Development and preliminary evaluation of ilearnKAS: An animated video about kidney allocation to support transplant decision-making.

BACKGROUND: We aimed to develop and feasibility test an educational video culturally targeted to African American (AA) patients regarding kidney allocation. METHODS: We iteratively refined an animated video for AAs with multiple stakeholder input and conducted a one-group, pre-post study with 50 kidney transplant candidates to assess video feasibility and acceptability. A mixed population was chosen to obtain race-specific acceptability data and efficacy estimates for a larger study. RESULTS: Median participant age was 56 years, and 50% were AA. Comparing pre-post video scores, large knowledge effect sizes were found for the cohort (r = 0.7) and in the context of AA race (r = 0.8), low health literacy (r = 0.6), low educational achievement (r = 0.7), age >55 years (r = 0.6), dialysis vintage ≥1 year (r = 0.8), low income (r = 0.7) and low technology access (r = 0.8). Over 87% of participants provided positive ratings on each of the seven acceptability items. The frequency of positive responses increased pre-post video for kidney allocation understanding (78% vs 94%, P = 0.008), decisional self-efficacy (64% vs 88%, P < 0.001) and belief in fairness (76% vs 90%, P = 0.02). CONCLUSIONS: In collaboration with key stakeholders, a culturally targeted educational video was developed that was well received. Results are promising to impact kidney allocation knowledge among AA and non-AA kidney transplant candidates.

Organ Donation in the United States: The Tale of the African-American Journey of Moving From the Bottom to the Top.

OBJECTIVE: The purpose was to review the increase of minority organ donation. METHODS: The methodology was based on the efforts of the DC Organ Donor Program and the Dow Take Initiative Program that focused on increasing donors among African Americans (AAs). From 1982 to 1988, AA donor card signings increased from 20/month to 750/month, and Black donations doubled. A review of the data, including face-to-face grassroots presentations combined with national media, was conducted. Gallup polls in 1985 and 1990 indicated a tripling of black awareness of transplantation and the number of blacks signing donor cards. Based on the applied successful methodologies, in 1991, the National Minority Organ Tissues Transplant Education Program was established targeting AA, Hispanic, Asian, and other ethnic groups. A review of the United Network for Organ Sharing (UNOS) database from 1990 to 2010 was accomplished. RESULTS: Nationally, ethnic minority organ donors per million (ODM) increased from 8-10 ODM (1982) to 35 ODM (AA and Latino/Hispanics) in 2002. In 1995, ODMs were white 34.2, black 33.1, Hispanic 31.5, and Asian 17.9. In 2010, Black organ donors per million totaled 35.36 versus white 27.07, Hispanic 25.59, and Asian 14.70. CONCLUSIONS: Based on the data retrieved from UNOS in 2010, blacks were ranked above whites and other ethnic minority populations as the number one ethnic group of organ donors per million in the US.

Organ donation video messaging in motor vehicle offices: results of a randomized trial.

CONTEXT: Since nearly all registered organ donors in the United States signed up via a driver's license transaction, motor vehicle (MV) offices represent an important venue for organ donation education. OBJECTIVE: To evaluate the impact of organ donation video messaging in MV offices. DESIGN: A 2-group (usual care vs usual care+video messaging) randomized trial with baseline, intervention, and follow-up assessment phases. SETTING: Twenty-eight MV offices in Massachusetts. INTERVENTION: Usual care comprised education of MV clerks, display of organ donation print materials (ie, posters, brochures, signing mats), and a volunteer ambassador program. The intervention included video messaging with silent (subtitled) segments highlighting individuals affected by donation, playing on a recursive loop on monitors in MV waiting rooms. MAIN OUTCOME MEASURES: Aggregate monthly donor designation rates at MV offices (primary) and percentage of MV customers who registered as donors after viewing the video (secondary). RESULTS: Controlling for baseline donor designation rate, analysis of covariance showed a significant group effect for intervention phase (F=7.3, P=.01). The usual-care group had a significantly higher aggregate monthly donor designation rate than the intervention group had. In the logistic regression model of customer surveys (n=912), prior donor designation (ß=-1.29, odds ratio [OR]=0.27 [95% CI=0.20-0.37], P<.001), white race (ß=0.57 OR=1.77 [95% CI=1.23-2.54], P=.002), and viewing the intervention video (ß=0.73, OR=1.54 [95% CI=1.24-2.60], P=.01) were statistically significant predictors of donor registration on the day of the survey. CONCLUSION: The relatively low uptake of the video intervention by customers most likely contributed to the negative trial finding.

Factors Influencing Hematopoietic Stem Cell Donation Intention in Hong Kong: A Web-Based Survey.

BACKGROUND: Hematopoietic stem cell transplantation (HSCT) has become increasingly common for treatment of severe hematological disorders. However, the number of compatible hematopoietic stem cell (HSC) donors is usually limited. Expanding donor pool size would enhance matching success by increasing donor frequency and introducing allelic diversity within the registry. Identifying factors that affect public willingness towards HSC donation allows better strategic recruitment planning to facilitate donor pool expansion. Previous studies in white populations showed knowledge, family attitude, trust towards the healthcare system, fear, self-identity, and social identity are important factors related to HSC donation intention. However, given the differences in cultural and society values that exist across different regions, in particular between the East and West, whether these factors influence HSC donation willingness in Hong Kong remained to be determined. The objective of this study was to identify factors associated with HSC donation motivation in Hong Kong. MATERIAL AND METHODS: A large-scale, cross-sectional, observational study involving 3479 local participants. RESULTS: There is a positive correlation of HSC donation intention with younger age (18-32, OR: 1.80, p≤0·001) and higher education (OR: 1·47, p≤0.001). Better HSCT knowledge is also related to greater HSC donation intention (OR: 2.55, p£0.001). CONCLUSIONS: Our data suggests HSCT education could help to improve donor recruitment and that more resources should be allocated for public education.

Unmet needs of siblings of pediatric stem cell transplant recipients.

BACKGROUND AND OBJECTIVES: In 2010, the Bioethics Committee of the American Academy of Pediatrics issued recommendations that pediatric hematopoietic stem cell donors should have an independent advocate. Formulating appropriate guidelines is hindered by the lack of prospective empirical evidence from families about the experience of siblings during typing and donation. Our aim was to provide these data. METHODS: Families with a child scheduled to undergo hematopoietic stem cell transplant were recruited. All family members, including children aged 9 to 22 years, were eligible. Qualitative interviews were conducted within 3 time periods: pretransplant, 6 to 8, and 9 to 11 months posttransplant. Quantitative scales assessing decision satisfaction and regret were administered at time 2. RESULTS: Thirty-three families were interviewed. Of the 119 family members, 76% perceived there was no choice in the decision to HLA-type siblings; 77% perceived no choice in sibling donation; 86% had no concerns about typing other than needle sticks; and 64% had no concerns about donation. Common concerns raised were dislike of needle sticks (19%), stress before typing results (14%), and fear of donation (15%). Posttransplantation, 33% of donors wished they had been given more information; 56% of donors stated they benefited from donation. Only 1 donor expressed regret posttransplant. CONCLUSIONS: Most family members did not view sibling typing and donation as a choice, were positive about the experience, and did not express regrets. We recommend education for all siblings before typing, comprehensive education for the donor by a health care provider pretransplant, and systematic donor follow-up after transplantation.

A review of potential Muslim organ donors' perspectives on solid organ donation: lessons for nurses in clinical practice.

BACKGROUND: Transplantation is increasingly being used to treat patients with end-stage organ disease. However, when potential organ donors involved are Muslims, religious beliefs and culture have a strong influence on clinical decision making and nursing care. PURPOSE: To establish basic aspects that nurses working with potential Muslim organ donors need to know in order to provide culturally sensitive care. METHODS: Studies were retrieved from four databases (Cumulative Index to Nursing and Allied Health Literature, SCOPUS, Medline, and PubMed). RESULTS: Findings of available studies show that health education, family involvement, and collaboration with religious leaders are good strategies for ensuring culturally sensitive care for Muslim patients in this situation. CONCLUSION: Nurses need to know that organ donation is compatible with Islam and that religious leaders, family, sociocultural beliefs, legal requirements, informed decision making process, and Ramadan are important aspects that need to be considered in order to be able to provide culturally senstive care.

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.

The donor-conceived child's "Right to Personal Identity": the public debate on donor anonymity in the United Kingdom.

On 1 April 2005, with the implementation of the Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004, United Kingdom law was changed to allow children born through gamete donation to access details identifying the donor. Drawing on trends in adoption law, the decision to abolish donor anonymity was strongly influenced by a discourse that asserted the 'child's right to personal identity'. Through examination of the donor anonymity debate in the public realm, while adopting a social constructionist approach, this article discusses how donor anonymity has been defined as a social problem that requires a regulative response. It focuses on the child's 'right to personal identity' claims, and discusses the genetic essentialism behind these claims. By basing its assumptions on an adoption analogy, United Kingdom law ascribes a social meaning to the genetic relatedness between gamete donors and the offspring.

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.

Information needs, preferred educational messages and channel of delivery, and opinion on strategies to promote organ donation: a multicultural perspective.

INTRODUCTION: This study assessed the information needs, preferred educational messages and channels of delivery, as well as opinions on strategies to promote organ donation. It aimed to provide insight into a culturally sensitive public education campaign to encourage organ donation in diverse ethnic communities in Asia, namely the Malays, Chinese and Indians. METHODS: A total of 17 focus group discussions with 105 participants were conducted between September and December 2008. The participants were members of the general public aged 18 to 60 years, who were recruited through convenient sampling in the Klang Valley area of Malaysia. RESULTS: Across ethnic groups, there was a general concern about the mistreatment of the deceased's body in the organ procurement process. The Chinese and Indian participants wanted assurance that the body would be treated with respect and care. The Muslims wanted assurance that the handling of a Muslim's body would follow the rules and regulations of the Islamic faith. The most important information requested by the Muslim participants was whether cadaveric donation is permissible in Islam. A lack of national public education and promotion of organ donation was noted. All the three ethnic groups, especially the Malays, required community and religious leaders for support, encouragement and involvement, as sociocultural influences play a significant role in the willingness to donate organs. CONCLUSION: The pronounced ethnic differences in information needs suggest that culturally sensitive public educational messages are required. Organ donation and transplantation organisations should work closely with community and religious organisations to address the sociocultural barriers identified.

Kidney organ donation: developing family practice initiatives to reverse inertia.

BACKGROUND: Kidney transplantation is associated with greater long term survival rates and improved quality of life compared with dialysis. Continuous growth in the number of patients with kidney failure has not been matched by an increase in the availability of kidneys for transplantation. This leads to long waiting lists, higher treatment costs and negative health outcomes. DISCUSSION: Misunderstandings, public uncertainty and issues of trust in the medical system, that limit willingness to be registered as a potential donor, could be addressed by community dissemination of information and new family practice initiatives that respond to individuals' personal beliefs and concerns regarding organ donation and transplantation. SUMMARY: Tackling both personal and public inertia on organ donation is important for any community oriented kidney donation campaign.

Minority organ donation: the power of an educated community.

BACKGROUND: In 1978 in Washington, DC, we became aware of the scarcity of minority donors, especially African Americans. STUDY DESIGN: From then until now, 4 decades later, we have been involved in a grass roots effort emphasizing community education and empowerment combined with the use of mass media, which has increased minority donation rates exponentially. This program was initiated with a $500 grant from Howard University and was subsequently funded by National Institutes of Health grants and other funding totaling more than $10 million between 1993 and 2008. RESULTS: Between 1990 and 2008, minority donations percentages have doubled (15% to 30%). African-American organ donors per million (ODM) have quadrupled from 8 ODM to 53 ODM between 1982 and 2008. CONCLUSIONS: The investment of $10 million may seem substantial when we look at the cost-to-benefit ratio associated with the cost savings of $135,000 per donor. But it is small when compared with the more than $200 million saved by kidney donors alone, which is associated with the expected increase in the percentage of minority donors to 35% by 2010, or the equivalent of 1,750 minority donors.

Project ACTS: an intervention to increase organ and tissue donation intentions among African Americans.

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.

The challenge of doing what is right in renal transplantation: balancing equity and utility.

Arguably the greatest challenge faced by the transplant community is the disparity between the number of persons waiting for a solid organ transplant and the finite supply of donor organs. For renal transplantation the gap between supply and demand has risen annually reflecting the increasing prevalence of end-stage renal disease versus the relatively static deceased donor organ pool. Maximising the benefit from this scarce resource raises difficult ethical issues. For most patients on dialysis therapy a successful transplant offers improved quality and quantity of life, but the absolute gain in survival provided by a donated organ varies greatly depending on recipient factors such as age and co-morbid illnesses. The philosophies of equity (a fair opportunity for everyone in need to receive a transplant) and utility (optimal profit from each organ) are often competing. National allocation schemes and local policies regarding assessment of potential recipients and acceptance of organs are designed to balance these ethical principles in a standardized and socially acceptable manner. The ongoing debate surrounding these issues and modifications to such policies reflect the evolving clinical picture of renal transplantation and the challenge in maintaining equipoise between renal transplant utility and equity.

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.

Communication as a predictor of willingness to donate one's organs: an addition to the Theory of Reasoned Action.

Fishbein and Ajzen's theory of reasoned action has been used by many researchers, particularly in regard to health communication, to predict behavioral intentions and behavior. According to that theory, one's intention is the best predictor that one will engage in a behavior, and attitudes and social norms predict behavioral intentions. Other researchers have added different variables to the postulates of attitudes and social norms that Fishbein and Ajzen maintain are the best predictors of behavioral intention. Here we draw on data from a 2006 telephone survey (N = 420) gauging the awareness of an organ donation campaign in Northeast Ohio to examine the impact of communication on people's intentions. The current study supports the hypothesis that those who communicate with others are more likely to express a greater willingness to become an organ donor, but it expands the range of communication contexts. With demographics and attitudes toward organ donation controlled for, this study shows that communication with others about organ donation increases the willingness of individuals to have favorable attitudes about being an organ donor.

The role of women in the donation consent decision: building on previous research.

BACKGROUND: Recently published findings emphasize the dominant role of women in the donation discussion. With some noteworthy exceptions, the empirical literature on gender and donation, and the role of gender in healthcare decisions as well as donation, is limited. OBJECTIVES: To provide preliminary information needed to begin theoretical or framework development and to initiate more rigorous research on the role of gender in donation discussions. DESIGN: This exploratory study is a descriptive qualitative retrospective study using focus group methodology. SETTING AND PARTICIPANTS: Two focus groups were conducted in 2 major cities in the organ procurement organization's service area. Participants were women who were involved in the donation discussion within the past 5 years; 6 participated in 1 session, 8 in the other. RESULTS: The focus group discussions highlight the role of women in the donation process relative to information needs, information usage, and the ensuring dynamics of the donation discussion. Compared to men, women tend to seek more information and reframe this information for others. Because women are frequently central in family communication networks, they serve as a communication conduit for other family members and may influence others. CONCLUSIONS: Involving key women decision makers in the early stages of the donation discussion and providing information elaboration build on women's central placement and role in family communication network processes. The significance of women's central placement may carry cultural implications, particularly for racial or ethnic groups with strong matriarchal or extended kinship structures.

African American consent and nonconsent cases: are there significant differences?

BACKGROUND: Previous research has examined the differences in organ donation consent rates between African Americans and other racial/ethnic groups. However, there is limited examination of whether differences exist between African American families that consent and those that do not. OBJECTIVE: To examine if there are significant differences between African American families that consent to donation compared to those that do not. METHODS: A random sample of 120 African American potential donor cases from an academic medical center between 1997 and 2004 were included in this study. Variables of interest included next-of-kin relationships, family interactions, knowledge of donor wishes, family initiation of the donation discussion, and satisfaction with the donation process. RESULTS: The data include 32 consent and 88 nonconsent cases. Compared to nonconsent cases, consent cases differed significantly in next-of-kin knowledge of donor wishes, frequent involvement of parents, and infrequent involvement of spouses. Donor wishes were known in 19% of consent cases but in none of the nonconsent cases. A parent was the dominant next-of-kin decision maker in 68% of consent cases, compared to 36% of nonconsent cases. A spouse assumed the dominant role in 29% of nonconsent cases but in only 6% of consent cases. Of these differences, wishes known, parental involvement, and spousal involvement were statistically significant (P = .000, P = .002, and P = .013, respectively). CONCLUSIONS: The results highlight the statistically significant differences between African American consent and nonconsent cases: knowledge of donor wishes and those involved in the donation decision. These results reinforce the importance of programs that encourage African American families to discuss donation with loved ones.