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Cultivating strong partnerships among community and academic stakeholders expedites the translation of research findings into practice and communities by enhancing opportunities for research dissemination and implementation. However, the lack of systematic methods for community stakeholder engagement may decelerate the translational research process. The North Carolina Translational Research and Clinical Sciences Institute implemented an innovative approach to community engagement called the Action Learning Cohort (ALC) Series. The ALC Series, a workgroup extension of a professional conference, used action learning and systems thinking strategies to conceptualize and develop a product aimed at preventing, treating, and controlling hypertension in eastern North Carolina. We evaluated the acceptability and practicality of the ALC Series using survey, focus group, and interview pilot data. Action learning and systems thinking strategies led ALC stakeholders to develop and disseminate The Empathy Building Resource Guide: A Toolkit for Enhancing Patient-Provider Relationships in the Treatment, Management, and Prevention of Hypertension. Stakeholders rated the Series as satisfactory and acknowledged gains in knowledge and desire for engagement with fellow ALC stakeholders beyond the Series. The ALC Series approach is a potentially practical and acceptable model for systematically engaging community stakeholders in translating knowledge into a product that addresses health topics like hypertension.
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Participação da Comunidade , Participação dos Interessados , Estudos de Coortes , Humanos , North Carolina , Pesquisa Translacional BiomédicaRESUMO
INTRODUCTION: Chronic diseases are common among African Americans, but the extent to which research has focused on addressing chronic diseases across multiple members of African American families is unclear. This systematic scoping review summarizes the characteristics of research addressing coexisting chronic conditions among African American families, including guiding theories, conditions studied, types of relationships, study outcomes, and intervention research. METHODS: The literature search was conducted in PsycInfo, PubMed, Social Work Abstracts, Sociological Abstracts, CINAHL, and Family and Society Studies Worldwide to identify relevant articles published from January 2000 through September 2016. We screened the title and abstracts of 9,170 articles, followed by full-text screening of 530 articles, resulting in a final sample of 114 articles. Fifty-seven percent (n = 65) of the articles cited a guiding theory/framework, with psychological theories (eg, social cognitive theory, transtheoretical model) being most prominent. The most common conditions studied in families were depression (70.2%), anxiety (23.7%), and diabetes (22.8%), with most articles focusing on a combination of physical and mental health conditions (47.4%). RESULTS: In the 114 studies in this review, adult family members were primarily the index person (71.1%, n = 81). The index condition, when identified (79.8%, n = 91), was more likely to be a physical health condition (46.5%, n = 53) than a mental health condition (29.8%, n = 34). Among 343 family relationships examined, immediate family relationships were overwhelmingly represented (85.4%, n = 293); however, extended family (12.0%, n = 41) and fictive kin (0.6%, n = 2) were included. Most (57.0%, n = 65) studies focused on a single category of outcomes, such as physical health (eg, obesity, glycemic control), mental health (eg, depression, anxiety, distress), psychosocial outcomes (eg, social support, caregiver burden), or health behaviors (eg, medication adherence, disease management, health care utilization); however, 43.0% (n = 49) of studies focused on outcomes across multiple categories. Sixteen intervention articles (14.0%) were identified, with depression the most common condition of interest. CONCLUSION: Recognizing the multiple, simultaneous health issues facing families through a lens of family comorbidity and family multimorbidity may more accurately mirror the lived experiences of many African American families and better elucidate intervention opportunities than previous approaches.
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Negro ou Afro-Americano/estatística & dados numéricos , Doença Crônica/epidemiologia , Características da Família , Adolescente , Adulto , Criança , Feminino , Humanos , Incidência , Masculino , Multimorbidade , Adulto JovemRESUMO
Evidence of the effectiveness of community-based lifestyle behavior change interventions among African-American adults is mixed. We implemented a behavioral lifestyle change intervention, Heart Matters, in two rural counties in North Carolina with African-American adults. Our aim was to evaluate the effect of Heart Matters on dietary and physical activity behaviors, self-efficacy, and social support. We used a cluster randomized controlled trial to compare Heart Matters to a delayed intervention control group after 6 months. A total of 143 African-American participants were recruited and 108 completed 6-month follow-up assessments (75.5%). We used mixed regression models to evaluate changes in outcomes from baseline to 6-month follow-up. The intervention had a significant positive effect on self-reported scores of encouragement of healthy eating, resulting in an increase in social support from family of 6.11 units (95% CI [1.99, 10.22]) (p < .01). However, intervention participants also had an increase in discouragement of healthy eating compared to controls of 5.59 units (95% CI [1.46, 9.73]) among family (p < .01). There were no significant differences in changes in dietary behaviors. Intervention participants had increased odds (OR = 2.86, 95% CI [1.18, 6.93]) of increased frequency of vigorous activity for at least 20 min per week compared to control participants (p < .05). Individual and group lifestyle behavior counseling can have a role in promoting physical activity levels among rural African-American adults, but more research is needed to identify the best strategies to bolster effectiveness and influence dietary change. Trial Registration: Clinical Trials, NCT02707432. Registered 13 March 2016.
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Negro ou Afro-Americano , Redes Comunitárias , Dieta , Exercício Físico , Promoção da Saúde , Avaliação de Programas e Projetos de Saúde , Adulto , Análise por Conglomerados , Feminino , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , População RuralRESUMO
Introduction/Purpose: Efforts to improve chronic disease outcomes among US adults highlight families, particularly support from families, as a key aspect of disease prevention and management. To date, however, an overwhelming focus on individual-level outcomes and unidirectional support (eg, from a family caregiver to an identified care recipient) belies the existence of co-occurring health concerns and interdependent care. There are increasing calls for more sophisticated and intensive family health interventions that better integrate family-level factors, processes, and outcomes to provide comprehensive family support services in health care and community-based settings. Methods: This commentary provides key considerations for advancing this work while centering family health equity and families themselves in health initiatives. Results: Several critical barriers are identified and discussed. For example, a narrow focus on family and inadequate measures of family-level disease burden make it challenging to understand how the disproportionate burden of chronic disease observed among individuals of lower socioeconomic status and certain racial and ethnic groups compounds and complicates family health experiences. In addition, limited attention to the interaction between individuals, families, and broader sociocultural factors that influence family resources and constraints, such as racism, hamper program design, implementation, and evaluation. Conclusion: To center families in efforts to reduce chronic disease disparities, it is necessary to move beyond superficial attention to the complexity of disease prevention and management within the family context. This commentary serves to enhance understanding of important drivers of family-level chronic disease outcomes, while providing important considerations for advancing research and practice.
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Saúde da Família , Equidade em Saúde , Humanos , Doença Crônica/prevenção & controle , Saúde da Família/etnologia , Estados Unidos , Gerenciamento Clínico , FamíliaRESUMO
Parkinson's disease (PD) patients develop progressive cognitive decline. The degree to which such decline impacts instrumental activities of daily living (IADL) among individuals in the early stages of PD without dementia is not well documented. The Everyday Cognitive Battery Reasoning subtest (ECB) was used to assess ability to solve everyday reasoning tasks for IADL among 19 non-demented older adults with PD in comparison to 20 older adults without PD. The two groups were similar in age, education, race and gender. Individuals with PD had significantly lower scores (M = 61.98, SD = 12.03) than the comparison group (M = 69.80, SD = 9.48). Individuals with PD, who do not have dementia, may be more likely to experience difficulties in IADL requiring reasoning including medication use, finances, and nutrition. Even more serious implications lie in the capacity to make treatment choices.
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Atividades Cotidianas/psicologia , Transtornos Cognitivos/psicologia , Doença de Parkinson/psicologia , Pensamento/fisiologia , Idoso , Idoso de 80 Anos ou mais , Análise de Variância , Estudos de Casos e Controles , Transtornos Cognitivos/complicações , Transtornos Cognitivos/fisiopatologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Doença de Parkinson/complicações , Doença de Parkinson/fisiopatologia , Escalas de Graduação PsiquiátricaRESUMO
PURPOSE: African Americans (AAs) in rural south and southeast regions of the United States have among the highest prevalence of cardiovascular disease (CVD) in the country. The purpose of this qualitative, exploratory study is to understand family influences on CVD-related knowledge and health-related behaviors among rural AA adults. DESIGN: Qualitative descriptive study design using a community-based participatory research approach. SETTING: Two rural North Carolina counties. PARTICIPANTS: Eligible participants were AA adults (at least 21 years of age), who self-reported either CVD diagnosis or selected CVD risk factor(s) for themselves or for an adult family member (N = 37). METHOD: Directed content analysis of semistructured interviews by community and academic partners. RESULTS: Family health history and familial norms and preferences influenced participants' CVD-related knowledge, beliefs, and health-related behaviors. Participants reported their families were helpful for increasing motivation for and overcoming barriers to healthy behaviors, including hard-to-access community resources and physical challenges. Conversely, and to a lesser extent, participants also reported that family members hindered or had little influence (positive or negative) on their engagement in healthy behaviors. CONCLUSION: Family played an important role in helping individuals overcome personal and community-related challenges. Efforts to reduce CVD burden among rural AAs should seek to understand the family-related facilitators, barriers, and processes associated with CVD knowledge and risk-reduction behaviors.
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Negro ou Afro-Americano/psicologia , Doenças Cardiovasculares/etnologia , Comportamentos Relacionados com a Saúde/etnologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , População Rural , Adulto , Idoso , Pesquisa Participativa Baseada na Comunidade , Meio Ambiente , Feminino , Acessibilidade aos Serviços de Saúde , Nível de Saúde , Humanos , Masculino , Anamnese , Pessoa de Meia-Idade , North Carolina/epidemiologia , Pesquisa Qualitativa , Fatores de Risco , Meio Social , Normas Sociais , Fatores Socioeconômicos , Estados Unidos , Adulto JovemRESUMO
Across disciplines, it is common practice to bring together groups to solve complex problems. Facilitators are often asked to help groups organize information about and better understand the problem in order to develop and prioritize solutions. However, despite existence of several methods to elicit and characterize how individuals and groups think about and conceptualize an issue, many are difficult to implement in practice-based settings where resources such as technology and participant time are limited and research questions shift over time. This paper describes an easy-to-implement diagramming technique for eliciting conceptualization and a flexible network analysis method for characterizing changes in both individual and group conceptualization. We use a case example to illustrate how we used the methods to evaluate African American adolescent's conceptual understanding of obesity before and after participating in a series of four systems thinking workshops. The methods produced results that were sensitive to changes in conceptualization that were likely driven by the specific activities employed during the workshop sessions. The methods appear strong for capturing salient levels of conceptualization at both individual and collective levels. The paper concludes with a critical examination of strengths and weaknesses of the methods and implications for future practice and research.
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Negro ou Afro-Americano , Formação de Conceito , Educação em Saúde/organização & administração , Obesidade Infantil/etnologia , Obesidade Infantil/prevenção & controle , Comunicação , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Liderança , Modelos Teóricos , Avaliação de Programas e Projetos de SaúdeRESUMO
Engaging youth from racial and ethnic minority communities as leaders for change is a potential strategy to mobilize support for addressing childhood obesity, but there are limited curricula designed to help youth understand the complex influences on obesity. Our aim was to develop and pilot test a systems science curriculum to elicit rural African American youth perspectives on childhood obesity and enhance their understanding of and support for obesity prevention solutions. The curriculum was designed so it could be integrated with existing positive youth development curricula that help youth advocate for and implement identified solutions. We conducted four workshop sessions with youth that engaged them in systems learning activities such as guided systems diagramming activities. The participants ( n = 21) completed validated surveys presession and postsession that assessed their causal attributions of obesity and support for obesity prevention policies. The youths' perception that environmental factors cause obesity increased ( p < .05), and perceptions that individual behavior and biology cause obesity did not change. Their support for policies that addressed food access and food pricing significantly increased ( p < .05). The youths' system diagrams elucidated links between multilevel factors such as personal attitudes, social influence, and the built environment, which provides important information for designing synergistic solutions. The changes we observed in youths' perceptions of obesity and support for policy changes have important implications for youths' interest and willingness to advocate for social and environmental changes in their community. The strategies have a promising role in supporting community mobilization to address childhood obesity.
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Negro ou Afro-Americano , Currículo , Obesidade Infantil/prevenção & controle , Desenvolvimento de Programas , População Rural , Ciência , Adolescente , Participação da Comunidade/psicologia , Feminino , Comportamentos Relacionados com a Saúde/etnologia , Humanos , Masculino , Obesidade Infantil/etnologia , Projetos Piloto , Políticas , Inquéritos e QuestionáriosRESUMO
Participating in community-engaged dissemination and implementation (CEDI) research is challenging for a variety of reasons. Currently, there is not specific guidance or a tool available for researchers to assess their readiness to conduct CEDI research. We propose a conceptual framework that identifies detailed competencies for researchers participating in CEDI and maps these competencies to domains. The framework is a necessary step toward developing a CEDI research readiness survey that measures a researcher's attitudes, willingness, and self-reported ability for acquiring the knowledge and performing the behaviors necessary for effective community engagement. The conceptual framework for CEDI competencies was developed by a team of eight faculty and staff affiliated with a university's Clinical and Translational Science Award (CTSA). The authors developed CEDI competencies by identifying the attitudes, knowledge, and behaviors necessary for carrying out commonly accepted CE principles. After collectively developing an initial list of competencies, team members individually mapped each competency to a single domain that provided the best fit. Following the individual mapping, the group held two sessions in which the sorting preferences were shared and discrepancies were discussed until consensus was reached. During this discussion, modifications to wording of competencies and domains were made as needed. The team then engaged five community stakeholders to review and modify the competencies and domains. The CEDI framework consists of 40 competencies organized into nine domains: perceived value of CE in D&I research, introspection and openness, knowledge of community characteristics, appreciation for stakeholder's experience with and attitudes toward research, preparing the partnership for collaborative decision-making, collaborative planning for the research design and goals, communication effectiveness, equitable distribution of resources and credit, and sustaining the partnership. Delineation of CEDI competencies advances the broader CE principles and D&I research goals found in the literature and facilitates development of readiness assessments tied to specific training resources for researchers interested in conducting CEDI research.
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Participação da Comunidade , Disseminação de Informação , Pesquisadores/psicologia , Pesquisa Translacional Biomédica , Atitude , Comportamento , Participação da Comunidade/métodos , Implementação de Plano de Saúde , Humanos , Disseminação de Informação/métodos , Modelos Psicológicos , Autorrelato , Pesquisa Translacional Biomédica/métodosRESUMO
PURPOSE: Parents and caregivers play an important role in sexual socialization of youth, often serving as the primary source of information about sex. For African American rural youth who experience disparate rates of HIV/sexually transmitted infection, improving caregiver-youth communication about sexual topics may help to reduce risky behaviors. This study assessed the impact of an intervention to improve sexual topic communication. DESIGN: A Preintervention-postintervention, quasi-experimental, controlled, and community-based trial. SETTING: Intervention was in 2 rural North Carolina counties with comparison group in 3 adjacent counties. SUBJECTS: Participants (n = 249) were parents, caregivers, or parental figures for African American youth aged 10 to 14. INTERVENTION: Twelve-session curriculum for participating dyads. MEASURES: Audio computer-assisted self-interview to assess changes at 9 months from baseline in communication about general and sensitive sex topics and overall communication about sex. ANALYSIS: Multivariable models were used to examine the differences between the changes in mean of scores for intervention and comparison groups. RESULTS: Statistically significant differences in changes in mean scores for communication about general sex topics ( P < .0001), communication about sensitive sex topics ( P < .0001), and overall communication about sex ( P < .0001) existed. Differences in change in mean scores remained significant after adjusting baseline scores and other variables in the multivariate models. CONCLUSIONS: In Teach One Reach One intervention, adult participants reported improved communication about sex, an important element to support risk reduction among youth in high-prevalence areas.
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Infecções por HIV/prevenção & controle , Relações Pais-Filho , Educação Sexual , Infecções Sexualmente Transmissíveis/prevenção & controle , Adolescente , Adulto , Negro ou Afro-Americano/psicologia , Criança , Comunicação , Estudos Controlados Antes e Depois , Efeitos Psicossociais da Doença , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , North Carolina , Avaliação de Programas e Projetos de Saúde , Educação Sexual/métodosRESUMO
Community-academic research partnerships aim to build stakeholder trust in order to improve the reach and translation of health research, but there is limited empirical research regarding effective ways to build trust. This multisite study was launched to identify similarities and differences among stakeholders' perspectives of antecedents to trust in research partnerships. In 2013-2014, we conducted a mixed-methods concept mapping study with participants from three major stakeholder groups who identified and rated the importance of different antecedents of trust on a 5-point Likert-type scale. Study participants were community members ( n = 66), health care providers ( n = 38), and academic researchers ( n = 44). All stakeholder groups rated "authentic communication" and "reciprocal relationships" the highest in importance. Community members rated "communication/methodology to resolve problems" ( M = 4.23, SD = 0.58) significantly higher than academic researchers ( M = 3.87, SD = 0.67) and health care providers ( M = 3.89, SD = 0.62; p < .01) and had different perspectives regarding the importance of issues related to "sustainability." The importance of communication and relationships across stakeholders indicates the importance of colearning processes that involve the exchange of knowledge and skills. The differences uncovered suggest specific areas where attention and skill building may be needed to improve trust within partnerships. More research on how partnerships can improve communication specific to problem solving and sustainability is merited.
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Centros Médicos Acadêmicos/organização & administração , Pesquisa Participativa Baseada na Comunidade , Pesquisadores/psicologia , Confiança , Comunicação , Comportamento Cooperativo , Etnicidade , Feminino , Humanos , MasculinoRESUMO
Dignity and independence are widely considered as core concepts to aging well, yet little research has explored how older adults perceive these issues in the context of community life. Moreover, little is known regarding the ways in which the broader public views and enhances aging with dignity and independence with their older residents. Using participatory action research, multiple methods of qualitative inquiry, and tenets of appreciative inquiry, this article reports on a community-based initiative aimed to better understand the positive aspects of aging with dignity and independence. Synthesized findings yielded 6 "actionable themes": (1) meaningful involvement, (2) aging in place, (3) respect and inclusion, (4) communication and information, (5) transportation and mobility, and (6) health and well-being. The findings invoke a new paradigm for community aging that highlights the unique contributions of older adults as a core social resource. Implications for mobilizing community action to promote aging with dignity and independence are discussed.