Author: Brown, Esther R
Date published: April 1, 2012
Organ donation is one of many therapies for achieving an increased quality of life for many individuals with end stage organ failure (Arrióla, Perryman, Doldren, Warren, & Robinson, 2007). From heart transplantation to skin grafting, the world has seen lives transformed from hopelessness in surviving to feelings of joy and appreciation. Donation and transplantation continue to be a culturally sensitive health care issue, as well as a highly controversial subject for some people of color. People are asked to become organ donors through various appeal processes, radio, T.V and celebrity presentation, because of the shortage of organ donors. While new advances in transplantation continue to improve the quality of life, gaps remain in the numbers of organs needed for African Americans.
In the United States it was estimated that more than 90,000 people were waiting for organ transplantation in 1997 (Amir & Haskell, 1997). According to Amir and Haskell, (1997) over 60,000 people die each year waiting for transplantation. A study done by Spigner, Weaver, Cardenas & Allen (2002) concluded that while the transplant list has decreased to about 75,000, the percentage of minority patients continues to increase. African Americans seem to be an ethnic group that is over-represented on the transplant watting list, because they are disproportionately impacted by various health conditions such as diabetes, hypertension and heart disease (Arrióla et al., 2007). African Americans with end-stage organ failure wait longer than their White counter parts for transplantation. It is felt that reoccurring myths associated with the lack of participation continue to be at the center of this controversy. Because of the shortage of African American organ donors, strategies must be devised to dispel some of the misconceptions and help increase awareness and donations among African American population (Guadagnoli et al., 1999).
Other outlying issues add to the disproportion access to health care such as financial limitations for African Americans. For instance, the urban legions and other such specific groups will not accept care due to religious beliefs that organ donation is not mentioned in the Bible. Identification of the reluctance will assist nurses in their ability to provide culturally competent care.
Research has been conducted over the past twenty years in an attempt to understand the reasons that tissue and organ donation is not well received by some ethnic minorities. Arrióla and associates (2007) identified five general areas associated with the reluctance of African Americans becoming organ donors. The first is the lack knowledge or awareness of the topic of organ donation. Education concerning the need for donations can be found in almost every arena in the media; however, it is not a subject that is deliberately introduced to African Americans. The second is the continued distrust of the medical community. Many feel that when African Americans are injured, measures will not be taken to improve the quality of life. Many are opposed to organ donation due to the belief that there is an inequil allocation of organs (Durand, Decker, & Bruder, 2002). The fear of premature death is the third area of reluctance, which also speaks to the mistrust of the medical community felt by many. The fourth area of reluctance addresses the issue of racism. There are those who believe that African Americans suffer from social injustice, which translates to decreased access to health care. The fifth is religious beliefs and superstitions. African Americans along with South Asians and Chinese Americans share similar beliefs that the body is to remain whole after death in order for the spirit and soul to enter heaven. Fear of mutilation relates to broader spiritual attitudes.
The purpose of this paper was to describe a pilot study that tests the theory of reluctance to explore if each of the five areas of reluctance remains the primary reasons why African Americans are hesitant to donate organs. Implications from this study will be used to develop strategies to dispel the myths and build awareness of the need for African Americans to become organ donors.
Health disparities continue to be at the heart of the research exploring the need for organ donation by African Americans. The concerns that surfaced in prior work continue to be an issue. Three questions were designed to determine if the concerns continued to exist and if so to what degree.
* Do negative perceptions of African Americans to become organ donors continue to persist?
* Do the concerns identified in the literature continue to influence the decisions to become an organ donor?
* What ongoing strategies can be implemented that would help dispel these concerns?
REVIEW OF THR LITERATURE
Historically, African Americans are disproportionately impacted by many health disparities (Durand et al., 2002). These health disparities are associated with the transplantation rates for African Americans. In the U.S. the number of African American donors remains low with high demand (Durand et al., 2002). In 1 999 this population made up only 1 1 .2% of all cadaveric donors (United Network for Organ Sharing, 2001). African Americans in particular make up the majority of those waiting on the transplant list. They are disproportionately impacted by certain health conditions. These include such multisystem diseases as Diabetes, Hypertension, Hepatitis C, and tissue typing. Blood typing becomes more difficult which adds to the complexity of compatible matching when it is sought (Arrióla et al., 2007).
A study done by the Mid- Atlantic Transplant Association received funding to establish an education project designed to increase participation of African Americans to donate organs (Hong, Kappel, Whitlock, Parks-Thomas, & Freedman, 1994). This race specific approach utilized Black community educators to work with potential Black donor families. While the consent rate for participation did not equal that of White donors, targeting Black students for education yielded positive results. The authors stated that African Americans can change their opinion about organ and tissue donation; therefore, this targeted approach is effective for dispelling any incorrect perceptions. A similar study (Guadagnoli et al., 1999), found one key issue associated with organ donation, which related to the difference in how hospital staff relate to families of African Americans compared to Whites. It is possible that the staff perceives patients who are suitable for donation differently, which in turn contributes to the different rates of transplants among different racial groups. The unwillingness of African Americans to donate organs may also be associated with a possible lack of awareness and knowledge about organ donation, along with religious beliefs and misperceptions of transplants.
In the study conducted by Spigner and colleagues (2002), high school students were the focus. The research findings suggested that African American teens had less than positive attitudes about organ donation, and that this may be due to limited the "high quality" of education at the secondary school level. In their pilot study with a sample of 97 students, they discovered that a significantly lower number of minority students (28%) reported that they were willing to be organ donors, when compared with the response provided by their white peers (60%). Their finding that minority teens have less positive views on organ donation may be attributed to negative family discussions about donating organs. It is possible that families may pass down the myths associated with becoming a donor, thus further contributing to minority teens' negative views about organ donation.
In another study, the media was identified as a powerful source of influence in the promotion of myths associated with the lack of participation in organ donation (Morgan et al., 2005). The researchers postulated that positive feedback was associated with family discussions and increased organ donation. Conversely, the study results suggested that negative feedback was related to an unwillingness of family members to either donate their own organs, or to encourage the donation of the organs of other family members.
A review of the literature continues to bring to the forefront the five major areas of reluctance by African Americans to participate in organ donation. These five areas include: lack of knowledge or awareness of the need for organ donation; distrust of the medical community; fear of premature death, as a result of becoming a donor; and, concerns regarding racism and religious beliefs and misconceptions. It is apparent that health promotion and health education becomes the primary tool in building ongoing awareness of the need for organ donation. The urgency cannot be underestimated. While there have been breakthroughs in transplantation, there remains low participation by African Americans, leaving many to die while waiting for a transplant (Moore, 2007).
African Americans have many reasons to mistrust the medical community. Historically African Americans have been subject to experimentation along with the sterilization of women and biomedical research. Many still do not seek routine care believing they will not receive the full array of benefits from current advances that have been made in our health care system (Moore, 2007). The perception of premature death is a result of the individual believing that if they become an organ donor, when a disease process later occurs, they will not be treated properly or, if they are in an accident, aggressive measures will not be performed. This perception also speaks to the concern of racism, believed to be held by some medical professionals, which negatively impacts the quality of care delivered. Similarly, religious beliefs and misconceptions are concerning factors associated with organ donation. While Judeo-Christian religious attitudes toward becoming a donor are not clear, there are views which center on the theology that the body must remain whole after death (Moore, 2007).
Theory of Reasoned Action
The perceptions of African Americans and the concerns about becoming organ donors may be explained through the Theory of Reasoned Action, which serves as the conceptual framework for this study. The assertions of this theoretical construct provide a basis for understanding the mechanism by which individuals make decisions about performing certain behaviors (Werner & Mendelsson, 2001). The theory purports to measure the extent to which, when given the opportunity, an individual is likely to engage in a predictable behavior based on perceived social pressures or subjective norms. According to Werner and Mendelssohn (2001), attitudes or feelings of people are either favorable or unfavorable toward a particular issue.
Purpose of the Pilot Study
Research has addressed the need for African Americans to become organ donors, however misconceptions about organ donation persist. The purpose of this pilot study was to ascertain if there were any changes in those perceptions. The preliminary results of this descriptive study will be used to inform the implementation of a much larger qualitative study designed to ascertain African American perceptions of organ donation. The current study gathered preliminary data related to the five areas of reluctance, and sought to determine if the perceptions continue to exist.
An online culturally sensitive survey was developed with the assistance of a student from the Honors program at Widener University School of Nursing. The online survey development tool, SurveyMonkey®, was used to launch the survey. To ensure that only African Americans were completing the survey, a non-random convenience sample of clergy and members of the Union American Methodist Episcopal Church Conference, along with an African American sorority, were the only invited participants. A representative of the church and of the sorority served as the contacts for each of the respective groups, to ensure that the author could not identify any of the participants. An introductory letter was developed and passed on to the two group representatives. The letter contained the code to log into the survey that was to be shared among the respective group members.
While a total of seventy individuals accessed the online survey, sixty began, but did not complete, the questionnaire. Of the remaining participants, 55 completed the survey, yielding an overall return rate of 78.6%. The survey contained 9 quantitative questions to which respondents were to indicate their agreement or disagreement on a 5-point Likert scale. A tenth open-ended question afforded respondents the opportunity to input comment.
The first question focused on religious concerns, to which 52.7% of the participants strongly disagreed and 5.45% agreed or believed there are religious reasons why a person should not become an organ donor.
The second question was related to keeping the body whole after death. Almost 40% of the participants strongly disagreed with this question, while 37.7% disagreed. Nearly 21% of the respondents were undecided, while less than 2% agreed that the body should remain whole after death.
The third question inquired about participants' mistrust of the medical profession as a reason associated with organ donation. Almost six percent strongly disagreed, 9.26% disagreed, 25.93% were undecided, 38.89% agreed with the statement and 20.37% strongly agreed that Af rican Americans continue to have a mistrust of the medical profession.
The fourth question, which was met with mixed responses, asked if being an organ donor minimizes African Americans' chances of survival should there be an accident or if one becomes chronically ill. Of the participants, 16.36% strongly disagreed, 36.36% disagreed. 23.64% were undecided, 20% agreed with the statement and 3.64% strongly agreed.
The fifth question asked the participants if they fully understood how the organ donation process works. This was asked because in the literature it was felt that education was lacking in the African American community as it relates to becoming a donor. Of the participants 5.56% strongly disagreed, 44.44% agreed and 11.11% strongly agreed. In question six the participants were asked that if they believed African Americans accounted for a major portion of those waiting for organs would that change their minds about becoming organ donors. Thirteen percent strongly disagreed, 28.3%, disagreed, 20.75% were undecided, 32.0% agreed and 5.66% strongly agreed.
Family participation is key in decision making in terms those who are considering allowing a loved one's organs to be donated at time of death. The seventh question asked if they believed family influence assisted in their decision whether or not to become an organ donor: 22% strongly disagreed, 40.7% disagreed, 3.7% were undecided, 25.9% were in agreement and 7.4% strongly agreed.
Question eight asked if the participants could choose to have their organs go to only African Americans would they be more likely to become an organ donor. Of these participants 35.8% strongly disagreed, 39.6 % disagreed. 15% were undecided and 9.4% agreed.
The last quantitative question asked the participants if they have had family members placed on the transplant list. Of the participants26.4% strongly agreed, 26.4% agreed, 1 1.32% were undecided, 26.4% disagreed and 9.43% strongly disagreed with the statement.
The last portion asked the participants to provide any comments on the topic. There were 24 comments about whether they were for or against organ donation. Some participants who were in support of organization conveyed the following sentiments:
"I'm an organ donor and it has been listed on my driver 's license since I was 18 and I'm now 48. "
Other participants who were not in support of organization provided sentiments such as:
"I'm truly uncertain about many things dealing with organ donations. "
Additional participants provided sentiments about their ambivalence about organization donation that include:
"I am not donor however it is being considered. "
"I'm an organ donor but I still want to believe that everything humanly possible will be done to save my life before my organs are split up to go to someone else. "
"I'm currently an organ donor and have been since "checking the box" during the driver's exam some 12 years ago. "
"Never did I think race would be a factor when people decided whether or not to become an organ donor. But I can understand how misconceptions about the process and stereotypes could influence those decisions. "
"I'm a Christian African American male and believe if my organs can help someone else (regardless of race) after my passing, its Gods will and my blessing to pass along to that person. "
Health education is an ongoing process which addresses key issues of diverse populations. Organ donations and transplantation is a culturally sensitive health care issue and a highly controversial subject for some people of color. Many are asked to become organ donors through various appeal processes, because of the shortage of organ donors; however, the literature shows that the number of African American donors remains low. While new advances in transplantation continue to improve the quality of live, gaps remain in the numbers of organs needed for African Americans. This pilot study was done to ascertain if the concerns found in the literature utilizing the 5 areas of reluctance: 1) lack of awareness, 2) lack of trust by the medical profession, 3) fear of premature death, 4) discrimination, and 5) religious beliefs and misconceptions.
Strategies to dispel the misconceptions should include continued education. Grass roots efforts may also increase awareness and reduce concerns for African Americans to become organ donors. This may consist of holding seminars in houses of worship, beginning with the clergy, which may provide a foundation to help dispel the views held by some that the body should remain whole after death. Owing to the continued areas of concern, nursing educators should introduce the discussion of organ donation from a cultural competence perspective and ensure that the concept in is an integral component of the core curriculum.
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Spigner, C, Weaver, M., Cardenas, V., & Allen, M. D. (2002). Organ donation and transplantation: ethnic differences in knowledge and opinions among urban high school students. Ethnicity & Health, 7(2), 87-101.
United Network for Organ Sharing. (2001 ). Retrieved March 3 1 , 2012 at http://www.unos.org.
Werner, P., & Mendelsson, G. (2001). Nursing staff members' intentions to use physical restraints with older people: testing the theory of reasoned action. Journal of Advanced Nursing, 35(5), 784-791.
Esther R. Brown, EdD, RN, ThB
Esther R.Brown EdD,RN,Th.B, Assistant Professor, Freshman Level Coordinator, School of Nursing, Office 325, 610.499.4230. Dr. Brown may be reached at: ebrown@mail. widener.edu. Widener University, One University Place, Chester, PA 19013.
I would like to acknowledge Courtney Miller, GN. She collaborated on the project by assisting in the set-up of the online survey and data collection as part of her honors program at Widener University; she did not contribute to the article.