Community-based conservation with formal protection provides large collateral benefits to Amazonian migratory waterbirds.

Populations of migratory waterbirds are facing dramatic declines worldwide due to illegal hunting, habitat loss and climate change. Conservation strategies to reverse these trends are imperative, especially in tropical developing countries, which almost invariably allocate insufficient levels of investment for environmental protection. Here, we compared the effectiveness of sustainable-use Protected Areas (PAs) and Community-based Conservation (CBC) arrangements for the conservation of migratory waterbirds that breed on seasonal riverine sandy beaches in Brazilian Amazonia. We modeled local population responses of four migratory waterbird species on 155 beaches along a ~1,600 km section of a major tributary of the Amazon, as a function of community enforcement, official protection status, human pressure and landscape features. We show that 21 community-protected beaches within the study area host more than 80% of all sampled birds. Black Skimmers showed the most dramatic response, with breeding numbers 135-fold larger in CBC arrangements compared to beaches with no official protection status. The same pattern was observed for nesting Large-Billed and Yellow-Billed Terns. For the Near Threatened Orinoco Goose, PA status was the strongest predictor of local population size. These dramatic results demonstrate the value of protected refugia, achieved through the concerted action of participating local communities, to support breeding populations of key waterbird species. This highly-effective and low-cost conservation model can potentially be replicated in other regions of the developing world experiencing increasingly intensive exploitation of riverine natural resources.

INSAR Special Interest Group Report: Stakeholder Perspectives on Priorities for Future Research on Autism, Sexuality, and Intimate Relationships.

The number of empirical studies on sexuality and intimate relationships in autistic people has grown over the last years with the increasing awareness that sexuality and intimate relationships are an important part of life and well-being for autistic people. Further, expression and enjoyment of sexuality is a fundamental, basic human right. This paper reports on needs for future research in this area based on the input of autistic adults, researchers, and other stakeholders (e.g., parents and professionals). Utilizing the nominal group technique, 65 individuals participated in eight groups in which they brainstormed on research questions they deemed most important. Responses were categorized into themes and ranked according to importance based on the level of priority attributed by participants. Findings suggest that future research should focus on developing ways to support sexual and relationship well-being and getting a better understanding of sexuality and relationships in autistic people. Also, attention was drawn to the need for studying the influence of stereotypical societal views, and stigma. Finally, the importance of participatory research to include perspectives of autistic people in research and practice was stressed. LAY SUMMARY: Sexuality and romantic relationships are part of daily life for most people, including autistic people. For this study, groups of autistic people, professionals, and autism researchers discussed which research on autism, sexuality, and relationships is needed and can help autistic adolescents and adults. The group discussions revealed that more research is needed on how to support well-being relating to romantic relationships and sexuality in autistic people and how the people around them can contribute to this. Therefore, we also need to learn more about how autistic people of all ages and throughout their lives experience sexuality and relationships. Finally, the need for attention to the role of stereotypical ideas and stigma about autism, sexuality, and relationships was pointed out. Attention to the experiences of autistic people can help professionals, researchers, and policy makers to offer and organize attuned support and do relevant research. Autism Res 2020, 13: 1248-1257. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC.

Future Directions for Incorporating Intersectionality Into Quantitative Population Health Research.

Intersectionality, an analytical approach rooted in Black feminist theory and praxis, has become more widely used in population health research. The majority of quantitative population health studies have used intersectionality as a theoretical framework to investigate how multiple social identities rather than social inequalities simultaneously influence health inequities.Although a few researchers have developed methods to assess how multiple forms of interpersonal discrimination shape the health of multiply marginalized groups and others have called for the use of multilevel modeling to examine the role of intersecting dimensions of structural discrimination, critical qualitative, multidisciplinary, and community-based participatory research approaches are needed to more fully incorporate the core ideas of intersectionality-including social inequality, relationality, complexity, power, social context, and social justice-into quantitative population health research studies or programs.By more comprehensively capturing and addressing the influence of intersecting structural factors, social and historical processes, and systems of power and oppression on the health of multiply marginalized individuals, quantitative population health researchers will more fully leverage intersectionality's transformational power and move one step closer to achieving social justice and health equity.

Posibilidades y retos de la investigación cualitativa en cuidados / Possibilities and challenges of qualitative investigation on care

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A Community-Based Participatory Approach to the Development and Implementation of an HIV Health Behavior Intervention: Lessons Learned in Navigating Research and Practice Systems from Project HAPPY.

African American young adults continue to be disproportionately affected by HIV/AIDS. The Southern United States has been particularly affected by HIV/AIDS, accounting for 52% of the new HIV diagnoses. Efforts to reduce the burden of HIV among young African Americans are still needed. Project HAPPY (HIV/AIDS Prevention Project for Youth) was developed and implemented using a community-based participatory research (CBPR) model. There were several challenges that arose during implementation of Project HAPPY that included recruitment, partner engagement, and retention. The realities of implementing an HIV prevention project with urban adolescents is discussed in detail and strategies to overcome these challenges, using a CBPR approach are described. The lessons learned from CBPR implementation of Project HAPPY include: (1) Create a feedback loop to receive community input and guidance throughout the life of the project; (2) Periodic community inventory to determine who is providing similar services to avoid saturation; (3) Prepare for Alternative Partner Engagement; (4) Consult (formally and informally) with the Institutional Review Board prior to submitting proposed changes to avoid unnecessary delays in implementation; (5) Select meaningful incentives for your priority population; and (6) Maintain multiple points of contact with community partners to mitigate the effects of staff turnover.

Advancing Community-Based Participatory Research to Address Health Disparities in Hawai'i: Perspectives from Academic Researchers.

Community-based participatory research (CBPR) continues to be recognized as an effective research approach in which academic researchers work in partnership with communities to address health disparities. Although the literature suggests benefits associated with CBPR, more needs to be done to advance CBPR to ultimately reduce health disparities. Hawai'i presents a research-rich opportunity for CBPR because of its ethnic diversity and geographic location, resulting in close-knit communities with unique experiences and concerns. This study aims to better understand the experiences of academic researchers who are conducting CBPR in Hawai'i and their perceptions of its benefits and challenges as well as recommendations to advance the field. Twelve academic researchers with Hawai'i-based CBPR experience were interviewed. Four major themes emerged from their responses: the importance of prioritizing relationship-building; reciprocal learning and other benefits of CBPR; navigating the tensions between CBPR and funding priorities; and building an academic setting that supports CBPR. Increasing awareness of CBPR and its benefits, as well as transforming the culture in all spaces where CBPR occurs may maximize its potential to ultimately promote health equity.

Insights in Public Health: Hana Pu No Ke Ola O Hana ("Working Together for the Health of Hana"): Our 14-year CBPR Journey.

There are substantial and persistent health disparities among Native Hawaiians that are best addressed through multilevel socio-ecological approaches, which are tailored to the needs of the community. Partnerships that link academic investigators with grass roots community members have the potential to profoundly reduce health disparities and improve health and wellness by increasing the capacity of community-based organizations to provide leadership in health advocacy, support community health promotion, and participate in health research. We describe a 14-year partnership to reduce Native Hawaiian health disparities between investigators from The Queen's Medical Center and University of Hawai'i John A. Burns School of Medicine (QMC-JABSOM) and community members in Hana, a geographically isolated, underserved, rural community with the second largest concentration of Native Hawaiians in the state. Our relationship started as an investigator-initiated, National Institutes of Health-sponsored study to explore familial cardiomyopathy, and transitioned to a community-based project that combined community cardiovascular health screening fairs with a qualitative research study to understand attitudes towards genetic research. Most recently, QMC-JABSOM has partnered closely with Ma Ka Hana Ka 'Ike, an award-winning construction skills training program for at-risk youth in Hana, to develop innovative, culturally based interventions to improve health and well-being among Native Hawaiians using principles of community-based participatory research.

A randomized controlled trial to evaluate the effectiveness of a staff training program to implement consumer directed care on resident quality of life in residential aged care.

BACKGROUND: Residential Aged Care Facilities (RACFs) are moving towards a Consumer Directed Care (CDC) model of care. There are limited examples of CDC in ageing research, and no evaluation of a comprehensive CDC intervention in residential care was located. This study will implement and evaluate a staff training program, Resident at the Center of Care (RCC), designed to facilitate and drive CDC in residential care. METHODS: The study will adopt a cluster randomized controlled design with 39 facilities randomly allocated to one of three conditions: delivery of the RCC program plus additional organizational support, delivery of the program without additional support, and care as usual. A total of 834 staff (22 in each facility, half senior, half general staff) as well as 744 residents (20 in each facility) will be recruited to participate in the study. The RCC program comprises five sessions spread over nine weeks: Session 1 clarifies CDC principles; Sessions 2 to 5 focus on skills to build and maintain working relationships with residents, as well as identifying organizational barriers and facilitators regarding the implementation of CDC. The primary outcome measure is resident quality of life. Secondary outcome measures are resident measures of choice and control, the working relationship between resident and staff; staff reports of transformational leadership, job satisfaction, intention to quit, experience of CDC, work role stress, organizational climate, and organizational readiness for change. All measures will be completed at four time points: pre-intervention, 3-months, 6-months, and 12-month follow-up. Primary analyses will be conducted on an intention to treat basis. Outcomes for the three conditions will be compared with multilevel linear regression modelling. DISCUSSION: The RCC program is designed to improve the knowledge and skills of staff and encourage transformational leadership and organizational change that supports implementation of CDC. The overarching goal is to improve the quality of life and care of older people living in residential care. TRIAL REGISTRATION: ACTRN12618000779279; Registered 9 May 2018 with the Australian and New Zealand Clinical Trials Registry (ANZCTR; http://www.anzctr.org.au/ ).

Evidencia sobre la participación comunitaria en salud en el contexto español: reflexiones y propuestas. Informe SESPAS 2018 / Evidence of community engagement in health in Spain: thoughts and proposals. SESPAS Report 2018

La participación comunitaria se está convirtiendo en fundamental para desarrollar e impulsar acciones de promoción de la salud de ámbito local. Sin embargo, se necesitan herramientas para la implementación de estrategias e intervenciones con enfoque participativo que estén basadas en la evidencia. El objetivo de este artículo es reflexionar sobre la evidencia existente en España sobre participación comunitaria en salud partiendo de los resultados del Proyecto AdaptA GPS (Adapta y Aplica Guías de Promoción de la Salud), cuyo primer objetivo ha sido la adaptación de la Guía NICE NG44 sobre participación comunitaria para mejorar la salud y el bienestar, y para reducir las desigualdades. Se describe la metodología del proceso de adaptación de dicha guía y se propone una reflexión a partir de los resultados de la revisión de la evidencia en participación comunitaria procedente del contexto español. Nos preguntamos si la limitada evidencia identificada se debe a las dificultades para evaluar esas intervenciones o al limitado interés y la escasez de recursos destinados a ellas. Se proponen dos recomendaciones: promover más y mejores investigaciones, fomentando la formación, la investigación y la evaluación vinculada al desarrollo de intervenciones de participación comunitaria en salud, e impulsar más y mejores intervenciones utilizando herramientas basadas en la evidencia con un mayor esfuerzo en apoyar y mantener en el tiempo estos procesos. Generar mayor evidencia vinculada a la práctica en participación comunitaria en salud en España nos permitirá compartir procesos exitosos de participación comunitaria y fomentar la transferencia de buenas prácticas en diferentes contextos

Community engagement has recently become key in the development of health promotion programmes at a local level. However, evidence-based tools are necessary to implement strategies and interventions with a participatory approach. The objective of this article is to reflect on the existing evidence in Spain about community engagement in health, drawing on the results of the AdaptA GPS Project (Adapt and Apply Health Promotion Guidelines), intended to adapt NICE guideline NG44 on community engagement to improve health and wellbeing, and to reduce inequalities. After describing the methodology for the adaptation process, we discuss some of the findings from the review of the evidence on community engagement in the Spanish context. We ask whether the limited evidence identified is due to the difficulties involved in evaluating these interventions, or to the lack of interest in these programmes and the limited resources and funding dedicated to them. Two recommendations are proposed: to promote more and better research, fostering training, research and evaluation towards the development of community engagement interventions in health, and to promote more and better interventions using evidence-based tools, supporting their long-term sustainability by taking into account the time needed for community engagement programmes to be properly developed. Generating more evidence on community engagement in health in Spain will allow us to learn from successful processes and encourage the transfer of good practice to different contexts

Implementación local de la Estrategia de Promoción de la Salud y Prevención en el Sistema Nacional de Salud. Informe SESPAS 2018 / Local implementation of the Strategy for Health Promotion and Prevention in the Spanish National Health System. SESPAS Report 2018

En el marco de la Estrategia de Promoción de la Salud y Prevención en el Sistema Nacional de Salud, la implementación local es una de las líneas consideradas prioritarias. Dicha implementación propone la adhesión voluntaria de las entidades locales para trabajar en promoción de la salud y prevención mediante la realización de dos acciones: la constitución de una mesa de coordinación intersectorial y la identificación de recursos para la promoción de la salud y la prevención en el municipio. La Guía para la Implementación Local de la Estrategia fue aprobada en 2015 por el Consejo Interterritorial del Sistema Nacional de Salud. A fecha de junio de 2018, se han adherido a ella 261 entidades locales, se han identificado 7072 recursos y 9183 actividades, y se han creado 132 mesas intersectoriales

Within the framework of the Prevention and Health Promotion Strategy of the Spanish National Health System, local implementation is considered a priority line of action. Local implementation proposes the voluntary commitment of local entities to the Strategy in order to move forward health promotion and prevention through the implementation of two actions: the creation of a coordinating inter-sectoral body and the identification of local resources for health promotion and prevention. The Guideline for the Local Implementation of the Strategy was adopted in 2015 by the Inter-territorial Council of the National Health System. By June 2018, 261 local entities had committed to the Prevention and Health Promotion Strategy, 7072 resources and 9183 activities had been identified, and 132 inter-sectoral bodies had been created

The complexities and contradictions in participatory research with vulnerable children and young people: A qualitative systematic review.

Participatory research carried out by or with children, has become a well-established and valuable part of the research landscape investigating children's lives, views and needs. So too has a critical agenda about its ethical implications and methodological complexities. One criticism is that the involvement of children who may be considered 'vulnerable' or 'marginalised' has been slower to take root within mainstream participatory practice. This means that there has been less focus on how groups such as disabled children or children affected by abuse or neglect can shape and challenge adult-dominated types of knowledge and decision-making that are likely to affect them. This article reports on the findings of a qualitative systematic literature review of thirteen contemporary papers. The review was undertaken by a UK team in 2017. The included articles explored some core ethical and methodological issues involved in carrying out participatory research with vulnerable children and young people. It reports on three themes: 1) The extent to which participatory spaces could recalibrate opportunities and attention given to marginalised and silenced groups; 2) The ways in which these children and young people could develop skills and exercise political and moral agency through participatory activity, and, 3) How to facilitate meaningful engagement with individuals and groups and reconcile this with a critical appreciation of the important but limited nature of research as means of political and social change. The review provides a unique, contemporary analysis of participatory research with vulnerable children, illuminating in particular its conceptual complexities and contradictions, particularly regarding power, empowerment and voice. Its overall utility and interest is augmented by the disciplinary and geographical breadth of the included articles, rendering it relevant to many contexts and countries.

Digital Media, Participatory Politics, and Positive Youth Development.

Research on the social implications of adolescent technology use often focuses on identifying and preventing risk. However, adolescence is also a time of rapidly expanding capacities, expectations of autonomy, and identity exploration. In this article, we highlight findings from research in the field of youth civic development, which point to the importance of youth civic engagement during adolescence for later adult civic engagement as well as for promoting positive developmental outcomes. Researchers suggest that certain forms of Internet use (such as information seeking, social network site use, media production, and participation in online communities) promote civic engagement and that digital tools play an important role in youth empowerment efforts. In this article, we suggest a need for greater attention to efforts to promote digital media competencies among adolescents and for greater coordination of research on adolescent risk and adolescent autonomy and empowerment related to Internet use.

Finding Your Way™: a collaborative approach to increase awareness of missing person events among persons with dementia.

AIM: To describe an innovative community-wide program aimed at increasing awareness of risks of missing person events among persons with dementia targeting various cultural groups and to present preliminary evaluation findings. METHODS: Review of program records to describe program implementation and a community partner survey. RESULTS: Over 23 months, 386 partnerships were established to implement the program; 941 awareness-raising sessions were conducted reaching 23,495 individuals. There is an upward trend in number of sessions conducted in various languages and attendance. Community partners' (>85%) responded positively to the program and consultation process. CONCLUSION: This partnership experience demonstrates the effectiveness of a collaborative approach to the development and widespread dissemination of information and resource materials aimed at ensuring the safety of a vulnerable population.

Co-design and implementation research: challenges and solutions for ethics committees.

BACKGROUND: Implementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials. DISCUSSION: Implementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question framing, research design and delivery, and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict (and, some would say, inflexible) requirements of ethics committees were developed for a purpose - to protect participants from harm and help ensure the rigour and transparency of studies. We propose some guiding principles to help square this circle. First, ethics committees should acknowledge and celebrate the diversity of research approaches, both formally (through training) and informally (by promoting debate and discussion); without active support, their members may not understand or value participatory designs. Second, ground rules should be established for co-design applications (e.g. how to judge when 'consultation' or 'engagement' becomes research) and communicated to committee members and stakeholders. Third, the benefits of power-sharing should be recognised and credit given to measures likely to support this important goal, especially in research with vulnerable communities. Co-design is considered best practice, for example, in research involving indigenous peoples in New Zealand, Australia and Canada.

Working to Eliminate Cancer Health Disparities from Tobacco: A Review of the National Cancer Institute's Community Networks Program.

INTRODUCTION: In 2005, the National Cancer Institute funded the Community Networks Program (CNP), which aimed to reduce cancer health disparities in minority racial/ethnic and underserved groups through community-based participatory research, education, and training. The purpose of this study was to describe the CNP model and their tobacco-related work in community-based research, education, and training using a tobacco disparities research framework. METHODS: We conducted a comprehensive review of the CNP tobacco-related activities including publications, published abstracts, research activities, trainee pilot studies, policy-related activities, educational outreach, and reports produced from 2005-2009. Two authors categorized the tobacco-related activities and publications within the framework. RESULTS: Although there was no mandate to address tobacco, the CNPs produced 103 tobacco-related peer-reviewed publications, which reflects the largest proportion (12%) of all CNP cancer-related publications. Selected publications and research activities were most numerous under the framework areas "Psychosocial Research," "Surveillance," "Epidemiology," and "Treatment of Nicotine Addiction." Thirteen CNPs participated in tobacco control policymaking in mainstream efforts that affected their local community and populations, and 24 CNPs conducted 1147 tobacco-related educational outreach activities. CNP activities that aimed to build research and infrastructure capacity included nine tobacco-related pilot projects representing 16% of all CNP cancer-related pilot projects, and 17 publications acknowledging leveraged partnerships with other organizations, a strategy encouraged by the CNP. CONCLUSIONS: The CNP is a promising academic-community model for working to eliminate tobacco-related health disparities. Future efforts may address scientific gaps, consider collaboration across groups, assess the extent of operationalizing community-based participatory research, and improve common tracking measures.

Successful strategies to engage research partners for translating evidence into action in community health: a critical review.

OBJECTIVES: To undertake a critical review describing key strategies supporting development of participatory research (PR) teams to engage partners for creation and translation of action-oriented knowledge. METHODS: Sources are four leading PR practitioners identified via bibliometric analysis. Authors' publications were identified in January 1995-October 2009 in PubMed, Embase, ISI Web of Science and CAB databases, and books. Works were limited to those with a process description describing a research project and practitioners were first, second, third, or last author. RESULTS: Adapting and applying the "Reliability Tested Guidelines for Assessing Participatory Research Projects" to retained records identified five key strategies: developing advisory committees of researchers and intended research users; developing research agreements; using formal and informal group facilitation techniques; hiring co-researchers/partners from community; and ensuring frequent communication. Other less frequently mentioned strategies were also identified. CONCLUSION: This review is the first time these guidelines were used to identify key strategies supporting PR projects. They proved effective at identifying and evaluating engagement strategies as reported by completed research projects. Adapting these guidelines identified gaps where the tool was unable to assess fundamental PR elements of power dynamics, equity of resources, and member turnover. Our resulting template serves as a new tool to measure partnerships.