**3. Donors' experience**

Both quantitative and qualitative studies have aimed to understand the adaptational difficulties experienced by donors.

#### **3.1. Quantitative research**

#### *3.1.1. Becoming a donor*

The experience of becoming a donor was characterized with ambivalence. There are two different types of ambivalence [71]. Residual ambivalence comprised uncertainty feelings and hesitation about the process of donation (such as being frightened of going through with donation) that continue to be present after medical assessments. Acute ambivalence refers to feelings of indecision present during the psychosocial assessment which prevent the prospective donor to give informed consent [18]. Acute ambivalence is uncommon (less than 2%) [72–74], whereas residual ambivalence is common (75%) [75–79].

Studies suggest that donors tend to make decisions that are not informed. A systematic review showed that a high percentage (89–95%) of donors felt they comprehended medical information provided by healthcare professionals regarding drawbacks and benefits of donation, although they reported that their needs for information and knowledge regarding the risks and possible complications were not met [80].

Although a small minority of donors (less than 5%) report to regret their decision to donate [81–84], the majority (80–100%) of donors report to be willing to donate again [77, 84–87]. Those donors who are hesitant or regret donating explain this on the basis of the specific characteristics of their situation (such as risky behaviors of the recipient) rather than the characteristics of the donation process (such as medical risks). Relatedly, donors who believe that the recipient is healthy are willing to donate again, whereas donors who believe that recipients risk their transplant are not willing to donate again.

#### *3.1.2. Psychological problems*

recounted that their quality of life was poor and their physical problems prevented their independence, their social activity, the fulfillment of personal goals and management of psychological issues. At post-transplant period, recipients recounted that they wished to socially integrate and achieve control but significant others limited their independence by overprotecting them. A principled personality, optimistic outlook, incentives and professional sup-

Candidates or recipients of liver transplant reported that they not only experienced negative emotions (such as fear, guilt, anxiety, frustration, embarrassment and uncertainty), mood fluctuations, lack of activity and energy and physical symptoms (such as pain and discomfort) but also negative social changes such as isolation, stigma, dependence on carers, carers' over-

Only one study examined the views of donors on the ways in which recipients evaluated their life as a result of the diagnosis of ESLF and transplantation [70]. Accordingly, donors felt that prior to transplantation in addition to experiencing social limitations, recipients experienced others both negatively (such as being frightened of getting infected by ESLF and others being insensitive) and positively (such as being supported by others). The experience of negative (such as feeling down, hopeless, like a loser) and positive feelings (such as feeling happy and relaxed) as well as improvement in life characterized recipients' experience according to donors. Improvement in life included not only physical and social improvements but also altering life perspective (such as appreciating that ESLF is serious and holding onto life).

Both quantitative and qualitative studies have aimed to understand the adaptational difficul-

The experience of becoming a donor was characterized with ambivalence. There are two different types of ambivalence [71]. Residual ambivalence comprised uncertainty feelings and hesitation about the process of donation (such as being frightened of going through with donation) that continue to be present after medical assessments. Acute ambivalence refers to feelings of indecision present during the psychosocial assessment which prevent the prospective donor to give informed consent [18]. Acute ambivalence is uncommon (less than 2%)

Studies suggest that donors tend to make decisions that are not informed. A systematic review showed that a high percentage (89–95%) of donors felt they comprehended medical information provided by healthcare professionals regarding drawbacks and benefits of donation, although they reported that their needs for information and knowledge regarding the

[72–74], whereas residual ambivalence is common (75%) [75–79].

risks and possible complications were not met [80].

port helped toward independence.

224 Liver Research and Clinical Management

**3. Donors' experience**

ties experienced by donors.

**3.1. Quantitative research**

*3.1.1. Becoming a donor*

protection and restrictions in lifestyle [64–69].

Compared to studies which examined the extent of psychological problems among candidates or recipients of liver transplant, not many studies have examined the extent of these problems among donors.

At pre- and/or post-donation periods, psychological problems that are experienced include low self-esteem, stress and low confidence [88, 89] and mood and anxiety disorders [37, 38, 90–92].

Although some studies suggest that donors' mental health gets improved at post-donation period [88, 93–95], other studies report that the extent of psychological distress is one in every four donors [85, 95, 96].

#### *3.1.3. Quality of life*

As in the case of candidates or recipients of liver transplant, the findings regarding to quality of life of donors have been mixed both at pre-donation and post-donation.

Before liver donation, evidence has suggested that quality of life of donors is low [97]. Yet many studies have suggested that the levels are better than that of general population [87, 92, 98, 99], whereas other studies have shown that donors report poorer quality of life based on mental dimensions [100] as compared to healthy controls.

After donation quality of life has been found to be high among donors [15, 94], and physical and mental aspects of quality of life are equivalent to and even higher than that of general population [81, 84, 86, 87, 90, 100–102]. Recent systematic reviews [103] have shown similar findings.

Evidence suggests that prior to organ donation, quality of life of donors is good, but following donation quality of life gets reduced particularly with regard to physical aspects and activities of daily living [99]. Compared to general population, evidence suggests that prior to donation, quality of life of donors is equal to and in some cases higher but following donation the physical but not mental dimensions of quality of life deteriorate, and this level returns to starting levels at 6-month to 1-year follow-up [87, 100]. More specifically, in one of these studies, donors returned to work at 1 year post-donation, but their levels of physical functioning contrasted with those of mental functioning [87]. With regard to social aspects, most donors do not report any changes in their relationship with recipients or report that their relationship gets improved post-donation [84, 87]. However, closer relationships including relationship with the spouse get worsened [81, 101, 104].

Relatedly, studies show that donors rate their physical health as fair to poor or worse following donation [77, 95, 101, 105]. More specifically, it was shown that quality of life was worse at 2-year than 5-year follow-up [106]. Donors also suffer from debilitating symptoms including pain around the scar, fatigue and poor body image [84, 87–89, 94–96, 105, 107]. In particular, difficulties in quality of life are related to financial difficulties, negative changes in employment status or social relationships as indicated by reviews [15].

significant others' consent and acting on one's gut feeling) and factors helping toward donation (such as the feeling that one does not have any responsibility). Beliefs about organ donation surgery included physical effects (such as pain, opening of stiches, putting on weight). The views that it is necessary to encourage organ donation and to raise people's awareness

Psychosocial Aspects of Liver Transplantation and Liver Donation

http://dx.doi.org/10.5772/intechopen.74551

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In other qualitative studies, donors reported various feelings related to being a donor including not only negative emotions but also positive emotions. The former included feeling frightened, sad, anxious, angry and disappointed as well as feeling of being a failure, whereas positive emotions included feeling motivated and certain [109, 114, 115]. There was also the feelings of disappointment and anger toward medical system and insurance and the views that donation was not valued, that one is not supported and is not taken seriously by the medical staff [115]. Another study found that when the transplant did not fail, donors felt happy for having saved life. When the transplant failed, donors comforted themselves by the

On the other hand, a recent study found that donors experienced not only emotional changes but also changes in character. The former consisted of both negative (such as feeling angry, hopeless, down and helpless) and positive emotions (such as feeling appreciated, reputable, conscientiously comfortable). Changes in character were characterized by both worsening of (such as changing into an aggressive person) and positive changes in character (such as turn-

The relationship of the donor with the recipient has been idealized [109], and difficulties about accepting recipients' ESLF have been experienced [114]. Research has also shown that there is a special bond between the recipient and the donor [116], in that the donor and the recipient become closer and donation is considered as a "proof of love" and the scar as a symbol of a special experience shared by the recipient and the donor only [117]. Moreover, the latter study also found that donation enhanced the positive or conflicting characteristics of the donor recipient relationship and there was not any deterioration in this relationship. Donors sometimes minimized the negative characteristics of this relationship and emphasized the improvements [117]. Similarly, another study reported that the extent of marital breakdown was lower than the general population. In the case of no marital breakdown, marital relationship has become stronger because of donation. In the case of marital breakdown, causes were independent of transplantation or donation process [108]. By contrast, another study reported that donors recounted mixed relationships. These included not only a continuum of feeling supported by significant others/doctors and not feeling supported by mothers or spouses but also formation of a special bond and worsening of close relationships [116]. Relatedly, it was reported that donors tend to postpone their personal needs such as emotional needs associ-

A small number of quantitative studies have examined the effect, of a number of factors on outcomes among recipients of a liver transplant and their donors. For example, it was found that that 51–58% of the variance in quality of life was explained by a number of factors [60]. After

made up beliefs about organ donation.

fact that they did everything they could [108].

ing into a believer and stronger) [116].

ated with rehabilitating oneself [108].

**4. Correlates**

As in the case with recipients of transplant, reviews [15] show that donors who report poor quality of life also report psychological problems.

#### **3.2. Qualitative research**

More qualitative research has been undertaken to examine the experience of donors than that of recipients.

A number of qualitative studies have explored the donors' views on becoming a donor. Accordingly, donors perceive the process of becoming a donor as an automatic response and as an opportunity to help the loved one [67, 108, 109]. The donors felt that they had no choice and decided to be a donor by prioritizing the recipient's life, viewing transplantation as the last chance for the recipient and her family and feeling obligated to save the recipient [110]. More specifically, this study showed that donors decided on becoming a donor by going through five stages [110]. The first stage, recognition, involves learning of liver transplantation from recipients, family, doctors or media; the second stage, digestion, involves realizing the seriousness of liver transplantation and wanting to save recipients from suffering and avoiding the guilt; the third stage consists of making a decision; the fourth stage, reinforcement, involves the donors reinforcing themselves psychologically; the final stage, resolution, involves preparedness and acceptance of donation. Relatedly, it was also reported that donors give three types of consent [111]. 'Unconditional consent' is a voluntary consent to save family members' life; 'pressured consent' is a consent whereby the donor feels pressurized to become a donor but he/she feels frightened. 'Ulterior-motivated consent' refers to the situation when the donor has a hidden motive.

Relatedly, other studies have shown that donors consider donation to cope with guilt regarding their own health and to reduce the responsibility for the ESLF of the recipient [112]. In the same study, donors recounted that they would only donate to certain family members or close friends [88]. By contrast, in another study donors recounted that they would donate to people who were related by blood as well as to anybody whom they felt close to regardless of whether or not they were related by blood [113].

Only one study explored donors' beliefs of the ESLF of the recipients, their transplantation and their own organ donation surgery [113]. This study found that donors' beliefs could be viewed in a number of groups including beliefs about recipients ESLF, beliefs about being a donor, beliefs about surgery for organ donation and beliefs about organ donation. Beliefs about recipients' ESLF included diverse explanations for ESLF (such as spontaneous failure of the liver, worry, stress, senseless drug use, blaming oneself and physicians) and physical symptoms (such as cramps, itching, weakness, developmental slowing down). Beliefs about being a donor consisted of reasons for donating (such as being related by blood, saving a life, doing the right thing, being healed), barriers to being a donor (such as pregnancy, obesity, other people being senseless and selfish), ways of managing these barriers (such as getting significant others' consent and acting on one's gut feeling) and factors helping toward donation (such as the feeling that one does not have any responsibility). Beliefs about organ donation surgery included physical effects (such as pain, opening of stiches, putting on weight). The views that it is necessary to encourage organ donation and to raise people's awareness made up beliefs about organ donation.

In other qualitative studies, donors reported various feelings related to being a donor including not only negative emotions but also positive emotions. The former included feeling frightened, sad, anxious, angry and disappointed as well as feeling of being a failure, whereas positive emotions included feeling motivated and certain [109, 114, 115]. There was also the feelings of disappointment and anger toward medical system and insurance and the views that donation was not valued, that one is not supported and is not taken seriously by the medical staff [115]. Another study found that when the transplant did not fail, donors felt happy for having saved life. When the transplant failed, donors comforted themselves by the fact that they did everything they could [108].

On the other hand, a recent study found that donors experienced not only emotional changes but also changes in character. The former consisted of both negative (such as feeling angry, hopeless, down and helpless) and positive emotions (such as feeling appreciated, reputable, conscientiously comfortable). Changes in character were characterized by both worsening of (such as changing into an aggressive person) and positive changes in character (such as turning into a believer and stronger) [116].

The relationship of the donor with the recipient has been idealized [109], and difficulties about accepting recipients' ESLF have been experienced [114]. Research has also shown that there is a special bond between the recipient and the donor [116], in that the donor and the recipient become closer and donation is considered as a "proof of love" and the scar as a symbol of a special experience shared by the recipient and the donor only [117]. Moreover, the latter study also found that donation enhanced the positive or conflicting characteristics of the donor recipient relationship and there was not any deterioration in this relationship. Donors sometimes minimized the negative characteristics of this relationship and emphasized the improvements [117]. Similarly, another study reported that the extent of marital breakdown was lower than the general population. In the case of no marital breakdown, marital relationship has become stronger because of donation. In the case of marital breakdown, causes were independent of transplantation or donation process [108]. By contrast, another study reported that donors recounted mixed relationships. These included not only a continuum of feeling supported by significant others/doctors and not feeling supported by mothers or spouses but also formation of a special bond and worsening of close relationships [116]. Relatedly, it was reported that donors tend to postpone their personal needs such as emotional needs associated with rehabilitating oneself [108].
