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aring For Overseas Liver Transplant Recipients: Taiwan Primaryamily Caregivers’ Experiences in Mainland China

.M. Chen, F. Jong Shih, C.L. Chang, I.H. Lai, F.J. Shih, and R.H. Hu

ABSTRACT

Introduction. This study explores the motivations of overseas liver transplant recipient (OLTR)families of Taiwanese OLTR who undergo the procedure in mainland China. We report thewaiting time to receive the transplant in mainland China as well as the rational and service.Patients and Methods. This exploratory qualitative method reflects guided face-to-face,semistructured interviews with families members of OLTRs. Data were subjected tocontent analysis.Results. We interviewed 19 OLTR family members (15 females and 4 males who werebetween 29 and 71 years of age; mean 55.1 years) regarding 19 patients who had (17 males and2 females who were between 36 and 71 years of age, mean, 54.6 years). The OLTR underwenttransplantation in three cities in mainland China: Tianjin, Shanghai, and Guangzhou. Afterarrival the average waiting time was 33.1 days. Subjects reported the following reasons to helppatients undergo the procedure in mainland China: (1) it is difficult to have the procedure inTaiwan; (2) the desire to extend life; and (3) there is no domestic living donor.

Seven reasons for serving as OLTR supportive family members were identified: (1) Therole and obligation in the marital relationship; (2) a close bloodline relationship; (3)insufficient manpower; (4) an individual’s availability; (5) evasion of responsibility by otherfamily members; (6) compensation for inadequate caring efforts earlier in life; and (7) anunwillingness to disturb other relatives’ lives. Finally, the following support for the OLTRwas reported: providing company during medical treatment/doctor visits, food preparation,massage, daily assistance, medical care, and psychological support.Conclusions. Taiwanese OLTR family members’ perspectives throughout the transplantprocess may provide better understanding of living experiences and concerns during the

stages of overseas liver transplantation.

From the Institute of Clinical and Community Health Nursing(H.M.C., I.H.L.), the School of Nursing (F.J.S.), and the EducationCenter for Humanities and Social Sciences (C.L.C.), NationalYang-Ming University Taipei, Taiwan; the Department of Nurs-ing, Tri-Service General Hospital (H.M.C.), Taipei, Taiwan; theDepartment of Information Management, National Central Uni-versity, Taoyuan, Taiwan; Chang Gung Institute of Technology(F.Jong S.), Taoyuan, Taiwan; and the Department of Surgery,National Taiwan University Hospital Taipei, Taiwan (R.H.H.).

Address reprint requests Fu-Jin Shih, School of Nursing,National Yang-Ming University. fjshih@ym.edu.tw. Rey-HengHu, Department of Surgery, National Taiwan University Hospital,

IVER transplantation has become an effective therapyfor many patients who have end-stage liver disease

ESLD). According to the United Network for Organharing1 and the Organ Procurement and Transplantationetwork2 107,638 Americans await organ transplantation

s of May 25, 2010, including 16,015 patients who arewaiting liver transplantation. In the meantime, Theaiwan Organ Registry and Sharing Center statistics fromay 25, 2010, showed 973 Taiwanese awaiting liver trans-

lantation, second in number only to kidney transplanta-ion. Influenced by Asian culture and religion, Taiwaneseenerally place importance on traditional concepts such asisturbing neither the corpse nor the body as it is inheritedrom parents.4–7 Thus, the domestic organ donation rate is

nly 6.6 people per 1,000,000,4 which is a far lower rate than Taipei, Taiwan. rhhu@ntu.edu.tw

2010 by Elsevier Inc. All rights reserved. 0041-1345/–see front matter60 Park Avenue South, New York, NY 10010-1710 doi:10.1016/j.transproceed.2010.09.068

ransplantation Proceedings, 42, 3921–3923 (2010) 3921

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3922 CHEN, SHIH, CHANG ET AL

hat in Western countries. However, when facing the highorbidity from ESLD, many patients become dispirited

nd choose overseas liver transplantation (OLT) as anption for survival.However, removal and reconstruction of a liver often

auses chaos in the patients’ internal balance. Meanwhile,T recipients (OLTR) must follow strict medical and

elf-care protocols to manage complex pre- and post-ransplant discomforts in physio-psychosocial and spiritualimensions. As such, OLTR family members’ support andttendance are important to successful recovery. Neverthe-ess, nearly two-thirds of Western liver transplant patient’saregivers are employed part-time or full-time in additiono the services they provide to their loved ones.8 Serving asprimary family caregivers becomes a challenge for familyembers.Recently, greater communication between mainland

hina and other countries, including Taiwan, has beenncouraged; thus, having OLT performed in mainlandhina has become an option for Taiwanese. Patients whoave received liver transplant\ill\ are greatly influenced byheir health conditions, quality of life, and even the threatf mortality during the pre-transplant and posttransplanttages. Nevertheless, until now, little information has beenvailable to organ transplant health professionals aboutthnic Chinese OLTR family members’, living experiencesarticularly in mainland China. This study explored Tai-anese OLTR family members’ perspectives concerningotivations for an OLT in mainland China, the waiting

ime in mainland China, and the rationale and serviceuring the process.

ATIENTS AND METHODS

his exploratory qualitative research method examined. OLTRamily members who were identified as a recipients’ primary familyaregiver. Subjects underwent face-to-face semistructured inter-iews. The data were evaluated by content analysis.

ESULTSemographic Data

he 19 OLTR family members (15 females and 4 males,ho were aged between 29 and 71 years, mean, 55.1 years)ere responsible for 19 patients who had ESLD (17 malesnd 2 females) who were aged between 36 and 71 years,ean, 54.6 years).

laces for OLT in Mainland China and Averageaiting Time

he transplantation procedures were performed in threeities in mainland China: Tianjin (n � 15), Shanghai (n �), and Guangzhou (n � 2). The average waiting time forLT was 33.1 days after arrival in mainland China.

OTIVATIONS FOR OLT

he following factors motivated patients and their families

o seek OLT in mainland China: It was difficult to have the c

rocedure performed in Taiwan because of a lack of donorsnd failure to meet LT standards in Taiwan (n � 18;4.7%). The patients had a desire to extend life and byoing so wanted to allow their children to experience aomplete family (n � 7; 36.8%). For some, a domestic livingT donor was not an option due to fears of disrupting their

elatives’ body functions and social roles (n � 6; 31.6%).

verage Number of OLTR Family Members Through therocess of OLT

he average co-caregiver number of OLTR family mem-ers in four sequential stages during the process of OLTas: (1) domestic waiting stage (1.0 OLTR family member),

2) overseas pre-transplant stage (1.7 OLTR family mem-ers), (3) overseas posttransplant stage (2.6 OLTR familyembers), (4) resuming medical care in domestic country

tage (1.6 OLTR family members).

amily Members Reasons for Serving as Primary Caregiveruring the Process of OLT

even reasons family members provide for serving as pri-ary caregiver for the patient were: (1) role and obligation

n the marital relationship; (2) close bloodline relationship;3) insufficient manpower; (4) more available than otheramily members; (5) evasion of responsibility by otheramily members; (6) compensation for inadequate caringfforts earlier in life; and (7) unwillingness to disturb otherelatives’ lives. For the spousal relationships, their specificeasons were: (a) their role and obligation in the maritalelationship (n � 13; 68.4%); (b) an unwillingness toisturb other relatives’ lives (n � 6; 31.6%); (c) they wereore available than other family members (n � 3; 15.8%);

nd (d) insufficient manpower (n � 2; 10.5%). For thearent-child relationship, the reasons were: (a) close blood-

ine relationship (n � 2; 10.5%); (b) unwillingness toisturb other relatives’ lives (n � 1; 5.3%); (c) evasion ofesponsibility by other family members (n � 1; 5.3%); andd) compensation for inadequate caring efforts earlier inife (n � 1; 5.3%). Lastly, for sibling relationships, theeasons were (a) they were more available than other familyembers (n � 1; 5.3%), and (b) or insufficient manpower

n � 1; 5.3%).

LTR Family Members’ Roles in Patient Care

amily members reported providing the following care forhe OLTR: company during medical treatment/doctor vis-ts, food preparation, massage, daily assistance, medicalare, and psychological support.

ISCUSSION

in9 reported that 92.9% of Taiwanese OLTR underwentLT in mainland China (0.4% chose the United States,ong Kong, or Thailand; and 5.8% did not identify the

ocations). The proposed reasons were the geographic and

ultural similarities between Taiwan and mainland China,

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OVERSEAS LIVER TRANSPLANT RECIPIENTS 3923

s well as the lower transplant costs than compared withther countries. In this project, the three preferred cities forLT were all in mainland China. The average wait time for

eceiving an OLT in mainland China was 33.1 days, whichas significantly shorter than that reported for US citizens:to 3 years (30%), 3 to 5 years (15%), and 5 years (22%).10

his may be contributing factor for Taiwanese OLT pa-ients’ preference for having the procedure performed inainland China.Some OLT patients who fail to meet the appraisal in

aiwan argue that they have a right to OLT for a betterhance of survival and for hope in the future. In this study,wo subjects decided to have OLT because of familybligations for their dependent young children and theiresire to have an integrated family in the future, which is an

mportant blessing for most ethnic Chinese including Tai-anese OLTR and their family members.Western OLTR often cited their spouses as the primary

aregivers.11 However, the rationale for serving as therimary caregiver for an OLTR in Taiwan were not iden-ical among patient/caregiver relationships in this project.

ultiple relationships were identified in this study: spouse84%), parent-child (11%), and brother-brother relation-hip (n � 1). The major deciding factors are primarily theatient’s marital status, then their bloodline, rather than theamily member’s state of health. For married patients, theirLTR family caregivers are more likely to be their spouse;

nd for the unmarried patients, their parents or siblings.Meanwhile, most OLTR family members who were in-

erviewed for this project attended to the recipient through-ut the overseas post-OLT stage and the resumption ofedical care in Taiwan. They all provided company duringedical treatment/doctor visits, food preparation, and psy-

hological support. A family member providing massageppeared only in the husband-wife relationship. Thesefforts were reported to have stabilized Taiwanese patientshysio-psycho-spiritual status during the pretransplant andosttransplant stages by managing most of the difficultieselated to health issues and social contexts in an unfamiliarity and country.

This phenomenon might be because most ethnic Chineseelieve that the family is an integrated system. When therere events or crisis in the family such as someone becomingospitalized, the entire family is often affected; the func-ions and integrity of the family are then upset.12 In thisase, other family members are also mobilized to practicehe following roles and functions to sustain the integrity of

he entire family: creating possible resources to help the C

eeded family members (dependent family members inarticular), allocating family responsibilities, acceptinghange, adapting to unexpected crises, and helping eachther by gathering stakeholders to resolve problems andifficulties.13

Finally, the relationship of ethnic Chinese families areften complex and not easily understood by Westerners.aiwanese OLTR family members’ perspectives on theotivations for using mainland China were primarily the

horter waiting time for OLT. The major family caregiversheir background roles, and their concerns as well asxpectation may afford effective consultation about OLT asell as the development of teaching/caring protocols foratients and their families.

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