Family-Related Motivation and Regret Intensity Among Family Liver Donors by Type of Family Relationship

Introduction

The number of liver transplants has steadily risen worldwide, with a 20% increase in 2021 compared to 2015 [1]. Although most liver transplants in Western countries are from deceased donors, over 70% of transplants in most Asian countries are from living donors [2]. Recently, living donor liver transplantation (LDLT) has been increasingly adopted in North America due to better outcomes for recipients [3]. However, there are differences in how LDLT is approached between Western and Asian countries. For example, in the United States, 47% of living liver donors (LLDs) in 2022 were either biologically or legally related to the recipient [4], whereas in South Korea, 99% of LLDs in 2023 were related to the recipient [5].

Under the Organ Transplant Law in South Korea, a potential LLD must be a voluntary donor aged 16 years or older, with the right to withdraw consent at any point before the transplant surgery [6]. The decision-making process in living donors consists of 2 key phases. Initially, donors make a spontaneous and intuitive decision, considering various factors such as family harmony, moral expectations, and religious beliefs [7,8]. Subsequently, after tissue compatibility test, they acquire additional information about the surgery and its outcomes, allowing them to reassess their decision analytically, weighing the associated benefits and risks [7,8]. Additionally, after expressing their intent to donate, potential LLDs undergo counseling sessions with a social worker and a psychiatrist to evaluate their motivations, ensure the absence of coercion, and confirm that thorough family discussions regarding the donation have taken place [9].

Although donation is a voluntary act, a systematic review indicated that nonetheless, a small proportion of donors (0–11.4%) regret their decision to donate [10]. Moreover, the recent and longest follow-up study up to 20 years revealed that more donors (27.5%) experienced feelings of regret [11]. Regret following donation has been linked to poor mental quality of life [12], depression, and reduced life satisfaction [13]. Therefore, identifying the factors contributing to such regret and strategies to mitigate its intensity remains essential. Previous studies identified several postoperative factors related to post-donation regret, such as time since donation, recipient death [14], worse surgery recovery [15], and satisfaction with pain management [16]. In contrast, factors in the decision-making process have received less attention. In the initial phase of decision-making, it is particularly important to explore the family-related motivations (FRM) for donation, apart from personal, religious, or social motivation, as liver donation in South Korea is often expected from compatible family members [17]. Therefore, it is essential to investigate the specific FRM for donation and determine which factors are most important.

A qualitative meta-synthesis study suggested that the primary motivation for family organ donation is the desire to save a loved one when no other alternative treatment is available [18]. Shaw and Webb [19] further highlighted that organ donation is often driven by the intention to ensure the well-being of all family members. Additional motivations related to family include fulfilling family expectations, role attribution (reluctance to have another family member undergo donation), and the quality of the donor’s intimacy with the recipient [20,21].

The decision-justification theory proposes that the perceived intensity of regret is determined by the underlying rationale for the decision [22]. If individuals can considerably believe the decision to be justified in retrospect, they have less regret, even if the decision has a poor consequence. Liu et al [23] also emphasized the importance of effective decision-making that was well-informed or reflected their values because effective decision-making was related to low decision regret. Therefore, it is essential to uncover the intricate FRM of family donors and examine their relationship with regret intensity. However, specific to family donors, little is known about segmentalized motives related to family and how much this influences the decision to donate and regret following donation. If the transplant team can recognize vulnerable individuals during the preoperative stage, they can provide greater attention and offer tailored interventions in advance.

Furthermore, donor motivations and psychological outcomes may vary based on the type of family relationship between donor and recipient. For instance, child donors reported lower levels of altruistic and familial motivation compared with parent and spouse donors [24]. Parent donors also faced greater risks of anxiety and depression than sibling donors [25]. While 1 study compared differences in regret between related and non-related donors [26], no study has yet examined differences in regret based on specific types of family relationships.

Therefore, this study aimed to examine whether FRM was associated with post-donation regret and to explore how the type of family relationship moderated this association. The following research hypotheses were proposed:

Material and Methods

DESIGN, SAMPLE, AND SETTING:

This study used a quantitative, cross-sectional design with secondary analysis of an existing dataset of LLDs collected in 2021 from a tertiary university hospital in Seoul, South Korea. The parent study was a descriptive study aimed at identifying predictors of health-related quality of life among LLDs; data were collected through surveys combined with retrospective medical record reviews [12]. The original dataset consisted of 124 LLDs aged ≥19 years, all of whom were recipients’ children, spouses, siblings, or parents, who had undergone hepatectomy for donation more than 1 month prior. After addressing missing data, the moderation model was analyzed using a sample of 121 LLDs.

Utilizing G*Power 3.1.9.4, a post hoc power analysis for linear multiple regression was conducted. The analysis was conducted with a significance level of 0.05, a medium effect size of 0.15, and included 8 predictors: FRM, the type of family relationship, the interaction term between FRM and family relationship type, and 5 covariates. Based on a total sample size of 121 LLDs, the analysis indicated a post hoc power of 85.5%.

REGRET INTENSITY: The following question was used to assess post-donation regret: “If you go back to the time before the organ donation, would you still donate?” The LLDs were asked to choose one of the following 4 response options: ‘very likely (1)’, ‘somewhat likely’ (2), ‘not likely’ (3), or ‘absolutely not’ (4). A higher score indicated greater regret following the donation. This measure was developed based on prior studies [27,28]. Before the survey, the face validity of the measure was evaluated by 5 transplant professionals and 5 LLDs using a qualitative method. They evaluated it based on clarity, complexity, relevance to the participants, and suitability for its intended purpose.

FAMILY-RELATED MOTIVATION: The different FRM for liver donation were retrospectively assessed using a subscale of the Donor Motivation Questionnaire [24]. This questionnaire consists of 5 items that measure family-related motives. Each item was rated on a 5-point Likert-type scale ranging from 0 (disagree) to 4 (agree very strongly); a higher total score indicates a higher level of FRM for donation. The reliability and validity of the Donor Motivation Questionnaire were confirmed [24]. In the current study, the Guttman’s Lamda 2 for a FRM subscale was 0.71, indicating acceptable internal consistency.

TYPE OF FAMILY RELATIONSHIP: The type of family relationship between the LLD and recipient was identified. Since 1 of the inclusion criteria for the original sample was that LLDs had to be within the second degree of family relationship with the recipients, donors were either children, spouses, siblings, or parents of recipients. In South Korea, most donors were children (64.4%), followed by spouses (15.3%), siblings (9.8%), parents (4.2%), and other relatives [5], with these proportions being similar to those in our study sample. Given that child donors represented the largest proportion of family donors, exceeding 60% [5], we reclassified family donors into 2 categories: child donors and non-child donors.

DEMOGRAPHIC AND DONATION-RELATED INFORMATION: Information on sex, age, caregiver role, months since donation, recipient death, and postoperative complications were collected. The postoperative complications were categorized according to severity using the Clavien–Dindo classification [29]. Grade I include a typical postoperative course, which is considered a normal process with no pharmaceutical, surgical, endoscopic, or radiological procedures; examples include fluid collection and pleural effusion. Grade II problems include those that need medication, total parenteral nutrition, and blood transfusions; examples include dyspepsia and colitis. Grade III problems necessitate surgical, endoscopic, or radiological intervention; examples include bile duct stenosis and hematoma [29].

ETHICAL CONSIDERATIONS:

This study received approval from the Institutional Review Board of Seoul National University Hospital (approval no.: 2304-047-1421). As a secondary analysis, the requirement for obtaining informed consent for this study was waived. De-identified data were used for data analysis.

DATA ANALYSIS:

Descriptive statistics were presented as means, standard deviations (SDs), numbers, or percentages of the 2 groups classified according to the type of family relationship: ‘child’ and ‘non-child’ groups. To explore the differences between the groups, Student’s t-tests were used for continuous variables, while Pearson’s chi-square tests or Fisher’s exact tests were applied for categorical variables. The normality of the study variables was tested using the skewness and kurtosis statistics, which were acceptable values. Pearson’s correlation coefficients were used to explore the relationship between dependent, independent, and confounding variables. The PROCESS macro 4.2 was utilized to analyze the simple moderating effect, a bootstrapping method that always allowed dichotomous moderators [30]. Model 1 of the PROCESS macro was employed to examine whether the type of family relationship moderated the FRM and regret intensity association. A 95% confidence interval (CI) was generated to infer each effect with 10 000 bootstrapping samples. The significance of the association is shown by the upper and lower limits of a 95% CI excluding zero. All analyses were performed using SPSS version 25 (IBM Corp.).

Because 3 LLDs did not provide answers to any of the items in the Donor Motivation Questionnaire, these 3 LLDs were excluded, and finally, 121 were analyzed in the moderating analysis. An independent variable (FRM) and a dependent variable (regret intensity) were considered continuous variables. The type of family relationship was treated as a dichotomous variable: the child donor of the recipient was coded as 1, whereas the spouse, sibling, or parent donor of the recipient was coded as 0. The control variables, including age, sex, caregiver role, postoperative complications, and months since donation, were also entered into this moderating analysis. We considered that the caregiver role might contribute to regret, as some donors who were also the recipient’s caregivers reported a sense of relief, while others continued to experience stress in providing postoperative care to the recipient after donation [31,32]. Another significant variable in previous studies, the recipient’s death, was excluded as a control variable because the number of cases was small. Among the control variables, age and months since donation were continuous variables. The dichotomous control variables were coded as follows. In terms of sex, female and male participants were coded as 1 and 0, respectively. For the recipient’s caregiver, the donor was coded as 1 and another family member as 0. Lastly, the postoperative complications were coded as 1 for “grade I–III complications according to the Clavien-Dindo classification” and 0 for “no complications.”

Results

SAMPLE DESCRIPTION:

The demographic and donation-related characteristics of the participants are presented in Table 1. The sample consisted of 124 LLDs, of whom 88 were adult children of the recipient, and 36 were spouses, siblings, or parents of the recipient. Among the non-child donors, there were 17 spouses (14 wives and 3 husbands), 11 siblings (5 sisters and 6 brothers), and 8 parents (3 mothers and 5 fathers). The proportion of male donors was significantly higher in the child group compared to the non-child group (p=0.012), with participants in the child and non-child groups predominantly consisting of men (63.6%) and women (61.1%), respectively. The mean age of the total LLDs was 37.9 years (SD=11.4). Adult child donors were younger than the other relative donors (p<0.001). Approximately one-third of the donors (30.6%) were caregivers of the recipients, and this proportion differed significantly between the 2 groups (p<0.001). Out of 124 recipients, 11 died after transplantation. The average number of months since donation was 30.4 (SD=26.1) months. Approximately 8.1% of the donors developed grade I–III complications postoperatively. With regard to the FRM, the mean score was 11.0 (SD = 4.0). The mean score of regret intensity was 1.3 out of 4 (SD=0.5). The mean scores of regret were significantly different between the 2 groups (p=0.047).

FAMILY-RELATED MOTIVATIONS:

Table 2 shows 5 items of FRM of family LLDs according to the type of family relationship. The most common motive was “because I felt family affection for the recipient” (87.9%), followed by “because it was desirable for the well-being of the whole family” (86.3%). The least common motive was “because of family expectations to help the recipient” (11.3%). The motive with the greatest difference between the child and non-child groups was “because I didn’t want another family member to suffer from organ donation.”

CORRELATIONS AMONG THE STUDY VARIABLES:

Pearson correlations among the study variables are shown in Table 3. FRM was correlated with sex (p<0.05) and age (p<0.05). The type of family relationship was negatively correlated with sex (p < 0.05), age (p<0.001), and caregiver role (p<0.001). Regret intensity was negatively associated with FRM (p<0.05) and the type of family relationship (p<0.05).

MODERATING EFFECT OF FAMILY RELATIONSHIP TYPE ON THE ASSOCIATION BETWEEN FRM AND REGRET INTENSITY:

The bootstrap analysis revealed that the type of family relationship significantly moderated the association between FRM and regret intensity (Table 4). After adjusting for age, sex, caregiver role, postoperative complications, and months since donation, FRM was negatively associated with regret intensity (Effect=−0.074, 95% Boot CI [−0.148, −0.017]). The type of family relationship was also negatively associated with regret intensity (Effect=−0.944, 95% Boot CI [−1.970, −0.193]), indicating that non-child donors were more likely to experience regret compared to child donors. The interaction term (i.e., FRM×type of family relationship) was positively associated with regret intensity (Effect=0.062, 95% Boot CI [0.003, 0.141]), confirming the moderating role of family relationship type.

Table 5 shows the conditional effects of FRM on regret intensity. Among child donors, FRM was not significantly associated with regret intensity (Effect=−0.012, 95% Boot CI [−0.039, 0.015]); however, among spouse, sibling, and parent donors, FRM was significantly and inversely associated with regret intensity (Effect=−0.074, 95% Boot CI [−0.124, −0.024]).

Discussion

This study found that low FRM is associated with increased regret intensity among family LLDs. This study also identified the moderating role of the type of family relationship in the association between FRM and regret intensity. Among spouse, sibling, and parent donors, those with lower FRM had significant tendencies to have greater intensity of regret. However, this trend was not significant in child donors.

In this study, most family LLDs decided to donate out of love for the recipient and a desire for the well-being of the entire family, which is consistent with previous studies that conducted thematic analyses of qualitative research on living kidney donors [33]. Furthermore, most participants indicated that their decisions were not influenced by family expectations, suggesting that most family LLDs are likely free from coercion. In addition to this, when compared to child donors, non-child donors were more inclined to donate to prevent another family member from suffering due to liver donation. Spouse, sibling, and parent donors expressed greater concern for other family members who might eventually need to donate for various reasons if they did not take action themselves. This concern may explain the higher proportion of women among the non-child donors. Rota-Musoll et al [34] noted that the prevalence of wives among spouse donors can be attributed to their tendency to alleviate caregiver burden for their husbands (the recipients) and prevent their children from becoming donors. In the case of parent donors, a previous study has found that mothers donate more frequently than fathers due to factors such as the father being the sole breadwinner or the mother having a closer relationship with the children (the recipients) [35]. However, our study revealed different results regarding parent donors. Although the parent sample size was too small for a definitive comparison, the limited number of mothers may be attributed to the increasing socioeconomic roles of women in Korean society. Additionally, fathers may have taken on the role of donors as mothers assumed responsibility for postoperative care for both the donor (husband) and the recipient (child). Future research should aim to compare not only by family relationship but also by gender, using a larger sample size.

Meanwhile, in the child donor group, there were more sons than daughters. The high proportion of sons as child donors may reflect the social climate and expectations regarding women’s roles in East Asia. Young, single women are often implicitly excluded from consideration due to traditional associations with future pregnancy and the desire to remain physically unscarred [20]. Married daughters also tend to be excluded as their newer family roles are perceived as more important [32].

The level of FRM showed a negative association with the intensity of post-donation regret. This finding that the pre-donation factor was related to regret after donation is in line with a prospective study identifying that a greater sense of responsibility toward the recipient and greater expectations regarding benefits were linked to higher post-donation regret [15]. Therefore, psychosocial assessment of donor candidates should be sensitive to the underlying motivations of individuals with low FRM. There is a need to develop more tailored guidance for exploring motives and assessing decision-making [33,36]. We suggest motivational intervention for prospective donors, a prevented intervention that helps the donors express positive and negative motivations and recognize how the donation is connected to their important goals and values, finally resolving ambivalence and preventing psychosocial difficulties after donating [37].

The relationship between FRM and regret intensity was found to be moderated by the type of family relationship, even after controlling for covariates. So far, family donors have been viewed as a homogeneous group compared with unrelated donors. However, this study revealed that non-child donors with lower FRM are the group most vulnerable to regret. We may infer that this is because key motivations, including expectations and rationales for donation, differ depending on the type of family relationship [38]. Spousal donors tend to expect a transplant to enable the recipient to actively participate in family life and events while alleviating the caregiving burden on themselves [39]. Sibling donors, on the other hand, tend to donate to gain recognition and attention, avoid family tension, or fulfill a sense of obligation, often accompanied by ambivalence [16,38,39]. Parent donors are primarily driven by an unconditional willingness to save their child, prioritizing the child’s health above all else, often as a way to mitigate feelings of guilt over their child’s illness [21,40]. Non-child donors appear to donate for certain personal benefit as well as FRM, and unmet expectation in these areas tend to increase levels of regret. In contrast, FRM was not significantly associated with regret intensity in child donors, whose regret levels were lower than those of non-child donors. A unique motive for child donors was a sense of obligation to repay their perceived indebtedness to the family [32]. This suggests that their intention to gain personal benefits from donations is weak. They tend to view donation either as a gift given without expecting anything in return or as repayment for past support, perceiving it as an inherent duty regardless of the consequences [38].

Therefore, transplant teams should counsel prospective donors to thoroughly assess their core motivations and determine whether they expect personal benefits from donations. In South Korea, pre-donation counseling primarily focuses on verifying that the donor is a relative or long-time friend of the recipient and ensuring that financial motives are absent [17]. However, beyond superficial or formal confirmation, counseling should explore the true nature of FRM, the donor’s dominant motivation, and any personal expectations, including potential social or psychological benefits. Also, healthcare providers must educate family donors about possible outcomes of their expectations. Such a process will help donors clearly understand their own motivations and enable them to make genuinely autonomous decisions.

Additionally, in this study, non-child donors often assumed multiple roles as family members, caregivers, and donors, which could lead to psychosocial vulnerability [41]. Despite these challenges, they tend to remain silent about their feelings, endure difficulties alone, and often experiencing loneliness as a result [41,42]. Therefore, it is crucial to provide family donors, particularly non-child donors, with adequate emotional support and information before donation [41]. Establishing support groups for donors with similar family relationships to recipients could also be beneficial. Within these groups, donors could share their FRM, expectations, and post-donation experiences. Such group therapy might help reduce overly optimistic expectations and mitigate feelings of regret.

This study has some limitations. First, since regret intensity was measured with only a single question, it is recommended that future research use multi-item instruments. Moreover, FRM was retrospectively assessed after donation, which can cause recall bias. Therefore, prospective studies are needed to provide more reliable data. Additionally, since the data used in this study were collected from a single hospital, the generalizability of the results may be limited. Future research should investigate these associations in other geographic populations and ensure a sufficiently larger sample size.

Conclusions

This study examined preoperative factors influencing the intensity of regret based on second-degree family relationships. Non-child donors with low FRM were found to have a higher risk of experiencing intense regret compared to child donors. These findings highlight the importance of providing tailored support to donors, taking into account both the type of family relationship and their FRM levels. Transplant teams should counsel non-child donors who exhibit low FRM regarding their underlying motivations and expectations, providing targeted emotional support and psychological interventions to mitigate post-donation regret.

Data Availability Statement

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.