Investigation of actual daily lifestyle leading to continuous self-management after living-donor liver transplantation: More than 5 years living with living-donor liver transplantation and emotions of recipients

Authors


Chiharu Akazawa, Human Health Science, Graduate School of Medicine, Kyoto University, 53 Kawahara-cho, Shogoin Sakyo-ku, Kyoto 606-8507, Japan. Email: chiakz@hs.med.kyoto-u.ac.jp

Abstract

Aim:  This research aimed to investigate the actual daily lifestyle leading to continuous self-management after living-donor liver transplantation (LDLT), by interviewing more than 5 year survivors of transplantation on their lifestyles from various angles, such as meals, rests, and human relationships.

Method:  In this research, survivors of more than 5 years were interviewed about their daily lifestyle, and a qualitative inductive approach to the analysis of continuous self-management was taken.

Results:  Interviews were conducted with 26 patients: 11 men and 15 women with an average age of 49 years (range, 22–76). Through analysis, 205 labels were extracted, which were aggregated into one core category, 13 categories and 68 subcategories. Differences in the three patterns of lifestyle –“the reflected lifestyle after operation”, “unchanged daily lifestyle”, and “self-management eases along with recovery”– occurred owing to differences in changes in values through the transplantation experience. The changes in values were affected by realization of the experience and the action, which come from various internal and external influences during the process of recovery. All of the recipients used consulting behavior to complement self-management after leaving hospital.

Conclusion:  The daily lifestyle of transplant recipients was clarified by the patterns of lifestyle. Differences in the three lifestyle types occurred owing to differences in changes in values though the transplantation experience.

INTRODUCTION

It has been 20 years since organ transplantation started in Japan. It began with living-donor liver transplantation (LDLT) for children; adult-to-adult LDLT then followed; and the Act on Organ Transplantation became effective in 1997 under the recognition of brain death as human death. The Japan Organ Transplant Network (2010) reported 115 cases of transplant from brain-dead donors taking place by December 2010. Approximately 3200 cases of LDLT and liver transplantation from brain-dead donors had taken place by 2006 (as reported by the Japan Liver Transplantation Society). The number of living-donor renal transplantation (LDRT) cases was approximately 13 000 in 2004. The 5 year survival rate after liver transplantation from brain-dead donors, heart transplantation, and renal transplantation is 80–90%; those after LDLT and LDRT are approximately 76% and 88%, respectively; and the rate is increasing.

Organ transplantation has brought significant benefit even for some of those patients whose disorders are treated ineffectively with medication, leading to death. The results have increased enrollment into transplantation programs year by year. The number of brain-dead donors has, however, been insufficient relative to the waiting patients, and only a few cases of transplantation occur under the Organ Transplantation Act annually, although 29 cases of this type of operation were reported in the 6 months following amendment of the Act in July 2010.

Transplant recipients’ daily lifestyle is significant to avoid repeated transplantation. The treatment does not end with the fortunate reception of the donated organ, but rather life-long self-management after the operation is needed. Previous studies have focused on the technique of operation, immediate postsurgical management, and medication such as immune-suppressing drugs; by contrast, studies are fewer (Bravata, Olkin, Barnato, Keeffe, & Owens, 1999; Bona et al., 2000; Desai et al., 2008) on the recipients’ self-management at 1, 5, and 10 years after the operation and their return to daily lifestyle, especially looking at increasing their quality of life (QOL), and the detailed picture of the problems encountered after discharge from hospital is not clear.

Medical and psychological/mental issues have comprised most of the previous studies on transplantation. Those in the medical field have looked at the techniques of operation, medications for avoiding rejection such as immune-suppressing drugs, therapeutic management after operation, and so forth. Additionally in Japan, as the cases of LDLT are many more than those of liver transplantation from brain-dead donors, both donors and recipients have been studied in psychological/mental investigations, in which psychiatrists have reported mental symptoms after the LDLT operation as a familiar problem. The research also indicated that anxiety before the operation increases mental symptoms after the transplantation.

Considering the self-maintenance after leaving hospitals, patients who undergo transplantation are required to keep taking immune suppressors for life, which forces them to deal with infections and rejection. They also become patients with chronic diseases after transplantation. Leaflets providing notes and suggestions are made and distributed to patients after leaving hospital at the beginning of transplantation. However, no studies have tested the effects of the leaflets; there are only the results of questionnaires by the participants, which show patients’ anxieties concerning repeated transplants, coexisting illnesses such as infections, negative side-effects of medications, and so forth. In fact, the rate of repeated hospitalization of liver transplantation recipients is approximately 75% (Nagai et al., 2008), and that of repeated transplantation is approximately 2.7% (as reported by the Japanese Liver Transplantation Society, 2010). Gillian (1999) reported on the lifestyles of those after leaving hospital post-transplant abroad and stated that the patients needed the support of their family and friends in order to maintain QOL.

It is valuable to examine the daily lifestyle of survivors 5 years after leaving hospital by interview in order to clarify the actual situation, which will lead to more effective guidance of self-management based on daily lifestyle after hospital discharge. It will also lead to prevention of repeated hospitalization and transplantation, and to decreasing national medical costs.

This research aims to investigate actual daily lifestyle leading to continuous self-management after LDLT, by interviewing transplantation survivors of over 5 years on their lifestyles from various angles, such as meals, rests, and human relationships.

METHODS

Participants

In this research the subjects were: (i) survivors of over 5 years (>10 years if possible); (ii) older than 20 years (no upper age limit as long as their consciousness was clear); (iii) available for interview for 30–40 min; and (iv) native Japanese speakers. Suitable recipients were contacted by the transplant co-coordinator, and a researcher explained the purpose of the research and obtained his/her consent when he/she came to the hospital. After obtaining informed consent, a 40 min semistructured interview was conducted and the transcript was recorded.

The researcher had no involvement in the participants’ treatment and met them for the first time in the interviews. The data were produced by also having the participation of qualitative investigators in converting verbatim records to data so that the ideas of the investigator did not influence the data.

Data collection

Semistructured interviews with an interview guide were conducted from April to September 2008. The recipients were asked to remember and reflect on their daily lifestyle during the 5 years or more that had passed since the operation. The interview guide and questions was as follows (see Table 1).

Table 1. Interview guide and questions
(1) Attributive questions:
 How old are you?
 Where from do you come to see the doctor?
(2) Process leading to transplantation:
 What was the reason to have the transplantation?
 When did you have the transplantation?
 Who was the donor?
 In what ways was the donor decided?
(3) Process from the operation to leaving hospitals
 Was your progress okay around the operation?
(4) Progress after leaving hospital:
 How often do you come and see the doctor since leaving hospital?
 Do you have any difficulties now?
 Have you been readmitted to the hospital since leaving?
 Do you have any concomitant disease?
(5) Guidance on the maintenance (e.g. citrus intake, infection prevention, medication, rest, exercise, meals, articles, and so forth) after leaving hospital:
 Do you remember the guidance you received when you left hospital?
 What guidance are you following?
 When did you stop following the guidance?
 Why did you stop doing so?
(6) Changes in mental and social aspects:
 Do you have any support from your family?
 Do you have job currently?
 What kind of job are you doing?
 When did you restart your job?
 Do you have any support from your workplace?
 Have your relationships with your friends changed?
 Have you been changed by the transplantation?
  • 1Attributive questions:
    • • How old are you?
    • • Where do you come from to see the doctor?
  • 2Process leading to transplantation:
    • • What was the reason to have the transplantation?
    • • When did you have the transplantation?
    • • Who was the donor?
    • • In what ways was the donor decided?
  • 3Process from the operation to leaving hospital:
    • • Was your progress okay around the operation?
  • 4Progress after leaving hospital:
    • • How often do you come and see the doctor since leaving hospital?
    • • Do you have any difficulties now?
    • • Have you been readmitted to the hospital since leaving?
    • • Do you have any concomitant disease?
  • 5Guidance on maintenance strategies (e.g. citrus intake, infection prevention, medication, rest, exercise, meals, articles, and so forth) after leaving hospital:
    • • Do you remember the guidance you received when you left hospital?
    • • What guidance are you following?
    • • When did you stop following the guidance?
    • • Why did you stop doing so?
  • 6Changes in mental and social aspects:
    • • Do you have any support from your family?
    • • Do you have a job currently?
    • • What kind of job are you doing?
    • • When did you restart your job?
    • • Do you receive any support from your workplace?
    • • Have your relationships with your friends changed?
    • • Have you been changed by the transplantation?

Data analysis

Continuous comparative analysis was conducted by reference to the grounded theory approach (Strauss & Corbin, 2008). Subjects were asked to express freely their experience of their meals, rests, and human relationships in their daily lifestyle after transplantation. The data collected from the interviews was segmented by meaning and coded by concepts according to similarities.

Three patterns of daily lifestyle after leaving hospital were extracted when approximately 14 cases had been processed by repeated comparative analysis. It seemed that those three patterns were affected by differences in thoughts on transplantation, which was the focus of additional interviews. The three patterns with additional information were categorized, and the relationships among the categories was coded, which led to the construction of models.

Supervision by the expert in qualitative research was available throughout the study.

Ethical considerations

The data were numbered so that individuals could not be identified, and were handled only by the researcher, and between the researcher and collaborators. The data were analyzed on computers that were not connected to the Internet, and stored on a USB memory stick that was locked away after use. The data will be deleted after publication of the research.

Informed consent

The research purpose, the participation on a voluntary basis, refusal to participate, and the ways of dealing with the data were explained in writing to all potential participants. Interviews were conducted only with those who gave agreement in writing. This research was authorized by the Ethics Committee of Kyoto University, Japan.

RESULTS

Summary of the research objects

The research included 26 patients: 11 men and 15 women with an average age of 49 years (range, 22–76). The average age when the patient received the transplantation was 42 years, and the average survival period after transplantation was 7.4 years (see Table 2). The diseases were as follows: seven patients with biliary disorder, 10 with hepatitis, five with acute hepatic failure and four with metabolic disorders. The period of time from when the need for transplantation was recommended by the doctor to when the actual transplantation operation was performed was 8.2 months (range, 0.2–48 months). Donors were the spouse in six cases, a parent in nine, a sibling in five, a child in five, and a nephew in one. Twenty-one of the patients had occupations.

Table 2. Demographic data of the study participants
Characteristics n = 26
  • *

    Waiting time: months from living-donor liver transplantation needed.

Sex 
 Female15
 Male11
AgeMean ± standard deviation (range)
 Present49.0 ± 14.9 years (22–76)
 Transplantation42.1 ± 15.7 years (18–70)
Survival term7.5 ± 1.9 years (4–11)
Waiting time8.2 ± 11.5 months (0.2–48)*
Primary disease 
 Cholestatic diseases7
 Hepatocellular diseases10
 Acute liver failure5
 Metabolic diseases4
Donor 
 Spouse6
 Parent9
 Brother/sister5
 Daughter/son5
 Nephew1
 Job 
  Yes21
 Living together 
  Yes21

The subjects resided all over Japan, although most of them were living in the Kansai region, and 21 of them were living with their family.

Summary of the concept “actual daily lifestyle situation after leaving hospital of LDLT recipients surviving more than 5 years”

In total, 205 labels were extracted through analysis, which were aggregated into one core category, 13 categories, and 68 subcategories (see Table 3). These are (<< >> indicating core category, < > indicating categories and [ ] indicating subcategories): <<difference in daily lifestyle produced by changes in values through the experience of transplantation>>, <changes in values through the experience of transplantation>, <privileged environment to be able to receive transplant>, <memory of the experience in hospital>, <smooth day-to-day lifestyle achieved by transplantation>, <the sense of mission as transplant recipients>, <social role to play>, <thinking of the medical transplantation system>, <social belonging>; <family support for self-management>, <seeing a doctor as a maintenance method>, <the reflected lifestyle after operation>, <unchanged daily lifestyle>, and <self-management slackens along with recovery>.

Table 3. Core category, categories, and subcategories of values in LDLT patients
CategorySubcategory
  1. Core category: <<difference in daily lifestyle produced by changes in values through the experience of transplantation>>.

Memory of the experience in hospitalPain from complicated illness after transplant
Realization of recovery at last
Impatience and desire to recover after transplant
Medical staff and family stay together
Repeated thinking of complicated illness and re-transplantation after leaving hospital
Transplantation known after the fact
Fear of the situation just after transplant and slow recovery
Confusion in response to unexpected bad effects of transplant
A tough 3 years after operation
Uncomfortable feeling towards the reality of transplant
Informed of transplantation after operation and period until accepting it
Delight in physical recovery after the operation brought about from the long-term battle against the illness after operation
Smooth day-to-day lifestyle achieved by transplantationAppreciation of daily life after transplant
The progress seen as smooth
Changes in values through the experience of transplantationAppreciation of family and people around them
Conception of life obtained by transplant operation and kindness shown to people
Change of values by the transplant experience
The sense of mission as transplant recipientsThe sense of mission to society
Foresight for the future
The role as a recipient of transplantation
Readiness to receive transplantation
Care for donor's health
Social role to playFuture dream
The sense of values towards social role
Attitudinal change by transplantation
Release from social isolation
Thinking of the medical transplantation systemThoughts on state-of-the-art medical technology including transplantation
Requests for the medical transplantation system
Emotional failure and thoughts on being forced to give up future by illness exacerbation
Social awareness required by transplant recipients
Financial concerns regarding the expensive medications and treatment
Family support for self-managementAppreciation of the family
Thoughts and appreciation of the donors
Appreciation and concern of worrying parents
Thoughts on leading an independent life after transplantation and parents
Family support for self-management after operation
Anxiety of seeing a doctor regularly from a long distance
Social belongingSomething hobbies brought
Social cognition for participants
Privileged environment to be able to receive transplantThoughts on transplant operation
Privileged environment
Transplant operation as an event
Thoughts on donors
The reflected lifestyle after operationLifestyle after operation improved from before
Serious efforts in self-management
Daily life in keeping with the guidance given when leaving hospital
Understanding of guidance for life after transplant and self-management avoiding wish to drink
Increasing awareness to prevent complicating illness such as rejection
Self-management to prevent relapses
Increasing awareness of both donor's and own health
Perceptions on body and lifestyle just after the transplant operation
Unchanged daily lifestyleUnchanged lifestyle even after the operation
Continued daily lifestyle management as before the transplantation
Unchanged drinking habit even after transplantation
Self-management slackens along with recoveryTheir own way of self-management
Desire to drink and slacken self-management
Attitudinal change from receiving transplantation (the fledgling sense of mission)
Seeing a doctor as a maintenance methodClose attention to test data and physical signals
Seeing a doctor as a part of daily lifestyle

In looking at the relationship between categories, it was clarified that changes in values through the experience of transplantation produced differences in daily lifestyle after leaving hospital. This is shown in the form of a conceptual diagram in Figure 1, where the whole picture is explained.

Figure 1.

Three patterns of daily lifestyle of discharge after living-donor liver transplantations.

The recipients of transplantation are aware of their <privileged environment to be able to receive transplant>, and that <changes in values through the experience of transplantation> occur by the experience and realization of transplantation through <memory of the experience in hospital> and <smooth day-to-day lifestyle achieved by transplantation>. The <<difference in daily lifestyle produced by changes in values through the experience of transplantation>> is brought about by the perception and action of both internal influences as individuals receiving the transplantation and external influences, such as <the sense of mission as transplant recipients> and <social role to play>, and <thinking of the medical transplantation system>, <family support for self-management>, and <social belonging>. This leads to differences in daily lifestyles, such as <the reflected lifestyle after operation>, <unchanged daily life>, and <self-management slackens along with recovery>. These three patterns of daily lifestyle are supported by <seeing a doctor as a maintenance method> to avoid serious complicating illness.

Explanation of the core-category and categories

<<Difference in daily lifestyle produced by changes in values through the experience of transplantation>>

The transplant recipients’ perceptions of the transplant experience differentiate the changes in values, which lead to the three different types of lifestyles. The <changes in values through the experience of transplantation>, followed by the <smooth day-to-day life achieved by transplantation>, and <memory of the experience in hospital> are influenced by the categories <the sense of mission as transplant recipients>, <social role to play>, <thinking of the medical transplantation system>, <family support for self-management>, and <social belonging>. These differentiate the changed values and, as a consequence, the daily lifestyles. The subcategories are explained as follows.

<Memory of the experience in hospital>

This category consists of 12 subcategories: [pain from complicated illness after transplant], [realization of recovery at last], [impatience and desire to recover after transplant], [medical staff and family stay together], [repeated thinking of complicated illness and re-transplantation after leaving hospital], [transplantation known after the fact], [fear of the situation just after transplant and slow recovery], [confusion in response to unexpected bad effects of transplant], [a tough 3 years after operation], [uncomfortable feeling towards the reality of transplant], [informed of transplantation after operation and period until accepting it], and [delight in physical recovery after the operation brought about from the long-term battle against the illness after operation]. The subjects received transplants suddenly, with only a short time before operation, which made them very sensitive to the tough and long battle against the illness after their consciousness came back after the operation, which also depressed them by the uncomfortable physical condition. They remember the period of time with physical and mental pain just after the operation. However, they appreciate the medical staff and family being with them, and are delighted by their recovery.

<Smooth day-to-day life achieved by transplantation>

This category consists of two subcategories: [appreciation of daily lifestyle after transplant] and [the progress seen as smooth]. The subjects appreciate their smooth progress to recovery.

<Changes in values through the experience of transplantation>

This category consists of three subcategories: [appreciation of family and people around them], [conception of life obtained by transplant operation and kindness shown to people], and [change of values by the transplant experience]. The subjects deeply appreciate having the transplantation, feel responsibility as the recipients of such a special medical treatment, and show their readiness to take care of the liver given.

<Sense of mission as transplant recipients>

This category consists of five subcategories: [the sense of mission to society], [foresight for the future], [the role as a recipient of transplantation], [readiness to receive transplantation], and [care for donor's health]. The subjects have a sense of mission as recipients and they passionately think that they should set an example for the people coming after them. They also acknowledge that the existence of a donor enabled them to receive the transplantation and so they take it as their role to take care of the donor's health.

<Social role to play>

This category consists of four subcategories: [future dream], [the sense of values towards social role], [attitudinal change from transplantation], and [release from social isolation]. The subjects seek to live independently as a goal and try to broaden their social activity step by step.

<Thinking of the medical transplantation system>

This category consists of five subcategories: [thoughts on state-of-the-art medical technology including transplantation], [requests for the medical transplantation system], [emotional failure and thoughts on being forced to give up future by illness exacerbation], [social awareness required by transplant recipients], and [financial concerns regarding the expensive medications and treatment]. The subjects are worried about the cost of the life-long treatment and also talk about the hope that other people can earn the privilege to have transplantation.

<Family support for self-management>

This category consists of six subcategories: [appreciation of the family], [thoughts and appreciation of the donors], [appreciation and concern of worrying parents], [thoughts on leading an independent life after transplantation and parents], [family support for self-management after operation], and [anxiety of seeing a doctor regularly from a long distance]. The subjects, whether they live with family or separately, are very aware of the their family and try to live without making them worry. This leads them to direct attention away from themselves to others, and becomes the beginning of the broadening of their views.

<Social belonging>

This category consists of two subcategories: [something hobbies brought], and [social cognition for recipients]. Transplantation enables the subjects to look at society and broadens their thoughts from their own issues to others and their activities.

Differences in the three patterns of daily lifestyle

The <<difference in daily lifestyle produced by changes in values through the experience of transplantation>> requires the category <privileged environment to be able to receive transplant>, and it differentiates lifestyles such as <the reflected lifestyle after operation>, <unchanged daily lifestyle>, and <self-management slackens along with recovery>. A serious situation is avoided in the <unchanged daily lifestyle> by <seeing a doctor as a maintenance method>, which compensates for the lack of self-management.

<Privileged environment to be able to receive transplant>

This category consists of four subcategories: [thoughts on transplant operation], [privileged environment], [transplant operation as an event], and [thoughts on donors]. The subjects appreciate receiving the transplant operation, but also keep feeling the need for redemption from the donors in cases where the transplant operation takes place while the recipient is unconscious.

<Reflected lifestyle after operation>

This category consists of nine subcategories: [lifestyle after operation improved from before], [serious efforts in self-management], [daily life in keeping with the guidance given when leaving hospital], [understanding the guidance for lifestyle after transplant and self-management], [avoiding wish to drink], [increasing awareness to prevent complicating illness such as rejection], [self-management to prevent relapses], [increasing awareness of both donor's and own health], and [perceptions of body and lifestyle just after the transplant operation]. The physical changes that happened before and after the operation make the subjects reflect on their lifestyle before and improve on after the operation.

<Unchanged daily lifestyle>

This category consists of three subcategories: [unchanged lifestyle even after the operation], [continued daily lifestyle management as before the transplantation], and [unchanged drinking habit even after transplantation]. The subjects do not feel the need to change their lifestyle. Their responses are that the donor is a close family member and that it is understandable for the recipient to have a drink after a long period of time not being able to drink.

<Self-management slackens along with recovery>

This category consists of three subcategories: [their own way of self-management], [desire to drink and slacken self-management], and [attitudinal change by receiving transplantation (the fledgling sense of mission)]. The subjects have been careful over their improvement for approximately 3 years and they start to broaden their activities along with increased confidence in their condition. It is also the process of changes in lifestyle from one following the guidance to one based on their own ways of self-management.

<Seeing a doctor as a maintenance method>

This category consists of two subcategories: [close attention to test data and physical signals] and [seeing a doctor as a part of daily lifestyle]. The subjects are attentive to test results to maintain their physical condition after transplantation and they also see the hospital as a maintenance institution. This category supports the other three categories; in particular, it keeps the <unchanged daily lifestyle> from becoming a critical situation.

The daily lifestyles of more than 5 year survivors are classified into three patterns from the perspective of self-management: <reflected lifestyle after operation>, <unchanged daily lifestyle>, and <self-management slackens along with recovery>. The important difference between them is the change of values, in which awareness and action are the important elements.

DISCUSSION

Influence of realization and action on <<difference in daily lifestyle produced by changes in values through the experience of transplantation>>

The research derived the core category <<difference in daily lifestyle produced by changes in values through the experience of transplantation>> and three patterns of daily lifestyle, namely, <the reflected lifestyle after operation>, <unchanged daily lifestyle>, and <self-management slackens along with recovery>. The core category was affected by self and other awareness and action, leading to the changes in values. Here is the authors’ consideration of this aspect.

The process to transplantation is varied, and it takes time for symptoms to appear in the case of diseases of the liver, which is called the “silent organ”. However, the liver is the chemical factory in the body, and once its function gets worse, the impact on the whole body results in more than pain. Medical transplantation is the last treatment for end-stage liver disease in Japan, and most of the patients were low in level of consciousness and categorized as the worst C rank of the Child–Pugh score that is used to assess the prognosis of chronic liver disease, mainly cirrhosis, when they were referred to the transplant surgeon from the internist. The donors must be relatives within a third degree of kinship, and most of them were spouses, parents, or children. For this reason, all of the recipients appreciated the <privileged environment to be able to receive transplant>, knowing that the existence of living-donors enabled LDLT. They felt little by little the recovery from tough and painful days, as shown in <memory of the experience in hospital> and <smooth day-to-day life achieved by transplantation>. The appreciation and the feeling of recovery leads to <changes in values through the experience of transplantation>.

Awareness and realization of “transplantation” is, therefore, important for the changes in values. The values are the bases of evaluation and the important element leading to action. Therefore, differences in values created individual differences in judgment. This enables the recipients to feel radical improvement in the pain and fatigue affecting the whole body, which supports them in maintaining a self-managed lifestyle. Bravata et al. (1999) and Bona et al. (2000) studied the relationship between QOL and stress in liver transplantation recipients before and after the transplant, and reported a significant improvement after transplantation. This value is not unchangeable, and a new structure of values is formed through various experiences. The experience of LDLT requires all participants to change their values, albeit to varying degrees.

The recipients changes in values, which were influences experienced from daily lifestyle after leaving hospital, such as <the sense of mission as transplant recipients>, <social role to play>, <thinking of the medical transplantation system>, <family support for self-management>, and <social belonging>. The categories <sense of mission as transplant recipients> and <social role to play> reflect the self-centered realization and action of the recipients, and <thinking of the medical transplantation system>, <family support for self-management>, and <social belonging> reflect realization and action centered on others. Either influences – self-centered or others-centered – creates a response, enabling results to be obtained. The lifestyle after leaving hospital continues day to day with consideration of the results. Furthermore, small day-to-day actions and thoughts lead to gradual changes in the self and values. Takai (2008) mentioned that with aging, regardless of their sex and age, individuals appreciate others more and accept their own life experience, and they see importance in, and put effort into achieving, inner fulfillment rather than material success.

Three patterns of daily lifestyle

Three types of daily lifestyle were seen in this research, namely, <the reflected lifestyle after operation>, <unchanged daily lifestyle>, and <self-management slackens along with recovery>. Realization of the transplantation experience is differentiated by individuals and, as a result, the attitudes towards daily lifestyle were also diverse.

In <the reflected lifestyle after operation>, realization of the transplant experience is positive, and so the changes in values supported self-management positively with the release from the pain before operation and the appreciation for the donors. The recipients realized that the cause of the serious liver disorder was in their daily lifestyle before the operation and that the generalized feeling of fatigue and pain radically improved after transplantation. This reinforces the maintenance of self-management. Most of the patients showed an improvement in QOL in a study on health QOL before and after the operation conducted by Ortega et al. (2009). The remarkable improvement required them to change their lifestyles.

In the <unchanged daily lifestyle>, realization of the transplantation experience does not lead to changes in values, and the recipients dislike the limitations in daily lifestyle after the operation and continue their lives as before. However, they are mindful of physical changes and see a doctor as soon as they feel something is wrong. This has supported their daily lifestyle. It means that their lifestyle is not reckless.

In the lifestyle of <self-management slackens along with recovery>, during the long period of recovery, the recipients adhered to self-management as the guidance taught them at the beginning, but gradually along with the physical and mental release from pain and their return to work, the recipients changed their self-management in convenient ways by their own judgment. In the back-and-forth process of recovery and the process of broadening their lifestyle into society, the recipients have received various stimuli, and the prohibited drinking habit is also sneaking into their life. Social drinking is a means of communication as a traditional Japanese custom; therefore, it is considered that the difficulty of rejecting an invitation to drink might have an influence (Shimizu, Kim, & Hirota, 2008). It is difficult to reject the invitation to drink socially, which is a means of deepening relationships with colleagues, and can be more so after returning to work after absence. Gillian (1999) reported that the patient needed the support from the family and friends, and family and friends should be informed before the patient leaves hospital. It is significant how well people around the patient are informed about the transplantation and if their support can be obtained.

Rajentra, Neville, and Alexander (2008) reported that the QOL of 10 year surviving recipients of LDLT is better, but before that the recipients face problems such as the changes in physical functions and re-transplantation, and that it takes a long time to improve QOL and it is significant how time is spent during the process. It was seen that the action of <seeing a doctor as a maintenance method> was shared with all types of lifestyle. It complemented self-management, such as preventing infections, meals, and taking medications. It is necessary to utilize this consultation behavior as outpatient follow up, if we think of the difficulty of repeating high-level services such as transplantation. This suggests that it is necessary to understand the recipients’ realization of the transplantation experience and the process of recovery in supporting smooth self-management after leaving hospital.

The results of this study have found that the change of values was the basis of the continuous self-management. The appreciation of having the transplantation and the support of family, friends, and colleagues constituted the change of values in patients. It clear that the significant factors in maintaining self-management are appreciation of having the operation, daily self-care in maintaining good condition after the operation, and in well-functioning support around them.

Limitations of the study and suggestions for future studies

There is a limitation of generalization because the subjects in this study were all patients at the same clinic. However, it is meaningful that the study clarified aspects of the transplantation patients’ daily lifestyle, leading to continuous self-management after leaving hospital, which has not been revealed previously. Further research based on the findings may clarify the correlation between daily life after transplantation and self-management of patients, which will contribute to self-management guidance after transplantation.

CONCLUSION

The daily lifestyle of the transplant recipients is clarified in the patterns of <the reflected lifestyle after operation>, <unchanged daily lifestyle>, and <self-management slackens along with recovery>. The differences in the three types occurred from the differences in changes in values through the transplantation experience. The changes in values were affected by realization of the experience and the action, which come from various internal and external influences during the process of recovery. All of the recipients used consulting behavior to complement self-management after leaving hospital.

ACKNOWLEDGMENTS

The authors would like to thank all of the participants in this study. This work was supported by The Toyota Foundation (2007–2009).

Ancillary