2491: Parental concerns about child participation in s reflect a need to move beyond traditional notions of trust and race

OBJECTIVES/SPECIFIC AIMS: The objective of this study was to identify factors influencing parental willingness of adolescent participation in clinical trials. METHODS/STUDY POPULATION: We applied community engaged research principles to conduct a theory-based, cross-sectional study of parental willingness. Parents (N=307) were given a survey from November 2014 to April 2015. Factors influencing parental willingness were identified using binary logistic regression. SPSS version 22.0 was used to perform analyses, and

Engagement of Community Stakeholders to Develop a Framework to Guide Research Dissemination to Communities

Background: Dissemination of research findings to past study participants and the community-at-large is important. Yet, a standardized process for research dissemination is needed to report results to the community. Objective: We developed a framework and strategies to guide community-academic partnerships in community-targeted, dissemination efforts. Methods: From 2017 to 2019, a community-academic partnership was formed in Nashville, Tennessee, and iteratively developed a framework and strategies for research dissemination using cognitive interviews. A deductive, constant comparative analysis was conducted on interview responses to examine framework and strategy content. Feedback was used to finalize the framework and strategies for the evaluation. Using existing data, the framework\u27s utility was evaluated in seven town hall meetings (n = 117). Bivariate analyses determined its effect on community members’ trust and willingness to participate in research using pre- and post-surveys. Evaluation results were used to finalize the framework. Results: The Community-Engaged Research Dissemination (CERD) framework has two phases. Phase one is a preliminary planning phase with two steps, and phase two is the four-step dissemination process. There are five standards to be upheld conducting these phases. We provide competencies for each component. Three feasible, culturally adapted strategies were developed as exemplars to disseminate research findings. Using pre- and post-surveys for intervention evaluation, there was a significant difference in trust in medical research and researchers (P = .006) and willingness to participate in research (P = .013). Discussion and Conclusion: The CERD framework can potentially standardize the process and compare the effect of dissemination efforts on the community\u27s trust and willingness to participate in research

Formative Research to Design a Culturally-appropriate Cancer Clinical Trial Education Program to Increase Participation of African American and Latino Communities

Background: Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program. Methods: We incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program. Results: Focus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials. Conclusions: Incorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos

Improving Dissemination of Individualized Research Results to Communities: Use of an Academic-community Partnership to Develop a Framework

Presentation given at Vanderbilt Translational Research Forum

Development of a Framework to Enhance Dissemination of Tailored Research Results to Communities

Presentation given at the MeTRC Health Disparities Conference

Mixed Methods in Public Health Case Studies: Applying a Sequential QUAN → Qual Design to Identify Factors Associated With Black Mothers’ Intention to Vaccinate Their Daughters Aged 9 to 12 for HPV

The human papillomavirus (HPV) vaccine remains underused among Black female adolescents. In the study described in this case, we used mixed methods to understand factors associated with Black mothers’ intentions to vaccinate their daughters against HPV. The theory of reasoned action and health belief model were used to guide this study. This case study provides insights into designing and conducting a mixed methods sequential QUAN → Qual study using surveys and semi-structured interviews along with discussing the benefits and challenges. This case demonstrates application of this mixed methods sequential design to yield a better understanding of the research issue and the importance of engaging the community throughout study planning and implementation. This case study also provides an example of a theoretical framework when conducting a mixed methods sequential QUAN → Qual design and discusses lessons learned in using this research approach

The Use of Religion in the Management of Depression in Sickle Cell Disease: A Systematic Review

The incidence of depression in individuals with sickle cell disease (SCD) is significantly higher compared to the general population. This systematic literature review was conducted to: (1) describe depressive symptoms in SCD individuals and (2) explore religiosity as a coping mechanism for alleviating depressive symptoms. Emerging themes were physical depressive symptoms and psychosocial depressive implications. Despite uptake of religion and religiosity as a coping strategy in other chronic illnesses, no studies were found that used religiosity to cope with depressive symptoms in SCD. Future research should explore the use of religiosity as an alternative therapy to cope with depression symptoms

Moving Beyond Tradition: Concerns about Child Well-Being Outweigh the Notions of Trust and Race in Parental Decision-Making of Child Participation in Clinical Trials

This presentation was given during the American Public Health Association Annual Meeting

Factors Influencing Parental Trust in Medical Researchers for Child and Adolescent Patients’ Clinical Trial Participation

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) (β = .343, p \u3c .001), higher education level (β = .409, p \u3c .001), higher perceived advantages of adolescent clinical trials (β = .142, p \u3c .001), and lower perceived disadvantages of adolescent clinical trials (β = −.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