LIVER TRANSPLANTATION 20:1365–1371, 2014
ORIGINAL ARTICLE
Effect of Social Support and Donation-Related Concerns on Ambivalence of Living Liver Donor Candidates Yun-Chieh Lai,1 Wei-Chen Lee,2 Yeong-Yuh Juang,3 Lee-Lan Yen,4 Li-Chueh Weng,5 and Hsueh Fen Chou5 1 A Plus Incorporated PRC Group, Taoyuan, Taiwan; 2Liver and Transplantation Surgery, Department of General Surgery, Chang-Gung Medical Foundation/Linkuo Medical Center, College of Medicine, Chang Gung University, Taoyuan, Taiwan; 3Department of Psychiatry, Chang Gung Memorial Hospital at Linkou and College of Medicine, Chang Gung University, Taoyuan, Taiwan; 4Institute of Health Policy and Management, College of Public Health, National Taiwan University, Taipei, Taiwan; and 5School of Nursing, College of Medicine, Chang Gung University, Taoyuan, Taiwan
Ambivalence in the decision-making process for living liver donors has the potential to result in their experiencing a negative mental status. To promote donor candidates’ well-being, it is important to study the factors related to ambivalence. Thus, the aim of this study was to explore the ambivalence of living liver donor candidates and to investigate the effect of social support and donation-related concerns on their ambivalence. A cross-sectional design was used. In total, 100 living liver donor candidates who underwent a preoperative evaluation between April and October 2009 were recruited for the study. Participants completed a self-administered questionnaire that contained items related to ambivalence, donation-related concerns, and social support. The mean score for ambivalence was 3.14 (standard deviation 5 1.8), and the median was 3. Only 7% of the study sample reported no ambivalence during the assessment stage. Ambivalence was positively correlated with donation-related concerns (physical concerns, r 5 0.39; psychosocial concerns, r 5 0.43; financial concerns, r 5 0.29) and negatively correlated with social support (r 5 20.16 to 20.33). Those with psychosocial concerns had significantly worse ambivalence (b 5 0.29, P 5 0.03), but social support mitigated ambivalence (b 5 20.34, P 5 0.01). When intimacy and social support were included in the model, the effect of psychosocial concerns on ambivalence became nonsignificant (b 5 0.24, P 5 0.08). Ambivalence is common among living liver donor candidates, but instrumental social support can mediate the negative effect of donation-related concerns. Recommendations include providing appropriate social support to minimize donation-related concerns and, thus, to reduce the ambivalence of living liver candidates. Liver Transpl 20:1365C 2014 AASLD. 1371, 2014. V Received March 19, 2014; accepted July 6, 2014. Living donor liver transplantation (LDLT) was developed to respond to the high demand for organs and the shortage of deceased organ donations.1,2 A remarkable increase in adult LDLT has been observed; currently, these donors account for approximately 10% of all liver transplants in the United
States. According to the literature, the percentage of LDLT, compared with those that used organs from the deceased, is 99.2% in Japan, 65.8% in Korea, and 36.5% in Taiwan.2 The most important principle of living organ transplantation is to protect the living donors from negative
Additional Supporting Information may be found in the online version of this article. Abbreviations: KMO, Kaiser-Meyer-Olkin; LDLT, living donor liver transplantation; SD, standard deviation. Potential conflict of interest: Nothing to report. Address reprint requests to Li-Chueh Weng, RN, PhD, Associate Professor School of Nursing, College of Medicine, Chang Gung University, 259 Wen-Hwa 1st Road, Kwei-Shan, Taoyuan, Taiwan. Telephone: 886-3-2118800, extension 3205; FAX: 886-3-2118800, extension 5326; E-mail: [email protected] DOI 10.1002/lt.23952 View this article online at wileyonlinelibrary.com. LIVER TRANSPLANTATION.DOI 10.1002/lt. Published on behalf of the American Association for the Study of Liver Diseases
C 2014 American Association for the Study of Liver Diseases. V
1366 LAI ET AL.
physical, psychological, and social impacts.3 One psychological impact is ambivalence about the donation.4,5 Ambivalence is an individual’s inconsistent or opposing perceptions about an object or person. On the one hand, the living liver donor believes that the donated liver part will save the life of a family member; on the other hand, the individual may experience conflict, fear, anger, or guilt.6 The prevalence of ambivalence among living organ donor has been shown to be approximately 5% to 15%.7-9 In addition, in 2% to 15% of living liver donor candidates, the ambivalence is so serious that the individual cannot become a donor.1,10 Candidates who worry about their inability to be a donor also may experience negative emotions. One study showed that actual donors had a better mental quality of life postoperatively than did potential donors.11 Therefore, an investigation of the factors, both causative and protective, involving ambivalence is warranted. During the assessment stage, candidates experience many concerns in the physical, psychosocial, and financial domains, such as the impact of donation on physical health status, length of unemployment, recovery of activities, pain, and financial status as well as outcomes for the recipient.8,12-14 In addition, candidates are concerned about whether their decision will cause conflict with other family members.4 The greater the concerns about donation, the stronger the ambivalence.13 Social support comprises emotional, informational, valuable, and instrumental support from a social support network, including family, friends, and health care professionals.15 Researchers have noted that potential donors who receive appropriate support are more confident about handling the stress engendered in the decision-making process7,12,16 and have lower levels of ambivalence.17 As noted, ambivalence is experienced as a swing between positive and negative emotions about living donation. Donation-related concerns may worsen the ambivalence, but social support may mitigate it. Thus, the purpose of this study was to examine the effect of social support and concerns on the ambivalence of Taiwanese living liver donor candidates. The hypothesis was that the donation-related concerns would worsen ambivalence, whereas social support would mitigate the effect of concerns on ambivalence.
PATIENTS AND METHODS Design and Study Sample This cross-sectional study was descriptive and correlational, and a structured questionnaire was used for data collection. The study site was the transplantation center of a medical center in northern Taiwan. Convenience sampling was used to recruit study participants. The inclusion criteria were a living liver donor candidate who was 18 years or older and was undergoing the first-step evaluation for living-relative liver donation between April and October 2009. A total of
LIVER TRANSPLANTATION, November 2014
108 candidates received a predonation examination during that period. Among these candidates, 6 refused to participate; thus, 102 living liver donor candidates (94%), who were related to 63 transplant recipients, agreed to participate in the study. During clinic visits, the researchers invited the candidates to participate. Participants were informed of the purpose of the research, and written consent was obtained. Participants were assured of their rights of refusal to participate or to withdraw from the study at any stage, and anonymity was assured. Participants’ names were removed from the data, and a numerical code was used in place of the names. This study was approved by our institutional research ethics committee (approval 98-0548B).
Measurement The Ambivalence subscale of the Donor Attitude Scale, developed by Simmons et al.,5 was used to measure donation-specific ambivalence. The Ambivalence subscale contains 7 items. The item “Did you know right away you would definitely do it, or did you think it over?” is answered on a 2-point (yes/no) scale. A response of 0 indicates that the decision was made instantly, and 1 indicates that the decision required thought. The other 6 items are answered on a 4-point Likert scale and are then recoded as 0 or 1. For items such as “How would you have felt if you had found out that you cannot donate for some reason? Do you think you would have felt very disappointed (1), a little disappointed (2), a little relieved (3), or very relieved (4) that you cannot donate?” If the answer is “very” or “a little disappointed,” then the score is 0; if the answer is “a little” or “very relieved,” then the score is 1, because the latter answer indicates that the ambivalence remains. The total score of the ambivalence scale was 7, with a higher score indicating a higher degree of ambivalence. The Chinese version of the Ambivalence subscale was developed through translation by Dr. Liao, and permission for its use was obtained.17 Validity and reliability were confirmed in previous studies.17 Cronbach’s a was 0.67 in this study, and this indicates acceptable internal consistency reliability. Donation-related concerns were measured by the Living Liver Donor Candidate Concerns Scale. The first author developed the scale based on her clinical experience, interviews with experts (1 transplant surgeon, 2 transplant nurse specialists, 1 psychiatrist, 1 transplant coordinator, and 1 nursing scholar with liver transplant expertise), and a review of the relevant literature. The scale contains 31 items and 3 domains: physical concerns (17 items), financial concerns (7 items), and psychosocial concerns (7 items). Items are answered on a 5-point Likert scale (1 5 strongly disagree to 5 5 strongly agree). Sample items are “I am concerned about the surgical wound and scar” and “I am concerned that I may lose my job after the surgery.” A complete list of items is presented in the online supporting information.
LIVER TRANSPLANTATION, Vol. 20, No. 11, 2014
The score obtained is divided by the possible total score for each aspect and then multiplied by 100. Thus, the transformed score range of each aspect is 0 to 100. A higher score indicates a higher level of concern. Construct validity was analyzed by exploratory factor analysis with principal component analysis, followed by varimax rotation.18 The results showed that “physical concerns” had 4 factors: resection surgery, wound and recovery, physical activity, and success of surgery; the Kaiser-Meyer-Olkin (KMO) value was 0.89, and the cumulative communality was 74.46%. “Financial concerns” had 2 factors: medical expenses and impact of employment; the KMO value was 0.76, and the cumulative communality was 76.34%. “Psychosocial concerns” had 2 factors: perception and care; the KMO value was 0.68, and the cumulative communality was 62.3%. The Bartlett’s test of sphericity was statistically significant for these 3 domains. These results indicate that the scale structure and content validity are acceptable. The factor loading of each item and the communality of each domain are shown in the supporting information. Cronbach’s a was as follows: physical concerns, 0.94; financial concerns, 0.87; and psychosocial concerns, 0.75. Social support was measured by a self-report scale with 16 items, answered on a 4-point Likert scale (with a range of 0-3) as a means to assess emotional support (as emotional interaction, making someone feel love and joy), valuable support (as providing feedback, affirming the support of one’s values), instrumental support (as providing practical assistance, eg, household help), and information support (as providing teaching, counseling, and information).19 The complete list of items is shown in the supporting information. A higher score indicates greater social support. Reliability and validity were tested and confirmed.19 Cronbach’s a was 0.94, which indicates acceptable internal consistency. We also collected basic demographic characteristics, such as age, education level, marital status, religion, and relationship to recipient. The self-reported level of intimacy (not very close to very close) between candidates and recipients also was collected.
LAI ET AL. 1367
TABLE 1. Social Background and Demographic Data of Living Liver Candidates (n 5 100) Variable Age (years)
Sex Marital status Education
Relationship to recipient
Religion Level of intimacy
Category
n (%)
Mean 6 SD
18-29 30-39 40-49 50 and above Male Female Single Married Primary High school College and above Spouse
42 (42) 40 (40) 11 (11) 7 (7) 48 (48) 52 (52) 56 (56) 44 (44) 9 (9) 33 (33) 58 (58)
32.8 6 9.1
Parent Child Sibling Aunt/uncle Nephew/ niece/cousin No Yes Very close
71 (71) 2 (2) 7 (7) 7 (7) 1 (1)
Close Fair Not close
34 (34) 15 (15) 2 (2)
12 (12)
45 (45) 55 (55) 49 (49)
Data were entered into Predictive Analytics Software Statistics (formerly SPSS), version 17.0 (IBM, New York, NY), for statistical analysis. For the purposes of this study, descriptive statistics were used to determine candidates’ characteristics, concerns, ambivalence, and social support. Pearson correlations and independent sample t tests were used to examine the bivariate correlation or difference between variables. Multiple linear regression analysis was used to examine the effects of social support and concern on ambivalence.18 The significance level was set at 0.05.
tion period of April to October 2009. Data from 2 respondents were excluded because of missing data that could not be obtained. Thus, the final sample comprised 100 participants related to 63 transplant recipients. Among the 63 transplant recipients, 36 recipients had only 1 donor candidate, 18 recipients had 2 donor candidates, 8 recipients had 3 donor candidates, and 1 recipient had 4 donor candidates. We used an independent-samples t test to compare the ambivalence between single candidates (n 5 36) and multiple candidates (n 5 64). The difference in ambivalence was not statistically significant (3.14 versus 3.27, t 5 20.33, P 5 0.74). This could, however, be due to the uneven sample size. The number of donor candidates a recipient has may influence the donation decision, and this area warrants further investigation. The mean age of the sample was 32.8 years (range 5 18-54 years), and females accounted for 52%. Most candidates had a college education (58%), and most were single (56%). Most were to donate their liver to a parent (71%) or spouse (12%). The self-reported level of intimacy between candidates and recipients was “very close” (49%) or “close” (34%; Table 1).
RESULTS
Ambivalence of Donor Candidates
In total, 102 adult-to-adult LDLT candidates responded to the questionnaire during the data collec-
The mean score for ambivalence was 3.14 [standard deviation (SD) 5 1.8], and the median was 3 with a
Statistical Analyses
1368 LAI ET AL.
LIVER TRANSPLANTATION, November 2014
TABLE 2. Ambivalence Scale and Percentage Who Endorsed Ambivalence for Each Item (n 5 100) Variable
Range
Mean 6 SD
Median
Ambivalence 0-7 3.14 6 1.8 3 Score 0 Score 1-3 Score 4-7 Ambivalence Scale Questions 1. I knew right away that I would donate. (% who had to think it over) 2. How hard was the decision to make? (% hard) 3. How disappointed would you be if you could not donate? (% relieved) 4. Do you have doubts about donating? (% yes) 5. Would you really want to donate even if someone else could? (% disagree) 6. Sometimes I feel unsure about donating. (% agree) 7. Sometimes I wish the recipient were getting a liver from someone else. (% agree)
n
Percentage
7 51 42
7 51 42 35 41 31 65 52 28 62
TABLE 3. Concerns, Social Support, and Ambivalence of Living Liver Candidates (n 5 100) Variables Social support
Concerns
Aspect/Domain
Range
Mean 6 SD
Median
Emotional Information Valuable Instrumental Total Physical Financial Psychosocial Total
0-12 0-12 0-12 0-12 0-48 20-100 20-100 20-89 23-97
8.5 6 2.7 5.9 6 3.9 7.2 6 3.0 9.1 6 3.1 30.3 6 10.5 55.9 6 20.1 59.5 6 22.8 46.3 6 17.4 54.5 6 17.9
9.0 6.0 7.0 10.0 30.5 52.9 62.8 45.7 53.8
possible range of 0 to 7. Only 7% of candidates reported that they did not have ambivalence. Specifically, 42% of candidates had a score for ambivalence in the range of 4 to 7, and 51% had a score in the range of 1 to 3 (Table 2). Furthermore, in terms of the ambivalence scale, 65% and 62% of participants had doubts about the donation and wished the recipients to get a liver from someone else, respectively. The percentages for each item for ambivalence are shown in Table 2.
Social Support and Donation-Related Concerns The mean total score for social support was 30.3 (SD 5 10.5), and the median was 30.5. The mean score for each aspect of social support was as follows: instrumental, 9.1 (SD 5 9.1); emotional, 8.5 (SD 5 2.7); valuable, 7.2 (SD 5 3.0); and information, 5.9 (SD 5 3.9; Table 3). The mean scores for 3 aspects of donation-related concerns were as follows: financial, 59.5; physical, 55.9; and psychosocial, 46.3 (Table 3). Based on the median score of each item, the data indicate that the greatest concern for the financial aspect was “the medical cost of the living liver surgery (including the donor and recipient)”; for the physical aspect, “the successful outcome of recipient (and donor) after the operation”; and, for the psychosocial aspect, “worry about not having enough resour-
ces to take care of the donor and recipient” and “significant others’ opposition.” Concerns about sexual issues after surgery, the surgical wound, employment issues, and a change in the relationship with recipients were cited less frequently.
Effect of Social Support and Concerns on Ambivalence First, we examined differences in ambivalence levels by demographic data, such as sex, marital status, education, and religion. The results showed that the candidates who reported “very close intimacy” with recipients had lower mean ambivalence (2.7 versus 3.6, t 5 2.56, P 5 0.01) than those who reported “not close intimacy.” Female living liver candidates had higher mean ambivalence scores than did male candidates (3.37 versus 2.90, t 5 1.285, P 5 0.20), but this difference was not statistically significant. Thus, intimacy level was further analyzed in the regression model. Pearson correlations showed that the ambivalence was positively correlated significantly with physical concerns (r 5 0.39, P < 0.001), financial concerns (r 5 0.29, P 5 0.003), and psychosocial concerns (r 5 0.43, P < 0.001). Ambivalence was significantly negatively correlated with emotional support (r 5 20.23, P 5 0.02), value support (r 5 20.25, P 5 0.01), and instrumental support (r 5 20.33, P 5 0.001) but not with information
LIVER TRANSPLANTATION, Vol. 20, No. 11, 2014
LAI ET AL. 1369
TABLE 4. Association of Social Support, Concerns, and Ambivalence of Living Liver Candidates (n 5 100) Variable Level of intimacy (1 5 very close) Financial concerns Physical concerns Psychosocial concerns Emotional support Information support Value support Instrumental support R2 Adjusted R2 F P
Model 1 b (P) 20.25* (0.012)
0.06 0.05 6.58 0.012*
Model 2 b (P) †
20.27 (0.003) 20.09 0.20 0.29* (0.03)
0.28 0.25 9.17 0.001†
Model 3 b (P)
Model 4 b (P)
20.21* (0.04)
20.23* (0.02) 20.01 0.23 0.24 (0.08) 0.13 20.02 20.10 20.25* (0.03) 0.35 0.29 5.98 0.001†
0.10 0.03 20.06 20.34* (0.01) 0.16 0.11 3.58 0.005†
*P < 0.05. † P < 0.01.
support (r 5 20.16, P 5 0.11; these results are not shown in Table 3). Multiple linear regression was used to analyze the effect of social support and donation-related concerns on the ambivalence of living liver donor candidates. The force-enter method was used. The multicollinearity diagnosis showed that the tolerance was 0.85 to 0.99, and the variance inflation factor was 1.0 to 1.2, which indicates that there was no significant collinearity among study variables. We first examined the effect of intimacy, as a control variable, on ambivalence (model 1), after which we added the 3 aspects of concern (model 2), social support (model 3), and finally the effect of all variables (model 4). Psychosocial concerns were related to significantly worse ambivalence (model 2, b 5 0.29, P 5 0.03). When intimacy and social support were entered into the model, the effect of psychosocial concerns on ambivalence became nonsignificant (model 4, b 5 0.24, P 5 0.08). This indicates that instrumental support can mediate the negative effect of concerns on ambivalence. Specifically, social support lowers ambivalence (model 3, b 5 20.34, P 5 0.01). The results of the full model showed that a “very close” level of intimacy (b 5 20.23, P 5 0.02) and higher instrumental social support are associated with a lower level of ambivalence (b 5 20.25, P 5 0.03; Table 4).
DISCUSSION This study provides an understanding of the ambivalence of Taiwanese living liver donor candidates. The ambivalence found in our study was higher than that in the research of Lee et al.,9 which included a sample for which 70% of participants were living kidney, rather than liver, donor candidates. Lee et al.’s results showed that living liver donors had greater emotional conflict during the decision-making stage than did living kidney donors. The ambivalence found in our study also was higher than that found by DiMartini
et al.8 This might have been due to the fact that 100% of our study participants planned to donate their liver to an adult relative, whereas in DiMartini’s study it was 74%. This is noteworthy because other researchers have claimed that the decision making for adultto-adult LDLT may be more complicated than that in pediatric LDLT, because the former may involve more concerns in the decision-making process.11,20 Cultural and national differences also should be considered in terms of the stricter moral obligations that are associated with more pressure on the donor in traditional collectivistic societies.11 More than 40% of this study’s participants reported a moderate level of ambivalence. The decision-making process with regard to living donation involves a great deal of thought, and the donor must think carefully about the possibility of negative outcomes.8 Notably, there was no reference score that indicated what would be considered an acceptable level of ambivalence. The donor’s ambivalence may simply indicate his or her process of deliberation. Researchers also have suggested that ambivalence should not be the sole reason to reject potential donors.21 Therefore, the nature and the context of ambivalence also warrant further investigation. One important concern was a significant other’s opposition.4,22 This implies that candidates must deal with conflict with their family during decision-making and may have less social support from others after the surgery. The concerns about the cost of surgery and medicine seen in this study are similar to those seen in previous studies.13,23 A major portion of the cost of transplantation surgery is reimbursed by the National Health Insurance program in Taiwan. Nevertheless, there are still some out-of-pocket costs such as advance immunity laboratory tests and treatment regimens that have to be considered. Furthermore, one-third of the study sample was of low socioeconomic status (family monthly income less than US $1600).
1370 LAI ET AL.
In addition, in comparison with the results of other studies,13,23 employment was not a significant concern in our study. This might be due to the fact that some candidates were still in school. Loss of gainful employment may decrease income and may influence the affordability of the transplant. According to data from prior living liver transplant patients from this medical center, approximately 65% of actual living liver donors returned to their job within 3 to 6 months. This may mean that employment is not a significant concern. In addition, the donor candidate might not become the actual donor, which means that loss of employment might not be an issue but that medical expenses can still be a concern. The concern about no one being able to take care of the recipient in the postoperative stage was an unexpected finding. This might have been due to the change in family structure to that of a double-income nuclear family. The regulations for living liver donation in Taiwan indicate that the relationship of donor and recipients should be within a fifth degree. Thus, the caregiver burden might be heavy, because the candidates (if they are the actual donors) and recipients would undergo surgery at the same time.24,25 Our results support the study hypothesis that social support can mediate the impact of donation-related concerns on ambivalence. The results of the multivariate analysis showed that instrumental social support had a protective effect on ambivalence. For living donor candidates, if others can provide instrumental support, such as sharing the workload and taking care of the recipient and donor during the surgical and recovery stages, this will reduce ambivalence about donation.1 In the multivariate analysis, emotional support did not have a significant effect; neither did information or valuable support. This result echoed that of our previous study in showing that the living liver donors might not need excessive information or emotional involvement from family or health care professionals.26 This finding also highlights that the clinicians in the transplantation team should note the kind of support that the candidate needs and should provide it in an appropriate manner. A higher level of intimacy between candidates and recipients was associated with lower levels of ambivalence. This result was similar to other findings showing that a close, intimate relationship is a protective factor for ambivalence; relationship bonds might enable the donor to feel confident about his or her decision.7,26,27 The effect of family relationships also was found to be more pronounced in Eastern cultures.11 It should be noted that an intimate relationship is more complex to measure than is a simple kin relationship between donors and recipients. In this study, we simply asked the candidate to rate the degree of intimacy with the recipient. Future research may have to use a well-developed, structured questionnaire to measure the concept of intimacy as a means to explore the impact of the relationship between family members on the living donor’s decision making.
LIVER TRANSPLANTATION, November 2014
Ambivalence about living organ donation appears to be different between men and women. Although the difference did not show statistical significance, we found that men had lower scores on ambivalence than did women. This may reflect the cultural considerations of Eastern society. A qualitative study conducted in Taiwan indicated that male living donors donate out of a sense of “heroism,” which makes their decision to donate straightforward.26 A study of Japanese donors indicated that young and single women are protected from donor candidacy because an “uninjured body is symbolic of maidenhood.”28 In addition, women, especially married women, express more concerns and resultant stress from their in-laws when the donation is for the woman’s family of origin. In most Eastern countries, people believe that a married woman should put the benefit of her in-laws first. Thus, women were more likely to be concerned about the impact on their family and on their social obligations as related to their various roles in their families.8 This study had some limitations. First, the generalization of results might have been compromised by our recruiting patients from only 1 study site. Second, this was a cross-sectional design, so there is a need to be cautious about the causal effects among variables. This limitation also suggests that some potential predictors, such as family interaction, decision-making ability, and psychological problems, warrant additional investigation.
ACKNOWLEDGMENT The authors acknowledge Mrs. Ssu-Min Cheng, Liver Transplantation Coordinator of the Organ Transplantation Institute, for her kind help with the data collection process.
REFERENCES 1. Erim Y, Beckmann M, Kroencke S, Schulz KH, Tagay S, Valentin-Gamazo C, et al. Sense of coherence and social support predict living liver donors’ emotional stress prior to living-donor liver transplantation. Clin Transplant 2008;22:273-280. 2. Tanaka K, Ogura Y, Kiuchi T, Inomata Y, Uemoto S, Furukawa H. Living donor liver transplantation: Eastern experiences. HPB (Oxford) 2004;6:88-94. 3. Erim Y, Beckmann M, Valentin-Gamazo C, Malago M, Frilling A, Schlaak J, et al. Selection of donors for adult living-donor liver donation: results of the assessment of the first 205 donor candidates. Psychosomatics 2008;49: 143-151. 4. Hayashi A, Noma S, Uehara M, Kuwabara H, Tanaka S, Furuno Y, Hayashi T. Relevant factors to psychological status of donors before living-related liver transplantation. Transplantation 2007;84:1255-1261. 5. Simmons RG, Marine SK, Simmons RL. Gift of Life: The Effect of Organ Transplantation on Individual, Family, and Societal Dynamics. New Brunswick, NJ: Transaction Publishers; 1987. 6. Steele CI, Altholz JA. Donor ambivalence: a key issue in families of children with end-stage renal disease. Soc Work Health Care 1987;13:47-57.
LIVER TRANSPLANTATION, Vol. 20, No. 11, 2014
7. Walter M, Papachristou C, Pascher A, Danzer G, Neuhaus P, Klapp BF, Frommer J. Impaired psychosocial outcome of donors after living donor liver transplantation: a qualitative case study. Clin Transplant 2006;20: 410-415. 8. DiMartini A, Cruz RJ Jr, Dew MA, Fitzgerald MG, Chiappetta L, Myaskovsky L, DeVera ME. Motives and decision making of potential living liver donors: comparisons between gender, relationships and ambivalence. Am J Transplant 2012;12:136-151. 9. Lee SH, Jeong JS, Ha HS, No MJ, Hong JJ, Kwon JS, et al. Decision-related factors and attitudes toward donation in living related liver transplantation: ten-year experience. Transplant Proc 2005;37:1081-1084. 10. Ho MC, Lee PH. Liver transplantation. Formosan J Med 2000;4:286-293. 11. Schulz KH, Kroencke S. To donate or not to donate: decision making and psychosocial determinants in living liver donation. Transplantation 2011;92:846-847. 12. Gordon EJ, Daud A, Caicedo JC, Cameron KA, Jay C, Fryer J, et al. Informed consent and decision making about adult to adult living donor liver transplantation: a systemic review of empirical research. Transplantation 2011;92:1285-1296. 13. Boulware LE, Ratner LE, Sosa JA, Tu AH, Nagula S, Simpkins CE, et al. The general public’s concerns about clinical risk in live kidney donation. Am J Transplant 2002;2:186-193. 14. Switzer GE, Dew MA, Harrington DJ, Crowley-Matoka M, Myaskovsky L, Abress L, Confer DL. Ethnic differences in donation-related characteristics among potential hematopoietic stem cell donors. Transplantation 2005; 80:890-896. 15. Cohen S, Syme SL. Social Support and Health. San Francisco, CA: Academic Press; 1985. 16. Phillips KM, Burker EJ, White HC. The roles of social support and psychological distress in lung transplant candidacy. Prog Transplant 2011;21:200-206.
LAI ET AL. 1371
17. Liao SC, Lee MB, Lee YJ, Wu CH, Tseng MC. Association between quality of informed consent and pre-operation ambivalence. J Med Educ 2005;9:80-90. 18. Hair JF, Anderson RE, Tatham RL, Babin BJ. Multivariate Data Analysis 5th. Upper Saddle River, NJ: PrenticeHall; 1998. 19. Wang SM, Ku NP, Lin HT, Wei J. The relationships of symptom distress, social support and self-care behaviors in heart transplant recipients. J Nurs Res 1998;6:4-18. 20. Muto K. Organ transplantation as a family issue: living liver donors in Japan. Int J Jpn Soc 2010;19:35-48. 21. Simpson MA, Kendrick J, Verbesey JE, Morin DS, Dew MA, Trabucco A, et al. Ambivalence in living liver donors. Liver Transpl 2011;17:1226-1233. 22. Zhang L, Li Y, Zhou J, Miao X, Wang G, Li D, et al. Knowledge and willingness toward living organ donation: a survey of three universities in Changsha, Hunan Province, China. Transplant Proc 2007;39:1303-1309. 23. Verbesey JE, Simpson MA, Pomposelli JJ, Richman E, Bracken AM, Garrigan K, et al. Living donor adult liver transplantation: a longitudinal study of the donor’s quality of life. Am J Transplant 2005;5:2770-2777. 24. Concejero AM, Chen CL. Ethical perspectives on living donor organ transplantation in Asia. Liver Transpl 2009; 15:1658-1661. 25. Weng LC, Huang HL, Wang YW, Chang CL, Tsai CH, Lee WC. Primary Caregiver stress in caring for a livingrelated liver transplantation recipient during the postoperative stage. J Adv Nurs 2011;67:1749-1757. 26. Weng LC, Huang HL, Wang YW, Chang CL, Tsai CH, Lee WC. The coping experience of Taiwanese male donors in living donor liver transplantation. Nurs Res 2012;61:133-139. 27. Yi M. Decision-making process for living kidney donors. J Nurs Scholarship 2003;35:61-66. 28. Fujita M, Akabayashi A, Slingsby BT, Kosugi S, Fujimoto Y, Tanaka K. A model of donor’s decision-making in adultto-adult living donor liver transplantation in Japan: having no choice. Liver Transpl 2006;12:768-774.
ORIGINAL ARTICLE
Effect of Social Support and Donation-Related Concerns on Ambivalence of Living Liver Donor Candidates Yun-Chieh Lai,1 Wei-Chen Lee,2 Yeong-Yuh Juang,3 Lee-Lan Yen,4 Li-Chueh Weng,5 and Hsueh Fen Chou5 1 A Plus Incorporated PRC Group, Taoyuan, Taiwan; 2Liver and Transplantation Surgery, Department of General Surgery, Chang-Gung Medical Foundation/Linkuo Medical Center, College of Medicine, Chang Gung University, Taoyuan, Taiwan; 3Department of Psychiatry, Chang Gung Memorial Hospital at Linkou and College of Medicine, Chang Gung University, Taoyuan, Taiwan; 4Institute of Health Policy and Management, College of Public Health, National Taiwan University, Taipei, Taiwan; and 5School of Nursing, College of Medicine, Chang Gung University, Taoyuan, Taiwan
Ambivalence in the decision-making process for living liver donors has the potential to result in their experiencing a negative mental status. To promote donor candidates’ well-being, it is important to study the factors related to ambivalence. Thus, the aim of this study was to explore the ambivalence of living liver donor candidates and to investigate the effect of social support and donation-related concerns on their ambivalence. A cross-sectional design was used. In total, 100 living liver donor candidates who underwent a preoperative evaluation between April and October 2009 were recruited for the study. Participants completed a self-administered questionnaire that contained items related to ambivalence, donation-related concerns, and social support. The mean score for ambivalence was 3.14 (standard deviation 5 1.8), and the median was 3. Only 7% of the study sample reported no ambivalence during the assessment stage. Ambivalence was positively correlated with donation-related concerns (physical concerns, r 5 0.39; psychosocial concerns, r 5 0.43; financial concerns, r 5 0.29) and negatively correlated with social support (r 5 20.16 to 20.33). Those with psychosocial concerns had significantly worse ambivalence (b 5 0.29, P 5 0.03), but social support mitigated ambivalence (b 5 20.34, P 5 0.01). When intimacy and social support were included in the model, the effect of psychosocial concerns on ambivalence became nonsignificant (b 5 0.24, P 5 0.08). Ambivalence is common among living liver donor candidates, but instrumental social support can mediate the negative effect of donation-related concerns. Recommendations include providing appropriate social support to minimize donation-related concerns and, thus, to reduce the ambivalence of living liver candidates. Liver Transpl 20:1365C 2014 AASLD. 1371, 2014. V Received March 19, 2014; accepted July 6, 2014. Living donor liver transplantation (LDLT) was developed to respond to the high demand for organs and the shortage of deceased organ donations.1,2 A remarkable increase in adult LDLT has been observed; currently, these donors account for approximately 10% of all liver transplants in the United
States. According to the literature, the percentage of LDLT, compared with those that used organs from the deceased, is 99.2% in Japan, 65.8% in Korea, and 36.5% in Taiwan.2 The most important principle of living organ transplantation is to protect the living donors from negative
Additional Supporting Information may be found in the online version of this article. Abbreviations: KMO, Kaiser-Meyer-Olkin; LDLT, living donor liver transplantation; SD, standard deviation. Potential conflict of interest: Nothing to report. Address reprint requests to Li-Chueh Weng, RN, PhD, Associate Professor School of Nursing, College of Medicine, Chang Gung University, 259 Wen-Hwa 1st Road, Kwei-Shan, Taoyuan, Taiwan. Telephone: 886-3-2118800, extension 3205; FAX: 886-3-2118800, extension 5326; E-mail: [email protected] DOI 10.1002/lt.23952 View this article online at wileyonlinelibrary.com. LIVER TRANSPLANTATION.DOI 10.1002/lt. Published on behalf of the American Association for the Study of Liver Diseases
C 2014 American Association for the Study of Liver Diseases. V
1366 LAI ET AL.
physical, psychological, and social impacts.3 One psychological impact is ambivalence about the donation.4,5 Ambivalence is an individual’s inconsistent or opposing perceptions about an object or person. On the one hand, the living liver donor believes that the donated liver part will save the life of a family member; on the other hand, the individual may experience conflict, fear, anger, or guilt.6 The prevalence of ambivalence among living organ donor has been shown to be approximately 5% to 15%.7-9 In addition, in 2% to 15% of living liver donor candidates, the ambivalence is so serious that the individual cannot become a donor.1,10 Candidates who worry about their inability to be a donor also may experience negative emotions. One study showed that actual donors had a better mental quality of life postoperatively than did potential donors.11 Therefore, an investigation of the factors, both causative and protective, involving ambivalence is warranted. During the assessment stage, candidates experience many concerns in the physical, psychosocial, and financial domains, such as the impact of donation on physical health status, length of unemployment, recovery of activities, pain, and financial status as well as outcomes for the recipient.8,12-14 In addition, candidates are concerned about whether their decision will cause conflict with other family members.4 The greater the concerns about donation, the stronger the ambivalence.13 Social support comprises emotional, informational, valuable, and instrumental support from a social support network, including family, friends, and health care professionals.15 Researchers have noted that potential donors who receive appropriate support are more confident about handling the stress engendered in the decision-making process7,12,16 and have lower levels of ambivalence.17 As noted, ambivalence is experienced as a swing between positive and negative emotions about living donation. Donation-related concerns may worsen the ambivalence, but social support may mitigate it. Thus, the purpose of this study was to examine the effect of social support and concerns on the ambivalence of Taiwanese living liver donor candidates. The hypothesis was that the donation-related concerns would worsen ambivalence, whereas social support would mitigate the effect of concerns on ambivalence.
PATIENTS AND METHODS Design and Study Sample This cross-sectional study was descriptive and correlational, and a structured questionnaire was used for data collection. The study site was the transplantation center of a medical center in northern Taiwan. Convenience sampling was used to recruit study participants. The inclusion criteria were a living liver donor candidate who was 18 years or older and was undergoing the first-step evaluation for living-relative liver donation between April and October 2009. A total of
LIVER TRANSPLANTATION, November 2014
108 candidates received a predonation examination during that period. Among these candidates, 6 refused to participate; thus, 102 living liver donor candidates (94%), who were related to 63 transplant recipients, agreed to participate in the study. During clinic visits, the researchers invited the candidates to participate. Participants were informed of the purpose of the research, and written consent was obtained. Participants were assured of their rights of refusal to participate or to withdraw from the study at any stage, and anonymity was assured. Participants’ names were removed from the data, and a numerical code was used in place of the names. This study was approved by our institutional research ethics committee (approval 98-0548B).
Measurement The Ambivalence subscale of the Donor Attitude Scale, developed by Simmons et al.,5 was used to measure donation-specific ambivalence. The Ambivalence subscale contains 7 items. The item “Did you know right away you would definitely do it, or did you think it over?” is answered on a 2-point (yes/no) scale. A response of 0 indicates that the decision was made instantly, and 1 indicates that the decision required thought. The other 6 items are answered on a 4-point Likert scale and are then recoded as 0 or 1. For items such as “How would you have felt if you had found out that you cannot donate for some reason? Do you think you would have felt very disappointed (1), a little disappointed (2), a little relieved (3), or very relieved (4) that you cannot donate?” If the answer is “very” or “a little disappointed,” then the score is 0; if the answer is “a little” or “very relieved,” then the score is 1, because the latter answer indicates that the ambivalence remains. The total score of the ambivalence scale was 7, with a higher score indicating a higher degree of ambivalence. The Chinese version of the Ambivalence subscale was developed through translation by Dr. Liao, and permission for its use was obtained.17 Validity and reliability were confirmed in previous studies.17 Cronbach’s a was 0.67 in this study, and this indicates acceptable internal consistency reliability. Donation-related concerns were measured by the Living Liver Donor Candidate Concerns Scale. The first author developed the scale based on her clinical experience, interviews with experts (1 transplant surgeon, 2 transplant nurse specialists, 1 psychiatrist, 1 transplant coordinator, and 1 nursing scholar with liver transplant expertise), and a review of the relevant literature. The scale contains 31 items and 3 domains: physical concerns (17 items), financial concerns (7 items), and psychosocial concerns (7 items). Items are answered on a 5-point Likert scale (1 5 strongly disagree to 5 5 strongly agree). Sample items are “I am concerned about the surgical wound and scar” and “I am concerned that I may lose my job after the surgery.” A complete list of items is presented in the online supporting information.
LIVER TRANSPLANTATION, Vol. 20, No. 11, 2014
The score obtained is divided by the possible total score for each aspect and then multiplied by 100. Thus, the transformed score range of each aspect is 0 to 100. A higher score indicates a higher level of concern. Construct validity was analyzed by exploratory factor analysis with principal component analysis, followed by varimax rotation.18 The results showed that “physical concerns” had 4 factors: resection surgery, wound and recovery, physical activity, and success of surgery; the Kaiser-Meyer-Olkin (KMO) value was 0.89, and the cumulative communality was 74.46%. “Financial concerns” had 2 factors: medical expenses and impact of employment; the KMO value was 0.76, and the cumulative communality was 76.34%. “Psychosocial concerns” had 2 factors: perception and care; the KMO value was 0.68, and the cumulative communality was 62.3%. The Bartlett’s test of sphericity was statistically significant for these 3 domains. These results indicate that the scale structure and content validity are acceptable. The factor loading of each item and the communality of each domain are shown in the supporting information. Cronbach’s a was as follows: physical concerns, 0.94; financial concerns, 0.87; and psychosocial concerns, 0.75. Social support was measured by a self-report scale with 16 items, answered on a 4-point Likert scale (with a range of 0-3) as a means to assess emotional support (as emotional interaction, making someone feel love and joy), valuable support (as providing feedback, affirming the support of one’s values), instrumental support (as providing practical assistance, eg, household help), and information support (as providing teaching, counseling, and information).19 The complete list of items is shown in the supporting information. A higher score indicates greater social support. Reliability and validity were tested and confirmed.19 Cronbach’s a was 0.94, which indicates acceptable internal consistency. We also collected basic demographic characteristics, such as age, education level, marital status, religion, and relationship to recipient. The self-reported level of intimacy (not very close to very close) between candidates and recipients also was collected.
LAI ET AL. 1367
TABLE 1. Social Background and Demographic Data of Living Liver Candidates (n 5 100) Variable Age (years)
Sex Marital status Education
Relationship to recipient
Religion Level of intimacy
Category
n (%)
Mean 6 SD
18-29 30-39 40-49 50 and above Male Female Single Married Primary High school College and above Spouse
42 (42) 40 (40) 11 (11) 7 (7) 48 (48) 52 (52) 56 (56) 44 (44) 9 (9) 33 (33) 58 (58)
32.8 6 9.1
Parent Child Sibling Aunt/uncle Nephew/ niece/cousin No Yes Very close
71 (71) 2 (2) 7 (7) 7 (7) 1 (1)
Close Fair Not close
34 (34) 15 (15) 2 (2)
12 (12)
45 (45) 55 (55) 49 (49)
Data were entered into Predictive Analytics Software Statistics (formerly SPSS), version 17.0 (IBM, New York, NY), for statistical analysis. For the purposes of this study, descriptive statistics were used to determine candidates’ characteristics, concerns, ambivalence, and social support. Pearson correlations and independent sample t tests were used to examine the bivariate correlation or difference between variables. Multiple linear regression analysis was used to examine the effects of social support and concern on ambivalence.18 The significance level was set at 0.05.
tion period of April to October 2009. Data from 2 respondents were excluded because of missing data that could not be obtained. Thus, the final sample comprised 100 participants related to 63 transplant recipients. Among the 63 transplant recipients, 36 recipients had only 1 donor candidate, 18 recipients had 2 donor candidates, 8 recipients had 3 donor candidates, and 1 recipient had 4 donor candidates. We used an independent-samples t test to compare the ambivalence between single candidates (n 5 36) and multiple candidates (n 5 64). The difference in ambivalence was not statistically significant (3.14 versus 3.27, t 5 20.33, P 5 0.74). This could, however, be due to the uneven sample size. The number of donor candidates a recipient has may influence the donation decision, and this area warrants further investigation. The mean age of the sample was 32.8 years (range 5 18-54 years), and females accounted for 52%. Most candidates had a college education (58%), and most were single (56%). Most were to donate their liver to a parent (71%) or spouse (12%). The self-reported level of intimacy between candidates and recipients was “very close” (49%) or “close” (34%; Table 1).
RESULTS
Ambivalence of Donor Candidates
In total, 102 adult-to-adult LDLT candidates responded to the questionnaire during the data collec-
The mean score for ambivalence was 3.14 [standard deviation (SD) 5 1.8], and the median was 3 with a
Statistical Analyses
1368 LAI ET AL.
LIVER TRANSPLANTATION, November 2014
TABLE 2. Ambivalence Scale and Percentage Who Endorsed Ambivalence for Each Item (n 5 100) Variable
Range
Mean 6 SD
Median
Ambivalence 0-7 3.14 6 1.8 3 Score 0 Score 1-3 Score 4-7 Ambivalence Scale Questions 1. I knew right away that I would donate. (% who had to think it over) 2. How hard was the decision to make? (% hard) 3. How disappointed would you be if you could not donate? (% relieved) 4. Do you have doubts about donating? (% yes) 5. Would you really want to donate even if someone else could? (% disagree) 6. Sometimes I feel unsure about donating. (% agree) 7. Sometimes I wish the recipient were getting a liver from someone else. (% agree)
n
Percentage
7 51 42
7 51 42 35 41 31 65 52 28 62
TABLE 3. Concerns, Social Support, and Ambivalence of Living Liver Candidates (n 5 100) Variables Social support
Concerns
Aspect/Domain
Range
Mean 6 SD
Median
Emotional Information Valuable Instrumental Total Physical Financial Psychosocial Total
0-12 0-12 0-12 0-12 0-48 20-100 20-100 20-89 23-97
8.5 6 2.7 5.9 6 3.9 7.2 6 3.0 9.1 6 3.1 30.3 6 10.5 55.9 6 20.1 59.5 6 22.8 46.3 6 17.4 54.5 6 17.9
9.0 6.0 7.0 10.0 30.5 52.9 62.8 45.7 53.8
possible range of 0 to 7. Only 7% of candidates reported that they did not have ambivalence. Specifically, 42% of candidates had a score for ambivalence in the range of 4 to 7, and 51% had a score in the range of 1 to 3 (Table 2). Furthermore, in terms of the ambivalence scale, 65% and 62% of participants had doubts about the donation and wished the recipients to get a liver from someone else, respectively. The percentages for each item for ambivalence are shown in Table 2.
Social Support and Donation-Related Concerns The mean total score for social support was 30.3 (SD 5 10.5), and the median was 30.5. The mean score for each aspect of social support was as follows: instrumental, 9.1 (SD 5 9.1); emotional, 8.5 (SD 5 2.7); valuable, 7.2 (SD 5 3.0); and information, 5.9 (SD 5 3.9; Table 3). The mean scores for 3 aspects of donation-related concerns were as follows: financial, 59.5; physical, 55.9; and psychosocial, 46.3 (Table 3). Based on the median score of each item, the data indicate that the greatest concern for the financial aspect was “the medical cost of the living liver surgery (including the donor and recipient)”; for the physical aspect, “the successful outcome of recipient (and donor) after the operation”; and, for the psychosocial aspect, “worry about not having enough resour-
ces to take care of the donor and recipient” and “significant others’ opposition.” Concerns about sexual issues after surgery, the surgical wound, employment issues, and a change in the relationship with recipients were cited less frequently.
Effect of Social Support and Concerns on Ambivalence First, we examined differences in ambivalence levels by demographic data, such as sex, marital status, education, and religion. The results showed that the candidates who reported “very close intimacy” with recipients had lower mean ambivalence (2.7 versus 3.6, t 5 2.56, P 5 0.01) than those who reported “not close intimacy.” Female living liver candidates had higher mean ambivalence scores than did male candidates (3.37 versus 2.90, t 5 1.285, P 5 0.20), but this difference was not statistically significant. Thus, intimacy level was further analyzed in the regression model. Pearson correlations showed that the ambivalence was positively correlated significantly with physical concerns (r 5 0.39, P < 0.001), financial concerns (r 5 0.29, P 5 0.003), and psychosocial concerns (r 5 0.43, P < 0.001). Ambivalence was significantly negatively correlated with emotional support (r 5 20.23, P 5 0.02), value support (r 5 20.25, P 5 0.01), and instrumental support (r 5 20.33, P 5 0.001) but not with information
LIVER TRANSPLANTATION, Vol. 20, No. 11, 2014
LAI ET AL. 1369
TABLE 4. Association of Social Support, Concerns, and Ambivalence of Living Liver Candidates (n 5 100) Variable Level of intimacy (1 5 very close) Financial concerns Physical concerns Psychosocial concerns Emotional support Information support Value support Instrumental support R2 Adjusted R2 F P
Model 1 b (P) 20.25* (0.012)
0.06 0.05 6.58 0.012*
Model 2 b (P) †
20.27 (0.003) 20.09 0.20 0.29* (0.03)
0.28 0.25 9.17 0.001†
Model 3 b (P)
Model 4 b (P)
20.21* (0.04)
20.23* (0.02) 20.01 0.23 0.24 (0.08) 0.13 20.02 20.10 20.25* (0.03) 0.35 0.29 5.98 0.001†
0.10 0.03 20.06 20.34* (0.01) 0.16 0.11 3.58 0.005†
*P < 0.05. † P < 0.01.
support (r 5 20.16, P 5 0.11; these results are not shown in Table 3). Multiple linear regression was used to analyze the effect of social support and donation-related concerns on the ambivalence of living liver donor candidates. The force-enter method was used. The multicollinearity diagnosis showed that the tolerance was 0.85 to 0.99, and the variance inflation factor was 1.0 to 1.2, which indicates that there was no significant collinearity among study variables. We first examined the effect of intimacy, as a control variable, on ambivalence (model 1), after which we added the 3 aspects of concern (model 2), social support (model 3), and finally the effect of all variables (model 4). Psychosocial concerns were related to significantly worse ambivalence (model 2, b 5 0.29, P 5 0.03). When intimacy and social support were entered into the model, the effect of psychosocial concerns on ambivalence became nonsignificant (model 4, b 5 0.24, P 5 0.08). This indicates that instrumental support can mediate the negative effect of concerns on ambivalence. Specifically, social support lowers ambivalence (model 3, b 5 20.34, P 5 0.01). The results of the full model showed that a “very close” level of intimacy (b 5 20.23, P 5 0.02) and higher instrumental social support are associated with a lower level of ambivalence (b 5 20.25, P 5 0.03; Table 4).
DISCUSSION This study provides an understanding of the ambivalence of Taiwanese living liver donor candidates. The ambivalence found in our study was higher than that in the research of Lee et al.,9 which included a sample for which 70% of participants were living kidney, rather than liver, donor candidates. Lee et al.’s results showed that living liver donors had greater emotional conflict during the decision-making stage than did living kidney donors. The ambivalence found in our study also was higher than that found by DiMartini
et al.8 This might have been due to the fact that 100% of our study participants planned to donate their liver to an adult relative, whereas in DiMartini’s study it was 74%. This is noteworthy because other researchers have claimed that the decision making for adultto-adult LDLT may be more complicated than that in pediatric LDLT, because the former may involve more concerns in the decision-making process.11,20 Cultural and national differences also should be considered in terms of the stricter moral obligations that are associated with more pressure on the donor in traditional collectivistic societies.11 More than 40% of this study’s participants reported a moderate level of ambivalence. The decision-making process with regard to living donation involves a great deal of thought, and the donor must think carefully about the possibility of negative outcomes.8 Notably, there was no reference score that indicated what would be considered an acceptable level of ambivalence. The donor’s ambivalence may simply indicate his or her process of deliberation. Researchers also have suggested that ambivalence should not be the sole reason to reject potential donors.21 Therefore, the nature and the context of ambivalence also warrant further investigation. One important concern was a significant other’s opposition.4,22 This implies that candidates must deal with conflict with their family during decision-making and may have less social support from others after the surgery. The concerns about the cost of surgery and medicine seen in this study are similar to those seen in previous studies.13,23 A major portion of the cost of transplantation surgery is reimbursed by the National Health Insurance program in Taiwan. Nevertheless, there are still some out-of-pocket costs such as advance immunity laboratory tests and treatment regimens that have to be considered. Furthermore, one-third of the study sample was of low socioeconomic status (family monthly income less than US $1600).
1370 LAI ET AL.
In addition, in comparison with the results of other studies,13,23 employment was not a significant concern in our study. This might be due to the fact that some candidates were still in school. Loss of gainful employment may decrease income and may influence the affordability of the transplant. According to data from prior living liver transplant patients from this medical center, approximately 65% of actual living liver donors returned to their job within 3 to 6 months. This may mean that employment is not a significant concern. In addition, the donor candidate might not become the actual donor, which means that loss of employment might not be an issue but that medical expenses can still be a concern. The concern about no one being able to take care of the recipient in the postoperative stage was an unexpected finding. This might have been due to the change in family structure to that of a double-income nuclear family. The regulations for living liver donation in Taiwan indicate that the relationship of donor and recipients should be within a fifth degree. Thus, the caregiver burden might be heavy, because the candidates (if they are the actual donors) and recipients would undergo surgery at the same time.24,25 Our results support the study hypothesis that social support can mediate the impact of donation-related concerns on ambivalence. The results of the multivariate analysis showed that instrumental social support had a protective effect on ambivalence. For living donor candidates, if others can provide instrumental support, such as sharing the workload and taking care of the recipient and donor during the surgical and recovery stages, this will reduce ambivalence about donation.1 In the multivariate analysis, emotional support did not have a significant effect; neither did information or valuable support. This result echoed that of our previous study in showing that the living liver donors might not need excessive information or emotional involvement from family or health care professionals.26 This finding also highlights that the clinicians in the transplantation team should note the kind of support that the candidate needs and should provide it in an appropriate manner. A higher level of intimacy between candidates and recipients was associated with lower levels of ambivalence. This result was similar to other findings showing that a close, intimate relationship is a protective factor for ambivalence; relationship bonds might enable the donor to feel confident about his or her decision.7,26,27 The effect of family relationships also was found to be more pronounced in Eastern cultures.11 It should be noted that an intimate relationship is more complex to measure than is a simple kin relationship between donors and recipients. In this study, we simply asked the candidate to rate the degree of intimacy with the recipient. Future research may have to use a well-developed, structured questionnaire to measure the concept of intimacy as a means to explore the impact of the relationship between family members on the living donor’s decision making.
LIVER TRANSPLANTATION, November 2014
Ambivalence about living organ donation appears to be different between men and women. Although the difference did not show statistical significance, we found that men had lower scores on ambivalence than did women. This may reflect the cultural considerations of Eastern society. A qualitative study conducted in Taiwan indicated that male living donors donate out of a sense of “heroism,” which makes their decision to donate straightforward.26 A study of Japanese donors indicated that young and single women are protected from donor candidacy because an “uninjured body is symbolic of maidenhood.”28 In addition, women, especially married women, express more concerns and resultant stress from their in-laws when the donation is for the woman’s family of origin. In most Eastern countries, people believe that a married woman should put the benefit of her in-laws first. Thus, women were more likely to be concerned about the impact on their family and on their social obligations as related to their various roles in their families.8 This study had some limitations. First, the generalization of results might have been compromised by our recruiting patients from only 1 study site. Second, this was a cross-sectional design, so there is a need to be cautious about the causal effects among variables. This limitation also suggests that some potential predictors, such as family interaction, decision-making ability, and psychological problems, warrant additional investigation.
ACKNOWLEDGMENT The authors acknowledge Mrs. Ssu-Min Cheng, Liver Transplantation Coordinator of the Organ Transplantation Institute, for her kind help with the data collection process.
REFERENCES 1. Erim Y, Beckmann M, Kroencke S, Schulz KH, Tagay S, Valentin-Gamazo C, et al. Sense of coherence and social support predict living liver donors’ emotional stress prior to living-donor liver transplantation. Clin Transplant 2008;22:273-280. 2. Tanaka K, Ogura Y, Kiuchi T, Inomata Y, Uemoto S, Furukawa H. Living donor liver transplantation: Eastern experiences. HPB (Oxford) 2004;6:88-94. 3. Erim Y, Beckmann M, Valentin-Gamazo C, Malago M, Frilling A, Schlaak J, et al. Selection of donors for adult living-donor liver donation: results of the assessment of the first 205 donor candidates. Psychosomatics 2008;49: 143-151. 4. Hayashi A, Noma S, Uehara M, Kuwabara H, Tanaka S, Furuno Y, Hayashi T. Relevant factors to psychological status of donors before living-related liver transplantation. Transplantation 2007;84:1255-1261. 5. Simmons RG, Marine SK, Simmons RL. Gift of Life: The Effect of Organ Transplantation on Individual, Family, and Societal Dynamics. New Brunswick, NJ: Transaction Publishers; 1987. 6. Steele CI, Altholz JA. Donor ambivalence: a key issue in families of children with end-stage renal disease. Soc Work Health Care 1987;13:47-57.
LIVER TRANSPLANTATION, Vol. 20, No. 11, 2014
7. Walter M, Papachristou C, Pascher A, Danzer G, Neuhaus P, Klapp BF, Frommer J. Impaired psychosocial outcome of donors after living donor liver transplantation: a qualitative case study. Clin Transplant 2006;20: 410-415. 8. DiMartini A, Cruz RJ Jr, Dew MA, Fitzgerald MG, Chiappetta L, Myaskovsky L, DeVera ME. Motives and decision making of potential living liver donors: comparisons between gender, relationships and ambivalence. Am J Transplant 2012;12:136-151. 9. Lee SH, Jeong JS, Ha HS, No MJ, Hong JJ, Kwon JS, et al. Decision-related factors and attitudes toward donation in living related liver transplantation: ten-year experience. Transplant Proc 2005;37:1081-1084. 10. Ho MC, Lee PH. Liver transplantation. Formosan J Med 2000;4:286-293. 11. Schulz KH, Kroencke S. To donate or not to donate: decision making and psychosocial determinants in living liver donation. Transplantation 2011;92:846-847. 12. Gordon EJ, Daud A, Caicedo JC, Cameron KA, Jay C, Fryer J, et al. Informed consent and decision making about adult to adult living donor liver transplantation: a systemic review of empirical research. Transplantation 2011;92:1285-1296. 13. Boulware LE, Ratner LE, Sosa JA, Tu AH, Nagula S, Simpkins CE, et al. The general public’s concerns about clinical risk in live kidney donation. Am J Transplant 2002;2:186-193. 14. Switzer GE, Dew MA, Harrington DJ, Crowley-Matoka M, Myaskovsky L, Abress L, Confer DL. Ethnic differences in donation-related characteristics among potential hematopoietic stem cell donors. Transplantation 2005; 80:890-896. 15. Cohen S, Syme SL. Social Support and Health. San Francisco, CA: Academic Press; 1985. 16. Phillips KM, Burker EJ, White HC. The roles of social support and psychological distress in lung transplant candidacy. Prog Transplant 2011;21:200-206.
LAI ET AL. 1371
17. Liao SC, Lee MB, Lee YJ, Wu CH, Tseng MC. Association between quality of informed consent and pre-operation ambivalence. J Med Educ 2005;9:80-90. 18. Hair JF, Anderson RE, Tatham RL, Babin BJ. Multivariate Data Analysis 5th. Upper Saddle River, NJ: PrenticeHall; 1998. 19. Wang SM, Ku NP, Lin HT, Wei J. The relationships of symptom distress, social support and self-care behaviors in heart transplant recipients. J Nurs Res 1998;6:4-18. 20. Muto K. Organ transplantation as a family issue: living liver donors in Japan. Int J Jpn Soc 2010;19:35-48. 21. Simpson MA, Kendrick J, Verbesey JE, Morin DS, Dew MA, Trabucco A, et al. Ambivalence in living liver donors. Liver Transpl 2011;17:1226-1233. 22. Zhang L, Li Y, Zhou J, Miao X, Wang G, Li D, et al. Knowledge and willingness toward living organ donation: a survey of three universities in Changsha, Hunan Province, China. Transplant Proc 2007;39:1303-1309. 23. Verbesey JE, Simpson MA, Pomposelli JJ, Richman E, Bracken AM, Garrigan K, et al. Living donor adult liver transplantation: a longitudinal study of the donor’s quality of life. Am J Transplant 2005;5:2770-2777. 24. Concejero AM, Chen CL. Ethical perspectives on living donor organ transplantation in Asia. Liver Transpl 2009; 15:1658-1661. 25. Weng LC, Huang HL, Wang YW, Chang CL, Tsai CH, Lee WC. Primary Caregiver stress in caring for a livingrelated liver transplantation recipient during the postoperative stage. J Adv Nurs 2011;67:1749-1757. 26. Weng LC, Huang HL, Wang YW, Chang CL, Tsai CH, Lee WC. The coping experience of Taiwanese male donors in living donor liver transplantation. Nurs Res 2012;61:133-139. 27. Yi M. Decision-making process for living kidney donors. J Nurs Scholarship 2003;35:61-66. 28. Fujita M, Akabayashi A, Slingsby BT, Kosugi S, Fujimoto Y, Tanaka K. A model of donor’s decision-making in adultto-adult living donor liver transplantation in Japan: having no choice. Liver Transpl 2006;12:768-774.
