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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:BackgroundClinical research coordinators (CRCs) facilitate the interaction between researchers and knowledge users in rehabilitation centres to promote and sustain evidence-informed practices. Despite their presence in rehabilitation settings in Quebec for over 20 years, little is known about their profiles and knowledge translation (KT) activities nor how they can best enact their role. This study explored CRCs' roles and perspectives on the barriers, enablers, and strategies for improving KT activities in rehabilitation settings.MethodsWe conducted a multi-centre, participatory sequential mixed methods study. In the descriptive quantitative phase, we collected data via an online survey to determine CRCs' role in research and KT. In the subsequent qualitative phase, we conducted an in-person focus group to elicit CRCs' perspectives regarding factors influencing their work in KT, and potential solutions for overcoming these challenges. We used a descriptive and an inductive content analysis approach for the data analysis. The data synthesis was inspired by the Promoting Action on Research Implementation in Health Services framework.ResultsAll nine CRCs from five partner health regions of a large rehabilitation research centre agreed to participate in the study. The data suggest that CRCs are like knowledge brokers and boundary spanners. As information managers, linkage agents and facilitators, CRCs play a pivot role in diffusion, dissemination, synthesis and tailoring of knowledge to improve evidence informed practices and quality of care in rehabilitation. The factors influencing CRCs' KT activities are mostly linked to the context such as the receptivity of the organization as well as the lack of time and resources, and limited understanding of their roles by stakeholders. Two main suggestions made to enhance CRCs' contribution to KT activities include the harmonisation of expectations between the large research centre and their partner health regions, and better promotion of their role to clinical and research teams.ConclusionsThis study provides valuable insights into the scope of CRCs' role. The results shed light on the challenges that they face and potential solutions to overcome them. The knowledge generated in this study can be used to implement this role with similar duties in rehabilitation settings or other health care domains.

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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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