This study sought to evaluate the effectiveness of Project ACTS: About Choices in Transplantation and Sharing, which was developed to increase readiness for organ and tissue donation among African American adults. Nine churches (N = 425 participants) were randomly assigned to receive donation education materials currently available to consumers (control group) or Project ACTS educational materials (intervention group). The primary outcomes assessed at 1-year follow-up were readiness to express donation intentions via one’s driver’s license, donor card, and discussion with family. Results indicate a significant interaction between condition and time on readiness to talk to family such that participants in the intervention group were 1.64 times more likely to be in action or maintenance at follow-up than were participants in the control group (p = .04). There were no significant effects of condition or condition by time on readiness to be identified as a donor on one’s driver’s license and by carrying a donor card. Project ACTS may be an effective tool for stimulating family discussion of donation intentions among African Americans although additional research is needed to explore how to more effectively affect written intentions.
Adjuvant therapy improves breast cancer survival but is underutilized by Black women. Few interventions have addressed this problem. This preliminary report describes the process we used to develop a decision support intervention for Black women eligible for adjuvant therapy. Aims were to use qualitative methods to describe factors that influence Black women’s adjuvant therapy decisions, use these formative data to develop messages for a treatment decision-support intervention, and pilot test the acceptability and utility of the intervention with community members and newly diagnosed women. Thirty-four in-depth interviews were conducted with breast cancer patients in active treatment, survivors and cancer providers to gather qualitative data. Participant ages ranged from 38 to 69 years. A cultural framework was used to analyze the data and to inform intervention messages. Most women relied on their providers for treatment recommendations. Several women reported problems communicating with providers and felt unprepared to ask questions and discuss adjuvant treatment options. Other factors related to treatment experiences were: spiritual coping, collectivism, and sharing breast cancer experiences with other Black survivors. Using these formative data, we developed an intervention that is survivor-based and includes an in-person session which incorporates sharing personal stories, communication skills training and decision support. Intervention materials were reviewed by community members, researchers/clinicians and patients newly diagnosed with breast cancer. Patients reported satisfaction with the intervention and felt better prepared to talk with providers. The intervention will be tested in a randomized trial to enhance decision support and increase use of indicated adjuvant treatment.
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.
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.
Objectives-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.
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