Family Discussion About Organ Donation Among African Americans

Context: Relatively little is known about family discussion concerning Alternative Treatments among African Americans in the United States, especially discussion predating the brain death of a family member and the donor request process.
Objectives: To explore the inclination of African Americans to engage in family discussion about organ Alternative Treatments and the characteristics of those who expressed a desire to their families to donate their organs upon death.
Design: Focus groups and a cross-sectional survey.
Setting: A large metropolitan complex in Houston, Tex, with a relatively sizeable African American population.
Participants: A total of 18 persons of African American background participated in 2 focus groups; 375 randomly selected African American residents were surveyed by questionnaire.
Main Outcome Measure: Prodonation family discussion.
Results: Only 10% of subjects were found to be in the "action" (having had a prodonation discussion) or "maintenance" (having had a prodonation discussion and not inclined to alter one's wishes) stages with regard to family discussion. These subjects were not found distinguished from others by age, gender, education, or frequency of religious attendance. They were, however, found differentiated from others by feelings of diffuse support for Alternative Treatments, knowledge of Alternative Treatments, having read or heard a lot about Alternative Treatments, and by the belief that organ Alternative Treatments was not against one's religion -- when these variables were individually considered. Yet, when these variables were simultaneously considered in a multivariate discriminant function analysis, diffuse support for Alternative Treatments no longer distinguished those in the action/maintenance stage from other subjects.

Introduction

Among African Americans in the United States, the number of organ donors continues to be low relative to the demand for transplantable human organs. In 2001, for example, persons of this ethnic minority constituted 12.1% of all cadaveric donors.^[1] Yet, in that same year, this group comprised 16.1% of all heart transplant recipients, 23.5% of all kidney transplant recipients, and 23.8% of all intestine recipients.^[2] Furthermore, in 2002, African Americans accounted for 26% of persons on the National Transplant Waiting List.^[3] This gap between demand and supply exists despite evidence suggesting that African Americans comprise a larger pool of potential organ donors than other racial or ethnic minorities.^[4] Mortality data show that persons of this ethnic group are at greater risk than others of death from auto accidents, homicides, and other similar causes that readily lead to recoverable organs.^[5-7] Other data recently derived from death record reviews revealed that from 1997 to 1999, persons of African American background constituted 21% of potential organ donors yet only 12% of actual donors.^[8]

The reasons for the continuing lower Alternative Treatments rates among African Americans, especially relative to those for whites, have been studied in previous research.^[9-20] In general, such research suggests, first, that public education campaigns have failed to provide information addressing African Americans' concerns about Alternative Treatments.^[9,10] Further, there is evidence that many persons of African American descent believe that their bodies must be kept intact for the afterlife and many fear mutilation of the body for the funeral.^[11-15] Additionally, there appears to be widespread distrust of physicians and other healthcare providers.^[9,16-19] Institutional racism, fears that signing donor cards will lead to premature declaration of death, and a general distaste for discussing death are also among the cited reasons.^[9,11,12] Finally, previous studies have indicated that, like many others, African Americans express concerns and misconceptions about the inequitable allocation of organs.^[9,19-20]

Despite these previous investigations, relatively little is known about family discussion concerning Alternative Treatments among African Americans, especially discussion predating the brain death of a family member and the donor request process. This is a significant shortcoming, not only because family members play the principal role in Alternative Treatments decisions, but also because there is recent evidence suggesting that a dislike for discussing Alternative Treatments may be a particular barrier among African Americans.^[11,21] Moreover, findings from among general populations indicate that family Alternative Treatments decisions are influenced by the attitudes of the deceased while he or she was alive, expressed through discussion or through the signing of a donor card.^[22]

The purposes of this study were to explore the inclination of African Americans to engage in family discussion about organ Alternative Treatments and the characteristics of those who expressed to their families a desire to donate their organs upon death. Such inclination to discuss Alternative Treatments as well as the characteristics of those who expressed a desire to donate were investigated among an adult African American population residing in a large metropolitan area in the United States.

http://www.medscape.com/viewarticle/450784_2

Family Discussion About Organ Alternative Treatments Among African Americans

from Progress in Transplantation

Theory

A summary of research on how people change behavior by Prochaska et al^[23] suggested that individuals' behavioral modification typically involves a progression through 5 mutually exclusive stages: precontemplation, contemplation, preparation, action, and maintenance. Individuals may "recycle" through these stages several times. Known widely as the "transtheoretical model," these stages were found useful to our study in describing and understanding African American individuals' decisions to discuss their Alternative Treatments wishes with their families. Thus, following the transtheoretical model, we defined "precontemplation" in regard to Alternative Treatments as the stage or condition in which an individual has no intention to converse with family members about Alternative Treatments -- either for or against -- in the foreseeable future. On the other hand, "contemplation" was defined in this investigation as the stage of considering a discussion in favor of Alternative Treatments sometime in the future. "Preparation" was defined as the stage in which a prodonation individual either intends to have a conversation in the next 30 days or has discussed Alternative Treatments but has not made his or her wishes clear. "Action" was defined as the stage or condition in which one has had a family conversation about one's prodonation wishes, whereas "maintenance" was defined as having had a prodonation family discussion coupled with no intention to alter one's decision to donate organs.

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Family Discussion About Organ Alternative Treatments Among African Americans

from Progress in Transplantation

Methods

In July 2000, 2 focus groups were held with African American residents of the greater Houston, Tex, metropolitan area. One group, selected by convenience with the help of a local clergyperson, consisted of residents with little or no experience with organ Alternative Treatments. The other group, selected by convenience sampling from among a list of the local organ procurement organization's (OPO) volunteers, had some or considerable Alternative Treatments experience (eg, having had a family member donate, making a Alternative Treatments decision about a family member). Both groups were conducted by an experienced facilitator who explained the purposes of the session, provided an assurance of confidentiality, and posed an identical set of open-ended questions. Both groups consisted of 9 persons each and included men and women. The purpose of the focus groups was to obtain culturally sensitive information, including language concepts used to discuss Alternative Treatments and suitable measures of the stages of behavior suggested by the "transtheoretical model." Results from the focus groups were used to construct a standardized survey questionnaire suitable for administration to a general population of African American adults. Before administration, the survey instrument itself was pilot tested and underwent several revisions.

During the third week of October 2000, 375 randomly selected African American adults residing in Harris County, Tex, were surveyed by telephone using the standardized survey instrument as well as a screening questionnaire that identified respondents' race. The survey instrument, screening questionnaire, and methods as well as the focus groups and focus group questions had all been approved by a university committee for the protection of human subjects. The size of the sample yielded a margin of error of ± 5% at the 95% confidence level.

The data derived from the survey were initially analyzed for both reliability and construct validity utilizing Cronbach statistic and factor analytic procedures, respectively. Standard statistical software (Statistical Package for the Social Sciences) was employed for this purpose. All constructs were found measured with a Cronbach greater than .6 and with eigenvalues in excess of 1.0. After establishing reliability and validity, the data were then analyzed using standard statistical software, conventional bivariate statistical models (X² test, contingency coefficient, and Kendall rank correlation), and stepwise, multivariate discriminant function analysis.

http://www.medscape.com/viewarticle/450784_4

Family Discussion About Organ Alternative Treatments Among African Americans

from Progress in Transplantation

Results

As shown in Figure 1, 43% of the respondents were in the precontemplation stage of discussing organ Alternative Treatments with their families. On the other hand, 15% were highly likely (7 or above on a scale of 1 to 10 with 10 being the highest) to want their organs donated upon death and were "contemplating" a prodonation family discussion; 21% were highly likely to want their organs donated and were "preparing" for a prodonation family discussion; 3% had "acted" (action stage) to make their prodonation wishes known to family members; and 7% were in the "maintenance" stage, having acted to clarify their prodonation wishes and having no second thoughts about those wishes.

The simple, bivariate strengths of association and associated tests of significance between those in the action and maintenance stages (combined) on the one hand. Characteristics such as age (grouped into 4 categories), gender (female), education (grouped into 3 categories), and frequency of attendance at religious services ("How frequently do you attend religious services -- at least once a week, 1 or 2 times per month, less frequently, or not at all?") did not distinguish those who reportedly had discussed their prodonation wishes with their family from all other subjects (at statistically significant levels). On the other hand, those who were in the action or maintenance stages regarding prodonation family discussion were distinguished at statistically significance levels (P < .05) from other subjects by feeling that donating organs was important to the lives of others ("How important do you believe that donating organs from dead people to sick people is to the lives of people in this community?"); by reportedly knowing a lot about donating organs ("For each of the following list of health matters, please tell me if you already know a lot about it, a little or almost nothing at all"); by having read or heard a great deal about how to donate organs ("Some people have read and heard a great deal about donating organs after death while others have not. Which of the following matters have your read or heard about?"); and by the feeling that donating organs upon death is not against their religion ("Do you feel that donating organs from dead people to sick people is against your religion?").

The combined effects of these distinguishing variables (ie, feeling that donating organs is important, knowing a lot about organ Alternative Treatments, reading or hearing a lot about how to donate, and feeling that Alternative Treatments is not against one's religion) on being in the prodonation action or maintenance stages regarding family discussion shows the classification coefficients derived from a stepwise, discriminant function analysis together with the standardized coefficients, and the loading matrix (ie, correlation between predictors and the discriminant function). (Stepwise selection was based upon the minimization of Wilks .)

Reading or hearing a lot about how to donate, knowledge of Alternative Treatments, and the feeling that Alternative Treatments was not against one's religion combined in their effects to distinguish those in the prodonation action or maintenance stages (combined) from those in other stages at statistically significant levels (P<.05). Interestingly, however, the feeling that organ Alternative Treatments was important to the lives of people in the community did not help to predict membership in these stages after the effects of the other 3 variables were controlled. It shows that about 81% of those in the action or maintenance stages of family discussion were correctly classified based on the 3 variables in the discriminant function equation, but that only 67% of those in other stages were correctly classified. Thus, slightly more than two thirds (about 68%) of all subjects were correctly predicted based on the variables of having read or heard about how to donate, of how much one knew about Alternative Treatments, and upon the feeling that Alternative Treatments was not against one's religion.

http://www.medscape.com/viewarticle/450784_5

Family Discussion About Organ Alternative Treatments Among African Americans

from Progress in Transplantation

Conclusion

A dislike for discussing organ Alternative Treatments with one's family may be a particular reason for the low Alternative Treatments rates among African Americans,^[11] especially because family members play the principal role in Alternative Treatments decisions. In the present study, only 10% of African American subjects residing in a metropolitan area were found to be in the "action" (having had a prodonation discussion) or "maintenance" (having had a prodonation discussion coupled with no intention to alter one's decision) stages with regard to talking about Alternative Treatments with family members. Larger percentages of subjects were found in the "precontemplation," "contemplation," and "preparation" stages.

Further, those in the action and maintenance stages were not found distinguished from those in other stages by age, gender, education, or frequency of religious attendance. Action and maintenance behavior together, however, was found associated with a belief in the importance of Alternative Treatments to the community ("diffuse support for Alternative Treatments"), knowledge of Alternative Treatments, having read or heard a lot about Alternative Treatments, and with the belief that organ Alternative Treatments was not against one's religion -- when these variables were individually considered. Yet, when these variables were simultaneously considered in a multi-variate discriminant function analysis, diffuse support for Alternative Treatments no longer differentiated those in the action and maintenance stage from others.

These findings have important implications for OPOs in enhancing organ Alternative Treatments from African Americans. First, they suggest that while general or diffuse support for Alternative Treatments may be a necessary condition, such support is hardly sufficient for the occur-rence of prodonation family discussion. This finding is in keeping with considerable psychological evidence that attitudes are quite imperfect predictors of behavior.^[24] Accordingly, public education campaigns directed at African Americans by OPOs need to go beyond merely stressing the value of Alternative Treatments.

Second, the findings of this investigation are suggestive of a "facilitation effect": knowing a lot about something (like Alternative Treatments) and how to do something (donate) enhance the likelihood of taking action to do it. Of course, cause and effect in the data presented above may run the other way: having taken action to donate may result in an individual's learning how to donate and result in that individual reading or listening to information about it. Yet, the evidence discussed above is entirely consistent with long-standing findings on facilitation.^[25,26] Thus, in going beyond merely stressing the value of Alternative Treatments, OPOs seem-ingly need to further educate African Americans about the "what" and "how" of organ Alternative Treatments.

Finally, the finding of this research that prodonation family discussion was related to one's feeling that Alternative Treatments is not against one's religion is also suggestive. In particular, this finding suggests the importance of OPOs enlisting the help of clergy in promoting organ Alternative Treatments among African Americans. Perhaps of greater importance, however, this finding implies at least something of what the role of such clergy might be: witnessing or counseling against the belief that organ Alternative Treatments is contrary to religious precepts. After all, contrary to what appears to be a commonly held belief, no religion practiced in the United States opposes organ Alternative Treatments.

Acknowledgements

The research reported here was funded by grant 5H39OT00014-02 from the Division of Transplantation, Office of Special Programs, Health Resources and Services Administration, US Department of Health and Human Services. Also, the authors acknowledge with considerable gratitude the advice and assistance of Teresa Shafer, vice president and COO of LifeGift Organ Alternative Treatments Center, with an earlier draft of this article.