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1.
Lupus ; 33(1): 58-67, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38047461

RESUMO

In response to racial inequities in systemic lupus erythematosus (SLE), we aimed to identify practical recommendations for increasing engagement and inclusion of Black adults in SLE research. We used a qualitative, interpretive description approach and recruited 30 Black adults diagnosed with SLE in Michigan to participate in semi-structured interviews. Theme development focused on what factors influenced research perceptions and how research did not meet participant needs and expectations. We developed five main themes: (1) Ethical and equitable research. Participants shared how the impacts of past and present-day racism impacted their willingness to participate in research. (2) Trusting researchers to conduct studies and translate findings to health care. Participants had concerns related to researcher intentions and expressed the importance of communicating research outcomes to participants and translating findings to health care. (3) Drug trial beneficence. When considering drug trials, several people did not consider the potential benefits worth the risk of side effects, and some said they would need to consult with their doctor before agreeing to participate. (4) Altruism. Participants explained how the desire to help others was a motivating factor for participating in research and donating biological samples. (5) Research priorities. Participants described a need for better treatments that value their overall health and well-being. Findings indicate that researchers can center the perspectives of Black people with SLE across the research life cycle-beyond a focus on adequate racial diversity among study participants.


Assuntos
Lúpus Eritematoso Sistêmico , Adulto , Humanos , Lúpus Eritematoso Sistêmico/diagnóstico , Pesquisa Qualitativa , População Negra , Atenção à Saúde , Confiança
2.
Int J Eat Disord ; 2024 Jun 27.
Artigo em Inglês | MEDLINE | ID: mdl-38934652

RESUMO

OBJECTIVE: Food insecurity is associated with eating disorder psychopathology. This Spotlight describes why food pantries could be promising partners for disseminating and implementing eating disorder interventions. METHOD: Researchers are increasingly collaborating with community-based organizations to improve access to health interventions, because community-based organizations overcome structural barriers to traditional healthcare by being embedded physically in the communities they serve, convenient to visit, regularly frequented, and led by trusted community members. RESULTS: We describe strategies we have identified with our partner to disseminate and implement our digital intervention for binge eating; we also discuss ways we support the pantry's needs to improve the mutuality of the partnership. DISCUSSION: The potential benefits of partnerships with food pantries make this an area to explore further. Future research directions include deeply engaging with food pantries to determine how pantries benefit from disseminating and implementing eating disorder interventions and how to intervene in non-stigmatizing ways, what resources they need to sustainably support these efforts, what eating disorder intervention modalities guests are willing and able to engage with, what intervention adaptations are needed so individuals with food insecurity can meaningfully engage in eating disorder intervention, and what implementation strategies facilitate uptake to intervention sustainably over time.

3.
BMC Womens Health ; 24(1): 233, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38610011

RESUMO

BACKGROUND: Uterine fibroids are non-cancerous neoplasms that arise from the uterus affecting over 75% of women. However, there is a disparity with Black women having an increased prevalence of nearly 80%. Black women also experience increased symptom burden, including younger age at the time of diagnosis and increased number and volume of fibroids. Less is known about other ethnoracially diverse women such as Latinas and the potential cultural impacts on fibroid burden and treatment. METHODS: Community engagement studios were conducted to facilitate discussions with stakeholders on their uterine fibroid and menstruation experience. We recruited Black women (n = 6) diagnosed with uterine fibroids and Latinas (n = 7) without uterine fibroids. We held two virtual community engagement studios split by uterine fibroid diagnosis. The studios were not audio recorded and notes were taken by four notetakers. The notes were thematically analyzed in Atlas.ti using content analysis. RESULTS: Participants felt there was a lack of discussion around menstruation overall, whether in the home or school settings. This lack of menstruation education was pronounced when participants had their first menstruation experience, with many unaware of what to expect. This silence around menstruation led to a normalization of painful menstruation symptoms. When it came to different treatment options for uterine fibroids, some women wanted to explore alternative treatments but were dismissed by their healthcare providers. Many participants advocated for having discussions with their healthcare provider about life goals to discuss different treatment options for their uterine fibroids. CONCLUSION: Despite uterine fibroid diagnosis, there is silence around menstruation. Menstruation is a normal biological occurrence and needs to be discussed to help prevent delayed diagnosis of uterine fibroids and possibly other gynecological disorders. Along with increased discussions around menstruation, further discussion is needed between healthcare providers and uterine fibroid patients to explore appropriate treatment options.


Assuntos
Leiomioma , Menstruação , Feminino , Humanos , População Negra , Dismenorreia , Hispânico ou Latino , Leiomioma/complicações , Negro ou Afro-Americano
4.
J Genet Couns ; 2024 Feb 13.
Artigo em Inglês | MEDLINE | ID: mdl-38348488

RESUMO

Genetic counseling research requires a comprehensive approach since it frequently serves as the foundation for clinical care practice. Genetic counseling students play a pivotal role in advancing the profession, as they contribute a significant proportion of the research conducted within the genetic counseling community. However, a prevailing trend of convenience sampling of genetic counselors has limited the diversity of perspectives in student research projects. This article promotes a strategy for greater inclusivity and equity in research by emphasizing community-engaged and empowered research through the perspective of restorative justice. Reflecting on the shadow of the harmful ideologies of eugenics in our profession underscores the need to amplify patients' voices and diverse experiences. Community-engaged research-in collaboration with individuals, families, and communities directly impacted by genetic counseling-transcends traditional research paradigms, empowering patients and addressing systemic inequities. Incorporating community-engaged research into genetic counseling student projects aims to empower future professionals to better understand patient perspectives and needs while working toward addressing historical injustices. This article explores the potential benefits and pathways of incorporating community-engaged research and restorative justice principles into genetic counseling scholarly work, promoting empathy, cultural responsiveness, and ultimately, a more patient-centered approach to research and clinical care. By embracing this collective journey toward authentic partnership in the production of high-quality evidence in genetic counseling student research and more broadly, genetic counseling can become a more just and inclusive practice.

5.
Matern Child Health J ; 28(3): 400-408, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38265635

RESUMO

PURPOSE: In an effort to address persistent inequities in maternal and infant health, policymakers and advocates have pushed to expand access to doula care. Several states, including California, now cover doula services through Medicaid. As coverage expands, research on the impact of doula care will likely increase. To develop best practices for research, it is critical to engage community doulas, clients, and other key stakeholders. DESCRIPTION: Our overarching goal was to build capacity for future doula- and client-centered research on community doula care. First, we established a Steering Committee with members from seven relevant stakeholder groups: community doulas, former or potential doula clients, clinicians, payers, advocates, researchers, and public health professionals. Second, we conducted a needs assessment to identify and understand stakeholders' needs and values for research on community doula care. Findings from the needs assessment informed our third step, conducting a research prioritization to develop a shared research agenda related to community doula care with the Steering Committee. We adapted the Research Prioritization by Affected Communities protocol to guide this process, which resulted in a final list of 21 priority research questions. Lastly, we offered a training to increase capacity among community doulas to engage in research on community doula care. ASSESSMENT: Our findings provide direction for those interested in conducting research on doula care, as well as policymakers and funders. CONCLUSION: The findings of our stakeholder-engaged process provide a roadmap that will lead to equity-oriented research centering clients, doulas, and their communities.


Assuntos
Doulas , Humanos , Fortalecimento Institucional , California , Motivação
6.
Public Health ; 232: 38-44, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38733959

RESUMO

BACKGROUND: While a major goal of community-based participatory research (CBPR) is to improve community health; it is unclear how to measure longstanding success of CBPR. OBJECTIVE: We sought to determine the impact of ongoing CBPR on cardiometabolic health of participating communities, including in people not directly participating in research. METHODS: We used linear mixed-effects modelling with electronic medical records from 2002 to 2012 from the Yukon-Kuskokwim Health Corporation, which provides health care to all Alaska Native people in southwestern Alaska, to compare rates of change in cardiometabolic risk factors between communities that did and did not participate in ongoing CBPR beginning in 2003. RESULTS: We analysed 1,262,035 medical records from 12,402 individuals from 10 study and 38 control communities. Blood pressure declined faster in study than in control communities: systolic blood pressure (0.04 mmHg/year; 95% confidence interval [CI]: 0.01, 0.08); diastolic blood pressure (DBP) (0.07 mmHg/year; 95% CI: 0.04, 0.09). Body mass index increased 0.04 units/year faster in study communities than in control communities (95% CI: 0.03, 0.05). More study visits were associated with faster reduction of DBP and triglyceride levels in study communities. CONCLUSIONS: Ongoing CBPR may improve overall cardiometabolic health in communities, perhaps by increasing engagement in health and advocacy.


Assuntos
Pesquisa Participativa Baseada na Comunidade , Registros Eletrônicos de Saúde , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Registros Eletrônicos de Saúde/estatística & dados numéricos , Alaska/epidemiologia , Pressão Sanguínea , Fatores de Risco Cardiometabólico , Nativos do Alasca/estatística & dados numéricos , Índice de Massa Corporal , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/prevenção & controle , Idoso , Adulto Jovem
7.
Harm Reduct J ; 21(1): 122, 2024 Jun 25.
Artigo em Inglês | MEDLINE | ID: mdl-38914988

RESUMO

BACKGROUND: The present commentary highlights the pressing need for systematic research to assess the implementation and effectiveness of medications for opioid use disorder, used in conjunction with peer recovery support services, to improve treatment outcomes for individuals with opioid use disorder in Central Appalachia. This region, encompassing West Virginia, Eastern Kentucky, Southwest Virginia, East Tennessee, and Western North Carolina, has long grappled with a disproportionate burden of the opioid crisis. Due to a complex interplay of cultural, socioeconomic, medical, and geographic factors, individuals in Central Appalachia face challenges in maintaining treatment and recovery efforts, leading to lower success rates. APPROACH: To address the issue, we apply an exploratory approach, looking at the intersection of unique regional factors with the utilization of medications for opioid use disorder, in conjunction with peer recovery support services. This combined treatment strategy shows promise in addressing crucial needs in opioid use disorder treatment and enhancing the recovery journey. However, there are significant evidence gaps that need to be addressed to validate the expected value of incorporating peer support into this treatment strategy. CONCLUSION: We identify nine obstacles and offer recommendations to address the gaps and advance peer recovery support services research. These recommendations include the establishment of specific partnerships and infrastructure for community-engaged, peer recovery support research; improved allocation of funding and resources to implement evidence-based practices such as peer support and medication-assisted treatment; developing a more precise definition of peer roles and their integration across the treatment and recovery spectrum; and proactive efforts to combat stigma through outreach and education.


Assuntos
Transtornos Relacionados ao Uso de Opioides , Grupo Associado , Humanos , Região dos Apalaches , Epidemia de Opioides , Tratamento de Substituição de Opiáceos/métodos , Apoio Social
8.
J Intellect Disabil ; : 17446295241245783, 2024 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-38578112

RESUMO

This article describes the development of a distance-delivered social skills training program for adults with Williams syndrome (SSTP-WS) through a community engaged approach. Throughout six phases of development, the research team received input from adults with Williams syndrome, caregivers, service providers, educators, and researchers on (a) the need for a training program and topics to be addressed (Phase 1), (b) an initial draft of the SSTP-WS (Phase 3), (c) the intervention pilot study (Phase 5), and (d) feedback to provide context for the results of the study (Phase 6). The development of the SSTP-WS resulted in an intervention aligned with the Williams syndrome community's values and needs that supports the unique cognitive and behavioral phenotypes and social characteristics of this low incidence disability population.

9.
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
10.
Ecol Appl ; 33(5): e2792, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36482777

RESUMO

The Southeast Region of the United States Fish and Wildlife Service (USFWS) implemented community-engaged research in Proctor Creek, an urban watershed in Northwest Atlanta, Georgia, to sample for aquatic species of concern in Atlanta, Georgia's Proctor Creek Watershed as a part of the Urban Waters Federal Partnership program. This research shifted the focus of the agency from the endangered and pristine natural spaces to a major city watershed negatively impacted by urbanization and other human influences for more than a century. Team members from USFWS, Proctor Creek Watershed residents, local students, and other stakeholders in the Urban Waters Federal Partnership (UWFP) spent three months conducting stream surveys and participating in community-led events to build relationships and learn community priorities. The team collected data at 11 sites throughout the Proctor Creek Watershed, visually assessed each site, and collected aquatic species using dip nets, seines, and traps. We observed approximately 28 aquatic species, including 13 unique fish species, and eight macroinvertebrate species, including two unique crayfish species. We also observed varying degrees of ecological health throughout the watershed. Native aquatic animal species were found at all stream sites, no matter the condition of the stream. Through creating training resources and disseminating data among team members for future sampling, the team established pathways to keep natural resource stewardship sustainable without direct federal involvement. Through engaging in community-engaged research to achieve the mission of the agency, the USFWS Proctor Creek Watershed survey helped shift the paradigm of how government agencies can connect their mission statements to the ever-changing complex needs of the American public.


Assuntos
Rios , Urbanização , Animais , Estados Unidos , Humanos , Georgia , Cidades , Peixes
11.
Int J Equity Health ; 22(1): 182, 2023 09 08.
Artigo em Inglês | MEDLINE | ID: mdl-37679827

RESUMO

BACKGROUND: Historical trauma experienced by Indigenous peoples of North America is correlated with health disparities and is hypothesized to be associated with DNA methylation. Massive group traumas such as genocide, loss of land and foodways, and forced conversion to Western lifeways may be embodied and affect individuals, families, communities, cultures, and health. This study approaches research with Alaska Native people using a community-engaged approach designed to create mutually-beneficial partnerships, including intentional relationship development, capacity building, and sample and data care. METHODS: A total of 117 Alaska Native individuals from two regions of Alaska joined the research study. Participants completed surveys on cultural identification, historical trauma (historical loss scale and historical loss associated symptoms scale), and general wellbeing. Participants provided a blood sample which was used to assess DNA methylation with the Illumina Infinium MethylationEPIC array. RESULTS: We report an association between historical loss associated symptoms and DNA methylation at five CpG sites, evidencing the embodiment of historical trauma. We further report an association between cultural identification and general wellbeing, complementing evidence from oral narratives and additional studies that multiple aspects of cultural connection may buffer the effects of and/or aid in the healing process from historical trauma. CONCLUSION: A community-engaged approach emphasizes balanced partnerships between communities and researchers. Here, this approach helps better understand embodiment of historical trauma in Alaska Native peoples. This analysis reveals links between the historical trauma response and DNA methylation. Indigenous communities have been stigmatized for public health issues instead caused by systemic inequalities, social disparities, and discrimination, and we argue that the social determinants of health model in Alaska Native peoples must include the vast impact of historical trauma and ongoing colonial violence.


Assuntos
Trauma Histórico , Humanos , Metilação , Alaska/epidemiologia , Participação da Comunidade , Participação dos Interessados , Povos Indígenas
12.
Int J Geriatr Psychiatry ; 38(8): e5984, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37606595

RESUMO

OBJECTIVES: The Building Capacity Project is an asset-based community development initiative that aims to reduce stigma and promote social inclusion for people with dementia. Using a community-based participatory approach, we conducted research to examine the relational patterns and participatory practices within and across project sites in two different regions of Canada (Vancouver and Thunder Bay). METHODS: Five focus groups and five individual interviews were conducted with team members and community partners (n = 29) and analysed for themes. RESULTS: The overarching theme of Making Space at the Table explains how the participation of people with dementia has served both as a value and a practice shaping the relational work throughout the project. Three sub-themes include: Maintaining a common foundation; Creating communication pathways; and Fostering personal connections. CONCLUSIONS: Together, these findings show how community development can support the meaningful participation of people with dementia in their communities through processes of collaboration that focus on individual and collective strengths, that allow time for the work to unfold, and for building relationships that foster trust and respect for diversity.


Assuntos
Comunicação , Apoio Comunitário , Demência , Participação do Paciente , Inclusão Social , Humanos , Estigma Social , Canadá , Grupos Focais , Entrevistas como Assunto , Confiança , Diversidade, Equidade, Inclusão , Pesquisa Qualitativa , Relações Interpessoais
13.
BMC Womens Health ; 23(1): 188, 2023 04 20.
Artigo em Inglês | MEDLINE | ID: mdl-37081433

RESUMO

BACKGROUND: Disparities in sleep duration are a modifiable contributor to increased risk for cardiometabolic disorders in communities of color. We examined the prevalence of short sleep duration and interest in improving sleep among a multi-ethnic sample of women participating in a culturally tailored wellness coaching program and discussed steps to engage communities in sleep health interventions. METHODS: Secondary analysis of data from a randomized trial were used. The wellness coaching trial utilized a Community-Based Participatory Research (CBPR) approach. Data were from the baseline survey and baseline wellness coaching notes. Short sleep duration was defined as < 7 h of self-reported sleep. Participants were prompted to set a goal related to healthy eating/physical activity and had the opportunity to set another goal on any topic of interest. Those who set a goal related to improving sleep or who discussed a desire to improve sleep during coaching were classified as having an interest in sleep improvement. Analyses utilized multivariable models to evaluate factors contributing to short sleep and interest in sleep improvement. We present our process of discussing results with community leaders and health workers. RESULTS: A total of 485 women of color participated in the study. Among these, 199 (41%) reported short sleep duration. In adjusted models, Blacks/African Americans and Native Hawaiians/Pacific Islanders had higher odds of reporting < 7 h of sleep than Hispanics/Latinas. Depression symptoms and self-reported stress management scores were significantly associated with short sleep duration. Interest in sleep improvement was noted in the wellness coaching notes of 52 women (10.7%); sleep was the most common focus of goals not related to healthy eating/physical activity. African Immigrants/Refugees and African Americans were less likely to report interest in sleep improvement. Community leaders and health workers reported lack of awareness of the role of sleep in health and discussed challenges to obtaining adequate sleep in their communities. CONCLUSION: Despite the high prevalence of short sleep duration, interest in sleep improvement was generally low. This study highlights a discrepancy between need and interest, and our process of community engagement, which can inform intervention development for addressing sleep duration among diverse women.


Assuntos
Promoção da Saúde , Duração do Sono , Feminino , Humanos , Exercício Físico , Promoção da Saúde/métodos , Sono , Pesquisa Participativa Baseada na Comunidade
14.
BMC Public Health ; 23(1): 1732, 2023 09 06.
Artigo em Inglês | MEDLINE | ID: mdl-37674147

RESUMO

BACKGROUND: As exposure assessment has shifted towards community-engaged research there has been an increasing trend towards reporting results to participants. Reports aim to increase environmental health literacy, but this can be challenging due to the many unknowns regarding chemical exposure and human health effects. This includes when reports encompass a wide-range of chemicals, limited reference or health standards exist for those chemicals, and/or incompatibility of data generated from exposure assessment tools with published reference values (e.g., comparing a wristband concentration to an oral reference dose). METHODS: Houston Hurricane Harvey Health (Houston-3H) participants wore silicone wristbands that were analyzed for 1,530 organic compounds at two time-points surrounding Hurricane Harvey. Three focus groups were conducted in separate neighborhoods in the Houston metropolitan area to evaluate response to prototype community and individual level report-backs. Participants (n = 31) evaluated prototype drafts using Likert scales and discussion prompts. Focus groups were audio-recorded, and transcripts were analyzed using a qualitative data analysis program for common themes, and quantitative data (ranking, Likert scales) were statistically analyzed. RESULTS: Four main themes emerged from analysis of the transcripts: (1) views on the report layout; (2) expression of concern over how chemicals might impact their individual or community health; (3) participants emotional response towards the researchers; and (4) participants ability to comprehend and evaluate environmental health information. Evaluation of the report and key concerns differed across the three focus groups. However, there was agreement amongst the focus groups about the desire to obtain personal exposure results despite the uncertainty of what the participant results meant. CONCLUSIONS: The report-back of research results (RBRR) for community and individual level exposure assessment data should keep the following key principles in mind: materials should be accessible (language level, data visualization options, graph literacy), identify known information vs unknown (e.g., provide context for what exposure assessment data means, acknowledge lack of current health standards or guidelines), recognize and respect community knowledge and history, and set participant expectations for what they can expect from the report.


Assuntos
Tempestades Ciclônicas , Humanos , Retroalimentação , Emoções , Saúde Ambiental , Grupos Focais
15.
BMC Public Health ; 23(1): 1356, 2023 07 14.
Artigo em Inglês | MEDLINE | ID: mdl-37452299

RESUMO

BACKGROUND: Inequities in COVID-19 vaccine accessibility and reliable COVID-related information disproportionately affected marginalized racial and ethnic communities in the U.S. The Get Out the Vaccine (GOTVax) program, an innovative statewide government-funded COVID-19 vaccine canvassing program in California, aimed to reduce structural barriers to COVID-19 vaccination in high-risk communities with low vaccination rates. GOTVax consisted of a community-academic-government partnership with 34 local trusted community-based organizations' (CBOs) to conduct COVID-19 vaccine outreach, education, and vaccine registration. The purpose of this qualitative evaluation study was to explore the barriers and facilitators of using local CBOs to deploy a geographically, racially, and ethnically diverse state-wide COVID-19 vaccine outreach program. METHODS: Semi-structured online interviews were conducted with participating GOTVax CBO leaders from November 2021 to January 2022. Transcripts were analyzed using reflexive thematic analysis. RESULTS: Thirty-one of 34 CBOs participated (91% response rate). Identified themes encompassed both facilitators and barriers to program participation. Key facilitators included leveraging trust through recognized entities; promoting empathetic, tailored outreach; and flexibility of milestone-based CBO funding contracts for rapid program implementation. Barriers included navigating community sociopolitical, geographic, and cultural factors; managing canvassers' safety; desiring metrics for self-evaluation of outreach success; mitigating canvassing technology challenges; and concerns of program infrastructure initially limiting outreach. CBOs problem-solved barriers with academic and government partners. CONCLUSIONS: Between May and December 2021, the GOTVax program reached over 2 million California residents and registered over 60,000 residents for COVID-19 vaccination. Public health campaigns may improve benefits from leveraging the expertise of community-trusted CBOs and universities by providing flexible infrastructure and funding, allowing CBOs to seamlessly tailor outreach most applicable to local minoritized communities.


Assuntos
Vacinas contra COVID-19 , COVID-19 , Humanos , COVID-19/prevenção & controle , Organizações , California , Pesquisa Qualitativa
16.
BMC Health Serv Res ; 23(1): 174, 2023 Feb 21.
Artigo em Inglês | MEDLINE | ID: mdl-36810066

RESUMO

BACKGROUND: In 2019-2020, with National Cancer Institute funding, seven implementation laboratory (I-Lab) partnerships between scientists and stakeholders in 'real-world' settings working to implement evidence-based interventions were developed within the Implementation Science Centers in Cancer Control (ISC3) consortium. This paper describes and compares approaches to the initial development of seven I-Labs in order to gain an understanding of the development of research partnerships representing various implementation science designs. METHODS: In April-June 2021, members of the ISC3 Implementation Laboratories workgroup interviewed research teams involved in I-Lab development in each center. This cross-sectional study used semi-structured interviews and case-study-based methods to collect and analyze data about I-Lab designs and activities. Interview notes were analyzed to identify a set of comparable domains across sites. These domains served as the framework for seven case descriptions summarizing design decisions and partnership elements across sites. RESULTS: Domains identified from interviews as comparable across sites included engagement of community and clinical I-Lab members in research activities, data sources, engagement methods, dissemination strategies, and health equity. The I-Labs use a variety of research partnership designs to support engagement including participatory research, community-engaged research, and learning health systems of embedded research. Regarding data, I-Labs in which members use common electronic health records (EHRs) leverage these both as a data source and a digital implementation strategy. I-Labs without a shared EHR among partners also leverage other sources for research or surveillance, most commonly qualitative data, surveys, and public health data systems. All seven I-Labs use advisory boards or partnership meetings to engage with members; six use stakeholder interviews and regular communications. Most (70%) tools or methods used to engage I-Lab members such as advisory groups, coalitions, or regular communications, were pre-existing. Think tanks, which two I-Labs developed, represented novel engagement approaches. To disseminate research results, all centers developed web-based products, and most (n = 6) use publications, learning collaboratives, and community forums. Important variations emerged in approaches to health equity, ranging from partnering with members serving historically marginalized populations to the development of novel methods. CONCLUSIONS: The development of the ISC3 implementation laboratories, which represented a variety of research partnership designs, offers the opportunity to advance understanding of how researchers developed and built partnerships to effectively engage stakeholders throughout the cancer control research lifecycle. In future years, we will be able to share lessons learned for the development and sustainment of implementation laboratories.


Assuntos
Laboratórios , Neoplasias , Humanos , Estudos Transversais , Atenção à Saúde , Comunicação
17.
J Genet Couns ; 32(6): 1232-1237, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37752687

RESUMO

Recruiting racially and ethnically underrepresented participants into genetics research studies has been challenging. While many institutions have taken steps to address the inequity in genetics research, genetic counseling training programs have the chance to inspire students to engage with underrepresented communities through utilizing different research methodologies. These methodologies can help students focus on research projects that increase access to genetics services and improve clinical care. Community-engaged research (CER) presents a pedagogical approach to enhance service-learning opportunities for students. Furthermore, it allows students to develop practical research skills for doing research with the community, rather than on the community. CER is a collaborative community-academic partnership that leads to mutual benefit and outcomes such as inclusion and engagement of the community in research, building trust and relationships, and increasing cultural awareness and exposure. In addition, CER can be used to address research and healthcare inequities by providing opportunities for genetics professionals and trainees to work closely with underrepresented populations. We aim to highlight the opportunities CER provides to students, mentors, and faculty within the context of graduate research in genetic counseling training from the experiences of a student and an educator. In addition, we hope to emphasize the necessity for projects like these to address the gaps in participation of underrepresented patient populations in research and identify areas that are mutually beneficial to improve health outcomes, patient care experiences, access, and service delivery. This reflective essay illustrates the completion of a CER project that was developed in collaboration with community members to address gaps in clinical genetics services in Indigenous healthcare.


Assuntos
Aprendizagem , Estudantes , Humanos , Atenção à Saúde
18.
Behav Med ; : 1-9, 2023 Aug 24.
Artigo em Inglês | MEDLINE | ID: mdl-37615081

RESUMO

Community-engaged research is increasingly recognized for its potential to advance health equity. The ability to conduct such research in the United States is predicated on the completion of human subjects protection courses; however, prior studies suggest that many of these required courses may not adequately accommodate the varied skillsets and backgrounds of community members involved with carrying out research. The present study explores community researchers' (CRs') experiences with a human subjects protection course frequently required by U.S. academic institutions. Six CRs involved in conducting a community-based participatory research (CBPR) project on Black women's pregnancy-related experiences were interviewed about their completion of the required course. Across multiple interviews, CRs noted challenges with the training length, competing external demands, module readability, content relevancy, end-of-module quizzes, and technology requirements. Despite such obstacles, CRs still valued the opportunity to learn and felt more knowledgeable and capable post-course completion. Recommendations for course improvement were explored. University requirements for human subjects protection trainings may place an undue burden on community members preparing to conduct research, impede academic-community partnerships, and discourage the initiation and continuation of community-engaged studies. Course alternatives that are tailored to CRs as well as community-academic partnerships could enhance the feasibility, relevance, and effectiveness of such trainings.

19.
J Cancer Educ ; 38(3): 957-962, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36056185

RESUMO

Funding communities through mini-grant programs builds community capacity by fostering leadership among community members, developing expertise in implementing evidence-based practices, and increasing trust in partnerships. The South Carolina Cancer Prevention and Control Research Network (SC-CPCRN) implemented the Community Health Intervention Program (CHIP) mini-grants initiative to address cancer-related health disparities among high-risk populations in rural areas of the state. One community-based organization and one faith-based organization were funded during the most recent call for proposals. The organizations implemented National Cancer Institute evidence-based strategies and programs focused on health and cancer screenings and physical activity and promotion of walking trails. Despite the potential for the COVID-19 pandemic to serve as a major barrier to implementation, grantees successfully recruited and engaged community members in evidence-based activities. These initiatives added material benefits to their local communities, including promotion of walking outdoors where it is less likely to contract the virus when socially distanced and provision of COVID-19 testing and vaccines along with other health and cancer screenings. Future mini-grants programs will benefit from learning from current grantees' flexibility in program implementation during a pandemic as well as their intentional approach to modifying program aspects as needed.


Assuntos
COVID-19 , Pandemias , Humanos , Pandemias/prevenção & controle , Teste para COVID-19 , COVID-19/epidemiologia , COVID-19/prevenção & controle , South Carolina , Organização do Financiamento
20.
Health Promot Pract ; : 15248399231221157, 2023 Dec 28.
Artigo em Inglês | MEDLINE | ID: mdl-38153025

RESUMO

Health and human service community organizations and researchers have important insights and resources to share with each other, yet often have very little information about how to interact in meaningful and equitable ways. Conceptualized by and for community organization professionals wanting to equitably interact with academic researchers, BRACE (Building Research for Academic and Community Equity) is a toolkit easily accessible to community members which explains research information and jargon in clear terms. BRACE uses community-based participatory research (CBPR) principles to guide both community organizations and academics seeking to partner on research. The BRACE toolkit's two main sections focus on identifying ideal aspects of community-academic research partnerships and writing grant proposals. Tools such as BRACE have the potential to increase the impact of community-engaged research by providing concrete guides for building partnerships and potentially sustaining them through grant funding.

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