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Psychosomatic Medicine 63:69-78 (2001)
© 2001 American Psychosomatic Society

ORIGINAL ARTICLES

Impact of Cadaveric Organ Donation on Taiwanese Donor Families During the First 6 Months After Donation

Fu-Jin Shih, RN, DNSc, Ming-Kuen Lai, MD, Min-Heuy Lin, RN, Hui-Ying Lin, RN, Chuan-I Tsao, RN, Ling-Ling Chou and Shu-Hsun Chu, MD, FACC, FICS

From the School of Nursing (F.-J.S.) and the Departments of Urology (M.-K.L.) and Surgery (S.-H.C.), College of Medicine, National Taiwan University; and the Departments of Nursing (M.-H.L., H.-Y.L., C.-I.T.) and Social Workers (L.-L.C.), National Taiwan University Hospital, Taipei, Taiwan.

Address reprint requests to: Shu-Hsun Chu, MD, FACC, FICS, Director, Far Eastern Memorial Hospital, Panchiao and Professor, Department of Surgery, National Taiwan University Hospital, 7, Chung-Shan South Rd, Taipei, Taiwan (100). Email: femh100{at}ms2.hinet.net


   ABSTRACT
TOP
 ABSTRACT
INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
 ACKNOWLEDGMENTS
 REFERENCES
 
OBJECTIVE: Organ donation is a complex decision for family members of Asian donors. The impact of cadaveric organ donation on both Chinese and Western donor families has not been well investigated within a cultural framework. The purposes of this study were to follow Chinese family members’ appraisal of their decision to donate organs, to explore the possible negative and positive impacts of organ donation on their family life, and to determine what help they expected from healthcare providers during the first 6 months after donation.

METHODS: Twenty-two family members (10 men and 12 women) of cadaveric organ donors who signed consent forms at an organ transplant medical center in Taiwan participated in this project and completed in-depth interviews during the sixth month after donation.

RESULTS: Participants were 25 to 56 years old (mean = 48.15 ± 8.31 years). The type of kinship of the participants included the donor’s parents, older sister, and spouse. Subjects reported several negative impacts: worry about the donor’s afterlife (86%), stress due to controversy among family members over the decision to donate (77%), and stress due to others’ devaluation of the donation (45%). Positive impacts reported by the subjects included having a sense of reward for helping others (36%), having an increased appreciation of life (32%), having closer family relationships (23%), and planning to shift life goals to the study of medicine (9%). Subjects expected the transplant team to provide information about organ recipients (73%), to submit the necessary documents so that family members could receive healthcare payments from the insurance company (68%), to help resolve legal proceedings and settlements associated with accidents (64%), and to not overly publicize their decision to donate (64%).

CONCLUSIONS: Although all of the subjects reported that organ donation was the right decision, the decision to donate did not protect Taiwanese donor families from negative psychocognitive bereavement. The impacts of organ donation were affected by the subject’s social cultural, spiritual, and legal context and the nature of their bereavement.

Key Words: cadaveric organ donation • impact • families • Taiwanese culture.


   INTRODUCTION
TOP
 ABSTRACT
 INTRODUCTION
METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
 ACKNOWLEDGMENTS
 REFERENCES
 
Because more Chinese people now immigrate to, or study and travel in, Western societies, it is important to learn how the families of Chinese organ donors perceive their decisions to donate cadaveric organs and to study the impact of organ donation on Chinese families, as it is to study the impact of organ donation on Western families. Nevertheless, for years the impact of cadaveric organ donation on both Chinese and Western donor families has not been well investigated within a cultural framework.

Chinese and Taiwanese people share many traditional cultural roots (1–3). Chinese perceptions of self, health, and illness are heavily influenced by their traditional philosophies, which determine their value systems, attitudes, and behaviors (1). Because family is considered to be the core unit of Chinese society, most Chinese individuals in Taiwan are required to play unique family roles and to fulfill lifelong responsibilities toward other family members; therefore, the relationships among family members are rather close (1, 2). These intimate and complex interactions provide support during difficult times, such as after the loss of beloved family members (1–3). For years, researchers’ efforts centered on the stress, coping ability, and needs of organ transplant recipients and their family members rather than on the needs of or effects of organ donation on donors’ families (4–7). Organ donation is a complex decision not only for donors but also for their family members. Psychiatric intervention should be provided if donors’ families are experiencing any psychological turmoil (8). The impact of cadaveric organ donation on Taiwanese donor families in particular has not been well investigated.

The purpose of this study was four-fold: 1) to follow the family members’ appraisal of their decision to donate organs, 2) to explore the possible negative impact of organ donation on their family life and their strategies for coping with any negative impact, 3) to explore the possible positive impact of organ donation on their family life, and 4) to determine the type of help that family members expect from healthcare providers during the first 6 months after donation.


   METHODS
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
RESULTS
 DISCUSSION
 CONCLUSIONS
 ACKNOWLEDGMENTS
 REFERENCES
 
A qualitative research design was used because it allows important dimensions of analysis to emerge from patterns found in the cases under study without first presupposing what these dimensions will be (9). This means that the findings are grounded in a specific context and that the results derived from them are grounded in real-world patterns (10). The literature suggests that for this type of qualitative study, small samples of 1 to 31 participants be used (11–16) so that the meaning and nature rather than the amount of the phenomena can be identified and described (17–19).

Data Collection Method
An in-depth, semistructured interview (20) was the primary data collection technique used. The semistructured interview guide, entitled "Suggested Interview Questions and Probes for the Client," was developed by the investigator in consultation with six interdisciplinary experts: a grounded theorist and nursing theorist familiar with multiple qualitative methods, two organ transplant surgeons, and three organ transplant coordinating nurses. The interviews were conducted in the patients’ homes or in places where the subjects felt comfortable to talk. More than one interview was conducted if needed for clarification purposes.

When the subjects were asked to describe the negative impact of organ donation on their lives, one question was asked to help them differentiate between the psychological symptoms attributable to the decision to donate and those attributable to similar sudden bereavement experiences that did not involve organ donation. The question was "Have you had any negative experiences which you believed to be caused by or related to the decision to donate during the past 6 months?" The subject’s descriptions were confirmed by asking "Are you sure that the negative experiences which you mentioned were attributable to the decision of organ donation?" When the subjects confirmed their statements, their remarks were recorded and analyzed.

Forty-two close relatives of cadaveric organ donors who signed the donation consent form at National Taiwan University Hospital were individually approached during the predonation stage from January 1997 through February 1999. However, 14 donor families were too sad to talk, and 6 had moved and were unreachable in the sixth month after donation. As a result, 22 family members (10 men and 12 women, 52%) agreed to participate in the study, and 25 in-depth interviews were completed. Each interview lasted 40 to 60 minutes (mean = 50 minutes).

Standard research procedures, such as tape recording and transcription from Mandarin, Taiwanese, or Cantonese into English, were used. Several interviewing techniques based on grounded theory were successfully implemented. These included strategies for watching, such as passive presence (20), and strategies for listening, such as chronology ("...and then?" "When was that?"), detail ("Tell me more about that," "That’s very interesting"), clarification ("I don’t quite understand," "You said earlier"), and explanation ("Why?" "How come?") (20–22).

Analytical Methods
The data were first transcribed from audiotape in the patient’s native language (Mandarin, Taiwanese, or Hakka) using written Chinese. The accuracy of the data translation was checked by translating the English version back into Chinese and then having it reviewed by other investigators. Data analysis required a total of 26 months, starting with the first interview and continuing to the end of the research period.

To keep the emerging codes, categories, themes, and concepts firmly "grounded" in the subjects’ actual experiences, a unique mode of nine levels of qualitative analysis was used (23–25). The nine levels of analysis included 1) accurate transcribing and translating; 2) obtaining a holistic understanding of the subjects’ responses; 3) highlighting all data related to the codes concerning "the decision regarding organ donation," "the impact of organ donation," and "the help expected from healthcare providers"; 4) creating an action/interaction strategy-examining worksheet; 5) carrying out action/interaction strategy-examining work by using the worksheet; 6) using axial coding strategies to reexamine the related conditions, context, action/interaction strategies, and consequences; 7) applying constant comparisons to compare data from three angles (different informants’ personal accounts, the same informant at different times or under different conditions, and properties found in the expressions of different informants or the same informant); 8) using domain analysis strategies to determine any possible semantic relationships and to structure additional questions; and 9) applying linking data strategies to clarify the relationship between codes concerning the decision with regard to organ donation, the impact of organ donation, and the help expected from healthcare providers.

Several strategies were used to enhance the rigor of the findings. Informant checking was agreed to by all respondents (9, 22, 26–29). Negative cases were investigated and analyzed (22, 27, 30, 31). Each subject’s primary family member or caregiver was asked to confirm specific events (26, 27, 30, 32). In addition to a detailed description of the interview and reflexive journals, accurate transcriptions and translations were also prepared (22, 27, 28, 30). Finally, strategies to manage subjects’ difficulty in describing their perceptions related to issues of culture and language were also used (9, 10, 25, 33, 34).


   RESULTS
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
DISCUSSION
 CONCLUSIONS
 ACKNOWLEDGMENTS
 REFERENCES
 
Donors were between 19 and 42 years old (mean = 26.72 ± 6.85 years). Fifty-nine percent of them were men, and 68% were victims of an accident. Seventy-seven percent of donors had more than 12 years of education, and 22% of them were laborers ( Table 1). Participants (donors’ family members) were 25 to 56 years old (mean = 48.15 ± 8.31 years). The type of kinship of the participants included the donor’s father (41%), mother (31%), spouse (14%), and elder sister (14%). Eighty-two percent of the subjects had an educational level higher than junior high school. Forty-five percent of the subjects were laborers, and 64% were Buddhists. Sixty-four percent of the subjects agreed to donate selected solid organs, and others agreed to donate all of the donors’ available organs and selected tissues, including corneas, skin, and bone (Tables 1 and 2).


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  		Table 1. Demographics of Donors ( N = 22)
 

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  		Table 2. Demographics of Donors’ Family Members ( N = 22)
 
Appraisal of Decision to Donate Organs
All family members in this study felt that the decision to donate organs was correct. The subjects attributed their decision to encouragement from other family members (parents and siblings) and the donor’s friends. One said, "It was indeed a painful decision. My family members and I were often confronted by others about the correctness of the decision. Six months have now passed, but we still believe that it was one of the most wise decisions in our lives." Another said, "Both my husband and I decided to donate our child’s organs. We heard that we could accumulate yin-der [credits of goodness in the afterlife] for my daughter. During these 6 months we have had peace in our minds, and we believe that we made the correct decision." Other remarks included, "Whenever I heard the recipients express their appreciation to the donors and their families, I knew that it was the right decision," and "My son had a warm heart toward everyone, and I’m glad that he was able to help so many people whom he had never met before after he passed away."

Negative Impact of Organ Donation on Donors’ Families
Ninety-one percent of the subjects reported that their families experienced the following negative effects of organ donation: worry about the donor’s afterlife because of disfiguration of the donor’s body (86%), stress due to controversy over the decision to donate organs among the core family members and relatives (77%), and stress arising from others’ devaluation of the donation because of the donor family’s acceptance of money as a reward from the hospital even though it was for the funeral (45%). For instance, the following remarks were made: "My mom was worried about my sister. She was not sure whether my sister’s afterlife would be hindered by the loss of some organs, although we had asked the doctor and nurses to keep her appearance as intact and pretty as possible"; "My parents and grandmother worried about the integrity of my husband’s body. They often challenged me about the decision to donate organs. They warned me that my husband would not have a better human life cycle without at least some body organs, although they were grateful for the gift of money from the hospital"; "Some relatives and neighbors agreed with our decision, but some did not. They thought we donated our child’s organs for the money. As a result, we needed to waste a lot of energy explaining to them how we prepared for the funeral and how much we paid for the coffin, for hiring the person to find the tomb and perform the rituals for days on end, and for buying paper money and paper cars ... things like that"; and "Some of our relatives who were not close to us did not believe that our decision to donate organs was for others’ benefits. The money provided by the hospital was not even enough for us to prepare for the funeral. Some of our relatives just did not understand this, and this really made us feel frustrated."

The subjects also reported experiencing the following difficult situations: having preconceptions about donors (concentrating on the donor and not on the family members themselves) and failing to concentrate on oneself (100%); being unable to maintain daily activities (100%); being unable to fulfill job requirements (100%); being preoccupied by emotional turmoil, such as sorrow, sadness, psychological pain, and self-blame (95%); having a sense of an empty mind (77%); having a sense of blame or hatred toward those responsible for the accident (55%); and having a sense of despair or losing the will to survive (27%).

For example, remarks made included the following: "I couldn’t control myself thinking about him [my husband] all day long"; "My mind was occupied by my child’s image ... the activities related to him ... I mean everything, and I could do nothing about it"; "I knew that I needed to be strong to take care of my kids, but I just could not be. I felt so sad, tired, and pained. I tried to brave it out, but I was submerged in feelings of sorrow again"; "I just couldn’t concentrate. I felt so empty in my mind"; "I don’t think I myself could manage the mess caused by the car accident. I hated myself. Why was I so useless? I should have learned how to drive the car; otherwise he would not have been so tired and had the accident"; "You know the man, the killer, who was almost drunk? He ruined my family. I didn’t see that he really felt sorry for this terrible tragedy, and I don’t believe that I could ever forgive him"; and "I feel like I’m paralyzed, and many times I felt so full of despair that I lost the will to survive."

Coping Strategies for Negative Impacts
Several coping strategies were developed by the subjects to manage their difficult situations during the first 6 months after donation. Seventy-three percent of the subjects applied self-help or sought help from others and used spiritual support. Their self-help strategies included purposefully practicing concentration, positive thinking, and self-talking to comfort themselves and to maintain their daily activities. Some turned to other family members, relatives, close friends, health professionals, and religious affiliations to seek help in relieving their sense of loss and managing other negative living experiences.

Sixty-four percent of the subjects shifted their attention to other family members and activities. They noted that they were helped during this period of time by paying more attention to caring for other family members, and they engaged in activities such as housework, gymnastics, and mountain climbing. By doing so, their energy was expended, and they did not miss the donors as much.

The coping strategies developed by 45% of the participants involved staying away from or avoiding thinking about items or a physical environment associated with the donors to avoid triggering psychological turmoil. They packed up the donor’s clothing, stationery, pictures, toys, and other items, and then hid, discarded, or gave them to others. Some even moved to stay away from places associated with the donors. In addition to the aforementioned strategies, 36% of the subjects mentioned that they needed time to manage their psychic trauma.

Positive Impact of Organ Donation on Donors’ Families
Forty-five percent of the subjects experienced some positive impact from their decision to donate organs, such as having a sense of reward for helping others as a result of the donation (36%), having closer family relationships (23%), having an increased appreciation of life (32%), and planning to shift life goals toward the study of medicine (9%). For example, the following was reported: "After the donation surgery, I subconsciously paid more attention to the subject of organ donation. I heard many recipients express their gratitude to the donors and their families for granting them new lives and reborn families. My family members and I were often touched by their remarks, and this sense of reward is incredible and far beyond anything in the mortal world"; "Although the health professionals did not tell us who the recipients of my brother’s organs were, we ourselves did know. I met one of the recipients recently, but he did not know who I was. Seeing him and his family members smiling again and resuming a better quality of life, I felt so touched. After I shared what I had seen with my family, they were also encouraged by the sense of reward"; "I never thought that I had ignored my wife and other children for so many years. After I lost my most precious son, I suddenly realized that I could not afford to lose anyone in my family. Since that time I have had a close relationship with my other children, and I am willing to pay more attention to them and spend time with them. This is another blessing from my son now in heaven"; "Now all my family members stay close to one another more than ever before. We learned to respect each other and shared our feelings and daily activities"; "I never imagined that life was so fragile. I mean anyone may be gone in no time, so I’ve become more humble and treasured the lifespan and the meaning of life more than I ever did"; "Learning from the tragedy of my brother’s death and the contribution of his organs for transplantation, I decided to change my study plan and invest my future in studying medicine in order to help the sick and save lives."

Type of Help That Family Members Expected From Healthcare Providers
Ninety-five percent of the subjects expected help from their healthcare providers, including providing information about the health status of the organ recipients (73%), submitting the necessary documents to receive healthcare payments from the insurance company (68%), resolving legal proceedings and settlements associated with accidents (64%), and avoiding overpublicizing their decision to donate organs (64%). For instance, the following was reported: "For heaven’s sake! I missed my son so much. Is it possible for you to tell me how the recipients are doing?"; "Can you tell me who the recipients of my child’s organs are? Have they recovered smoothly?"; "Are my daughter’s organs functioning well in their new homes [bodies])?"; "We had no idea of asking for help from the insurance companies. They required a lot of documentation, so is it possible for someone in the hospital to help us?" "Is it possible for you to help me manage these troublesome legal issues?"; "The car accident driver hired a lawyer, and my family members and I had no experience in dealing with lawyers. However, we could not afford to hire another lawyer. Can you health professionals do something for us about this?"; "Please do not tell my friends or relatives apart from my core family members about my decision to donate organs since they might not have a positive impression of organ donation"; and "My wife and I would rather keep the decision to donate organs a secret now, so please do not reveal this decision to others."


   DISCUSSION
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
CONCLUSIONS
 ACKNOWLEDGMENTS
 REFERENCES
 
The four themes that emerged from the data were found to intercorrelate within the context of the decision to donate organs on Taiwanese cadaveric donor families during the early postdonation transition period. These four themes are family-centered cultural background, the donor family members’ religious affiliation, impending tangible needs, and bereavement caused by sudden loss of a family member.

Family-Centered Cultural Background
Although all of the Taiwanese donors’ family members in this study reported that their decision to donate organs was correct, 75% of them were troubled by other family members and relatives about the donation decision. In Taiwan, most cadaveric donations occur after car or motorcycle accidents. Accidents and injuries were the fourth leading cause of death in 1998 (35). They were also the first and second leading causes of death for Taiwanese persons aged 15 to 44 years and 45 to 64 years, respectively. In addition, they were the second leading cause of death for the total male population (36). In other words, car or motorcycle accident victims are often young or middle-aged men. Most of them are their families’ major source of income (37) and the key person who maintains their core and extended families’ psychosocial and tangible well-being (3, 37). For example, they may be parents of dependent children, financial providers for elderly parents, and decision-makers for their core and extended families and companies. Continuing to live without the donor’s support was reported to be very stressful for most Taiwanese families in this study.

Arguments related to the decision to donate were found to be more explicit in families in which the family members interacted closely when making the decision together. Healthcare providers need to be aware of this and should try to explain the concept of organ donation to the decision-makers together and allow them time to discuss it whenever possible before the decision is made.

Some Taiwanese donors’ families started to have a closer relationship than usual, and some family members started to appreciate their lives more or planned to study medicine. Regaining family integrity and self-reliance can be viewed as positive kinds of coping behavior (10), enhancing family as well as individual growth.

Another notable finding in this study was that 73% of the subjects expected the transplant team members to introduce them to the recipients. More than half hoped that the transplant team would be able to provide them with up-to-date information about the organ recipients. Three reasons were provided: confirmation of the value of organ donation, the need to extend the kinship relationship, and a sense of curiosity. Most Taiwanese Buddhist families and Confucian ideologists in this study said that they would like to regard the recipients as members of their extended family. In contrast, Christian donors’ families in this study were more interested in learning about the recipients’ health condition and quality of life rather than in recruiting the recipients to become their family members. Because of their beliefs about the afterlife, Taiwanese Buddhist families in this study had stronger concerns about the recipients and wanted to establish a kinship relationship with them. Nevertheless, recipients often still suffered from health-related stresses, such as the side effects of immunosuppressive agents, medical complications, and readjustment to a changing quality of life during this period of time (38). Whether this request would cause further stress for both the recipients and the donor families deserves further follow-up within a Taiwanese cultural context.

Donor Family Members’ Religious Affiliation
It seems that religious affiliation also plays an important role in framing the impact of the decision on Taiwanese donor families’ living experiences during the early postdonation period. The influence of religious affiliation or Confucian beliefs encompassed prescriptive egoism (benefit to the donors and their families and relatives) and altruism (benefit to nonrelatives) (39).

The concept of t’ien (a Mandarin word meaning heaven) is widely internalized by all Taiwanese Buddhists, Confucian ideologists, and Christians (40–42). They believe that everyone is destined by t’ien or God(s) to fulfill his or her specific mission on earth (43). In addition, Taiwanese Buddhists believe in reincarnation, meaning that human souls are immortal and are on their eternal journey occupying a new body (human or animal) on their sojourn (41, 43–45). The accumulation of good deeds through compassion or suffering from painful experiences in the mortal world will enable them to obtain a higher status of being in the eternal world (41, 43–45). Based on this, the deceased donor is believed to be rewarded by becoming a god or goddess or another human being with a better social economic status in his or her next cycle of human life. The most common example cited by organ transplant coordinating nurses for Taiwanese Buddhists is that Buddha is believed to have carved out his eyeballs to help mortal men restore their eyesight.

Taiwanese donor families who were Confucian ideologists often indicated that they were confused by the merits of organ donation and a Confucian doctrine that states it is not acceptable to damage one’s body because the body is an invaluable gift from one’s parents. In this case, organ transplant coordinating nurses need to spend time with the donor families to explain that this doctrine originally meant that no one should hurt his or her body by his or her own will but rather that a person should highly value his or her body to fulfill the mission from heaven. On the other hand, Confucian ideologists believed that by donating organs, the deceased would practically fulfill the doctrine of goodness, which is the ultimate ethical standard set by t’ien as well as the foundation of creation (46).

Some Buddhist subjects in this study reported worrying about the donor’s afterlife because of disfiguration. Religious beliefs and misconceptions are noted as some of the reasons why minority populations such as African Americans are reluctant to donate organs (47). Preserving an optimal appearance of deceased Taiwanese individuals by maintaining the integrity of their skin and bones bears important ethical, religious, and cultural meanings to both the deceased person and his or her family members. Respect for the deceased body is deemed to reflect a visible and symbolic respect for the deceased’s spirit (45). In addition, from the Buddhist aspect, failing to maintain the integrity of skin, such as in disfiguration, would be considered a sign of a curse (44). The deceased’s afterlife and his or her families’ prosperity in the mortal world would also be hindered. Thus, maintaining the integrity of the cadaveric donor’s body is one of the most visible means for the donor’s family and friends to show their respect for the donor. In addition, because one’s appearance plays a crucial part in constructing one’s body image, it is important for a Taiwanese donor’s family and friends to maintain the integrity of the cadaveric donor’s skin and bones. By so doing, their memory of the donor’s optimal image would be preserved, and this positive memory would further facilitate their recovery from the grieving process. If the donor’s bodily integrity is not maintained, the Taiwanese family members may feel guilty and may also be looked down on by their relatives and friends. As a result, the donor’s family’s grieving might be prolonged or aggravated, and the symbolic meaning of "bad death" may be further cast over the donor’s whole family. That is why transplant team members in Taiwan often spend quite a lot of time with the donor’s family to assure them that the integrity, cleanliness, and good appearance of the donor’s face and body will be maintained.

Impending Tangible Needs
The impact of donation on Taiwanese donors families during the early postdonation stage was also found to be attributable to their impending tangible needs related to financial and legal issues.

Impending financial needs.
Sixty-four percent of Taiwanese cadaveric donors’ family members in this study appreciated the financial reward given by the hospital. Although this type of reward is unacceptable in most Western societies (8, 48, 49), it is common in Taiwan. In Chinese culture, the funeral ceremony is one of the most important events in a person’s life. For Taiwanese Buddhists, the quality, including the content and procedure, of the funeral ceremony is believed to influence the quality of the deceased person’s afterlife. For example, Taiwanese Buddhist families believe that with their help in preparing precious stones, food, fabrics, paper-made houses and cars, and related materials, the deceased is able to lead an optimal lifestyle in the immortal world. Meanwhile, to guide the deceased in finding the way to heaven and to accumulate yin-der for him or her as soon as possible, donor families often hire Buddhist priests to chant Buddhist literature and songs for several days. During this period of time, many Taiwanese Buddhist donors’ family members also hire an expert to shop for the best site for a grave for the donor because they believe that good spirits around or in the grave represent metaphysical power that will facilitate or hinder a donor family’s prosperity in the mortal world for several generations. As a result, Taiwanese Buddhist family members often spend a lot of money on the donor’s funeral and related preparations. In addition, none of the family members go to work or school during this the time (which can last from 7 to 30 days) but stay home to accompany the donor’s body and thus comfort the donor’s soul. Hence, some families may not generate any income during this period. Meanwhile, the sudden loss of the donor might also result in an overwhelming financial crisis for family members.

In addition, most Taiwanese hospitals offer a certain amount of money in the form of a reward for the cadaveric donor’s family members to help them prepare for the donor’s funeral. Although the reward offered by hospitals in Taiwan is not standardized, it is commonly accepted that the donor is exempted from medical expenses of about $6250 (US; ratio of US:NT = 1:32) and receives about $3125 (US) for organ donation. Nevertheless, 40% of the donors’ family members in this study reported being challenged by their relatives about how the reward money was used. It seems that the following questions deserve further investigation within a Taiwanese cultural framework: 1) How much has the reward money helped the donor’s family and how much reward money offered by the hospital is appropriate for the donor’s family? 2) What are the possible adverse consequences of the hospital giving the donor’s family a reward? 3) What is the relationship between the type of organ donated and the donor’s relatives or friends being willing to help support funeral expenses? 4) What is the donor family’s appraisal of the impact of a reward offered by the hospital or of support from relatives and friends during and after the donation stages? and 5) Does it matter how big or small the donation is in relation to these issues?

Managing troublesome legal issues
In addition to financial stress, more than 60% of Taiwanese donors’ family members were required to manage sophisticated issues related to the donors’ deaths, such as getting clear and comprehensive legal documentation from physicians for legal proceedings related to fatal accidents and insurance payments. Nevertheless, during the pre- and postdonation stages, there are few hospitals in Taiwan that have a lawyer available to help family members manage related legal issues for free or a low and reasonable charge.

Taiwanese often regard legal issues as troublesome and unlucky and try to avoid them. Few Taiwanese can afford to hire a lawyer to help settle legal conflicts, and it is very costly in terms of energy, time, and money. If the accident was fatal and those who caused the accident could not be identified, the donor families’ frustration often turned to anger. In this case, half of Taiwanese donors’ family members reported that they had not overcome their feelings of blame or hatred toward those who caused the accident. Furthermore, one-fourth of them felt desperate and even lost the will to survive.

Bereavement Caused by Sudden Loss of a Family Member
The sudden, unexpected death of a family member has been recognized as one of the most stressful life experiences (16, 50–52). Many families cannot fully accept their loved ones’ death during the first 6 to 18 months and are at high risk for poor adjustment (11, 53–58). During the first year, a complex set of emotional, cognitive, physiological, and behavioral reactions of bereavement occur (11, 54, 55, 59–62). Some of the bereavement responses reported by Taiwanese donor families were similar to experiences of nondonor families, including having an empty mind, being unable to concentrate, and experiencing emotional turmoil. Nevertheless, there were some differences in bereavement responses in families who donated the deceased person’s organs. For example, in addition to being unable to maintain daily activities or fulfill job requirements, half of them were further psychologically and cognitively troubled by the related legal issues and had not overcome their feelings of blame or hatred toward those who caused the accident.

On the other hand, 45% of the Taiwanese families reported positive impacts related to donation. Recently, surviving family members of Western cadaveric donors also reported having a sense of altruism (62). Taiwanese Buddhist families in this study also reported that the decision to donate would offer the donors a better afterlife. Hence, their sense of guilt and anxiety at the donor’s death was somewhat soothed by this belief. Other unique positive impacts of organ donation identified in this study include closer family relationships, increased appreciation of life, and changes in life goals. The influence of the positive aspects of organ donation on their families’ grieving reactions and the differences in bereavement between Taiwanese donor families and families who do not donate deserve further investigation with comparison groups.

Limitations
Despite the advances made by this research, there are inevitably limitations to generalization of the findings. These are related to the high rate of people who refused to participate (48%), the small sample size, and the lack of a comparison group. Also, because Buddhism is the most prevalent religious affiliation in Taiwan, the number of donor families who were Confucianism ideologists (N = 5, 22%) or Christians (N = 3, 14%) in this study was limited.

It is possible that donor families who did not participate in this project might have been more vulnerable than those who were able to articulate their feelings and perceptions in this project (62, 63). Their appraisals of the impact of organ donation and the expected help from the healthcare providers may have been different than the findings revealed in this project. In other words, the missing data attributable to the high percentage of families who were "too sad to talk" might have blunted the interpretability of such comparisons or indeed of any comparative conclusions.

Implications and Suggestions
There are several implications of the findings in this project. First, healthcare providers should be informed of the living experiences of Taiwanese cadaveric donors’ family members during the postdonation stage so that they can be more sensitive toward the family members and better meet this group’s needs. Second, coping strategies developed by the subjects in this study to manage their negative living experiences during the postdonation stage can be reported to the cadaveric donors’ family members during the pre- or postdonation transition to better prepare them for adaptation to the stress of loss. Third, health professionals need to pay more attention to the Taiwanese organ donor’s physical appearance to reduce his or her family members’ anxiety about disfiguration. This need might be a priority for family members who are Buddhists and Confucian ideologists. Last, physicians and nurses who work closely with Taiwanese cadaveric donors’ families should carefully examine the donor families’ experiences of distress from many different angles after the organ donation. A support group for Taiwanese donors family members can be fostered to encourage sharing and mutual support. In addition, an interdisciplinary health consulting team consisting of a physician, nurse, lawyer, social worker, and psychologist or psychiatric specialist is suggested to serve as a reference for the cadaveric donor’s family members (8, 48, 49). Transplant team members may then be able to identify family members who have difficulty in adapting, especially those who still harbor resentment toward those who caused the accident, exhibit depression, or are contemplating suicide.

Additional theoretical and empirical work is needed on several fronts: 1) empirically based comparisons concerning bereavement with or without organ donation in bereaved parents, spouses, and adult children; 2) the benefits and possible complications of a donor family members’ support group and an interdisciplinary health consulting team from the perspective of the donor family members; 3) the health needs of the bereaved donor family members who have abnormal depression or behaviors; and 4) debate about whether to offer rewards to Taiwanese donor family members and to honor their requests to contact the recipients from professional, ethical, and cultural perspectives (61–64).


   CONCLUSIONS
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
ACKNOWLEDGMENTS
 REFERENCES
 
With the worldwide shortage of organs for cadaveric transplantation, interest has increasingly focused on the psychosocial impacts of organ donation on the donors’ families (61). The impact of organ donation, including the positive and negative aspects, on Taiwanese cadaveric donor families during the first 6 month after donation wasexplored in depth in this study. In addition to bereavement, many Taiwanese cadaveric donor families worried about issues related to the donor’s afterlife and suffered because of other relatives’ challenges of the value of donation and the use of rewards and because of complex legal problems. With the knowledge of the four themes emerging from the data, health professionals can be more sensitive and empowered to better understand cadaveric donor’s families living experiences and their needs within their cultural, religious, and ethical frameworks. Meanwhile, because Chinese and Taiwanese people share many traditional cultural roots, the findings revealed in this project might be of value to both Eastern and Western health professionals who care for Chinese cadaveric donors and their families in different countries.


   ACKNOWLEDGMENTS
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
 ACKNOWLEDGMENTS
REFERENCES
 
The authors are grateful to the families who volunteered for this study for their candor about this painful topic. The authors are also grateful for the financial support provided by the National Science Council, Republic of China (NSC 87-2314-B-002-171).

Received for publication October 26, 1999.


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 INTRODUCTION
 METHODS
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 DISCUSSION
 CONCLUSIONS
 ACKNOWLEDGMENTS
 REFERENCES
 

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