Factors Limiting Deceased Organ Donation: Focus Groups Perspective From Culturally Diverse Community

Factors Limiting Deceased Organ Donation: Focus Groups Perspective From Culturally Diverse Community L.P. Wong ABSTRACT Background. In-depth understanding of cultural and religious factors limiting organ donation of three ethnic populations (Malay, Chinese, and Indian) in Southeast Asia is lacking. Identification of factors limiting organ donation among these three ethnic groups will provide insights into culturally appropriate strategies to promote acceptance of organ donation in a multiethnic Asian community. Methods. A total of 17 focus group discussions (105 participants) were conducted between September and December 2008. Participants were members of the general public aged 18 to 60 years, recruited through convenient sampling around the Klang Valley area of Malaysia. Results. Although the majority had favorable attitudes toward deceased organ donation and transplantation, a diversity of myths and misinformation were unearthed from the discussions across the ethnic groups. These include perceived religious prohibition, cultural myths and misperceptions, fear of disfigurement, fear of surgery, distrust of the medical system, and family disapproval. Culture and religious beliefs played important prohibitive roles among those opposed to organ donations. There were distinctive ethnic differences in cultural and religious concerns regarding organ donation. Less-educated and rural groups appeared to have more misconceptions than the well-educated and the urban groups. Conclusion. Our findings may assist organ donation and transplantation organizations to reach diverse sociodemographic and ethnic communities with culture-specific information about organ donation. The involvement of community and religious leaders is critical in organ donation requests. MALAYSIA IS A FAST-DEVELOPING COUNTRY in Southeast Asia, encompassing a majority Malays and other ethnic groups including mainly Chinese and Indians, as well as other minority groups. The majority of Muslims are Malays (50.8%); most of the Chinese (23.0%) follow Buddhism, Taoism, or Confucianism; and the majority of Indians (6.9%) are Hindus or Sikhs. 1 Like most parts of the world, in Malaysia, there is a shortfall in the number of organs available for transplantation. From 1997 to the end of 2008, a cumulative total of 119,002 persons (of 27.7 million population, 2008 estimate) pledged their organs. 2 The Third Report of the National Transplant Registry 3 reported that the rate of procurement (per million population) was only 1.01 in 2006, a rate that was among the lowest in the world. From 1997 to 2006, only 162 organ procurements were performed. 3 Opinions toward organ donation have been studied in many Western countries 4 7 and some Asian communities. 8 11 Compared with Caucasians, Asians are more reluctant to be donors. 12,13 Within Southeast Asian communities, in Singapore, our immediate neighboring country, difficulties with organ donation and transplantation have been reported to be due to negative attitudes as well as cultural and religious reasons. 14,15 Sharing an almost similar ethnic composition with Singapore, ethnic disparities in organ donation and transplantation are prominent in Malaysia. Among those who have pledged their organs, the majority were Chinese (57.0%), followed by Indians From the Medical Education and Research Development Unit, University of Malaya, Kuala Lumpur, Federal Territory, Malaysia. The study was funded by University of Malaya research grant FS185/2008B. Address reprint requests to Dr Li Ping Wong, BSc (Hons), MSc, PhD, University of Malaya, Kuala Lumpur, Federal Territory 50603, Malaysia. 2010 by Elsevier Inc. All rights reserved. 0041-1345/ see front matter 360 Park Avenue South, New York, NY 10010-1710 doi:10.1016/j.transproceed.2009.11.053 Transplantation Proceedings, 42, 1439 1444 (2010) 1439

1440 WONG (22.0%), Malays (11.4%), and other ethnic minorities (2.7%). 2 Likewise, among the donors, Chinese were 57%, Indian 33%, and Malay 7%. 3 In-depth understanding of cultural and religious factors limiting organ donation among the three ethnic populations (Malay, Chinese, and Indian) in Southeast Asia is lacking. There have been relatively few publications about organ donation and transplantation in Malaysia. Thus, this study sought to investigate the public s knowledge and attitudes about deceased donor organ donation and transplantation across the three main ethnic population groups Malay, Chinese, and Indian. An exploratory, qualitative research design was used to enable in-depth understanding of the complexities of cultural issues surrounding organ donation. The study hoped to identify factors limiting organ donation among our diverse ethnic community to provide insights into culturally appropriate strategies to promote organ donation. METHODS A sample of the general public aged 18 to 60 years was recruited in the Klang Valley area of Malaysia. Focus group discussion (FGDs) segregated by gender were divided by ethnic and urban/rural locality groups to ensure homogeneity, to enable participants to feel at ease in expressing themselves, and most importantly to make comparisons across the groups. Before each group discussion, written background survey questions were administered to participants to gather information about their demographic backgrounds. Group discussions were conducted in English, Bahasa Malaysia (Malaysian national language), or the respondents native language (Cantonese and Mandarin). Written informed consent was obtained from all participants. We developed a semistructured focus group moderator s guide corresponding to the research questions. The guide consisted of four sections: The first elicited participants general knowledge and awareness about organ donation. The second part queried participants attitudes toward deceased organ donation and transplantation. Issues being discussed included willingness to donate organ after death, promoters and barriers to signing as an organ donor, and religious aspects. The guide was pilot-tested and revised; the final revision remained the same for all focus groups. Discussions that took approximately 1 hour were audiotaped and transcribed into English. Notes taken by the moderator and note taker were supplemented with audiotapes to glean details from the discussion. Data from the focus groups were analyzed in a descriptive and interpretive manner. Coding, which began by identifying broad conceptual themes, was refined as more data were analyzed. In particular, themes on concerns about organ donation were grouped into major categories and subcategories. We identified phrases and quotations that highlighted the themes. The study was approved by the Medical Ethics Committee, University Malaya Medical Center Committee. RESULTS Participants The FGDs were held between September to December 2008 at location and time convenient to the participants. Participants were recruited from multiple sources and through a variety of strategies from urban and suburban areas in Klang Valley of Malaysia. The venues for the discussions ranged from the university, offices, and participants homes. A total of 17 FGDs were conducted, each composed of five to eight multiethnic Malaysians (total 105 participants). The demographic distribution of the study sample is shown in Table 1 The mean age of the sample was 36.6 years ( 12.0 standard deviations). Knowledge, Awareness, and Information Sources The issues and questions that probed them are illustrated in Table 2. Quotes are also included in the table to support the identified themes. Most participants had heard of organ donation and transplantation. Almost all knew that organs for donation can come from both living as well as deceased persons. They were also highly aware of the constant shortage of donated organs and the increasingly acute need for organs. Many knew that people who wish to be organ donors needed to Table 1. Characteristic of Focus Group Participants (n 105)* Characteristic No. of Participants (%) Gender Male 47 (44.8) Female 58 (55.2) Age (y) 30 61 (58.1) 30 49 26 (24.8) 50 18 (17.1) Ethnicity* Malay 47 (44.8) Chinese 36 (34.3) Indian 22 (21.1) Religion Muslim 47 (44.8) Buddhist 22 (21.0) Taoist 5 (4.8) Hindu 20 (19.0) Christian 10 (9.5) Highest educational attainment Primary school 6 (5.7) Secondary school 45 (42.9) College/university 54 (51.4) Occupation Professional 8 (7.6) Managerial 12 (11.4) Skilled worker 41 (39.0) Unskilled worker 1 (1.0) Housewife 19 (18.1) Student 17 (16.2) Unemployed, retired 7 (6.7) Average household income* RM2000 36 (34.3) RM2000 RM4000 43 (41.0) RM4000 26 (24.8) Locality 81 (77.1) Urban 24 (22.9) Rural All values are based on participant self-reporting. *Values in some categories do not sum up to 100% due to rounding. Values less than 100% due to nonresponses from participant. US $1 Malaysian Ringgit (MYR) $3.51, as of August 12, 2009.

FACTORS LIMITING DECEASED ORGAN DONATION 1441 Table 2. Focus Group Guide and Key Concepts Issues for Focus Group Exploration Probes Example of Selected Quotes Knowledge and awareness of organ donation and transplantation Views and attitudes towards organ donation and transplantation Meaning of the term organ donation Knowledge on how and where to sign up Knowledge on organ donation process Willingness to donate organs in future Religious aspects of organ donation and transplantation Promoters and barriers to signing up I suppose a person has to personally go to general hospitals and sign up, no other places, not district hospitals or clinics. Very difficult to allocate time and go; furthermore, this is not something urgent. Malay male, 56 I don t think we can, you have signed, so when they see the card, they will take the organs. Indian female, 25 I signed up because of religion, my religion want us to help people, and to share. If my religion said no, I probably won t. Chinese female, 21 I see it as a waste if I don t, I want to do good deeds. So I signed up. But my parents were not very happy when I told them. Malay male, 29 I have not thought about death yet, I am still young, when I am older, 40 something, I will sign. But I have to discuss it with my family, if they disapprove, I won t want to. Indian male, 27 I wish to, but I have no opportunity. I don t know where to sign up, where to get the form. Malay female, 52 I cannot allow my organ to go to a non-muslim. I dislike my organ inside the body of a non-muslim who practices against Islam such as alcohol drinking and eating pork products. Also, if a person who received my organs conducted crime, I am in part responsible. Preferably give us assurances the organ goes to a Muslim. Malay female, 27 It was said that the body can feel pain. When they wash the body before the burial ceremony, they do with great care. So, I don t know whether I will feel the pain when they (doctor) take my organ after death. Malay female, 31 When I signed up, I didn t give much thought, I just want to help people in need, but now, I am a bit afraid of all the beliefs. We need clearer opinion from our ulama (senior preachers) and imam (heads of prayer) whether in Islam organ donation is a violation of the dead body. Malay male, 29 I intend to donate, but I heard if the eyes missing, we cannot see the road (after death). I think if I want to, I will give other organs but not my eyes. Chinese female, 46 So basically they want your lungs, all they do is just take out your lungs, they don t care how your chest looks like, they don t care how you will look physically outside because you are dead. They just take what they need and dump you in the plastic bag and send you back to your parents. Chinese female, 25 I would want to give my internal organs, but not my eyes. I don t want to look ugly [after death]. I heard it looks a bit different if the eyes were removed. Indian male, 33 I have signed up, but I didn t inform my parents, I will tell them later. My mother is not very open minded. I know they won t allow me signing up. Chinese male, 28 sign up to with the National Donor Registry and to carry a donor card in their wallets. However, a minority were unaware that it is essential to inform family members of their decisions to be a donor. Many viewed registration to only be performed at general hospitals or that a person must present him- or herself to the registration office. Some erroneously believed that they cannot specify particular organs that they wished to donate. There was also misconception held by some participants regarding withdrawal from donor registry. They perceived removal from the registry was not possible; therefore, they needed proper consideration before signing the donor card. Attitudes All participants generally held supportive attitudes toward the concept of organ donation and transplantation even among those who had not signed a donor card or refused to donate their organs after death. Of the 105 participants across 17 FGDs, only eight said that they had signed a donor card. The responses regarding reasons underlying willingness to be an organ donor varied. Many reasoned that they desired to do a good deed and help others. A participant responded that she decided to donate because of strong religious encouragement. Of those who had not registered as an organ donor, approximately half reported that they were willing to donate their own organs at the time of death. Many required more information about the entire process of organ donation to make a decision to be an organ donor. Some reasoned that they did not see the urgency to register as an organ donor, as there appeared a lack of active promotion and encouragement for organ donation. Many viewed the

1442 WONG lack of opportunity to register due to a lack of easy access for people to conveniently register as an organ donor. They urged more donor registration booths at public places like shopping malls, college campuses, and religious institutions (mosque, temple, church). Young participants said they have never thought about organ donation as they have never been exposed to information and furthermore they were still too young to discuss donating their organs after death. Across the groups, the participants expressed various concerns about organ donation. The identified main themes about concerns of organ donation in the order of most frequent repetition were: (1) perceived religious prohibition, (2) cultural mythology, (3) fear of disfigurement, (4) fear of surgery, (5) distrust of the medical system, and (6) family disapproval. Table 3 illustrates the ethnic differences among the identified themes. Perceived Religious Prohibition Perceived religious prohibition against organ donation was expressed by some individuals across all the three major religions. Many Chinese Buddhist participants stated that their religion supports and encourages organ donation. However, a considerable number of Malay Muslim and Indian Hindu participants expressed religious prohibition against organ donation. Among all the three major religions, the religious aspect of organ donation was most debated among the Muslim participants. Many feared that their organs would go to unworthy individuals. Those who expressed willingness to donate organs after death strictly wanted their organs to be given only to Muslim recipients, but this was not universal. They reasoned that it is sinful if organs from a Muslim were inside the body of a non-muslim or individual who adopted practices that contradicted Islamic norms and values. Nevertheless, many Muslim participants were unsure whether organ donation was permissible or prohibited (haram) in Islam. They expressed a desire for a more definite opinion from their religious leaders (imam, ulama). However, when probed, most Chinese and Indian participants who were willing to donate their organs did not mind if their organs went to recipient of other ethnic groups. Table 3. Ethnic Differences in Perceptions of Organ Donation and Transplantation Issues for Focus Group Exploration Malay Chinese Indian Religion prohibition to organ donation Against organs being inside the body of recipient of different ethnic groups Intactness of body is important in spiritual world or for the next life Body can still feel the pain Fear of the organ retrieval procedure Fear of disfigurement Sensitive to discuss issue related to death Family members disapproval Cultural Myths and Misperceptions The participants also raised concerns that were not based on religious beliefs, but rather on cultural myths or superstitions that were passed from generation to generation or stories from people in the community. Chinese participants were more likely to believe that if an organ was removed from the body, one did not have the particular organ when they entered the spiritual world; whereas Hindu participants believed that the body should remain intact for their next life (reincarnation). In contrast, Malay Muslim participants in the study cited that in the Islamic perspective, the deceased s body must be handled carefully, as it can still feel pain. They reasoned therefore that it was of utmost importance to handle the body with great care in preparation (washing the deceased s body) and burial. Fear of the Organ Retrieval Procedure Although the Chinese and Indians were least likely to be concerned that the body can feel pain, many expressed fear and anxiety about the organ retrieval procedure. They were afraid that the operative procedure on deceased individuals will not be as respectful as on those who are alive. Fear of Disfigurement The fear of body mutilation or disfigurement following organ removal was common across all ethnic groups. Many worried their body will not be presentable for funeral viewing, aggravating distress to their loved ones. There were suggestions that the public should be given assurance that the body would be respected by health care professionals during organ retrieval and that the extent of disfigurement should be minimal. Distrust of Health Care Professionals and Health Care System Fear that signing a donor card would lead to premature declaration of death and belief that doctors will not try as hard to save life if they know their wish to be an organ donor were not suggested by participants in any group. When probed, many trusted health care professionals and the system; only a small number were concerned about these issues. Family Disapproval Across the groups, participants among all ethnic groups viewed family consent to signing an organ donation form as important, since they did not want the family feel pressured. Among the discussion groups, the Chinese had the highest number of participant who mentioned that their parents or elderly family members had superstitious fears about death and issues of dying. The participants cited that elderly family members did not allow them to sign as organ donors. They believed that signing or agreeing to become an organ donor brought bad luck and even hastened their deaths. A

FACTORS LIMITING DECEASED ORGAN DONATION 1443 Chinese participant noted that she registered as an organ donor but had not told her parents; several others cited family disapproval as the barrier preventing them from sign as a donor. On the whole, participants from urban areas and of higher educational levels showed more favorable attitudes toward organ donation and transplantation, were less likely to belief in traditional or cultural myths of organ donation, and were more inclined to sign as organ donors. In contrast, among the Malay participants, regardless of educational level or urban/rural locality, those who were more religiously conservative were more skeptical about organ donation. Compared to men, female participants were less willing to donate, exhibiting far more concern about all of the above aspects of organ donation. DISCUSSION The focus group interactions provided valuable insights into the understanding of participants about organ donation and transplantation. The study findings indicated that it is essential to promote awareness of the necessity of organ donation to the public. Lack of awareness causes people to miss out on the opportunity to sign up as organ donors. Nationwide organ donation campaigns and registration outlets across the country are needed to raise awareness and make registration more accessible to the public. As many subjects desired easy access to registration to be an organ donor, registration outlets should be made available in public places like shopping malls, civic offices, banks, college campuses, or religious institutions to provide an easily accessible means for registration. In particular, the public should be informed that organ donation is completely voluntary. They must be made aware that they can withdraw consent at any time, and they can choose which organs they would like to donate. The results of the focus groups indicated that most subjects had favorable attitudes toward organ donation, although they expressed reluctance to donate. Chinese and Indian participants were more likely to view the barriers to organ donation as cultural beliefs or anecdotal stories rather than perceived formal religious prohibition. In contrast, Malay participants exhibited uncertainty regarding religious aspects of organ donation, expressing needs for clarification between the reality and the myths of organ donation. As reported in another study, 16 with regard to organ donation, the Muslim participants in this study viewed it to be important for them to behave in accordance with Islam. In the Asian community, where religious prescriptive was important to many ethnic groups, support from religious groups has been suggested to be an important factor to overcome donation barriers. 17 19 The myths and misconceptions about organ donation identified in this study need to be addressed as they can impact donation decisions. Although the participants expressed trust in the health care system, responses including fear of the organ retrieval procedure or bodily disfigurement indicated otherwise. Health care system mistrust has been identified in another study as a barrier to donation. 20 It appeared that people need more assurance that doctors will provide the best possible care and respect to the donor s body. In our multiethnic and multireligious community, a culturally sensitive approach to improve organ donation rates of all ethnic groups is necessary. This is particularly important for Muslims, as their beliefs and behaviors toward organ donation were strongly influenced by their religious norms. 19 For instance, views from the Muslim participants who insist on giving their organs to only Muslim recipients need substantial consideration. The reluctance for organs from Muslims donors to go to non-muslim recipients among Muslim Malays in Singapore 15 were strikingly similar to ours, despite the Muslim religious decree sanctioning kidney donation in their country. At the current moment, a person cannot choose to whom their organ is given. Perhaps the system should allow Muslim donors to select the transplant recipient s religion to enhance the donation rate among Muslims. Nevertheless, further study is warranted to determine whether the concerns of ethnicity or religions of the organ recipient contribute to the low donor rates among Muslims in Malaysia as reported by National Transplant Resource Center. 2 Future study should also investigate whether the relatively low rates of organ pleader among Malays 3 were also due to the same reason. There were differences in the attitudes toward organ donation and transplantation between the educated versus noneducated respondents, and urban versus rural groups. Thus, the findings urge implementation of public education campaigns for organ donation to emphasize on the lesseducated rural residents. Reluctance to discuss organ donation within the family has been widely documented among people of Chinese origins. 11,21,22 Likewise in this study, reluctance to discuss organ donation with their families and family objections to sign as an organ donor were more prevalent among the Chinese groups. As family factors influence decisions to sign, it may be necessary for the organ donor campaigns to advocate discussion and educate individuals or family members who influence decision making. Caution must be exercised when drawing conclusions beyond the sample assessed in the present study owing to the qualitative nature of the study. Thus, further investigation for generalization of findings using quantitative method is warranted. Second, all information obtained from the discussion was self-reported, and reporting bias due to socially desirable attitudes and behaviors might exist. Additionally, this study focused on attitudes rather than actual behaviors; further, attitudes do not necessarily predispose one s actual behaviors. Despite these methodological caveats, the issues highlighted by this study are of considerable importance for the understanding of public views on organ donation and transplantation. They may have significant implications for promotion campaigns in a

1444 WONG multiethnic society. The study also fills the gap in the relatively scarce literature in the Malaysia context, adding to the international body of literature. In conclusion, our findings showed that despite the numerous barriers to organ donation, most study participants were favorable to the concept. There will be an increase in the pool of potential organ donors if we addressed the structural and attitudinal barriers that impact donation willingness. One of the most important findings of the study was the in-depth understanding of a diversity of cultural and religious concerns regarding organ donation across our culturally diverse community. To respond to cultural and religious concerns regarding deceased organ donation, we specifically suggest culturally based interventions to increase awareness and correct misconceptions. The involvement of community and religious leaders will be critical to gain community acceptance of organ donation across the three main ethnic groups. Last, the health care organizations must take more proactive roles to overcome these physical or structural impediments to accessing information about the possibility and the registration to be an organ donor. REFERENCES 1. Social Statistics Bulletin Malaysia 2008. Department of Statistics, Malaysia 2. National Transplant Resource Center: Demographic characteristics of organ pledgers. Hopsital Kuala Lumpur. August 2008 3. National Transplant Registry Malaysia: Third Report of the National Transplant Registry Malaysia 2006. Kuala Lumpur: National Transplant Registry; 2006. Available at: http://www.mst. org.my/ntrsite/publications_3rdreport2006.htm 4. Sander SL, Miller BK: Public knowledge and attitudes regarding organ and tissue donation: an analysis of the northwest Ohio community. Patient Educ Counsel 58:154, 2005 5. Sanner MA: A Swedish survey of young people s views on organ donation and transplantation. Transpl Int 15:641, 2002 6. Morgan SE, Miller JK: Beyond the organ donor card: the effect of knowledge, attitudes, and values on willingness to communicate about organ donation to family members. Health Commun 14:121, 2001 7. Horton RL, Horton PJ: Knowledge regarding organ donation: identifying and overcoming barriers to organ donation. Soc Sci Med 31:791, 1990 8. Exley C, Sim J, Reid N, et al: Attitudes and beliefs within the Sikh community regarding organ donation: a pilot study. Soc Sci Med 43:23, 1996 9. Chan YT, Chiu KC, Cheng ST, et al: Public attitudes toward kidney donation in Hong Kong. Dialysis. Transplant 19:242, 1990 10. Pham H, Spigner C: Knowledge and opinions about organ donation and transplantation among Vietnamese Americans in Seattle, Washington: a pilot study. Clin Transplant 18:707, 2004 11. Yeung I, Kong SH, Lee J: Attitudes towards organ donation in Hong Kong. Soc Sci Med 50:1643, 2000 12. Manninen DL, Evans RW: Public attitudes and behavior regarding organ donation. JAMA 253:3111, 1985 13. Pham H, Spigner C: Knowledge and opinions about organ donation and transplantation among Vietnamese Americans in Seattle, Washington: a pilot study. Clin Transplant 18:707, 2007 14. Woo KT: Social and cultural aspects of organ donation in Asia. Ann Acad Med Singapore 21:421, 1992 15. Kaur M: Organ donation and transplantation in Singapore. Transplant Proc 30:3631, 1998 16. Hayward C, Madill A: The meanings of organ donation: Muslims of Pakistani origin and white English nationals living in North England. Soc Sci Med 57:389, 2003 17. Gurch R: An exploratory study examining the influence of religion and attitudes towards organ donation among the Asian population in Luton UK. Nephrol Dial Transplant 13:1949, 1998 18. Lam WA, McGullough LB: Influence of religious and spiritual values on the willingness of Chinese-Americans to donate organs for transplantation. Clin Transplant 14:449, 2000 19. Randhawa G: An exploratory study examining the influence of religion on attitudes towards organ donation among the Asian population in Luton, UK. Nephrol Dial Transplant 13:1949, 1998 20. Rocheleau CA: Increasing family consent for organ donation: findings and challenges. Prog Transplant 11:194, 2001 21. Guadagnoli E, Christiansen CL, Dejong W, et al: The public s willingness to discuss their preference for organ donation with family members. Clin Transplant 13:324, 1999 22. Molzahn AE, Starzomski R, McDonald M, et al: Chinese Canadian beliefs toward organ donation. Qual Health Res 15:82, 2005