**2. Recipients' experience**

illness refers to patients' perception of their symptoms and their own and their significant

In medicine, the concept of 'chronic patient' is a relatively recent concept [2]. Approximately, in the last 3 decades, a considerable amount of attention is given to chronic physical illnesses for two main reasons. First, medicine can effectively control infectious diseases [2]. Second, the number of patients with a chronic physical illness is increasing. A chronic physical illness refers to a long-lasting and incurable physical illness, although patients may not experience the symptoms all the time [2]. Currently, in developed countries, common causes of death are chronic physical illnesses [3]. Healthcare professionals dealing with patients with a chronic physical illness need to pay attention to both concepts of disease and illness if the aim is to provide a high quality of care which is responsive to all the needs of the patients and their significant others. The treatment of chronic physical illnesses aims to slow down their course as well as to reduce distress resulting from associated physical symptoms. In many cases, medicine is uncertain about the mechanisms of cause and cure of these illnesses [2]; as a result the growing number of patients with a chronic physical illness presents themselves as a big challenge to healthcare professionals. In general, treatment involves changes in lifestyle (such as dietary restrictions), dependence on medical technology such as the use of medication and artificial means

The main characteristic of the ESLF is the liver failing to execute its main functions of digesting, metabolizing and storing the essential nutrients [4]. ESLF occurs due to a number of causes. Hepatitis, liver diseases, metabolic conditions and cancer of the liver constitute some causes of ESLF [5]. Cadaveric and living donor transplantations are the main choices of treatment. Transplantation not only aims to achieve maximal quality and quantity of life but also

Cadaveric transplantation is preferred over living donor transplantation, but the former has a number of disadvantages including long waiting time and low chance of survival [7]. In addition, cadaveric liver transplantation generally requires inpatient treatment and care which may also decrease the chances for survival [7]. The waiting time of the cadaveric liver trans-

In living donor transplantation, a healthy individual related by blood or an individual who is considered by the ethical committee as suitable to donate, although not related by blood, provides a transplant. This form of transplantation has the advantage of decreasing the time that candidates wait for a transplant and increasing the survival rate [11]. However, adult-toadult transplantation is a complicated procedure because approximately 60% of the liver of

Due to advances in liver transplant procedures and immunosuppressive medications, the prognosis following transplantation is good, and the survival rate after 1 year and 8 years of transplantation is approximately 85–90 and 61%, respectively [6, 13]. Some donors are likely to develop complications after organ donation surgery such as biliary problems, reoperation and persistent physical symptoms [9, 14–16]. Donor mortality ranges from 0.1 to 0.3% [17]. This means that transplantation has the possibility of endangering the health of donors. Therefore, in order to maintain their health, they are asked to go through an interdisciplinary

plantation is generally long, but available cadaveric donors are scarce [7–10].

others' reactions to these symptoms [1].

220 Liver Research and Clinical Management

to replace bodily functions.

to minimize the effects of illness and its costs [6].

the donor, in other words the entire right lobe, is used [12].

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

#### **2.1. Quantitative research**

#### *2.1.1. Psychological problems*

Among candidates of liver transplant, reviews [23] have shown that the most common psychological problems at pre-transplant period include delirium, alcohol and substance misuse, anxiety and depressive disorders. In particular, the rates of depression, anxiety and delirium have varied from 4.5–64%, 20–50% and 50–56%, respectively [24–32].

After transplantation, systematic reviews and individual studies [44, 49–52] have shown that recipients have better quality of life. Studies indicate improvement in many areas including emotional, cognitive, social, behavioral, vocational, domestic and sexual areas [53]. A review showed that transplantation improved many dimensions of quality of life. These dimensions included physical health, sexual and social functioning, daily activities as well as overall quality of life [46]. Most positive changes were reported in physical, sexual and daily functioning and overall quality of life, whereas less positive changes were reported in psychological and social areas.

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Prospective studies have also shown similar findings. One such study showed that recipients' general well-being was improved and the experience of physical symptoms (including tiredness, exhaustion and weakness) got reduced 1 year post-transplantation [54]. Similarly another prospective study reported improvements in cognitive areas and overall quality of life [55].

In contrast, evidence also suggests that observed positive changes in quality of life disappear when this is adjusted for those who died and that at a follow-up of 10 years, recipients' cogni-

In addition, some systematic reviews and individual studies [51, 52] have shown that recipients have poorer quality of life in most dimensions of quality of life than healthy controls. In contrast, other studies have shown that quality of life of recipients is not different from or is higher than those of general population and patients with chronic liver disease at 1 year post-

Other studies have shown that high levels of psychological difficulties such as anxiety and depression reduce quality of life directly or as a mediator. For example, it was found that at pretransplant, 31.1 and 25.8% of recipients were clinically significant for anxiety and depression, respectively, as compared to the rates observed in the general population (12.6 and 3.6% for anxiety and depression, respectively [59]). Those recipients with anxiety and depression within clinically significant levels also reported worse quality of life at post-transplantation. Similarly, following transplantation quality of life gets improved, and improvement in mood following transplantation is also related to improvement in quality of life [4, 43, 46, 54, 60, 61]. For example, one of these studies found that recipients without anxiety or depression symptoms at pre-transplant reported quality of life within the normal range at post-transplantation [60].

Studies have shown that patients with ESLF experience their illness by going through two stages including 'becoming ill' and 'not living' [62]. Accordingly, the stage of 'becoming ill' includes interpreting the illness as an illness which develops insidiously, doubting the illness in the absence of experiencing its signs and managing the illness (such as by being positive, independent and supported by the family and friends) and managing its physical symptoms (such as tiredness). The stage of 'not living' includes losing independence due to deterioration in physical functioning, becoming disabled and wishing to return to a normal life by regaining independence. Other studies have provided specific information on the ways in which recipients of a transplant progress from physical, social and psychological dependence to independence [63]. The same study also showed that at pre-transplant period, recipients

tive functioning and quality of life are poor [56, 57].

transplantation [58, 59].

**2.2. Qualitative research**

Suitability of candidates with major mental illnesses for liver transplantation is subject to controversy. It has been argued that the presence of a major mental illness should not be an automatic exclusion criterion. Indeed evidence suggests that candidates with schizophrenia can be successfully transplanted [33]. It has been found that 27% of the sample had a severe personality disorder and 40% of this subsample were put on the transplantation list [34]. Therefore, specific exclusion criteria for those who suffer from a major mental illness may include poor compliance with medical and psychiatric follow-up appointments and poor quality of social support [33].

At post-transplantation, psychological problems experienced by the recipients include delirium, anxiety, depression, dysthymia, adjustment disorder, psychosis, post-traumatic stress disorder (PTSD) and substance related disorder [35–38]. Eighteen to twenty-seven percent of recipients report at least one disorder [38–40]. For example, it was reported that 23% of recipients experienced symptoms of PTSD, and among these recipients, 50% also experienced major depression [38]. However, the rate of depression has ranged from 5–46% across different studies [38, 41]. Nevertheless, the rate of psychological problems was the same as the general population [38].

Some studies have examined whether or not at post-transplant, the rate of psychological problems changes compared to that of pre-transplant. For example, while within 3 months post-transplant, the rate of these problems has been estimated to be 54% [36] at 1- and 3-year follow-up this rate has been estimated to be 7 and 2%, respectively [42]. Research has also shown that levels of different mood problems such as depression and anxiety have got reduced after transplantation [43]. In contrast another study found that there was no difference in terms of depressive symptoms prior and following transplantation [44].

Recipients also tend to experience different psychological problems at different time periods following transplantation. For example, it was found that recipients experienced depressive symptoms more commonly while they were in the intensive care unit, whereas they experienced anxiety symptoms more commonly after discharge from hospital [45].

#### *2.1.2. Quality of life*

Reviews [46] have shown that quality of life of candidates is poor at pre-transplantation. Indeed, the extent of impairment is greater than that of hospitalized patients with pneumonia, outpatients with rheumatoid arthritis, patients with minor nonacute conditions and the general population but similar to those of patients with peripheral vascular illness and osteoarthritis [47, 48].

After transplantation, systematic reviews and individual studies [44, 49–52] have shown that recipients have better quality of life. Studies indicate improvement in many areas including emotional, cognitive, social, behavioral, vocational, domestic and sexual areas [53]. A review showed that transplantation improved many dimensions of quality of life. These dimensions included physical health, sexual and social functioning, daily activities as well as overall quality of life [46]. Most positive changes were reported in physical, sexual and daily functioning and overall quality of life, whereas less positive changes were reported in psychological and social areas.

Prospective studies have also shown similar findings. One such study showed that recipients' general well-being was improved and the experience of physical symptoms (including tiredness, exhaustion and weakness) got reduced 1 year post-transplantation [54]. Similarly another prospective study reported improvements in cognitive areas and overall quality of life [55].

In contrast, evidence also suggests that observed positive changes in quality of life disappear when this is adjusted for those who died and that at a follow-up of 10 years, recipients' cognitive functioning and quality of life are poor [56, 57].

In addition, some systematic reviews and individual studies [51, 52] have shown that recipients have poorer quality of life in most dimensions of quality of life than healthy controls. In contrast, other studies have shown that quality of life of recipients is not different from or is higher than those of general population and patients with chronic liver disease at 1 year posttransplantation [58, 59].

Other studies have shown that high levels of psychological difficulties such as anxiety and depression reduce quality of life directly or as a mediator. For example, it was found that at pretransplant, 31.1 and 25.8% of recipients were clinically significant for anxiety and depression, respectively, as compared to the rates observed in the general population (12.6 and 3.6% for anxiety and depression, respectively [59]). Those recipients with anxiety and depression within clinically significant levels also reported worse quality of life at post-transplantation. Similarly, following transplantation quality of life gets improved, and improvement in mood following transplantation is also related to improvement in quality of life [4, 43, 46, 54, 60, 61]. For example, one of these studies found that recipients without anxiety or depression symptoms at pre-transplant reported quality of life within the normal range at post-transplantation [60].

#### **2.2. Qualitative research**

**2.1. Quantitative research**

222 Liver Research and Clinical Management

*2.1.1. Psychological problems*

quality of social support [33].

general population [38].

*2.1.2. Quality of life*

arthritis [47, 48].

Among candidates of liver transplant, reviews [23] have shown that the most common psychological problems at pre-transplant period include delirium, alcohol and substance misuse, anxiety and depressive disorders. In particular, the rates of depression, anxiety and delirium

Suitability of candidates with major mental illnesses for liver transplantation is subject to controversy. It has been argued that the presence of a major mental illness should not be an automatic exclusion criterion. Indeed evidence suggests that candidates with schizophrenia can be successfully transplanted [33]. It has been found that 27% of the sample had a severe personality disorder and 40% of this subsample were put on the transplantation list [34]. Therefore, specific exclusion criteria for those who suffer from a major mental illness may include poor compliance with medical and psychiatric follow-up appointments and poor

At post-transplantation, psychological problems experienced by the recipients include delirium, anxiety, depression, dysthymia, adjustment disorder, psychosis, post-traumatic stress disorder (PTSD) and substance related disorder [35–38]. Eighteen to twenty-seven percent of recipients report at least one disorder [38–40]. For example, it was reported that 23% of recipients experienced symptoms of PTSD, and among these recipients, 50% also experienced major depression [38]. However, the rate of depression has ranged from 5–46% across different studies [38, 41]. Nevertheless, the rate of psychological problems was the same as the

Some studies have examined whether or not at post-transplant, the rate of psychological problems changes compared to that of pre-transplant. For example, while within 3 months post-transplant, the rate of these problems has been estimated to be 54% [36] at 1- and 3-year follow-up this rate has been estimated to be 7 and 2%, respectively [42]. Research has also shown that levels of different mood problems such as depression and anxiety have got reduced after transplantation [43]. In contrast another study found that there was no differ-

Recipients also tend to experience different psychological problems at different time periods following transplantation. For example, it was found that recipients experienced depressive symptoms more commonly while they were in the intensive care unit, whereas they experi-

Reviews [46] have shown that quality of life of candidates is poor at pre-transplantation. Indeed, the extent of impairment is greater than that of hospitalized patients with pneumonia, outpatients with rheumatoid arthritis, patients with minor nonacute conditions and the general population but similar to those of patients with peripheral vascular illness and osteo-

ence in terms of depressive symptoms prior and following transplantation [44].

enced anxiety symptoms more commonly after discharge from hospital [45].

have varied from 4.5–64%, 20–50% and 50–56%, respectively [24–32].

Studies have shown that patients with ESLF experience their illness by going through two stages including 'becoming ill' and 'not living' [62]. Accordingly, the stage of 'becoming ill' includes interpreting the illness as an illness which develops insidiously, doubting the illness in the absence of experiencing its signs and managing the illness (such as by being positive, independent and supported by the family and friends) and managing its physical symptoms (such as tiredness). The stage of 'not living' includes losing independence due to deterioration in physical functioning, becoming disabled and wishing to return to a normal life by regaining independence. Other studies have provided specific information on the ways in which recipients of a transplant progress from physical, social and psychological dependence to independence [63]. The same study also showed that at pre-transplant period, recipients 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 support helped toward independence.

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

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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

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,

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

As in the case of candidates or recipients of liver transplant, the findings regarding to quality

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

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

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

of life of donors have been mixed both at pre-donation and post-donation.

mental dimensions [100] as compared to healthy controls.

with the spouse get worsened [81, 101, 104].

risk their transplant are not willing to donate again.

*3.1.2. Psychological problems*

problems among donors.

four donors [85, 95, 96].

*3.1.3. Quality of life*

90–92].

findings.

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' overprotection and restrictions in lifestyle [64–69].

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).
