them through the clinical implications. Timely access to clinical genetics expertise is important to ensure families with rare diseases have an appropriate understanding of the medical and reproductive implications of a genetic diagnosis and access to relevant care pathways. A national framework to develop competency in genomic literacy for health-care professionals including a national genetic test directory may be beneficial. Clinical genetics teams require ongoing support and investment to ensure the delivery of a safe and effective service for Irish families with rare diseases.

From diagnosis of colorectal cancer to diagnosis of Lynch syndrome: The RM Partners quality improvement project.

AIM: The UK National Institute for Health and Care Excellence guideline DG27 recommends universal testing for Lynch syndrome (LS) in all newly diagnosed colorectal cancer (CRC) patients. However, DG27 guideline implementation varies significantly by geography. This quality improvement project (QIP) was developed to measure variation and deliver an effective diagnostic pathway from diagnosis of CRC to diagnosis of LS within the RM Partners (RMP) West London cancer alliance. METHOD: RM Partners includes a population of 4 million people and incorporates nine CRC multidisciplinary teams (MDTs), overseen by a Pathway Group, and three regional genetic services, managing approximately 1500 new CRC cases annually. A responsible LS champion was nominated within each MDT. A regional project manager and nurse practitioner were appointed to support the LS champions, to develop online training packages and patient consultation workshops. MDTs were supported to develop an 'in-house' mainstreaming service to offer genetic testing in their routine oncology clinics. Baseline data were collected through completion of the LS pathway audit of the testing pathway in 30 consecutive CRC patients from each CRC MDT, with measurement of each step of the testing pathway. Areas for improvement in each MDT were identified, delivered by the local champion and supported by the project team. RESULTS: Overall, QIP measurables improved following the intervention. The Wilcoxon signed rank test revealed significant differences with strong effect sizes on the percentile of CRC cases undergoing mismatch repair (MMR) testing in endoscopic biopsies (p = 0.008), further testing with either methylation or BRAF V600E (p = 0/03) and in effective referral for genetic testing (from 10% to 74%; p = 0.02). During the QIP new mainstreaming services were developed, alongside the implementation of systematic and robust testing pathways. These pathways were tailored to the needs of each CRC team to ensure that patients with a diagnosis of CRC had access to testing for LS. Online training packages were produced which remain freely accessible for CRC teams across the UK. CONCLUSION: The LS project was completed by April 2022. We have implemented a systematic approach with workforce transformation to facilitate identification and 'mainstreamed' genetic diagnosis of LS. This work has contributed to the development of a National LS Transformation Project in England which recommends local leadership within cancer teams to ensure delivery of diagnosis of LS and integration of genomics into clinical practice.

Competencies of the UK nursing and midwifery workforce to mainstream genomics in the National Health Service: the ongoing gap between perceived importance and confidence in genomics.

The United Kingdom is recognised worldwide as a leader in genomics. The use of genomic technologies in the National Health Service (NHS) is expected to deliver faster and more accurate diagnoses, supporting personalized treatments to improve patient outcomes. The ambition of embedding genomic medicine in the diagnostic pathway requires involvement of the front-line clinical workforce, known as 'mainstreaming'. Nurses and midwives are the largest professionally qualified workforce in the National Health Service thus, it is anticipated that they will play key roles in mainstreaming. This study investigated the level of competence/confidence of practicing nurses and midwives to support mainstreaming and their perception of the importance of genomics in delivery of patient care. A literature review of genetics/genomics competency frameworks, semi structured interviews of lead nurses and stakeholders were conducted to identify relevant competencies needed for mainstreaming. These were then used to survey four cohorts of nurses (n = 153) across England in four consecutive years (2019-22). The confidence level of these professionals in all aspects of genomics was 2.07 ± 0.47 measured on a 5-point Likert scale (1"Low confidence"; 5 "High confidence"). Intriguingly, these professionals all appreciated the importance of genomics for their patient care (4.01 ± 0.06). Whilst the importance scores increased, the confidence scores declined at the time when major genomic transformation took place in the NHS (e.g.: launch of the Genomic Medicine Service, the National Genomic Test Directory). To bridge this gap, relevant genomic education can play key roles. However, nurses and midwives were found to be grossly underrepresented in formal genomic education courses offered by Health Education England Genomics Education Programme since 2014. This may result from the lack of direct applicability of the currently offered courses for their practice and role. Thematic analysis revealed that nurses and midwives wish to support their patients by providing more information on their condition, inheritance, and treatment options in combination with the use of relevant genetic counselling skills. This study identified easy to follow competencies for embedding genomics into routine clinical care. We propose a training programme that addresses the gap that nurses and midwives currently have, to enable them to harness genomic opportunities for patients and services.