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1.
Int J Equity Health ; 23(1): 131, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38951827

RESUMO

Health inequalities amplified by the COVID-19 pandemic have disproportionately affected racialized and equity-deserving communities across Canada. In the Municipality of Peel, existing data, while limited, illustrates that individuals from racialized and equity-deserving communities continue to suffer, receive delayed care, and die prematurely. In response to these troubling statistics, grassroots community advocacy has called on health systems leaders in Peel to work with community and non-profit organizations to address the critical data and infrastructure gaps that hinder addressing the social determinants of health in the region. To support these advocacy efforts, we used a community-based participatory research approach to understand how we might build a data collection ecosystem across sectors, alongside community residents and service providers, to accurately capture the data about the social determinants of health. This approach involved developing a community engagement council, defining the problem with the community, mapping what data is actively collected and what is excluded, and understanding experiences of sociodemographic data collection from community members and service providers. Guided by community voices, our study focused on sociodemographic data collection in the primary care context and identified which service providers use and collect these data, how data are used in their work, the facilitators and barriers to data use and collection. Additionally, we gained insight into how sociodemographic data collection could be respectful, safe, and properly governed from the perspectives of community members. From this study, we identify a set of eight recommendations for sociodemographic data collection and highlight limitations. This foundational community-based work will inform future research in establishing data governance in partnership with diverse and equity-deserving communities.


Assuntos
COVID-19 , Pesquisa Participativa Baseada na Comunidade , Determinantes Sociais da Saúde , Humanos , Canadá , COVID-19/epidemiologia , SARS-CoV-2 , Equidade em Saúde , Disparidades nos Níveis de Saúde , Pandemias , População Urbana
2.
J Community Health ; 2024 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-38958892

RESUMO

Data-informed decision making is a critical goal for many community-based public health research initiatives. However, community partners often encounter challenges when interacting with data. The Community-Engaged Data Science (CEDS) model offers a goal-oriented, iterative guide for communities to collaborate with research data scientists through data ambassadors. This study presents a case study of CEDS applied to research on the opioid epidemic in 18 counties in Ohio as part of the HEALing Communities Study (HCS). Data ambassadors provided a pivotal role in empowering community coalitions to translate data into action using key steps of CEDS which included: data landscapes identifying available data in the community; data action plans from logic models based on community data needs and gaps of data; data collection/sharing agreements; and data systems including portals and dashboards. Throughout the CEDS process, data ambassadors emphasized sustainable data workflows, supporting continued data engagement beyond the HCS. The implementation of CEDS in Ohio underscored the importance of relationship building, timing of implementation, understanding communities' data preferences, and flexibility when working with communities. Researchers should consider implementing CEDS and integrating a data ambassador in community-based research to enhance community data engagement and drive data-informed interventions to improve public health outcomes.

3.
J Appl Res Intellect Disabil ; 37(5): e13272, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38966968

RESUMO

BACKGROUND: Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence-based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health. METHODS: The Sexual Health Equity Project team used a Community-Based Participatory Research approach to develop a four-module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers. RESULTS: The resulting sexual consent intervention, Ask Me First-Choices, is comprised of four modules covering topics including definition of sexual consent; decision-making strategies and practice; communicating consent and refusal, identifying situations of consent and non-consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning. CONCLUSION: Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence-base of sexuality education for adolescents with intellectual and developmental disabilities.


Assuntos
Pesquisa Participativa Baseada na Comunidade , Deficiências do Desenvolvimento , Deficiência Intelectual , Educação Sexual , Humanos , Adolescente , Deficiência Intelectual/reabilitação , Deficiências do Desenvolvimento/reabilitação , Feminino , Masculino , Comportamento Sexual
4.
BMJ Open ; 14(7): e081856, 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38964800

RESUMO

INTRODUCTION: India's contribution to the malaria burden was highest in South-East Asia Region in 2021, accounting for 79% of the estimated malaria cases and 83% of malaria-related deaths. Intensified Malaria Control Programme supported by Global Funds to Fight against AIDS, Tuberculosis and Malaria has deployed crucial interventions to reduce the overall burden of malaria in India. Evaluation of utilisation of malaria elimination interventions by the community and assessment of the healthcare system is underway in eleven high malaria endemic states in India. Health system preparedness for malaria elimination, logistics, and supply chain management of diagnostic kits and anti-malarial drugs in addition to the knowledge, attitude and practice of the healthcare workers is also being assessed. METHODS AND ANALYSIS: The study is being undertaken in 11 malaria endemic states with a variable annual parasite incidence of malaria. In total, 47 districts (administrative unit of malaria control operations) covering 37 976 households are to be interviewed and assessed. We present here the protocol following which the study is being undertaken at the behest and approval of Ministry of Health and Family Welfare in India. ETHICS AND DISSEMINATION: No patients were involved in the study. Study findings will be shared with Institutional ethics board of National Institute for Malaria Research New Delhi (NIMR) in a timely, comprehensive, accurate, unbiased, unambiguous and transparent manner and to the National Vector-borne Disease (Malaria) Control Programme officers and the Community public who participated. Important findings will be communicated through community outreach meetings which are existing in the Health system. Results will be informed to study participants via local fieldwork supervised by District Malaria Officers. Also findings will be published in reputed journals based on Indian Council of Medical Research (ICMR) publication policy.The ICMR-NIMR ethics committee approved the study via letter No. NIMR/ECM/2023/Feb/14 dated 24 April 2023 for version 5. All standard ethical practices will be followed.


Assuntos
Doenças Endêmicas , Malária , Humanos , Índia/epidemiologia , Malária/epidemiologia , Malária/prevenção & controle , Estudos Transversais , Projetos de Pesquisa , Antimaláricos/uso terapêutico , Conhecimentos, Atitudes e Prática em Saúde , Atenção à Saúde
5.
Int J Equity Health ; 23(1): 135, 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38965627

RESUMO

BACKGROUND: The concept of collaborative approaches involves community residents in joint decision-making processes to maintain or enhance their material and social conditions. During COVID-19, public services saw the benefits of actively collaborating with communities and involving residents in decision-making processes. As communities have resources and assets, they are well-placed to contribute to developing local health and wellbeing initiatives. An interdisciplinary and nationally funded three-phase research programme, "Mobilising community assets to tackle health inequalities", was established with the objective of utilising local, cultural, and natural assets to support health and wellbeing. The current study aimed to synthesise evidence collected by research teams awarded funding in phase one of the programme, comprising academic and non-academic, health and social care, voluntary and community partners. METHODS: Ten online focus groups were conducted with research teams from across the UK exploring the successes and challenges of partnership working to tackle health inequalities using collaborative approaches to community-based research. Eight focus group questions were split between partnership working and health inequalities. RESULTS: Thematic and content analysis produced 185 subthemes from which 12 themes were identified. Major themes representing an above average number of coded responses were research evidence; funding; relationships with partners; health inequalities and deprivation; community involvement; and health service and integrated care systems. Minor themes were link workers and social prescribing; training and support; place-based factors; longevity of programmes; setting up and scaling up programmes; and mental health. CONCLUSIONS: Successes included employing practice-based and arts-based methods, being part of a research project for those not normally involved in research, sharing funding democratically, building on established relationships, and the vital role that local assets play in involving communities. Challenges involved a lack of sustainable financial support, the short-term nature of funding, inconsistencies in reaching the poorest people, obtaining the right sort of research evidence, making sufficient research progress, building relationships with already over-burdened health care staff, and redressing the balance of power in favour of communities. Despite the challenges, participants were mainly optimistic that collective approaches and meaningful co-production would create opportunities for future research partnerships with communities.


Assuntos
COVID-19 , Grupos Focais , Humanos , COVID-19/epidemiologia , Pesquisa Participativa Baseada na Comunidade , Comportamento Cooperativo , Reino Unido , SARS-CoV-2 , Disparidades nos Níveis de Saúde , Desigualdades de Saúde
6.
J Int AIDS Soc ; 27 Suppl 1: e26278, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38965981

RESUMO

INTRODUCTION: Successful implementation of evidence-based practices depends on contextual factors like stakeholder engagement, the socio-political environment, resource availability, and stakeholders' felt needs and preferences. Nevertheless, inequities in implementation exist and undermine efforts to address HIV in marginalized key populations. Implementation science shows promise in addressing such inequities in the HIV response, but can be limited without meaningful engagement from citizens or communities. DISCUSSION: We define the concept of a citizen-engaged HIV implementation science as one that involves citizens and communities deeply in HIV implementation science activities. In this commentary, we discuss how citizen science approaches can be leveraged to spur equity in HIV implementation science. Drawing on three areas previously defined by Geng and colleagues that serve to drive impactful implementation science in the HIV response, we discuss how citizens can be engaged when considering "whose perspectives?", "what questions are being asked?" and "how are questions asked?". With respect to "whose perspectives?" a citizen-engaged HIV implementation science would leverage participatory methods and tools, such as co-creation, co-production and crowdsourcing approaches, to engage the public in identifying challenges, solve health problems and implement solutions. In terms of "what questions are being asked?", we discuss how efforts are being made to synthesize citizen or community-led approaches with existing implementation science frameworks and approaches. This also means that we ensure communities have a say in interrogating and deconstructing such frameworks and adapting them to local contexts through participatory approaches. Finally, when considering "how are questions asked?", we argue for the development and adoption of broad, guiding principles and frameworks that account for dynamic contexts to promote citizen-engaged research in HIV implementation science. This also means avoiding narrow definitions that limit the creativity, innovation and ground-up wisdom of local citizens. CONCLUSIONS: By involving communities and citizens in the development and growth of HIV implementation science, we can ensure that our implementation approaches remain equitable and committed to bridging divides and ending AIDS as a public health threat. Ultimately, efforts should be made to foster a citizen- and community-engaged HIV implementation science to spur equity in our global HIV response.


Assuntos
Infecções por HIV , Ciência da Implementação , Humanos , Infecções por HIV/prevenção & controle , Ciência do Cidadão/métodos , Participação da Comunidade/métodos
7.
BMC Prim Care ; 25(1): 248, 2024 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-38971738

RESUMO

BACKGROUND: The 15-method is an opportunistic screening and brief intervention tool for alcohol-related problems in primary healthcare. A Danish feasibility study of the 15-method indicated that adjustments were needed to improve its contextual fit to Danish general practice. This adjustment process was conducted in two parts. The first part focused on identifying barriers, facilitators, and user needs for addressing alcohol using the 15-method. The second part will address the identified barriers and user needs to finalize a Danish version of the method. This study reports on part one of the adjustment process. METHODS: Semi-structured individual interviews and focus group interviews with healthcare professionals (n = 8) and patients (n = 5) from general practice in Denmark. Data analysis was conducted using thematic content analysis. The results were condensed into two focus areas that will form the basis for user workshops in part two of the adjustment process. RESULTS: The main barriers for addressing alcohol using the 15-method were patients and healthcare professionals not having the same agenda, having difficulty opening a conversation on alcohol, and workflow in the practices. Main facilitators included high interpersonal skills, taking the patient's perspective, and good routines and interdisciplinary work. Suggested adjustments and additions to the method included digitalization, visual icebreakers, quotes and examples, and development of a quick guide. The identified focus areas for user workshops were Communication and Material, and Integration to Workflows. CONCLUSION: Healthcare professionals found the opportunistic screening approach exemplified by the 15-method to be beneficial in identifying and addressing alcohol-related problems. They appreciate the method's structured framework that assists in presenting treatment options. Identified adjustment areas to the 15-method will lay the groundwork for future efforts to develop a finalized Danish version of the 15-method.


Assuntos
Medicina Geral , Humanos , Dinamarca , Medicina Geral/métodos , Feminino , Masculino , Grupos Focais , Adulto , Pessoa de Meia-Idade , Estudos de Viabilidade , Pesquisa Qualitativa , Programas de Rastreamento/métodos , Entrevistas como Assunto , Transtornos Relacionados ao Uso de Álcool/diagnóstico , Transtornos Relacionados ao Uso de Álcool/terapia
8.
Toxics ; 12(6)2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38922083

RESUMO

A community engaged research (CER) approach was used to provide an exposure assessment of poly- and perfluorinated (PFAS) compounds in North Carolina residential drinking water. Working in concert with community partners, who acted as liaisons to local residents, samples were collected by North Carolina residents from three different locations along the Cape Fear River basin: upper, middle, and lower areas of the river. Residents collected either drinking water samples from their homes or recreational water samples from near their residence that were then submitted by the community partners for PFAS analysis. All samples were processed using weak anion exchange (WAX) solid phase extraction and analyzed using a non-targeted suspect screening approach as well as a quantitative approach that included a panel of 45 PFAS analytes, several of which are specific to chemical industries near the collection site locations. The non-targeted approach, which utilized a suspect screening list (obtained from EPA CompTox database) identified several PFAS compounds at a level two confidence rating (Schymanski scale); compounds identified included a fluorinated insecticide, a fluorinated herbicide, a PFAS used in polymer chemistry, and another that is used in battery production. Notably, at several locations, PFOA (39.8 ng/L) and PFOS (205.3 ng/L) were at levels that exceeded the mandatory EPA maximum contaminant level (MCL) of 4 ng/L. Additionally, several sites had detectable levels of PFAS that are unique to a local chemical manufacturer. These findings were communicated back to the community partners who then disseminated this information to the local residents to help empower and aid in making decisions for reducing their PFAS exposure.

9.
Ethn Health ; : 1-25, 2024 Jun 12.
Artigo em Inglês | MEDLINE | ID: mdl-38867355

RESUMO

OBJECTIVES: Inequitable pregnancy care experiences and outcomes disproportionately affect refugee background women in Australia. Culturally safe care is essential for achieving health equity, however, cultural safety can only be determined by the person receiving care. To our knowledge, women of refugee background in Australia are yet to be asked what culturally safe pregnancy care is to them. Specifically, this study aimed to explore what culturally safe pregnancy care is to Karen women (from Burma) of refugee background. DESIGN: A photovoice study founded on community-based participatory research principles was undertaken with a Karen community of refugee background living in Victoria, Australia. A community advisory group was established, guiding study design and conduct. Five S'gaw Karen-speaking women with experience of pregnancy care in Australia were invited to take photos within their community. Participants shared their photos and stories with each other in four online discussion groups. RESULTS: Reflexive thematic analysis guided by a critical constructionist lens developed three themes: Building foundations for belonging; cultivating reciprocal curiosity; and storytelling as an expression of self and shared power. These themes sit within the overarching theme When I can be my whole authentic self, I feel safe and know that I belong. CONCLUSION: When Karen women can embrace their cultural and spiritual identity without fear of discrimination, including racism, culturally safe pregnancy care is possible. This study contributes to the design and delivery of maternity services by providing insights that can enhance equitable and culturally safe pregnancy care for Karen women of refugee background.

10.
Sci Total Environ ; 946: 174072, 2024 Jun 17.
Artigo em Inglês | MEDLINE | ID: mdl-38897454

RESUMO

Communities neighboring monoculture plantations are vulnerable to different forms of pollution associated with agro-industrial operations. Herein, we examine the case of El Tiple, a rural Afro descendant community embedded within one of the largest sugarcane plantations in the Americas. We implemented a participatory approach to assess water pollution, exposure via water ingestion, and non-carcinogenic health risks associated with the use of local water sources available to the community. We conducted household surveys to unveil demographic characteristics and family dynamics linked to water consumption. Additionally, we measured water quality parameters and assessed the concentration glyphosate, its major metabolite (aminomethylphosphonic acid) and metals and metalloids. Drinking water El Tiple households is sourced from three primary sources: the local aqueduct system, water delivery trucks, and private deep wells. Tests on water samples from both the local aqueduct and delivery trucks showed no traces of pesticides, metals, or metalloids surpassing regulatory limits set by Colombian or EPA standards. However, we found concentration of contaminants of primary concern, including mercury (up to 0.0052 ppm) and lead (up to 0.0375 ppm) that exceed the permissible regulatory thresholds in water from groundwater wells. Residents of the peripheric subdivisions of El Tiple are four times more reliant on well water extraction than residents of the central area of the town due to lack of access to public drinking water and sanitation infrastructure. Finally, adult women and school-age children have a higher health risk associated with exposure to local pollutants than adult men due to their constant presence in the town. We conclude that expanding the coverage of clean water and sanitation infrastructure to include all households of the community would be the most recommended measure to minimize exposure and risk via ingestion of water pollutants.

11.
Child Adolesc Psychiatr Clin N Am ; 33(3): 471-483, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38823818

RESUMO

To reduce child mental health disparities, it is imperative to improve the precision of targets and to expand our vision of social determinants of health as modifiable. Advancements in clinical research informatics and please state accurate measurement of child mental health service use and quality. Participatory action research promotes representation of underserved groups in informatics research and practice and may improve the effectiveness of interventions by informing research across all stages, including the identification of key variables, risk and protective factors, and data interpretation.


Assuntos
Equidade em Saúde , Serviços de Saúde Mental , Humanos , Criança , Serviços de Saúde Mental/organização & administração , Informática Médica , Pesquisa Biomédica , Disparidades em Assistência à Saúde , Serviços de Saúde da Criança
12.
JMIR Public Health Surveill ; 10: e50195, 2024 Jun 19.
Artigo em Inglês | MEDLINE | ID: mdl-38896458

RESUMO

BACKGROUND: Participatory research (PR) involves engaging in cocreation with end users and relevant stakeholders throughout the research process, aiming to distribute power equitably between the end users and research team. Engagement and adherence in previous workplace health promotion (WHP) studies have been shown to be lacking. By implementing a PR approach, the insights of end users and stakeholders are sought in the co-design of feasible and acceptable intervention strategies, thereby increasing the relevance of the research. OBJECTIVE: This scoping review aims to explore, identify, and map PR techniques and their impact when used in office-based WHP interventions designed to improve physical activity (PA) or reduce sedentary behavior (SB). METHODS: The reporting of this scoping review followed the PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews). A systematic literature search of 5 electronic databases-Web of Science, PubMed, Scopus, Google Scholar, and OpenGrey-was conducted, searching from January 1, 1995, to February 8, 2023. In total, 2 independent reviewers first screened the retrieved articles by title and abstract, and then assessed the full texts based on the inclusion and exclusion criteria. The search strategy and eligibility criteria were developed and guided by an a priori population (office-based working adults), intervention (a PA WHP intervention that took a PR approach), comparison (no comparison required), and outcome (PA or SB) framework. Data were charted and discussed via a narrative synthesis, and a thematic analysis was conducted. The included studies were evaluated regarding the degree of end user engagement throughout the research process and power shared by the researchers, using Arnstein's ladder of citizen participation. RESULTS: The search retrieved 376 records, of which 8 (2.1%) met the inclusion criteria. Four key strategies were identified: (1) end user focus groups, (2) management involvement, (3) researcher facilitators, and (4) workplace champions. The degree of engagement and power shared was relatively low, with 25% (2/8) of the studies determined to be nonparticipation studies, 25% (2/8) determined to be tokenistic, and 50% (4/8) determined to provide citizen power. CONCLUSIONS: This review provides a foundation of evidence on the current practices when taking a PR approach, highlighting that previous office-based PA WHP studies have been largely tokenistic or nonparticipative, and identified that the end user is only engaged with in the conception and implementation of the WHP studies. However, a positive improvement in PA and reduction in SB were observed in the included studies, which were largely attributed to implementing a PR approach and including the end user in the design of the WHP intervention. Future studies should aim to collaborate with workplaces, building capacity and empowering the workforce by providing citizen control and letting the end users "own" the research for a sustainable WHP intervention. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2021-054402.


Assuntos
Exercício Físico , Promoção da Saúde , Comportamento Sedentário , Local de Trabalho , Humanos , Promoção da Saúde/métodos , Exercício Físico/psicologia , Local de Trabalho/psicologia , Pesquisa Participativa Baseada na Comunidade , Saúde Ocupacional
13.
Res Involv Engagem ; 10(1): 56, 2024 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-38849959

RESUMO

Engaging young people in research is a promising approach to tackling issues like chronic disease prevention. Our involvement as youth advisors provided valuable experiences, including being at the forefront of change and learning to work within a research team. Furthermore, our experience provides greater insight and learnings for future youth engagement in research.


We are a group of 16 diverse young people from New South Wales, Australia, who are passionate about youth health. In 2021 and 2022, we formed the Health Advisory Panel for Youth at the University of Sydney (HAPYUS, pronounced 'Happy Us') working with researchers on projects to prevent chronic diseases in young people. We brainstormed health issues from our own experiences and other research and summarised them into the top three youth health concerns. From these, we helped develop and test programs to support healthy behaviours in young people. We used scientific and public events to present our findings. Finally, we presented our results in a research paper and through traditional and social media. One of the most rewarding experiences was the opportunity to be part of all stages of the research process of improving youth health especially because COVID-19 and social media changed the way we need to think about youth mental and physical health. We also learned how to work together amongst ourselves as young people and within a research team. We hope that other young people can learn from our experiences and feel inspired to become active contributors in projects for meaningful change in the lives of young people.

14.
Health Expect ; 27(3): e14081, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38845155

RESUMO

BACKGROUND: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. AIMS: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. METHODS: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. RESULTS: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts-based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. CONCLUSION: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. PATIENT/PUBLIC CONTRIBUTION: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.


Assuntos
Participação do Paciente , Humanos , Criança , Adolescente , Projetos de Pesquisa , Pesquisa sobre Serviços de Saúde , Participação da Comunidade
15.
Artigo em Inglês | MEDLINE | ID: mdl-38847944

RESUMO

INTRODUCTION: The Centers for Disease Control and Prevention (CDC) and the Division of Cancer Prevention of Control administer the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), designed to increase early detection of cancers among low-income uninsured and underinsured women. However, rates of cancer diagnosis and survivorship differ among women of different ethnicities. We investigated two questions: 1) what are the potential barriers and facilitators for women to complete recommended breast and cervical cancer screenings, and 2) are the barriers and facilitators different for Hispanic women when compared to non-Hispanic White women? METHODS: We used a community-based participatory research approach and mixed methods: qualitative interviews with women enrolled in the program and a systematic process improvement approach to identify root causes of completing or not completing screenings. We conducted semi-structured interviews in English (n = 11) and Spanish (n = 9) and analyzed responses using fishbone diagrams. RESULTS: We recruited 20 participants in four categories: (a) non-Hispanic White women who completed screenings (n = 9), (b) non-Hispanic White women who did not complete screenings (n = 2), (c) Hispanic women who completed screenings (n = 7), and (d) Hispanic women who did not complete screenings (n = 2). Among all women, facilitators included assistance from program staff with appointments and reminders. Hispanic women reported barriers including language difficulties and confusion about the program. Non-Hispanic White women identified barriers as confusion about the role of insurance. CONCLUSIONS: We found that there are differences in barriers and facilitators for non-Hispanic White women and Hispanic women due to language, the role of insurance, and the level of trust in the program. Reasons for not completing screenings for Hispanic women were structural and systemic in nature; reasons for non-Hispanic White women were based on personal choices.

16.
Front Sociol ; 9: 1371760, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38873342

RESUMO

Introduction: Volunteering in the community is thought to provide unique benefits to people who experience limited engagement in society. In the global South, volunteer programs are often framed as empowering women and benefiting the poor, without empirical evidence or systematic investigation of what this means from a local perspective. For this reason, it is critical to represent stakeholder knowledge, understand how change happens systemically, and reduce cultural bias in scientific inquiry and public policy. As such, efforts to respect diverse narratives and problem-solving approaches are key to science diplomacy - they help us understand cultural relevance, program efficacy, and for whom a program is considered transformative. Methods and results: This study shows how Syrian refugee and Jordanian women, living in resource-poor families, articulated (i) concepts of empowerment and life satisfaction and (ii) the benefits of engaging in community-based volunteering programs. Through engaging in a participatory methodology known as Fuzzy Cognitive Mapping, women generated visual representations of these constructs and cause-and-effect reasoning. They identified several dimensions of empowerment (e.g., cultural, financial, and psychological empowerment) and several meanings of life satisfaction (e.g. adaptation, acceptance, and contentment). They also mapped connections between variables, identifying those that might catalyze change. We were specifically interested in evaluating understandings of We Love Reading, a program that trains volunteers to become changemakers in their local community. In simulations, we modelled how employment, education, money, and volunteering would drive system change, with notable results on cultural empowerment. Discussion: Through visual maps and scenarios of change, the study demonstrates a participatory approach to localizing knowledge and evaluating programs. This is key to improving scientific enquiry and public policy.

17.
Community Health Equity Res Policy ; : 2752535X241262857, 2024 Jun 17.
Artigo em Inglês | MEDLINE | ID: mdl-38885632

RESUMO

BACKGROUND: Community-based participatory research coproduces knowledge by emphasizing bidirectional exchanges between participants, communities, and researchers. PURPOSE, RESEARCH DESIGN, AND STUDY SAMPLE: We highlight three studies in historically marginalized communities on separate continents (Richmond, CA, USA; Rio de Janeiro, Brazil; Marseille industrial zone, France) to exemplify how community-based participatory research improves research, offers tangible community benefits, and values residents more than traditional research methods. DATA ANALYSIS: We provide insights into the process of conducting meaningful community-based participatory epidemiologic research. RESULTS: In each of these communities, community-based participatory research led to high-quality research that helped inform context-appropriate policies and programs to improve health and advance health equity in these communities. CONCLUSIONS: We recommend that researchers consistently engage with community members during all phases of research so that they can engage more participants, more deeply in the research process, build local capacity, improve data collection and data quality, as well as increase our understanding of research findings to inform future applied research and practice.

18.
Artigo em Inglês | MEDLINE | ID: mdl-38888879

RESUMO

BACKGROUND: The rates of obesity among immigrant populations within the USA rise with increasing duration of residency. The aims of this study were to examine weight self-perception and body image discrepancy within a large community sample of Hispanic and Somali predominantly immigrant adults. METHODS: Utilizing a community-based participatory research (CBPR) approach to collect survey data from a sample of adults who self-identified as Hispanic, Latino, or Somali in Southeast Minnesota. Correlations among actual body mass index (BMI), perceived weight category, and perceived body size were assessed with Spearman rank correlation coefficients. Associations of weight loss intentions with actual BMI, perceived weight category, perceived body size, and body image discrepancy were assessed using Kruskal-Wallis nonparametric tests. RESULTS: A total of 1256 adults completed the survey and biometric measurements (610 Hispanic, 646 Somali); 81% (457) and 50% (328) had a BMI in the overweight or obese category in the Hispanic and Somali cohorts, respectively. Among participants with a BMI of > 25, more participants reported a perceived body size that was overweight or obese than a perceived weight category that was in the overweight or obese category (79% vs. 48%, p = < 0.0001). Body image discrepancy, but not actual BMI, was associated with weight loss intentions for both groups. Perceived body size and perceived weight category were associated with weight loss intentions for Hispanic participants only. CONCLUSIONS: Perceived body size is a more accurate self-report proxy of BMI-defined weight status compared with the perceived weight category among Hispanic and Somali immigrant groups. Body image discrepancy may be more predictive of weight loss intentions than actual BMI.

19.
Artigo em Inglês | MEDLINE | ID: mdl-38888883

RESUMO

OBJECTIVES: Maternal mortality and morbidity disproportionately affect birthing people from racialized populations. Unfortunately, researchers can often compound these poor outcomes through a lack of authentic community engagement in research beyond the role of the research subject, leading to ineffective strategies for improving care and increasing equity. This article details the real-life strategies utilized to develop a community-engaged research project of a phased federally funded grant employing community engagement principles of co-leadership and co-creation. It also includes reflections from the researchers and advisory board on promising practices and lessons learned for equitably engaging patients and community partners in research. METHODS: This article details the application of principles of community-engaged research in a federally funded phased research project focused on understanding disparities in maternal sepsis to develop better clinical and community interventions. Specifically, it discusses early steps in the research partnership to create a sustainable partnership with a Community Leadership Board guided by the principles of transparency, respect, compensation, and increasing research justice. RESULTS: TBased on the authors' experience, recommendations are provided for funders, researchers, and institutions to improve the quality and outcomes of communityengaged research. This work adds to community-based participatory and community-engaged research literature by providing concrete and practical steps for equitably engaging in research partnerships with a variety of collaborators. CONCLUSIONS: In conclusion, integrated patient and community co-leadership enhances research by providing insight, access to communities for education and dissemination of information, and identifying critical areas needing change. This report may help others address fundamental principles in this journey.

20.
Inj Epidemiol ; 11(1): 26, 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38877541

RESUMO

BACKGROUND: In the US, over 50% of suicide deaths are by firearm injury. Studies have found that limiting access to firearms, including storing them temporarily outside of the home or locking and unloading them securely at home, helps prevent suicide. Family members and other loved ones are in a unique position to encourage secure firearm storage. This paper describes the development of a workshop to empower loved ones of individuals at risk for suicide to discuss secure firearm storage in New York State. METHODS: Using a multistakeholder engagement framework, we partnered with New York State county-level suicide prevention coalitions, local firearms experts, and other stakeholders to develop a 90-min workshop addressing secure firearm storage for suicide prevention. Pilot workshops were co-facilitated by a suicide prevention coalition member and a local firearms expert. Feedback gathered via surveys from workshop attendees and interviews with workshop co-facilitators were used to revise workshop content and inform dissemination. Following pilot workshops, a 1-day training event was held for potential future facilitators, and survey data were collected to assess trainee experiences and interest in facilitating future workshops. Data analysis included rapid qualitative analysis of interviews and statistical analysis of survey responses about acceptability of workshop. RESULTS: Four pilot workshops included a total of 23 attendees. Pilot workshop attendees endorsed willingness and confidence to discuss secure firearm storage with a family member or loved one. The training event included 42 attendees, of which 26 indicated interest in facilitating a workshop within the next year. Co-facilitators agreed on several key themes, including the importance of having a "trusted messenger" deliver the firearms portion of the workshop, keeping the conversation focused on firearm safety for suicide prevention, and developing interventions that reflect firearm owning community's culture. CONCLUSIONS: Consistent with a public health approach to suicide prevention, this study leveraged a multistakeholder engagement framework to develop a community-based workshop empowering loved ones of individuals at risk for suicide to discuss secure firearm storage. The workshop will be disseminated across New York State. We noted positive and collaborative relationships across stakeholder groups, and willingness to facilitate the workshop among both suicide prevention and firearm stakeholders.

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