13 research outputs found

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

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    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

    Biosorption of methylene blue from aqueous solution by coconut (Cocos nucifera) shell-derived activated carbon-chitosan composite

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    Charcoal produced from coconut shells through the retort method was consequently activated using CaCl2. The activated carbon-chitosan composite was prepared by coating the activated carbon with chitosan. Batch experiments with methylene blue as adsorbate were conducted under varying pH, contact time, initial dye concentration, adsorbent dosage, and temperature. The effects of these factors were investigated using batch adsorption studies with optimal conditions identified at pH 5, 30 min. contact time, 10 mg L-1 initial dye concentration, 9 g L-1 adsorbent dosage, and 25 °C adsorption temperature. Results of adsorption experiments showed that the composite had better removal efficiency compared to activated carbon. © 2018 Oriental Scientific Publishing Company. All Rights Reserved

    A Tailored Educational Program to Improve Cancer Clinical Trial Participation among African Americans and Latinos

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    Background: Participation in cancer clinical trials is low in minorities, particularly among African Americans and Latinos. Lack of awareness and knowledge regarding clinical trials are major barriers to participation. Objective: To develop a tailored, educational program to increase awareness and understanding of cancer clinical trials. Methods: We used an iterative, community engaged adaptation process to create culturally and linguistically appropriate content for African Americans and Latinos. We first identified an existing clinical trials education program and held a focus group with peer educators who previously delivered the program. Next we conducted 9 focus groups (4 with African Americans, 5 with Latino) (N=85) to obtain input on ways to improve the educational program. We then revised the program based on feedback. The community review board and the researcher reviewed the data summary and finalized the educational program. Results: The key focus group findings were used to identify and integrate content related to cancer (e.g., definition, risk factors, statistics such as top cancer deaths by race and gender), clinical trials (e.g., definition, process, participation costs, and clinical trial resources). Minor changes were also in content, length (i.e., shorter), color scheme (i.e., lighter tones), and visual aids. We also developed testimonials from the African American and Latino researcher and community member perspectives on cancer clinical trial participation. Conclusion: The tailored clinical trial educational program includes content and format deemed more appropriate and relevant to African Americans and Latinos. The new program will be delivered in community settings and compared to the untailored version to determine impact on knowledge, aware, and willingness to participate in clinical trials

    Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions

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    Children with rare or life-limiting chronic conditions and their families are at high risk of psychosocial distress. However, despite its impact on patient and family health and functioning, psychosocial distress and its antecedents may not routinely be captured in medical records. The purpose of this study was to characterize current medical record documentation practices around psychosocial distress among children with rare or life-limiting chronic conditions and their families. Medical records for patients with rare or life-limiting chronic conditions (n = 60) followed by a pediatric complex care program were reviewed. Study team members extracted both structured data elements (e.g., diagnoses, demographic information) and note narratives from the most recent visit with a clinician in the program. Psychosocial topics were analyzed using a mixed quantitative (i.e., frequency counts of topics) and qualitative approach. Topics related to psychosocial distress that were documented in notes included child and parent emotional problems, parent social support, sibling emotional or physical problems, family structure (e.g., whether parents were together), and financial concerns. However, 35% of notes lacked any mention of psychosocial concerns. Although examples of psychosocial concerns were included in some notes, none were present in over one-third of this sample. For both patients with rare or life-limiting chronic conditions and their caregivers, more active elicitation and standard documentation of psychosocial concerns may improve the ability of healthcare providers to identify and intervene on psychosocial concerns and their risk factors
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