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The purpose of this sequential, explanatory mixed methods study is to determine changes in attitudes towards research, trust in medical researchers and the process, and willingness to participate in research among African Americans immediately after receiving past study findings in a community listening session (CLS). We developed and implemented four CLSs with a total of 57 African Americans who were either past research participants or members of the community-at-large. In the quantitative (dominant) phase, 32 participants completed pre-post surveys and 10 of those participants completed the follow-up semi-structured interviews. Paired samples t-tests and McNemar's test determined bivariate differences between pre- and post-surveys. Thematic analyses determined emerging themes to further understand these differences. There was a significant increase in: (1) perceived advantages of clinical trials pretest (M = 26.63, SD = 5.43) and post-test (M = 28.53, SD = 4.24, p < .01); and (2) in trust in medical researchers from pre to post (M = 36.16, SD = 10.40 vs. M = 27.53, SD = 9.37, p < 0.001). There was no significant difference in pre- and post-tests as it relates to perceived disadvantages of clinical trials and willingness to participate. Qualitative analysis yielded the following themes: (1) sharing research results and the impact on attitudes towards research; (2) community listening sessions: a trust building strategy; and (3) satisfaction with the community listening session. Community listening sessions hold promise as a method that researchers can use to simultaneously disseminate research findings and positively impact research perceptions and potentially participation among racial and ethnic minorities.
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Negro ou Afro-Americano , Confiança , Humanos , Inquéritos e QuestionáriosRESUMO
Precision medicine has grown over the past 20 years with the availability of genetic tests and has changed the one-size-fits-all paradigm in medicine. Precision medicine innovations, such as newly available genetic tests, could potentially widen racial and ethnic disparities if access to them is unequal and if interest to use them differs across groups. The objective of this systematic review was to synthesize existing evidence on racial and ethnic differences in knowledge of and attitudes toward genetic testing among adult patients and the general public in the US, focusing on research about the use of genetic testing in general, not disease-specific tests. Twelve articles published in 1997-2017 met inclusion and exclusion criteria, with 10 including knowledge variables and seven including attitude variables. Studies found consistent patterns of lower awareness of genetic testing in general among non-Whites compared to Whites, lower factual knowledge scores among Blacks and Hispanics/Latinos, and mixed findings of differences in awareness of direct-to-consumer (DTC) genetic testing or the term precision medicine. Blacks, Hispanics/Latinos, and non-Whites generally had more concerns about genetic testing than Whites. The findings suggest that patients and the general public need access to culturally appropriate educational material about the use of genetic testing in precision medicine.
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Atitude Frente a Saúde , Etnicidade , Testes Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Adulto , Triagem e Testes Direto ao Consumidor , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Masculino , Fatores Socioeconômicos , Estados UnidosRESUMO
Parental trust in medical researchers is a commonly cited barrier to their child's participation in clinical research. Yet, there is little understanding of factors influencing parental trust to be implemented in interventions to address their concerns. This study seeks to identify psychosocial and modifying factors influencing parental trust in medical researchers to improve child and adolescent patients clinical trial participation, and potentially their health outcomes. We conducted a cross-sectional study with 307 parents. Multiple ordinary linear (OLS) regression was conducted to determine: (1) psychosocial and modifying factors associated with parental trust; and (2) perceived advantages and disadvantages associated with parental trust. Parent's race (White) (ß = .343, p < .001), higher education level (ß = .409, p < .001), higher perceived advantages of adolescent clinical trials (ß = .142, p < .001), and lower perceived disadvantages of adolescent clinical trials (ß = -.337, p = .001) were the most significant predictors of higher levels of parental trust in medical researchers. Parents who were African American and had lower education levels expressed lower levels of trust in medical researchers. Education on the benefits of clinical trials could reduce parents' apprehension towards their child's participation in clinical trials. Results support the development of a clinical trial education program for parents to improve their trust in medical researchers.
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Ensaios Clínicos como Assunto/psicologia , Pais/psicologia , Participação do Paciente/psicologia , Relações Pesquisador-Sujeito/psicologia , Confiança/psicologia , Adolescente , Adulto , Negro ou Afro-Americano/psicologia , Criança , Estudos Transversais , Feminino , Humanos , MasculinoRESUMO
Approximately one-quarter of human papillomavirus (HPV) infections are acquired by adolescents, with a higher burden among racial/ethnic minorities. However, racial/ethnic minorities have been underrepresented in previous HPV vaccine trials. Ongoing and future HPV vaccine optimization trials would benefit from racially- and ethnically-diverse sample of adolescent trial participants. This study examined factors influencing parental willingness to consent to their adolescents' participation in HPV vaccine clinical trials and tested for possible racial differences. A convenience sample of parents of adolescents (N = 256) completed a cross-sectional survey. Chi square analyses were used to assess racial differences in parental HPV vaccine awareness and intentions and willingness to consent to their child participating in an HPV vaccine clinical trial. Ordinal logistic regression was used to identify factors associated with willingness. Approximately 47% of parents were willing to allow their adolescent to participate in HPV vaccine clinical trials (30.7% African American and 48.3% Caucasian, p = .081). African Americans had lower HPV vaccine awareness (p = .006) but not lower intentions to vaccinate (p = .086). Parental willingness was positively associated with the following variables: Child's age (p < .039), Perceived Advantages of HPV Vaccination for Adolescents (p = .002), Parental Trust in Medical Researchers (p < .001), and Level of Ease in Understanding Clinical Trial Information (p = .010). Educating parents about the advantages of HPV vaccines for younger adolescents using low-literacy educational materials and building trust between parents and researchers may increase parental willingness to consent to adolescent participation in HPV vaccine clinical trials.
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Conhecimentos, Atitudes e Prática em Saúde , Vacinas contra Papillomavirus , Pais/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Vacinação , Adolescente , Ensaios Clínicos como Assunto , Humanos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Vacinação/psicologia , Vacinação/estatística & dados numéricosRESUMO
OBJECTIVE: Healthy People 2020 (HP2020) includes benchmarks for diabetes management. The objective of our study was to describe diabetes management among African American women, a patient group that carries a disproportionate diabetes burden. PARTICIPANTS: African American women with type 2 diabetes enrolled in dietary and weight management interventions. MAIN OUTCOME MEASURES: Self-report assessments of diabetes education, specialty care, self-care behaviors and advice. Associations between diabetes self-care behaviors and diabetes advice using Chi-square tests. RESULTS: Among 96 participants (age = 53 ± 9.4; BMI = 37.9 ± 7.3 kg/m(2)), reported diabetes education and foot exams were lower than HP2020 benchmarks, 48.9% vs 62.5% and 35.1% vs 74.8%, respectively and higher for dilated eye exams (70.1% vs 58.7%). The most frequently reported dietary advice was to increase fruit/vegetable intake (58%) and approximately 50% reported physical activity advice. Receiving no exercise advice was associated with greater odds of little or no physical activity (OR = 3.38) and planned exercises (OR = 2.65). CONCLUSIONS: Receipt of diabetes education and some specialty care were below national benchmarks while health care provider advice influenced patient self-care behaviors. Increasing diabetes education and specialty care should be included within existing efforts to address the excess diabetes burden experienced by African American women. Longitudinal studies exploring the relationship between health care provider advice and self-care behaviors are needed.
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Negro ou Afro-Americano , Diabetes Mellitus Tipo 2/etnologia , Educação em Saúde , Autocuidado , Adulto , Distribuição de Qui-Quadrado , Aconselhamento , Diabetes Mellitus Tipo 2/terapia , Dieta , Exercício Físico , Feminino , Humanos , Pessoa de Meia-Idade , Obesidade , Autorrelato , Redução de PesoRESUMO
BACKGROUND: There are few methods that focus on engaging racial and ethnic minorities in research. The Meharry-Vanderbilt Community Engaged Research Core partnered with the University of Utah, the University of Michigan, and community/patient partners to convene a virtual summit to share the Community Engagement Studio (CE Studio) model, a structured and widely-used approach that facilitates community engagement in research. OBJECTIVES: The CE Studio Virtual Training Summit (Summit) goal was to prepare multi-stakeholder (e.g., researchers, community members) research teams to engage more racial/ethnic minorities in CE studios. METHODS: Summit planning included (1) agenda development, including CE Studio training and a live CE Studio demonstration; (2) summit advertisement across several networks, including minority-serving institutions; and (3) development of pre-and post-Summit evaluations. RESULTS: Among 50 registrants (76.7% academicians) that completed evaluations, more than 65% planned to increase engagement of racial/ethnic minorities in research and implement CE Studios as a result of the Summit. Increased confidence in all CE training areas was reported, including in conducting an effective CE Studio planning meeting (32.1% pre-Summit/90.3% post-Summit) and identifying and preparing patient/community stakeholders for engagement as CE Studio experts (46.4% pre-Summit/93.6% post-Summit). CONCLUSIONS: Virtual CE Studio training that includes multi-stakeholder planning partners can be an effective method for introducing the CE Studio model and preparing multi-stakeholder research teams to engage racial and ethnic minorities in CE Studios. This is particularly salient given that effective community engaged research methods and best practices are not currently being distributed through research programs at a pace consistent with the demands.
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Pesquisa Participativa Baseada na Comunidade , Humanos , Pesquisa Participativa Baseada na Comunidade/organização & administração , Minorias Étnicas e Raciais , Participação dos Interessados , Participação da Comunidade/métodosRESUMO
BACKGROUND: African American (AA) women with type 2 diabetes (T2D) carry disproportionate diabetes-related morbidity and mortality burdens. Diabetes medical nutrition therapy (MNT) improves glycemic, blood pressure, and cholesterol control, all critical in preventing and reducing diabetes complications. Yet, MNT does not address low motivation for dietary intake management, which is frequently reported among AA women with T2D living in the Southeastern US. METHODS: A randomized controlled trial will be used to test the central hypothesis that diabetes MNT plus culturally-tailored motivational interviewing (MI) (diabetes MNT plus MI) is more effective than diabetes MNT alone (diabetes MNT). Two hundred ninety-one Southeastern AA women who are at risk for development and/or progression of T2D complications will be randomized to diabetes MNT plus MI or diabetes MNT. Both groups will include: 1) a 3-month active intervention period, consisting of group-based, nutritionist-facilitated MNT sessions; 2) a 3-month maintenance intervention period, including one group-based, nutritionist-facilitated maintenance support session; and 3) a 6-month inactive period. Culturally-adapted MI exercises will be integrated into the diabetes MNT plus MI group only. Primary (HbA1c) and secondary (systolic blood pressure, LDL cholesterol) outcomes will be assessed at baseline and 3, 6, and 12 months following the active intervention period. DISCUSSION: The results from this study, called the SISTER (Sisters Inspiring Sisters to Engage in Relevant Diabetes Self-Care) Diabetes Study, are vital to the adoption and uptake of rigorously-tested MNT interventions that address motivation among AA women with T2D as a way to reduce their risk and/or progression of diabetes-related complications.
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Diabetes Mellitus Tipo 2 , Terapia Nutricional , Humanos , Feminino , Diabetes Mellitus Tipo 2/tratamento farmacológico , Negro ou Afro-Americano , Autocuidado , Glicemia , Terapia Nutricional/métodos , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
As depicted in the translational research continuum, dissemination of research findings to past research participants and the community-at-large is integral to improving health outcomes. Blocks in translation exist in which poor dissemination is a major contributor. Limited progress has been made on how to engage basic scientists at T1 and T2 phases to meaningfully disseminate study findings to community. Our objective is to report on 4 cases of community engaged research dissemination activities among 3 basic scientists (ie, a cancer biologist, a biochemist, and a molecular biologist.): a townhall, a radio listening session, a community newsletter, and a Facebook Live segment. The Meharry Community Engagement Core dissemination team designed these activities using community informed processes. To plan and conduct these activities, a basic scientist is partnered with a community engaged researcher and a community-based organization to create a dissemination product which can be understood and potentially used by past research participants and the community-at-large. We share reflections from basic scientists, community organizations, and event participants. Finally, we provide competencies, informed by basic scientists, needed to engage in effective, community-engaged research dissemination. The activities, reflections, and competencies can be used by basic scientists and academic institutions as models to guide their community engaged research dissemination activities. This work supports the goal to bridge the translational research gap.
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Neoplasias , Pesquisa Translacional Biomédica , HumanosRESUMO
Dissemination of research beyond the academic community is an ethical responsibility of researchers and necessary in translational research to help ensure the uptake of research findings to improve health outcomes. Often, partnerships between community and academicians do not include research dissemination plans, possibly reflecting researchers not knowing how to create these plans. This manuscript details the development process of a research dissemination training module for academicians and researchers. This training was conceptualized and developed by Core faculty and staff. Development steps were: (a) identifying researchers' dissemination needs using the Core Investigator Survey; (b) identifying communities dissemination needs/preferences using feedback from our community advisory board; (c) conducting a literature search to identify dissemination concepts from researchers and community perspectives; (d) developing the training module; (e) conducting a cognitive review with one basic science researcher and one community-based participatory researcher; (f) evaluating the training; and (g) finalizing the training module. Training attendees included 1 clinical and 3 basic science clinical researchers, a biomedical postdoctoral fellow, and 10 research staff. Of those completing the feedback survey, 60% had some experience with research dissemination. As a result of training, more than 50% of respondents strongly agreed that as researchers they have a clear understanding of dissemination, a greater understanding of the dissemination process, how to identify stakeholders and successfully develop a dissemination plan. While disseminating research findings beyond academic publications may be new to some researchers, this training provided the tools to implement dissemination practices in their current and future research.
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Pesquisadores , Pesquisa Translacional Biomédica , Participação da Comunidade , HumanosRESUMO
This paper details U.S. Research Centers in Minority Institutions (RCMI) Community Engagement Cores (CECs): (1) unique and cross-cutting components, focus areas, specific aims, and target populations; and (2) approaches utilized to build or sustain trust towards community participation in research. A mixed-method data collection approach was employed for this cross-sectional study of current or previously funded RCMIs. A total of 18 of the 25 institutions spanning 13 U.S. states and territories participated. CEC specific aims were to support community engaged research (94%); to translate and disseminate research findings (88%); to develop partnerships (82%); and to build capacity around community research (71%). Four open-ended questions, qualitative analysis, and comparison of the categories led to the emergence of two supporting themes: (1) establishing trust between the community-academic collaborators and within the community and (2) building collaborative relationships. An overarching theme, building community together through trust and meaningful collaborations, emerged from the supporting themes and subthemes. The RCMI institutions and their CECs serve as models to circumvent the historical and current challenges to research in communities disproportionately affected by health disparities. Lessons learned from these cores may help other institutions who want to build community trust in and capacities for research that addresses community-related health concerns.
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Participação da Comunidade , Grupos Minoritários , Estudos Transversais , Humanos , Projetos de Pesquisa , ConfiançaRESUMO
OBJECTIVES: Achieving health equity and reducing racial and ethnic health disparities require intentional community engagement efforts by academicians. Primary among these efforts is the acknowledgement of research-related mistrust. Efforts to build trust must begin with recognition of the invaluable knowledge and experience community stakeholders possess. METHODS: The Meharry Community Engagement Core builds on the foundation provided by Meharry Medical College, a Historically Black College and University, to achieve its mission to improve health and health outcomes through long-term collaborative research partnerships with community stakeholders. Early in its development, the Core actively engaged community stakeholders throughout all research phases. RESULTS: Early successes include achieving community feedback on research priorities, policies, and procedures and developing partnerships that span the research spectrum. Core work to date is promising and may serve as a model for addressing research-related mistrust and efforts to build trust.
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Pesquisa Biomédica , Relações Comunidade-Instituição , Faculdades de Medicina , Negro ou Afro-Americano , História do Século XIX , História do Século XX , Humanos , Faculdades de Medicina/história , Tennessee , Confiança , Universidades/históriaRESUMO
BACKGROUND: It is a public health priority to increase community research participation to improve health outcomes and eliminate health disparities. There is a need for effective research training programs that build community stakeholders' capacity to engage as equitable partners. OBJECTIVES: To describe the collaborative process of implementing and evaluating a dual-track community research training program-Meharry Vanderbilt Community Engaged Research Core-Community Research Training Program (MVC-CRT) Program-and present participant evaluations. METHODS: The MVC-CRT is a six-session community-based organization (CBO) curriculum and a three-session community member (CM) curriculum, based on needs identified by various community stakeholders, that was piloted in 2016. Immediately post-training, an outcome evaluation (surveys) was used to measure trainees' confidence relative to 30 learning objectives for the combined training sessions (e.g., Introduction to research), satisfaction in preparing them for research roles, and impact on research activities (e.g., building sustainable partnerships). 2 and 3 months after training, a process evaluation (focus groups) was used to assess each session's flow, materials, group discussions, and facilitators. RESULTS: Trainees' immediate post-training confidence increased or remained the same across 26 of 30 learning objectives. Two to 3 months after training, trainees reported sustained confidence, perceived increased knowledge, and increased intentions to engage in or improve research activities. All participants were satisfied with the program and felt better prepared for research roles. CONCLUSIONS: Tailored community research training may result in positive outcomes that can ultimately increase community capacity to be equitable partners in research in support of efforts to improve health outcomes and eliminate health disparities.
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Pesquisa Participativa Baseada na Comunidade/organização & administração , Sociologia/educação , Participação da Comunidade , Relações Comunidade-Instituição , Humanos , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Universidades/organização & administraçãoRESUMO
BACKGROUND: The Problem Areas in Diabetes (PAID) survey is a measure of diabetes-related stress for which reported use has been in largely Caucasian populations. Our purpose was to assess the psychometric properties of the PAID in Southern rural African American women with Type 2 diabetes. METHODS: A convenience sample of African American women (N = 131) ranging from 21-50 years of age and diagnosed with Type 2 diabetes were recruited for a survey study from two rural Southern community health centers. Participants completed the PAID, Center for Epidemiological Studies-Depression Scale (CES-D), and the Summary of Diabetes Self-Care Activities Scale (SDSCA). Factor analysis, Cronbach's coefficient alpha, and construct validation facilitated psychometric evaluation. RESULTS: A principle component factor analysis of the PAID yielded two factors, 1) a lack of confidence subscale, and 2) a negative emotional consequences subscale. The Lack of Confidence and Negative Emotional Consequences subscales, but not the overall PAID scale, were associated with glycemic control and body mass index, respectively. Relationships with measures of depression and diabetes self-care supported construct validity of both subscales. Both subscales had acceptable (alpha = 0.85 and 0.94) internal consistency measures. CONCLUSION: A psychometrically sound two-factor solution to the PAID survey is identified in Southern, rural African American women with Type 2 diabetes. Lack of confidence in and negative emotional consequences of diabetes self-care implementation provide a better understanding of determinants of glycemic control and weight than an aggregate of the two scales.
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Negro ou Afro-Americano/psicologia , Diabetes Mellitus Tipo 2/psicologia , Psicometria , Adulto , Idoso , Atitude Frente a Saúde , Índice de Massa Corporal , Diabetes Mellitus Tipo 2/etnologia , Feminino , Nível de Saúde , Inquéritos Epidemiológicos , Humanos , Saúde Mental , Pessoa de Meia-Idade , Fatores SocioeconômicosRESUMO
INTRODUCTION: Blacks, Hispanics, and Asians are disproportionately affected by diabetes. We assessed the state of racial/ethnic disparities in diabetes quality of care in the USA. METHODS: We analyzed cross-sectional data of adults diagnosed with Type 2 diabetes in the nationally representative 2013 Medical Expenditure Panel Survey. Differences in adherence to five diabetes quality of care recommendations (HbA1c twice yearly, yearly foot exam, dilated eye exam, blood cholesterol test, and flu vaccination) were examined by race/ethnicity while controlling for three social determinants of health (health insurance status, poverty, and education) and other demographic variables. RESULTS: Among adults with diabetes in the USA, 74.9% received two or more HbA1c tests, 69.0% had a foot exam, 64.9% had an eye exam, 85.4% had a cholesterol test, and 65.1% received flu vaccination in 2013. Compared to Whites, all were lower for Hispanics; HbA1c tests, eye exam, and flu vaccination were lower for Blacks; HbA1c tests, foot exam, and eye exam were lower for Asians. In adjusted models, the only remaining disparities in quality of care indicators were HbA1c tests for Hispanics (AOR 0.67, CI = 0.47-0.97), Blacks (AOR 0.59, CI = 0.40-0.88), and Asians (AOR 0.47, CI = 0.42-0.99); foot exams for Hispanics (AOR 0.65, CI = 0.47-0.90); and flu vaccination for Blacks (AOR 0.68, CI = 0.49-0.93). CONCLUSION: Lack of insurance coverage and education explained some of the racial/ethnic disparities observed in diabetes quality of care. Improving quality of diabetes care could help reduce rates of diabetes complications, healthcare costs, and mortality.
Assuntos
Diabetes Mellitus Tipo 2/terapia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde/etnologia , Adolescente , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Povo Asiático/estatística & dados numéricos , Estudos Transversais , Feminino , Disparidades em Assistência à Saúde/estatística & dados numéricos , Hispânico ou Latino/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Indicadores de Qualidade em Assistência à Saúde , Classe Social , Estados UnidosRESUMO
INTRODUCTION: Community stakeholders often participate in community research training curricula development. There is limited information describing how their input informs curricula. This paper describes input solicitation methods, input received, and examples of its integration. METHODS: From June 2014 to June 2016, community members (CMs) and community-based organizations (CBOs) guided curricula development tailored for CMs and CBOs, respectively. Engagement methods included a strategic planning retreat, surveys, a listening session, workgroup meetings, and community engagement studios. Descriptive statistics were used to summarize survey input. For other methods, input was extracted and compiled from facilitator notes. RESULTS: CMs (n = 37) and CBOs (n = 83) providing input included patients and caregivers and advocacy, community service, and faith-based organizations, respectively. The major feedback categories were training topic priorities, format (e.g., face-to-face vs. online), logistics (e.g., training frequency), and compensation (e.g., appro-priateness). Input directly guided design of CBO and CM curricula (e.g., additional time devoted to specific topics based on feedback) or helped to finalize logistics. CONCLUSIONS: Multiple quantitative and qualitative methods can be used to elicit input from community stakeholders to inform the development of community research training curricula. This input is essential for the development of training curricula that are culturally relevant and acceptable.
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OBJECTIVES: To assess the 2-year efficacy of a combined medical nutrition therapy and motivational interviewing (MI) pilot study intervention and factors that influenced long-term dietary self-care. RESEARCH DESIGN AND METHODS: Pilot study participants, African American women with type 2 diabetes, completed a 2-year follow-up study visit, including clinical assessments and completion of a dietary self-care questionnaire and a semi-structured interview. Wilcoxon signed-rank tests were used to evaluate differences between baseline and 2-year follow-up clinical and dietary self-care outcomes. Hierarchical coding was used to analyze semi-structured interviews and categorize facilitator and barrier themes into subthemes. Subthemes were quantified based on the number of subtheme-related comments. RESULTS: Among the 12 participants (mean age 57.1±5.7 years), improvements were observed for HbA1c (baseline: 10.25%; interquartile range [IQR]: 8.10, 11.72 and follow-up: 8.8%; IQR: 7.48,10.22), systolic blood pressure (baseline: 142 mm Hg; IQR: 134.25, 157.25 and follow-up: 127 mm Hg; IQR: 113.5, 143.25), frequency of eating high-fat foods (baseline: 3.5 days; IQR: 2.75, 4.25 and follow-up: 3 days; IQR: 2.5, 4.5), and of spacing carbohydrates throughout the day (baseline: 3 days; IQR: 3.0, 4.0 and follow-up: 4 days; IQR: 1.5, 4.5). There was a statistically significant decrease (p=0.04) in the frequency of fruit and vegetable intake (baseline: 4 days; IQR: 3.75, 7.0 and follow-up: 3.5 days; IQR: 2.75, 4.0). Dietary self-care barriers and facilitators included internal (eg, motivation) and external factors (eg, social support). Motivation (70 comments) and lack of motivation (67 comments) were the most pervasive facilitator and barrier subthemes, respectively. CONCLUSION: Overall, diabetes-related clinical and dietary self-care outcomes were improved following a combined medical nutritional therapy/MI intervention, and motivation played an important role in dietary self-care engagement. Future research is needed to assess the added benefit of MI in improving clinical and dietary self-care outcomes and to identify best strategies to support post-intervention dietary self-care engagement.
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OBJECTIVE: This study describes the development and psychometric evaluation of HPV Clinical Trial Survey for Parents with Children Aged 9 to 15 (CTSP-HPV) using traditional instrument development methods and community engagement principles. METHODS: An expert panel and parental input informed survey content and parents recommended study design changes (e.g., flyer wording). A convenience sample of 256 parents completed the final survey measuring parental willingness to consent to HPV clinical trial (CT) participation and other factors hypothesized to influence willingness (e.g., HPV vaccine benefits). Cronbach's a, Spearman correlations, and multiple linear regression were used to estimate internal consistency, convergent and discriminant validity, and predictively validity, respectively. RESULTS: Internal reliability was confirmed for all scales (a ≥ 0.70.). Parental willingness was positively associated (p < 0.05) with trust in medical researchers, adolescent CT knowledge, HPV vaccine benefits, advantages of adolescent CTs (r range 0.33-0.42), supporting convergent validity. Moderate discriminant construct validity was also demonstrated. Regression results indicate reasonable predictive validity with the six scales accounting for 31% of the variance in parents' willingness. CONCLUSIONS: This instrument can inform interventions based on factors that influence parental willingness, which may lead to the eventual increase in trial participation. Further psychometric testing is warranted.
Assuntos
Infecções por Papillomavirus/prevenção & controle , Vacinas contra Papillomavirus/uso terapêutico , Psicometria , Adolescente , Criança , Ensaios Clínicos como Assunto , Relações Comunidade-Instituição , Análise Discriminante , Feminino , Humanos , Modelos Lineares , Masculino , Pais , Análise de Regressão , Reprodutibilidade dos Testes , Projetos de Pesquisa , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: The study goal is to highlight strategies for promoting relevance of research capacity-building efforts targeting community organizations (CO)s. METHODS: Two community partners, representing two COs, were invited to participate in CO research development trainings, Community Research Forums (Forum)s. Their contributions were documented via Forum document review. Forum participants, representatives from other COs, completed post-Forum surveys to identify additional training needs and rate Forum impact relative to their training expectations. A content-based analysis and descriptive statistics were used to summarize needs assessment- and impact-related survey responses, respectively. RESULTS: Community partners were involved in eight Forum-related activities including marketing (planning), facilitation (implementation), and manuscript coauthorship (dissemination). Eighty-one individuals, representing 55 COs, attended the Forums. Needs assessment responses revealed a desire for additional assistance with existing Forum topics (e.g., defining research priorities) and a need for new ones (e.g., promoting organizational buy in for research). Ninety-one percent of participants agreed that the Forum demonstrated the value of research to COs and how to create a research agenda. CONCLUSIONS: Including community partners in all Forum phases ensured that CO perspectives were integrated throughout. Post-Forum needs and impact assessment results will help in tailoring, where needed, future training topics and strategies, respectively.