The Inclusion of African-American Study Participants in Web-Based Research Studies: Viewpoint.

The use of Web-based methods for research recruitment and intervention delivery has greatly increased as Internet usage continues to grow. These Internet-based strategies allow for researchers to quickly reach more people. African-Americans are underrepresented in health research studies. Due to this, African-Americans get less benefit from important research that could address the disproportionate health outcomes they face. Web-based research studies are one promising way to engage more African-Americans and build trust with the African-American community. With African-Americans' increasing access to the Internet using mobile phones and other mobile phone technologies, we advocate for efforts to increase the representation of African-Americans in research studies by using the Internet as a recruitment tool and conclude with recommendations that support this goal.

Exploring Donotion-related Knowledge Attitudes, Beliefs and Distrust Among African Americans.

Within the field of organ donation, multiple studies have shown differences in patterns of trust, however, it is unclear which elements are significantly related to donation decision making among African Americans. This study sought to disentangle the construct of trust by parceling out measures related to the healthcare system, the donation/allocation system, and the physician; and determine the relationship of these dimensions to attitudes toward organ and tissue donation. Cross-sectional survey data were gathered from 585 African American adults residing in the Atlanta metropolitan area. Results indicate that varying dimensions of trust function differently in their influence on attitudes toward donation. Our findings suggest that trust is critical to donation decision-making and should be measured with a multidimensional approach, particularly among racial/ethnic groups with complex histories with the healthcare system. This study underlines the need for a more tailored, individualized approach to promoting organ and tissue donation among African Americans. ACKNOWLEDGEMENTS: We also thank Rianot Amzat, Mohua Basu and Rhonda DeLaremore for their assistance with data collection, cleaning, entry, and analysis.

Understanding African American's religious beliefs and organ donation intentions.

African Americans are overrepresented on the organ transplant waiting list and underrepresented among organ and tissue donors. One of the most highly noted reasons for lack of donation is the perception that donation is contrary to religious beliefs. The purpose of this cross-sectional study is to explore the complexities of religion (beliefs, religiosity, and religious involvement) and its association with willingness to donate and the written expression of donation intentions. Findings from a sample of 505 African American participants suggest that religion is a multidimensional construct and results differ depending on how the construct is measured and operationalized.

Project ACTS II: organ donation education for African American adults.

OBJECTIVE: Project ACTS "About Choices in Transplantation and Sharing" is a culturally sensitive intervention designed to address organ donation concerns among African American adults. Our study sought to evaluate the efficacy of two versions of the Project ACTS intervention and to determine whether reviewing materials in a group setting would be more effective at increasing participants' interest in organ and tissue donation than allowing participants to review the materials at home with friends and family. DESIGN: A pre-post simple factorial experimental design was used to assess differences between intervention package (Project ACTS I vs II) and mode of delivery (group vs take home). METHODS: Participants completed a baseline and 1-year follow-up assessment of donation-related knowledge, attitudes, and interest. MAIN OUTCOME MEASURES: A summed score that represents participants' interest in being recognized as an organ donor on their driver's license, via donor card, and by talking to family. RESULTS: From baseline to follow-up, participants increased their knowledge, attitudes, and interest in being recognized as an organ donor regardless of intervention package (Ps<.05). Regarding setting, participants who reviewed materials in a group setting demonstrated greater increase from baseline to follow-up in interest in organ donation (beta=.22, P<.01) and positive attitudes toward donation (beta=.22, P<.05) than those who were allowed to review materials at home with friends and family. CONCLUSION: Project ACTS I and II are equally efficacious; reviewing the intervention in a group setting may be necessary for low vested interest/high ambivalence health behaviors such as organ donation.

Distrust in the healthcare system and organ donation intentions among African Americans.

The purpose of this study is to further understanding of the association between distrust in the healthcare system and written and verbal expressions of donation intentions among African Americans. We hypothesize that distrust in the healthcare system will be significantly, positively associated with both verbal and written donation intentions. Five hundred and eighty five participants completed a 98-item survey that included scales on distrust in the healthcare system and donation intentions. Bivariate analyses (t-tests, ANOVA, chi-square tests and odds ratios) were used to explore the extent to which donation intentions and distrust in the healthcare system varied by demographic characteristics and the association between the distrust in the healthcare system scale and verbal and written donation intentions. Separate logistic regressions were performed with each of the dependent variables to see if significant associations remained while controlling for confounders. Findings based on the multiple regression indicate that when controlling the participant's education level, distrust in the healthcare system was not significantly related to written donation intentions (OR = 1.04; P = .12). When controlling for education level, health insurance status, Community Health Advocates group and marital status, distrust in the healthcare system was significantly associated with verbal donation intentions (OR = 1.08; P < 0.05). Our results suggest that distrust in the healthcare system varies in the way that it is associated with donation intentions. Future organ donation studies should be conducted to determine the pathways through which distrust in the healthcare system impacts different types of organ donation intentions.

Testing the utility of a modified organ donation model among African American adults.

African Americans are overrepresented on the organ transplant waiting list because they are disproportionately impacted by certain health conditions that potentially warrant a life-saving transplant. While the African American need for transplantation is considerably high, organ and tissue donation rates are comparatively low, resulting in African Americans spending more than twice the amount of time on the national transplant waiting list as compared to people of other racial/ethnic backgrounds. There are a multitude of factors that contribute to the reluctance expressed by African Americans with respect to organ donation. This study proposes the use of an adaptation of the Organ Donation Model to explore the ways in which knowledge, trust in the donation/allocation process, and religious beliefs impact African American donation decision making. Bivariate and path analyses demonstrated that alignment with religious beliefs was the greatest driving factor with respect to attitudes towards donation; attitudes were significantly associated with donation intentions; and knowledge is directly associated with intentions to serve as a potential deceased organ donor. The significance of these variables speaks to the importance of their inclusion in a model that focuses on the African American population and offers new direction for more effective donation education efforts.

Correlates of support for living donation among African American adults.

CONTEXT: Living donation is studied with much less intensity among African Americans than among the general population. Examination of barriers to living donation can lead to effective strategies to educate dialysis patients and their families about this alternative. OBJECTIVE: To explore the correlates of likelihood of becoming a living donor among community-recruited African American adults. DESIGN/PARTICIPANTS: Cross-sectional data were gathered via self-administered questionnaire from 425 African American adults, age 18 years and older, who were recruited from 9 churches in Atlanta. MAIN OUTCOME MEASURES: Self-reported likelihood of becoming a living donor to a close family member, an extended family member or friend, or a stranger. RESULTS: More than three-quarters of participants were willing to act as living donors to a close family member or spouse and two-thirds to friends or extended family. For likelihood of donating to a friend or extended family member, only willingness to engage in deceased donation was significantly associated; to a stranger, both willingness to engage in deceased donation and attitudes toward donation were significantly associated. Knowledge of and personal experiences with donation and/or transplantation were not significantly associated with likelihood of any type of living donation. CONCLUSIONS: Findings indicate widespread support for living donation to a close family member or spouse. These findings have important implications for dialysis patients who must decide whether to approach friends and/or family about the possibility of serving as a living donor and emphasize the need for interventions to help facilitate this process.

Understanding the relationship between knowledge and African Americans' donation decision-making.

OBJECTIVE: To explore the association between different types of knowledge related to donation and transplantation and the expression of donation intentions via one's driver's license, a donor card, or sharing one's wishes with family. METHODS: Cross-sectional data were gathered via self-administered questionnaire from 425 Black adults, age 18 years and older who were recruited from nine churches in a large metropolitan area in the southeast United States. RESULTS: Results indicate that knowledge of the allocation system and experiential knowledge of a transplant recipient are associated with donation intentions after controlling for age, gender, and highest level of education. However, the following types of knowledge were unrelated to donation intentions: donation-related statistics (including an understanding of African Americans' overrepresentation among those in need), the donation process, the process for determining medical suitability, and religious institutions' support for donation. CONCLUSIONS: Findings suggest that the relationship between donation-related knowledge and donation intentions is complex and may depend on the specific type of knowledge being measured. PRACTICE IMPLICATIONS: Knowledge of the allocation system and experiential knowledge of a recipient may be critical aspects of the donation decision-making process. Research findings suggest the need for an educational approach that seeks to improve the specific types of knowledge that are most strongly associated with donation intentions.

Understanding the role of clergy in African American organ and tissue donation decision-making.

OBJECTIVES: To describe and understand the attitudes, beliefs, and experiences towards organ and tissue donation among African American clergy in Atlanta, Georgia, USA. The secondary objective is to understand what messages clergy are providing to their parishioners relative to organ and tissue donation, and what their perceived role is in donation education. DESIGN: A qualitative study in which African American clergy (n=26) participated in four focus groups. RESULTS: African American clergy, though generally supportive of organ and tissue donation in principle, have serious reservations about donation due to perceived inequalities in the donation and transplantation system. The clergy did not personally hold religious concerns about donation, but expressed that these concerns were a major barrier to donation among their parishioners. None of the clergy knew the written position that their religion took on donation; they acknowledged the need for more education for them and their parishioners on this topic. They also felt that as religious leaders, they could play an important role in promoting organ and tissue donation among African American parishioners. CONCLUSIONS: African American clergy and religious leaders may play an important role towards improving willingness to donate among African American parishioners, but more education and advocacy is needed to prepare them for this role.