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Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community.

ABSTRACT: Although research involving biospecimens is essential in advancing cancer research, minorities, especially African-Americans, are underrepresented in such research. We conducted a mixed-method (qualitative focus groups among African-Americans and quantitative cross-sectional surveys) study on factors associated with biospecimen knowledge and donation intent in the medically underserved urban communities in Southeast and Southwest Washington, DC. Focus groups were conducted among 41 African-Americans and survey data was available from 302 community residents of different races/ethnicities using convenience sampling. We used logistic regression to model the association between biospecimen knowledge and donation intent with selected sociodemographic variables using survey data. Only 47 % of the participants had knowledge of the different types of biospecimens. In multivariate logistic regression models, male gender, African-American race, and low education levels were significantly associated with lower knowledge about biospecimens. Compared to Whites (79 %), fewer African-Americans (39 %) and Hispanics (57 %) had knowledge of biospecimens but the difference was significant for African-Americans only. Positive intent to donate biospecimens for research was observed among 36 % of the survey respondents. After multivariate adjustment, only biospecimen knowledge was associated with donation intent (odds ratio = 1.91, 95 % confidence interval 1.12, 3.27). Contrary to popular opinion, "mistrust of the medical community" was not the most commonly reported barrier for biospecimen donation among African-Americans. "Not knowing how biospecimens will be used" and "lack of knowledge of biospecimens" were the most common barriers. Our study highlights the importance of education on biospecimens among community residents to increase minority participation in biospecimen research.

SUBMITTER: Dash C

PROVIDER: S-EPMC4159473 | biostudies-literature | 2014 Oct

REPOSITORIES: biostudies-literature

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Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community.

Dash Chiranjeev C Wallington Sherrie F SF Muthra Sherieda S Dodson Everett E Mandelblatt Jeanne J Adams-Campbell Lucile L LL

Journal of community genetics 20140426 4

Although research involving biospecimens is essential in advancing cancer research, minorities, especially African-Americans, are underrepresented in such research. We conducted a mixed-method (qualitative focus groups among African-Americans and quantitative cross-sectional surveys) study on factors associated with biospecimen knowledge and donation intent in the medically underserved urban communities in Southeast and Southwest Washington, DC. Focus groups were conducted among 41 African-Ameri ...[more]

PMID: 24771039

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Project description:OBJECTIVES:To assess attitudes and willingness of parents of children with congenital heart disease (CHD) regarding donating biospecimens for future CHD research, and to identify factors associated with biospecimen donation. DESIGN:Face-to-face cross-sectional survey data were analysed using logistic regression. SETTING:Cardiothoracic Surgery Inpatient Department, Shanghai Children's Medical Centre. PARTICIPANTS:Parents of children attending the cardiothoracic surgery inpatient department at Shanghai Children's Medical Center, 1 March-31 December 2016. PRIMARY AND SECONDARY OUTCOME MEASURES:Willingness and motivation regarding donating children's biospecimens, and ethical and legal considerations concerning children's future willingness to donate. RESULTS:Of 550 parents, 508 completed the questionnaire (response rate=92.4%). Overall, 69.1% (n=351) were willing to donate their children's biospecimens for medical research. Multivariate analysis indicated higher education level (college/graduate degree: OR 2.435, 95% CI 1.221 to 4.857, p=0.012; high school: OR 1.827, 95%?CI 1.190 to 2.804, p=0.006) and children's hospitalisation history (OR 1.581; 95%?CI 1.069 to 2.338, p=0.022) were positively associated with willingness to donate. The most common motivation for donation was potential benefit to other children with CHD (81.2%, n=285). The main barriers to donation were physical discomfort to their children (52.3%, n=54) and concerns about personal privacy (47.1%, n=48). Most parents (86.0%, n=302) wanted to be informed of research results using their children's donated biospecimens, and 34.8% (n=177) believed that children aged 10-18 years had the right to consent independently to research participation. CONCLUSIONS:Nearly 70% of the parents in this study were willing to donate their children's biospecimens for future CHD research. Parents' education level and children's hospitalisation history influenced willingness to donate. Most parents wanted to receive the research results related to their children's biospecimens.

Project description:BackgroundTraditionally, menstrual education has consisted of lectures directed toward women. The objective of this study was to design an innovative menstrual education (ME) program that reflects the needs of both young women and men, and verify its effectiveness.MethodsA mixed-method design was used to determine the program needs and assess young adults' knowledge and perceptions of menstruation and menstrual products. Focus group interviews were conducted with 14 young adults, and 150 young adults participated in an online survey. After developing the ME program, 10 young adults participated in a study to verify its effectiveness.ResultsInterview results showed young adults wanted more information about menstrual products. The online survey revealed significant differences in knowledge based on participants' general characteristics and experience; exposure to menstruation and menstrual products positively impacted knowledge and perception. In addition, the results indicated young adults wanted ME content access via mobile and in-person modalities, designed for both genders, drawing on menstrual experts' knowledge. Based on these results, a multi-experimental menstrual education (MEME) program was designed and included: hands-on exposure to 60 menstrual products, product demonstrations with a female perineal model, a YouTube video created by the researchers, a true-or-false quiz, and question-and-answer sessions with menstrual experts.ConclusionsThis study clarified the requirements of an innovative menstrual education program. It led to high satisfaction among participants, and improved knowledge and perceptions of menstruation and menstrual products. The online survey showed a correlation between the extent of received ME, and respondents' perception of menstrual products. This implied that a MEME program could change perceptions when conducted systematically; by extension it could ameliorate menstruation challenges attributed to poverty. Future research could further verify the effectiveness of the MEME program, using a larger sample, and examine its suitability for incorporation into official ME curricula at universities and companies.Trial registrationThis trial was registered in a Clinical Research Information Service in Korea linked with the World Health Organization's International Clinical Trial Registry Platform (WHO's ICTRP) (no. KCT0004715 ), Registered 07 Feb 2020.

Project description:BackgroundGuided by intersectionality frameworks, researchers have documented health disparities at the intersection of multiple axes of social status and position, particularly race and ethnicity, gender, and sexual orientation. To advance from identifying to intervening in such intersectional health disparities, studies that examine the underlying mechanisms are required. Although much research demonstrates the negative health impacts of perceived discrimination along single axes, quantitative approaches to assessing the role of discrimination in generating intersectional health disparities remain in their infancy. Members of our team recently introduced the Intersectional Discrimination Index (InDI) to address this gap. The InDI comprises three measures of enacted (day-to-day and major) and anticipated discrimination. These attribution-free measures ask about experiences of mistreatment because of who you are. These measures show promise for intersectional health disparities research but require further validation across intersectional groups and languages. In addition, the proposal to remove attributions is controversial, and no direct comparison has ever been conducted.ObjectiveThis study aims to cognitively and psychometrically evaluate the InDI in English and Spanish and determine whether attributions should be included.MethodsThe study will draw on a preliminary validation data set and three original sequentially collected sources of data: qualitative cognitive interviews in English and Spanish with a sample purposively recruited across intersecting social status and position (gender, sexual orientation, race and ethnicity, socioeconomic status, age, and nativity); a Spanish quantitative survey (n=500; 250/500, 50% sexual and gender minorities); and an English quantitative survey (n=3000), with quota sampling by race and ethnicity (Black, Latino/a/x, and White), sexual or gender minority status, and gender.ResultsThe study was funded by the National Institute on Minority Health and Health Disparities in May 2021, and data collection began in July 2021.ConclusionsThe key deliverables of the study will be bilingual measures of anticipated, day-to-day, and major discrimination validated for multiple health disparity populations using qualitative, quantitative, and mixed methods.International registered report identifier (irrid)PRR1-10.2196/30987.

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Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community.

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Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community.

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