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1.
Prev Sci ; 25(Suppl 3): 474-485, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38598040

RESUMO

Multilevel interventions (MLIs) are appropriate to reduce health disparities among Indigenous peoples because of their ability to address these communities' diverse histories, dynamics, cultures, politics, and environments. Intervention science has highlighted the importance of context-sensitive MLIs in Indigenous communities that can prioritize Indigenous and local knowledge systems and emphasize the collective versus the individual. This paradigm shift away from individual-level focus interventions to community-level focus interventions underscores the need for community engagement and diverse partnerships in MLI design, implementation, and evaluation. In this paper, we discuss three case studies addressing how Indigenous partners collaborated with researchers in each stage of the design, implementation, and evaluation of MLIs to reduce health disparities impacting their communities. We highlight the following: (1) collaborations with multiple, diverse tribal partners to carry out MLIs which require iterative, consistent conversations over time; (2) inclusion of qualitative and Indigenous research methods in MLIs as a way to honor Indigenous and local knowledge systems as well as a way to understand a health disparity phenomenon in a community; and (3) relationship building, maintenance, and mutual respect among MLI partners to reconcile past research abuses, prevent extractive research practices, decolonize research processes, and generate co-created knowledge between Indigenous and academic communities.


Assuntos
Disparidades nos Níveis de Saúde , Humanos , Povos Indígenas , Serviços de Saúde do Indígena/organização & administração
2.
Cancer Causes Control ; 34(Suppl 1): 113-123, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37069456

RESUMO

PURPOSE: Community engagement is essential in effective public health programs. This paper illustrates the methods used to engage community in the development of a multi-level implementation intervention to address cancer disparities related to hereditary cancer syndromes. METHODS: Implementation Mapping (IM), was used to guide the co-creation of an intervention. Key partners were recruited to a 13-member statewide community advisory board (CAB) representing healthcare and community-based organizations. As part of a needs assessment, a 3-round modified Delphi method with the CAB was used to identify implementation outcomes to use in later steps of IM. An anonymous online survey of a validated community engagement measure assessed CAB members' satisfaction with the process. RESULTS: Using a modified Delphi method as part of the needs assessment of IM, the CAB identified three broad categories of strategies: Changing infrastructure using patient navigation; training and educating patients, navigators and providers; and supporting clinicians in case identification and management. Self-reported satisfaction with the IM and Delphi process was high. CONCLUSIONS: Implementation Mapping facilitated the use of available evidence, new data, and community engagement to identify strategies to improve the delivery of programs to reduce hereditary cancer disparities. The modified Delphi method was easy to administer in a virtual environment and may be a useful for others in community-engaged research.


Assuntos
Pesquisa Participativa Baseada na Comunidade , Neoplasias , Humanos , Pesquisa Participativa Baseada na Comunidade/métodos , Atenção à Saúde , Neoplasias/prevenção & controle
3.
Support Care Cancer ; 31(2): 136, 2023 Jan 26.
Artigo em Inglês | MEDLINE | ID: mdl-36700992

RESUMO

PURPOSE: To identify physical activity (PA) barriers and facilitators among Black and African American (Black/AA) cancer survivors that should be considered in future PA intervention development for this population. METHODS: A community advisory board (CAB) of Black/AA cancer survivors and patient advocates guided in-depth qualitative interviews (n = 19) that were completed via telephone using a semi-structured interview guide. Interviews were transcribed verbatim, and data were analyzed using directed content analysis to detail a report of PA barriers and facilitators during and after cancer treatment. The CAB reviewed and interpreted these barriers and facilitators to identify the final results. RESULTS: Survivors (n = 19) of nine different types of cancer completed interviews. PA barriers during cancer treatments included physical and psychological suffering. PA barriers after cancer treatments included social and environmental constraints (e.g., lack of access needed for PA, safety concerns, and competing priorities). PA facilitators both during and after cancer treatments included family support, faith, and support from other survivors. PA facilitators during treatment also included feeling better after doing PA, setting realistic and flexible goals, and gaining a sense of control of one's health by striving for PA goals. CONCLUSIONS: To increase PA among Black/AA cancer survivors, PA interventions are needed that address structural barriers, include the role of faith, leverage family support, highlight the psychological benefits of PA, and use goal setting.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Sobreviventes de Câncer/psicologia , Negro ou Afro-Americano , Exercício Físico/psicologia , Sobreviventes/psicologia , Pesquisa Qualitativa , Neoplasias/terapia
4.
J Adv Nurs ; 79(11): 4411-4424, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37350100

RESUMO

AIM: To explore the resilience of children, six to thirteen years old, living on a Northern Plains American Indian Reservation using a situation specific nursing theory. BACKGROUND: American Indian and Alaska Native children experience mental health inequities compared to their white peers, including substance use, suicide, depression, and anxiety. Resilience is a strength of children that can be leveraged to improve their mental health. DESIGN: A parallel convergent mixed methods design. METHODS: A community advisory board culturally adapted resilience instruments. During two weeks in summer 2022, forty-seven children/caregiver dyads completed surveys about the child's resilience. Descriptive statistics gave the scores of each child's personal, relational, and total resilience. A subset of 20 children participated in a semi-structured interview. RESULTS: Children scored high on overall resilience, and higher on the relational subscale than the personal subscale. Caregiver survey scores were not significantly correlated with their child's scores and were higher than the children's scores. Qualitative coding revealed six themes of resilience. Integration of data showed a concordance and expansion of the quantitative data across themes. CONCLUSION: The children reported high resilience supported by a strong ecosystem of relationships. Resilience, as explained through children's voices, corroborated with findings from the surveys. IMPLICATIONS FOR NURSING: Findings will help nurses across sectors of primary, secondary, and tertiary care create resilience-enhancing interventions and prevent mental health crises in this community. IMPACT STATEMENT: This findings from this study will inform local mental health interventions on the Reservation. The study provides a reproducible design to adapt to other Indigenous communities. PUBLIC CONTRIBUTION: A community advisory board was a partner in every stage of the study. Children and caregivers participated in data collection. CONTRIBUTION TO THE WIDER CLINICAL COMMUNITY: This research provides knowledge that will further social justice efforts within nursing to promote health equity across diverse populations.


Assuntos
Indígena Americano ou Nativo do Alasca , Desigualdades de Saúde , Saúde Mental , Características de Residência , Resiliência Psicológica , Determinantes Sociais da Saúde , Adolescente , Criança , Humanos , Indígena Americano ou Nativo do Alasca/psicologia , Promoção da Saúde , Indígenas Norte-Americanos/psicologia , Suicídio , Estados Unidos/epidemiologia , Determinantes Sociais da Saúde/etnologia , Comitês Consultivos , Competência Cultural/psicologia , Saúde Mental/etnologia , Cuidados de Enfermagem
5.
Health Promot Pract ; : 15248399231216731, 2023 Dec 05.
Artigo em Inglês | MEDLINE | ID: mdl-38050905

RESUMO

Human papillomavirus (HPV) vaccination rates remain suboptimal among young Black adults (18-26 years). Research focused on HPV vaccination among young Black adults is limited. Guided by the Theory of Planned Behavior, we developed #HPVvaxtalks, a theoretically grounded and culturally appropriate Facebook intervention in collaboration with a youth community advisory board (YCAB) to increase awareness of HPV risk factors, risk perception, HPV vaccine-related knowledge, vaccination intention, and uptake for Black individuals. Engagement with YCAB members fostered opportunity to discuss priorities reflecting the community's interest and make #HPVvaxtalks more relevant. This article describes the YCAB engagement and collaborative process in the development and refinement of posts/messages for #HPVvaxtalks. Five young Black adults (18-26 years of age) were invited to become members of a YCAB. YCAB reviewed the preliminary version of #HPVvaxtalks intervention materials and provided critiques and suggestions for refinement. Following the completion of the collaborative process, YCAB members completed individual interviews to reflect on the process. Feedback from YCAB participants focused on the relevance, engagement, clarity, and organization of the content and the media utilized. Participants suggested using "memes" to improve cultural relevance and engagement for young Black individuals. All YCAB members expressed satisfaction with the development process. Collaboration with a YCAB was crucial in developing a culturally relevant and acceptable #HPVvaxtalks intervention, which includes 40 messages/posts for young Black adults. Undergoing the iterative process of intervention development and refinement with the priority population can be an essential component in the design and implementation of health promotion activities.

6.
Am J Obstet Gynecol ; 226(3): 392.e1-392.e12, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-33974903

RESUMO

BACKGROUND: Uterine leiomyomas, commonly known as fibroids, are benign tumors in postmenarchal females. By the age of 35 years, approximately 30% of females will have fibroids, and by the age of 50 years, the prevalence approaches 70% with some studies reporting >85% prevalence in African American females. Previous studies evaluating the prevalence of fibroids have largely relied on self-reported fibroid diagnoses, which could have falsely underestimated prevalence because many females with fibroids are asymptomatic. Despite known differences in fibroid prevalence by race, there are very limited data on fibroid prevalence by ethnicity. The Latino population is the largest ethnic minority in the United States, yet there is no large study that utilizes ultrasound to confirm the presence of fibroids in Latina/Latinx females. In addition, fibroids have been associated with obesity and with diabetes mellitus, but the data have been inconsistent and at times conflicting. OBJECTIVE: The Environment, Leiomyomas, Latinas, and Adiposity Study was designed to quantify the prevalence of uterine fibroids among Latina/Latinx females and understand the relationships between obesity, glucose dysregulation, and fibroid prevalence and growth. This article presents the study's design and reports early enrollment data. STUDY DESIGN: The Environment, Leiomyomas, Latinas, and Adiposity Study is a 5-year longitudinal cohort study based in Southeast Michigan with the goal of recruiting 600 Latina/Latinx females between the ages of 21 and 50 years. Given the recruitment goals, developing a respectful, transparent, and trusting relationship between the study investigators and the community was a major priority. Thus, a community-engaged research approach was utilized in the design of the Environment, Leiomyomas, Latinas, and Adiposity Study. A community advisory board containing community leaders, largely from the Latinx community, provided input and direction during the entirety of the Environment, Leiomyomas, Latinas, and Adiposity Study design and rollout process. A minimum of 3 visits (orientation and consent, baseline, follow-up) will be conducted for each participant, with baseline and follow-up visits approximately 18 to 30 months apart. At each visit, interviewer and self-administered surveys will assess sociodemographic factors, health behaviors, health history, and social determinants of health. In addition, participants undergo a pelvic ultrasound examination and biologic samples are collected. RESULTS: Using community-engaged approaches, we have successfully enrolled 633 Latina/Latinx females. The mean participant age is 37.5±7.04 years. The mean body mass index is 30.0±6.54 kg/m2. First study visits have been initiated. CONCLUSION: The objective of the Environment, Leiomyomas, Latinas, and Adiposity Study is to address the knowledge gap regarding uterine fibroids in the Latina/Latinx population. The Environment, Leiomyomas, Latinas, and Adiposity Study will generate ultrasound-confirmed evidence of the prevalence and growth patterns of uterine fibroids in this specific population while also examining the associations between obesity and laboratory-confirmed glucose dysregulation with uterine fibroid prevalence and growth patterns.


Assuntos
Leiomioma , Neoplasias Uterinas , Adiposidade , Adulto , Etnicidade , Feminino , Hispânico ou Latino , Humanos , Leiomioma/epidemiologia , Estudos Longitudinais , Pessoa de Meia-Idade , Grupos Minoritários , Obesidade/epidemiologia , Neoplasias Uterinas/epidemiologia , Adulto Jovem
7.
Home Health Care Serv Q ; 40(1): 16-26, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-32865476

RESUMO

Community advisory boards (CABs) have become increasingly common and important in translational research in health care including studies focusing on home and community-based services. CABs are composed of stakeholders who share interest in research projects and typically include patients/clients, practitioners, community members, policymakers, and researchers. CABs advise researchers on issues ranging from research design and recruitment to implementation and dissemination. In this article, the researchers detail their experiences with the CAB for a pragmatic clinical trail of Adult Day Services (ADS) Plus, an education and support intervention for family caregivers of older adults with dementia using adult day services. Lessons learned, guidelines, and best practices are then presented for developing and working with a CAB in healthcare research.


Assuntos
Participação da Comunidade/métodos , Ensaios Clínicos Pragmáticos como Assunto/métodos , Centros-Dia de Assistência à Saúde para Adultos/organização & administração , Centros-Dia de Assistência à Saúde para Adultos/tendências , Cuidadores/psicologia , Participação da Comunidade/tendências , Humanos , Desenvolvimento de Programas/métodos
8.
Environ Health ; 19(1): 39, 2020 04 05.
Artigo em Inglês | MEDLINE | ID: mdl-32248802

RESUMO

BACKGROUND: From 2006 to 2011, the City of Houston received nearly 200 community complaints about air pollution coming from some metal recycling facilities. The investigation by the Houston Health Department (HHD) found that while operating within legal limits, emissions from facilities that use torch cutting, a technique generating metal aerosols, may increase health risks for neighboring residents. Choosing to use collaborative problem solving over legislative rulemaking, HHD reached out to The University of Texas Health Science Center at Houston (UTHealth) to further evaluate and develop plans to mitigate, if necessary, health risks associated with metal emissions from these facilities. METHODS: Utilizing a community-based participatory research approach, we constituted a research team from academia, HHD and an air quality advocacy group and a Community Advisory Board (CAB) to draw diverse stakeholders (i.e., frustrated and concerned residents and wary facility managers acting within their legal rights) into an equitable, trusting and respectful space to work together. Next, we investigated metal air pollution and inhalation health risks of adults living near metal recyclers and ascertained community views about environmental health using key informant interviews, focus groups and surveys. Finally, working collaboratively with the CAB, we developed neighborhood-specific public health action plans to address research findings. RESULTS: After overcoming challenges, the CAB evolved into an effective partnership with greater trust, goodwill, representation and power among members. Working together to translate and share health risk assessment results increased accessibility of the information. These results, coupled to community survey findings, set the groundwork for developing and implementing a stakeholder-informed action plan, which included a voluntary framework to reduce metal emissions in the scrap yard, improved lines of communication and environmental health leadership training. Tangible outcomes of enhanced capacity of our community and governmental partners included trained residents to conduct door-to-door surveys, adaptation of our field training protocol and survey by our community partner and development of a successful HHD program to engage residents to improve environmental health in their neighborhood. CONCLUSIONS: Academic-government-community-industry partnerships can reduce environmental health disparities in underserved neighborhoods near industrial facilities.


Assuntos
Poluição do Ar/análise , Pesquisa Participativa Baseada na Comunidade , Exposição Ambiental/análise , Saúde Ambiental , Metais , Parcerias Público-Privadas , Características de Residência , Cidades , Humanos , Reciclagem , Características de Residência/classificação , Fatores Socioeconômicos , Texas , Universidades
9.
BMC Med Ethics ; 20(1): 50, 2019 07 16.
Artigo em Inglês | MEDLINE | ID: mdl-31311526

RESUMO

BACKGROUND: Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards (CABs) is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini (formerly known as Swaziland), which was implemented as part of the MaxART Early Access to ART for All study. METHODS: Trained Swazi research assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. RESULTS: The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: (1) promoting ethical conduct, in particular privacy, consent and confidentiality; (2) communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and (3) liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. CONCLUSION: The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning.


Assuntos
Comitês Consultivos , Fármacos Anti-HIV/uso terapêutico , Participação da Comunidade , Acessibilidade aos Serviços de Saúde/ética , Adulto , Idoso , Pesquisa Participativa Baseada na Comunidade/ética , Pesquisa Participativa Baseada na Comunidade/métodos , Pesquisa Participativa Baseada na Comunidade/organização & administração , Essuatíni , Feminino , Grupos Focais , Infecções por HIV/tratamento farmacológico , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Adulto Jovem
10.
Dev World Bioeth ; 18(4): 420-428, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-28872746

RESUMO

Community engagement to protect and empower participating individuals and communities is an ethical requirement in research. There is however limited evidence on effectiveness or relevance of some of the approaches used to improve ethical practice. We conducted a study to understand the rationale, relevance and benefits of community engagement in health research. This paper draws from this wider study and focuses on factors that shaped Community Advisory Group (CAG) members' selection processes and functions in Malawi. A qualitative research design was used; two participatory workshops were conducted with CAG members to understand their roles in research. Workshop findings were triangulated with insights from ethnographic field notes, key informant interviews with stakeholders, focus group discussions with community members and document reviews. Data were coded manually and thematic content analysis was used to identify main issues. Results have shown that democratic selection of CAG members presented challenges in both urban and rural settings. We also noted that CAG members perceived their role as a form of employment which potentially led to ineffective representation of community interests. We conclude that democratic voting is not enough to ensure effective representation of community's interests of ethical relevance. CAG members' abilities to understand research ethics, identify potential harms to community and communicate feedback to researchers is critical to optimise engagement of lay community and avoid tokenistic engagement.


Assuntos
Comitês Consultivos , Pesquisa Biomédica/ética , Participação da Comunidade , Pesquisa Participativa Baseada na Comunidade , Adulto , Idoso , Ética em Pesquisa , Feminino , Grupos Focais , Humanos , Malaui , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Pesquisadores , Características de Residência , Participação dos Interessados , Inquéritos e Questionários , Adulto Jovem
11.
Public Health Nurs ; 35(6): 563-567, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-29808938

RESUMO

BACKGROUND: Documentary analysis of existing information, such as newspaper articles, is an identified method for use in an assessment to provide a descriptive explanation of existing problems or assets. The intention of this case study is to explore the effectiveness of documentary analysis of newspaper articles as a tool to inform an assessment of factors influencing the implementation of a medical respite for the homeless. Two questions framed the assessment; (a) What was occurring or might occur that will affect the development of a medical respite; and (b) What opportunities or threats are generated as a result? METHODS: Articles from two local newspapers identified themes related to the three external forces of change that impact medical respites; (a) funding; (b) community resistance; and (c) the health care system. RESULTS: Three themes emerged: a) uncertain funding; b) neighborhood resistance, and c) improved access to healthcare would result from the Affordable Care Act. CONCLUSION: Use of documentary analysis of newspaper articles provided applicable content for the assessment. Themes from the assessment informed strategic planning, such as addressing potential neighborhood resistance.


Assuntos
Atitude Frente a Saúde , Acessibilidade aos Serviços de Saúde , Pessoas Mal Alojadas , Jornais como Assunto , Financiamento de Capital , Humanos , Patient Protection and Affordable Care Act
12.
Health Promot Int ; 30(2): 328-38, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23759897

RESUMO

This study focuses on the Implementation Community Collaborative Board (I-CCB) to identify members' anticipated contributions to and returns from the I-CCB; examine whether or not members achieved these contributions and returns over time; and explore barriers and facilitators that influenced accomplishments. Longitudinal study with repeated semi-structured in-depth interviews; baseline captured anticipated contributions and returns; 6- and 18-month follow-ups short- and longer-term achievements. We used content analysis to code/reduce text into variables, describe, count and compare categories. Participants anticipated involvement in I-CCB dynamics/governance and in research tasks/procedures. Anticipated returns included social support. Participants exerting influence on I-CCB's research agenda stayed the same over time. Participants conducting research doubled between follow-ups; those writing grant proposals increased by 50%. Participants receiving emotional support remained the same. Challenges: meetings steered by researchers; lack of time; use of jargon. Facilitators: outreaching to community; being affected by HIV; having overlapping identities/roles as researcher, service consumer and/or practitioner. Research partners can maximize facilitators, redress barriers and improve advisory board members' retention. Findings may help optimize the functioning of advisory boards worldwide.


Assuntos
Comitês Consultivos/organização & administração , Pesquisa Participativa Baseada na Comunidade/organização & administração , Comportamento Cooperativo , Relações Comunidade-Instituição , Feminino , Infecções por HIV/prevenção & controle , Infecções por HIV/terapia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Estudos Longitudinais , Masculino , Projetos de Pesquisa , Estados Unidos
13.
Health Promot Pract ; 15(2): 263-70, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23632077

RESUMO

Community-based participatory research (CBPR) is an important framework for partnering with communities to reduce health disparities. Working in partnership with community incurs additional costs, some that can be represented in a budget summary page and others that are tied to the competing demands placed on community and academic partners. These cost considerations can inform development of community-academic partnerships. We calculated costs from a case study based on an ongoing CBPR project involving a Community Planning Group (CPG) of community co-researchers in rural Alaska and a bicultural liaison group who help bridge communication between CPG and academic co-researchers. Budget considerations specific to CBPR include travel and other communication-related costs, compensation for community partners, and food served at meetings. We also identified sources of competing demands for community and academic partners. Our findings can inform budget discussions in community-academic partnerships. Discussions of competing demands on community partners' time can help plan timelines for CBPR projects. Our findings may also inform discussions about tenure and promotion policies that may represent barriers to participation in CBPR for academic researchers.


Assuntos
Orçamentos , Redes Comunitárias/economia , Pesquisa Participativa Baseada na Comunidade/economia , Desenvolvimento de Programas/métodos , Alaska , Redes Comunitárias/organização & administração , Pesquisa Participativa Baseada na Comunidade/organização & administração , Disparidades nos Níveis de Saúde , Humanos , Indígenas Norte-Americanos , Estudos de Casos Organizacionais , População Rural
14.
Health Equity ; 8(1): 8-13, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38250302

RESUMO

Introduction: Researchers can often be challenged by meaningful efforts to involve the public and communities in research. Community and health advisory boards (HABs) offer an opportunity to create a fully intentional and honest relationship between researchers and the community. Objective: Most recently, the All Indiana (IN) for Health HAB had four openings and a call was published to our community of over 13,800 individuals in the All IN for Health newsletter. Four hundred eighty-eight individuals submitted applications to become part of the board. In what follows, we share the lessons in motivations and interests of individuals who responded. Methods: The application process included the following questions: What lived experiences and/or personal interests have motivated you to be involved in All IN for Health? Please explain why you are interested in being an All IN for HAB member. Our analysis approach was qualitative and centered on narrative research. Results: We organize the findings in two categories: Motivation and Interests. Individuals were motivated to participate based on family or friend diagnosis, personal diagnosis, roles as caregivers, desire to impact change and advocacy, role as health professional, and previous participation in research. Interests followed similar themes beginning with crediting their interest to a diagnosis. In addition, we categorized desire to share their experience, personal positionality, and previous research experience, and contributing to the education of student/trainee. Conclusion: By understanding motivations, we understand needs. This information can be used for other advisory boards, as well as recruitment into research participation and health care advocacy.

15.
Chest ; 166(2): 343-351, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38369254

RESUMO

BACKGROUND: Community advisory boards (CABs) are increasingly recognized as a means of incorporating patient experience into clinical practice and research. The power of CABs is derived from engaging with community members as equals throughout the research process. Despite this, little is known of community member experience and views on best practices for running a CAB in a rare pulmonary disease. RESEARCH QUESTION: What are CAB members' views on the best practices for CAB formation and maintenance in a rare pulmonary disease? STUDY DESIGN AND METHODS: In August 2021, we formed the Cleveland Clinic Sarcoidosis Health Partners (CC-HP) as a CAB to direct research and clinic improvement initiatives at a quaternary sarcoidosis center. We collaboratively evaluated our process for formation and maintenance of the CC-HP with the patient members of the group. Through the series of reflection/debriefing discussions, CAB patient members developed a consensus account of salient obstacles and facilitators of forming and maintaining a CAB in a rare pulmonary disease. RESULTS: Clinician and community members of the CC-HP found published guidelines to be an effective tool for structuring formation of a CAB in a rare pulmonary disease. Facilitators included a dedicated coordinator, collaborative development of projects, and a focus on improving clinical care. Obstacles to CAB functioning were formal structure, focus on projects with academic merit but no immediate impact to patients, and overreliance on digital resources. INTERPRETATION: By centering our evaluation of our CAB on community member experience, we were able to both identify facilitators and impediments to CAB as well as improve our own processes.


Assuntos
Comitês Consultivos , Humanos , Sarcoidose/terapia
16.
Front Public Health ; 12: 1348242, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38476491

RESUMO

More young people are living in the world than ever before, 90% of whom reside in low and middle income countries (LMICs). To address their needs, it is critical to have sustainable youth engagement when determining policy and to advance effective implementation of youth-focused interventions. Youth Community Advisory Boards (CABs) are a sustainable mechanism to achieve this goal. This paper describes engagement with youth CAB members across four locations in Tanzania. To set youth CAB meeting agendas and priorities, we asked youth CAB members to write (using free text) the top five challenges faced by young people in their communities (highest to lower priority). The Google Forms survey link was presented at the May 2023 youth CAB meeting and disseminated through WhatsApp. The survey was completed by smartphone, tablet, or paper provided to the youth liaison for data entry. Results were translated from Swahili to English and coded using excel. Findings were then presented back to the youth CABs at the September 2023 meeting. At that meeting, youth CAB members were then asked to write (free text) potential solutions to the most commonly described challenges. The surveys had response rates of 90% (84/93) for challenges and 78% (71/93) for solutions. The number one reported challenge was unemployment and financial instability (45%). Gender based violence (13%), sexual reproductive health issues (8%), and alcohol and drug use (8%) were in the top four both by priority and frequency of report. Other important challenges included physical and mental health, malnutrition, relationships, education, and societal and environmental norms, among others. Solutions included job creation, improved education, expanded legal systems, youth-friendly health care services, and increased social support through peer networks and community support. The National Accelerated Action and Investment Agenda for Adolescent Health and Wellbeing (NAIA-AHW) 2021/22-2024/25 includes most, but not all, of these top challenges and solutions. Ensuring young people have a seat at the policy table is critical to effective youth-empowerment in health and other related programs. Including a youth CAB member to represent this collective in youth-related government activities is a sustainable model to achieve this goal.


Assuntos
Saúde Mental , Poder Psicológico , Humanos , Adolescente , Tanzânia
17.
Front Pediatr ; 12: 1396003, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39081924

RESUMO

Introduction: Pediatric lower urinary tract symptoms (LUTS) are highly prevalent in neurologically healthy school-aged children. However, no evidence-based programs exist to prevent or treat LUTS in the community setting. To address this, we established the first community advisory board (CAB) that aims to identify individual and societal structures impacting pediatric bladder health in Northern California's Bay Area and co-design culturally relevant bladder health interventions. Methods: Probability and non-probability sampling methods were used to recruit community stakeholders to the CAB. Our final CAB comprised of two parents, two community health workers, one educator, one pediatric urology registered nurse, and one pediatrician. The CAB met quarterly during the 1-year study period. Results: Bi-directional feedback identified community-level barriers to bladder health, particularly in the school environment, and the need for tailored resources to teach children and families about healthy bladder behaviors. Discussion: The CAB co-designed school-based bladder health interventions, including bladder health posters, and provided feedback on three school-based research study proposals. The CAB will continue to guide and inform future community-engaged research efforts.

18.
J Clin Transl Sci ; 8(1): e1, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38384918

RESUMO

Background: Community advisory boards (CABs) are an established approach to ensuring research reflects community priorities. This paper examines two CABs that are part of the HEALing Communities Study which aims to reduce overdose mortality. This analysis aimed to understand CAB members' expectations, experiences, and perspectives on CAB structure, communication, facilitation, and effectiveness during the first year of an almost fully remote CAB implementation. Current literature exploring these perspectives is limited. Methods: We collected qualitative and survey data simultaneously from members (n = 53) of two sites' CABs in the first 9 months of CAB development. The survey assessed trust, communication, and relations; we also conducted 32 semi-structured interviews. We analyzed the survey results descriptively. The qualitative data were analyzed using a deductive codebook based on the RE-AIM PRISM framework. Themes were drawn from the combined qualitative data and triangulated with survey results to further enrich the findings. Results: CAB members expressed strong commitment to overall study goals and valued the representation of occupational sectors. The qualitative data described a dissonance between CAB members' commitment to the mission and unmet expectations for influencing the study within an advisory role. Survey results indicated lower satisfaction with the research teams' ability to create a mutually beneficial process, clear communication, and sharing of power. Conclusion: Building a CAB on a remote platform, within a study utilizing a community engagement strategy, still presents challenges to fully realizing the potential of a CAB. These findings can inform more effective operationalizing of community-engaged research through enhanced CAB engagement.

19.
Am J Mens Health ; 18(5): 15579883241280826, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39340388

RESUMO

Prostate cancer disproportionately affects Black men in the United States, leading to higher mortality rates and health disparities. In addition, based on historical mistreatment and discrimination and the resulting distrust of the medical system, Black populations are consistently underrepresented in health care-related research. Addressing these challenges requires community-driven approaches integrating diverse perspectives and fostering equitable health outcomes. This article describes the formation and impact of The Multidisciplinary Health Outcomes Research and Economics (MORE) Lab Community Advisory Board (CAB) at The University of Oklahoma Health Sciences. We purposefully recruited Black men with CaP and Black health care professionals to serve on a CAB and advise on ongoing research to address quality of life (QoL) issues in ethnically diverse Black CaP survivors. The CAB seeks to mitigate CaP disparities and improve health equity by empowering Black voices and promoting collaborative research practices. The MORE Lab CAB has successfully provided a venue for community members to contribute to designing a culturally relevant research program to improve the QoL in ethnically diverse Black men with CaP. The CAB has been instrumental in developing research goals and tools, implementing a series of town hall meetings to educate and support Black CaP survivors, and disseminating research findings. In conclusion, CABs are potentially critical in guiding research, enhancing community engagement, and advocating for culturally responsive health interventions.


Assuntos
Comitês Consultivos , Negro ou Afro-Americano , Neoplasias da Próstata , Humanos , Masculino , Negro ou Afro-Americano/psicologia , Neoplasias da Próstata/etnologia , Pesquisa Participativa Baseada na Comunidade , Pessoa de Meia-Idade , Participação da Comunidade , Estados Unidos , Qualidade de Vida , Oklahoma , Idoso
20.
Child Abuse Negl ; 144: 106385, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37541095

RESUMO

OBJECTIVE: Intimate partner violence (IPV) affects 1 in 4 American women, and physical child abuse is reported to occur in 10-67 % of homes with IPV. Routine evaluation of physical abuse in IPV-exposed children is neither widespread nor informed by clinical guidelines. Thus, the true frequency of detectable injuries in IPV-exposed children remains unknown. The purpose of this study was to examine the frequency of injuries in children <3-years-old reported for IPV to a regional child protective services (CPS) office. METHODS: In this prospective observational study, we reviewed encounters of children whose caregivers agreed to an evaluation for injuries (physical exam and imaging, if indicated) from July 2019-June 2022. Children were included if: 1) a CPS investigator referred a child for evaluation for injuries ("non-acute" evaluation) or 2) a child presented immediately after an IPV incident ("acute" evaluation). RESULTS: Of 326 children <3-years-old reported to the CPS office after IPV exposure, 90 (27.6 %) were evaluated: 81(90 %) presented for a non-acute evaluation, and 21(23 %) were reported to have sustained trauma during the IPV event. Of the 90 children evaluated, 3 (3.3 %, 95 % CI 0.7-9.4) were found to have cutaneous injuries, fractures, and/or intracranial findings. Each was <6-months old and had an "acute" evaluation. CONCLUSION: In this study of children reported to CPS for IPV exposure, a small percentage was found to have injuries. A multi-center study that examines the frequency of and factors that increase the risk of abusive injuries in IPV-exposed children may ensure that testing targets children at highest risk.


Assuntos
Maus-Tratos Infantis , Fraturas Ósseas , Violência por Parceiro Íntimo , Pré-Escolar , Feminino , Humanos , Lactente , Estudos Multicêntricos como Assunto , Estudos Observacionais como Assunto , Abuso Físico , Programas Voluntários
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