Narratives of Liver Transplantation

雪绒花

Abstract







The objectives of this exploratory study are threefold: (1) describe and analyze individual perceptions of end-stage liver disease and liver transplant; (2) reconceptualize quality of life based on the perspective of those who have experienced liver disease and transplantation; (3) generate research hypotheses suitable for systematic testing.  A sample of six individuals who experienced end-stage liver failure and liver transplantion were asked in an interview to tell the story of their experience.  These narratives were transcribed and content analyzed.  The study concludes based upon the interview data that quality of life is best measured with respect to social norms.  However, the transplantation experience compels some individuals to transcend established norms.

雪绒花

Introduction







This study uses a short-term, ethnographic approach to examine how patients and families experience dramatic life events, end-stage liver disease and liver transplantation.  The goals of this exploratory study are to: (1) describe and analyze individual perceptions of end-stage liver disease and liver transplant; (2) redefine quality of life based on the perspective of those who have experienced liver disease and transplantation; (3) generate research hypotheses suitable for systematic testing.  This study should be seen as a pathway to facilitate long-term, ethnographic research on chronic disease, organ failure and organ transplantion.  In addition, the hope is that the knowledge generated by this research will benefit organ transplant patients, their families, and their care-givers.
  
  



The Demographics of Organ Transplantation







As of October, 1998 there were 58,760 patients waiting for a transplant in the United States (UNOS, 1998).  In all, 19,998 transplants were performed in 1997, including 11,409 kidney transplants, 4,166 liver transplants, 2, 292 heart transplants, and numerous pancreas, lung, heart-lung, and intestine transplants (UNOS, 1998).

These transplants were performed at the 272 transplant centers in the United States.  Transplant centers tend to be concentrated in highly populated, urban areas and a high percentage of these centers are located at research-based universities.

There were 8,970 total organ donors in 1996.  From these donors nearly 20,000 organs were recovered, and over 12,000 kidneys, 4,000 livers, and 2,000 hearts were transplanted.  Approximately 90% of these donors died as a result of cerebrovascular disease (stroke) or head trauma (UNOS, 1997).

Of 72,386 patients on the waiting list for organ transplantation in 1996, 4,022 died.  This is a significant increase from the 1,504 deaths on the waiting list in 1988.  Nearly half (44.7%) of those who died waiting for a transplant in 1996 were in need of a kidney; 23.6% were waiting for a liver and 18.5% were waiting for a heart (UNOS, 1997).

These waiting list mortality statistics are related to the increase in median waiting times for organs.  The largest net increase in waiting time was for kidneys.  In 1988, the wait was 400 days; it is now over 800 days.  The most dramatic increase, however, was in the waiting time for liver registrants.  It increased over ten times, from only 33 days in 1988 to 366 days in 1996.  These waiting times vary tremendously by region, however.  This has to do with many factors, including population density and the availability of organ procurement resources.  Waiting times are often much longer for first-time transplant patients (particular liver patients), than for patients who have had previous transplants.  This is due to the extreme urgency of many organ re-transplants (UNOS, 1997)

Perhaps the most important statistical measures associated with organ transplant are graft and patient survival rates.  One-year survival rates are fairly solid measures of transplant success.  Graft survival, simply described, is a measure of whether or not the transplanted organ continues to function successfully within the patient.  Patient survival is a measure of whether the patient lives.  Patient survival rates are always higher than graft survival rates because of opportunities for re-transplant, and the availability of other procedures that can prolong life after organ failure (for example, kidney dialysis). However, survival rates do not take into account the quality of life for a patient.  They are often clouded by diverse factors that influence transplant outcomes (donor age, recipient age, race, diagnosis etc.).  These issues must be recognized when considering graft and patient survival rates.

One-year graft and patient survival rates improved between 1988 and 1995 in all organ categories.  One-year patient survival rates for those who received kidneys from living donors are nearly 98%.  Lung transplants had the greatest overall improvement, whereas heart transplants had the least improvement.  Survival rates for multiple-organ transplants also increased; the one-year survival rate for heart-lung transplants from 53% in 1988 to 78% in 1995 (UNOS, 1997).

The statistics presented above were intended to provide a general background for understanding the extreme breadth of organ transplantation in American society.  American families will continue to have to make decisions about organ donation and transplantation.  Organ transplantation is an issue that will not soon go away.  The shortage of organs has already precipitated changes in public policy, particularly pertaining to the criteria for receipt of an organ and the politics of the waiting list.

Large scale advertising, funded by a host of non-profit institutions and individual and corporate donations, attempts to spread awareness about organ transplantation with the hope of recruiting more donors.  Billboards can be seen on the roadside, and posters adorn the walls of shopping centers.  Medical dramas on television continually present some of the dilemmas faced by the transplant community.   Television commercials petition viewers to register as organ donors and encourage them to talk openly with family members about the possibilities for organ donation.
  
  



Liver Disease and Liver Transplantation







The liver itself is an amazing organ that performs a variety of vital functions.  It converts and stores vitamins, minerals and sugars for use by the body, and it is responsible for the creation of bile.  The liver refines toxic chemicals including alcohol and other drugs, and it is responsible for the creation of blood, proteins, and clotting factors.

Chronic liver disease is the tenth leading cause of death in the United States.  In 1996 the Center for Disease Control reported 25,135 deaths from chronic liver disease.  The current death rate is approximately 9.5 deaths per 100,000 population (CDC, 1998).

There are many diseases that affect the liver that can be categorized as either chronic or acute conditions.  The most common are often categorized under the broad term, cirrhosis.  Cirrhosis is the disease process by which normal liver cells are damaged and replaced by scar tissue.  This process can take place rapidly, or over a long period of time.  Often, cirrhosis is caused by the destruction of the bile ducts of the liver.

Among the most dangerous diseases that affects the liver are Hepatitis B and Hepatitis C.  These are viral, communicable diseases that may lead to cirrhosis and sometimes cancer of the liver.  Approximately 5,000 people die annually from Hepatitis B.  The future of these diseases is distressing.  About 125,000 new infections of Hepatitis B occur each year in the United States (ALF, 1998).  The Centers for Disease Control (CDC, 1998) estimates that 3.9 million Americans are infected with Hepatitis C; 12,000 people die annually from Hepatitis C.  There will be an estimated 38,000 deaths annually from Hepatitis C by the year 2010 (ALF, 1998; CDC, 1998).

Another common cause of liver failure that necessitates transplantation is alcoholic liver disease.  Large amounts of alcohol consumed over extended periods of time can cause significant damage to the cells of the liver.

Liver transplantation has become a widespread treatment for chronic liver disease.  One-year survival rates are approximately 85%, but this general figure varies tremendously across different diagnoses (UNOS, 1998).  Most liver recipients (73.6%) are between the ages of 35 and 64; 76% of the 4062 recipients in 1996 were classified as White, 9.0% Black, 9.9% Hispanic, 3.3% Asian, and 1.8% belonged to other racial groups (UNOS, 1997).  Liver recipients were disproportionately male (58%); only 42% were female.  Approximately one in ten of the livers transplanted in 1996 were re-transplants (UNOS, 1997).

The transplantation of the liver is a life-saving procedure that must be viewed as part of a broader therapeutic process.  This process includes drug therapy, nutritional maintenance, and exercise management in addition to the surgical procedure.  Many therapies focus on alleviating some of the symptoms of a failing liver.  The range of symptoms faced by  individuals with chronic liver disease is tremendous.  Symptoms that may appear are (ALF, 1998):

• Loss of appetite
• Extreme fatigue, lack of energy
• Nausea and vomiting
• Weight loss
• Enlargement of the liver
• Jaundice (skin and whites of eyes look yellow)
• Itching
• Ascites (abdominal swelling caused by fluid retention)
• Vomiting of blood
• Increased sensitivity to drugs
• Disorientation
• Encephalopathy (problems with mental function such as short-term memory loss)

Patients may not experience all of these symptoms.  Some symptoms are more likely to accompany certain diseases than others.  For example, severe ascites is more common among alcoholic liver patients.  The onset of symptoms is likely to be gradual for individuals with chronic liver disease.  Symptoms can be both physically, and psychologically distressing, and some symptoms may persist for a considerable period after a successful transplant.  The symptoms of liver failure have undeniably negative consequences on the quality of a person's life.
  
  

雪绒花

Organ Transplantion and Quality of Life(1)







The statistics above have shown that organ transplantion saves the lives of many people.  It is a technological innovation that will continue to be embraced by society.  Many individuals go on to live fifteen or twenty years and more after a successful transplant.  Such numbers are indeed impressive, but many scholars have reminded us of the need to assess the quality of life for organ transplant recipients.  Much concern has been raised about the utility of high-cost technological innovations in medicine.  In an age of rising health care costs, policy makers have focused attention on expensive procedures such as organ transplantion.    The range for the estimated total cost of a liver transplant is $225,000 to $302,000 (ALF, 1998).

Concerns about cost have aroused questions among researchers and policy makers alike about what the quality of life is after an organ transplant.  With the usage of immunosuppressant drugs like cyclosporine, and the concomitant increase in transplant survival rates, a veritable deluge of research on organ transplant and the quality of life ensued.  Unfortunately, a thorough review of the literature reveals many inconsistencies and inadequacies (Joralemon and Fujinaga, 1996).

Quality of life (QOL) studies have been used in weighing kidney transplantation against dialysis, trials of new immunosuppressant drugs, and in substantiating arguments that advocate for the transplant of all organs (Joralemon and Fujinaga, 1996).  Joralemon and Fujinaga (1996) describe no less than a "blizzard" of interdisciplinary instruments that have been used to study organ transplant and the quality of life.  Unfortunately there appears to be a complete lack of consensus as to what instruments can best measure QOL.  One research team –  presumably in an attempt to avoid this problem – mailed a packet of 11 separate instruments to a sample of pancreatic transplant recipients; sadly, the most interesting component of their research was the 96% response rate (Milde et al., 1992).  As of late, studies on organ transplant have shown a slight preference for the Sickness Impact Profile and the Nottingham Health Profile as instruments (Adams et al., 1995; Bonsel et al., 1992; Collis et al., 1995; Gavaler et al., 1995; Tarter et al., 1991).

One of the flawed assumptions that pervades much of the research on organ transplant and quality of life is in the conceptualization and operationalization of quality of life.  Most studies are highly reductionistic in assuming that the entirety of human life can be measured by discrete quantifiable characteristics that have little or no interaction with one another (Joralemon and Fujinaga, 1996).  Another obvious assumption made is that asking patients and their families a series of fixed response survey questions about things such as health, work, income, and activity level, among other resources,  is a reliable and valid method for assessing QOL.

In the studies reviewed by Joralemon and Fujinaga sample size was another problem.  Despite the vast number of respondents currently available in nearly all organ categories, there are few studies with a sample of greater than 100.  Of 58 studies reviewed, the mean sample size was 83 and the range was between 10 and 859.  Although the usage of small samples is acceptable for an intensive, in-depth study of QOL and organ transplantation, the authors found that "virtually without exception QOL studies rely exclusively on brief, mailed questionnaires or short interviews: they do not give contextually rich descriptions of the recipients' life circumstances." (Joralemon and Fujinaga, 1996, p. 1261).

A lack of rigor exists both across and within many QOL studies on organ transplantation in terms of when respondents are contacted, whether one month or one year post-transplant.  The majority of the studies are cross-sectional.  Recipients were often recruited based on convenience sampling.   Longitudinal data is scarce.

Another important inadequacy of the QOL research on organ transplant are the conclusions drawn from the data obtained.  A recognition is usually presented by each study that the generalizability of findings is rather limited due to sample size, cross-sectional design, and inadequate instrumentation.  However, the generalizations actually made after such a disclaimer can be broad and sweeping.  Overwhelmingly, these studies conclude that the QOL for organ transplant recipients is quite good.  This may not initially seem problematic.  Nonetheless, complacency is more the case than consistency.

Many studies completely disregard the post-transplant elation that patients have as a source of distortion when subjectively assessing life satisfaction.  Patients are disinclined to give negative replies when they have an emotional attachment to the subject matter of the questions.  Somewhat disconcerting is one study's unexplained final conclusion that transplant recipients experience a higher QOL than does the healthy population (Leyendecker et al., 1993)!
  
  



Liver Transplantion and Quality of Life







A review of other research that has been done on liver transplant reveals some strong parallels to the findings of Joralemon and Fujinaga (Belle et al., 1997; Bonsel et al., 1992; Collis et al., 1995; Hunt et al., 1996; Stone et al., 1997; Tarter et al., 1991; Wood et al., 1997).  There are, however, some interesting studies that are more qualitative and ethnographic in nature (Johnson & Hathaway, 1996; Newton, 1997; O'Mullan, 1997; Thomas, 1993; Wainright, 1997; Wainright, 1995).

Despite the availability of large populations of liver transplant recipients since 1990, sample sizes in quality of life research remain relatively small, and studies continue to employ a variety of research instruments that ask closed-ended questions in a questionnaire type format.  Only one study (Belle et al., 1997) had a sample of over 100.  This study was longitudinal and had a sample of 346 liver recipients from multiple transplant centers.  All other studies had data from less than 60 respondents.  As suggested by Joralemon and Fujinaga (1996), these small sample sizes would not have been problematic had the research gone beyond analysis of survey-level data.  Note that too large of a sample could be a detriment to the success of more qualitative and ethnographic research.

The conceptualization of quality of life across these studies is inconsistent.  Many recent studies recognize that quality of life is a multi-faceted concept and employ a variety of instruments measuring several dimensions, for example: levels of activity, employment, psychological adjustment, socioeconomic adjustment, family, and spirituality (Belle et al., 1997; Bonsel et al., 1992; Collis et al., 1995; Hunt et al., 1996; Tarter et al., 1991; Wood et al., 1997).  It is a rare case in which any of these studies use the same instrument to measure the same aspect of quality of life.  Further, not one of these studies allows patients to specify exactly what they think constitutes high or low quality of life.

Yet another distressing inadequacy of research on liver transplant and the quality of life lies among studies that are longitudinal.  Typically, studies contact respondents at least twice, before and after transplantation (Belle et al., 1997; Tarter et al., 1991).  Those studies that collect data several times over extended periods, however, only collect data from respondents once before their transplant.  The major difficulty with this approach is the lack of consistency of health status and quality of life across the pre-transplant population.  At the time of evaluation, the health of some patients is considerably worse than for others.  One study reports that baseline questionnaires were completed by respondents anywhere from 0 to 33 months before transplantation, with a median of 103 days before transplantation (Belle et al., 1997).  Although this may not initially seem important, it is very problematic.   The assumption is made that the completion of a single questionnaire at one point during an individual's time on the waiting list is a valid assessment of the quality of life before liver transplantation (Bonsel, et al., 1992; Wood et al., 1997).

One of the better studies measured conception of health, sense of coherence, and hardiness and the relationship of these concepts to whether transplant patients returned to work (Newton, 1997).  Conception of health is the personal meaning of health for individuals.  Sense of coherence is an expression of the extent to which one has a feeling of confidence that things will work out as expected.  Hardiness is a measure of whether an individual believes that they can control the events of their experience, that they can feel involved in their own life activities, and that change is an exciting challenge.  The research includes a rigorous design; a sample of 230 transplant recipients was evaluated using a variety of focused instruments.  Concepts and goals for the research are clearly defined presented.  The study found a direct causal relationship between conception of health, coherence, and hardiness and the likelihood of returning to work.  Most of the 230 transplant patients in the study had a high conception of health, moderately strong sense of coherence, and high level of hardiness.  Also of interest is the finding that gender had no relationship to conception of health, coherence, hardiness, or return to work for transplant recipients (Newton, 1997 pp. 99-102).

The portrait of life for individuals with end-stage liver failure as derived from the majority of quality of life research to date is rather trite.  It is a portrait in which patients and families suffer tremendously before transplantation.  They are then rescued by the technological innovations of modern medicine and the professional masters of these innovations.  However, these overwhelmingly positive conclusions are incomplete - if not inaccurate - depictions of what life is like for patients and families forced to cope with end-stage liver failure and liver transplantation.

A few select research studies have been done that are considerably more accurate in their depiction of reality.  Wainwright (1995, p.1068) describes the situation nicely when he cites Sensky and Catalan (1992): "to a patient an illness is an experience, not easily reduced to a list of variables measured in the laboratory or clinic."  Wainwright also points out that in a study on liver transplant and the quality of life by Lowe et al. (1990), several of the patients actually requested the opportunity to discuss their positive sense of well-being in detail (Wainright, 1995, p. 1068).

The study by Wainwright (1995) describes the human struggle involved in liver transplantation.   It uses a grounded theory approach and discovers a series of stages of transformation that patients and families experience.  These stages are: (1) Making the Decision; (2) Receiving a liver transplant; (3) Recovering in the hospital; (4) Improving at home; (5) Feeling well again; (6) Reciprocating.  Each stage consists of sub-stages.  For example, stage four consists of: (A) Entering a new world; (B) Returning to normal; (C) Needing support.  The study found that although health professionals were universally praised, most of the knowledge that patients had about liver transplantation came from interactions with other patients (Wainwright, 1995, p. 1074).

More recently, Wainwright used a similar method to qualitatively assess the quality of life before transplantation (Wainwright, 1997).  This research describes life with chronic, end-stage liver disease.  Again, the use of grounded theory generates stages and sub-stages.  The author concludes that living with chronic liver disease consists of two stages: (1) Becoming ill, and (2) Not living.  The first stage is broken down into: (A) Interpreting; (B) Going downhill; (C) Attitudes of society; (D) Managing your illness.  The second stage consists of: (A) Losing independence; (B) Being disabled; (C) Wanting a normal life (Wainwright, 1997, p. 49).

Research done by Johnson and Hathaway (1996) employs a qualitative phenomenological approach.  A single individual was interviewed.  Despite this surprisingly small sample, seven categories of experience were developed from the informant's testimony: conflict, financial aspects of transplantation, control, self-perception, support network, spirituality, and gratitude (Johnson & Hathaway, 1996). These same categories were found in another study with a sample of 13 patients that also incorporated a phenomenonlogical method (Thomas, 1993).
  
  



Areas for Further Research







In addition to vividly exposing the weaknesses of QOL research on organ transplantation, Joralemon and Fujinaga (1996) put forth a set of guidelines for future research.  The approach that they advocate is ethnographic in nature, and has its roots in medical anthropology.  "Anthropology's general sensitivity to the interconnectedness of social life, and its emphasis on holistic understandings of human behavior, militate against reductionist interpretations of patients' perspectives (p. 1265)."  The authors present five main principles to pilot new research on the quality of life for transplant recipients:

1. Minimal contact with transplant center staff, voluntary participation, and the protection of anonymity.
2. Recipients would collaborate with the researcher in designing the study.
3. The researcher and the patient would discuss a shared definition of a good quality of life.
4. The researcher would seek to include family, friends, and other relevant individuals in the study in order to increase the breadth of measurement.
5. With consent, medical background information could be obtained.
The authors are committed to the viewpoint that a qualitative, ethnographic approach is the most appropriate way to study organ transplantion and the quality of life.  They also see "great promise" in the use of narrative analysis for short-term ethnographic research.
It is interesting that the categories of experience developed with the phenomenological approach are distinctly different from the grounded theory approach employed by Wainwright (1995;1997).  This difference merits investigation.

A number of researchers suggest that a study of transplant patients of different ethnic, racial, and religious backgrounds would be of significant value (Thomas, 1993; Wainwright, 1997; Wainwright, 1995).  In her study on differing psychosocial outcomes for heart and liver transplant patients, O'Mullan (1997) calls for more research that compares conditions for recipients of different organs.  She also sees a need for work on how cultural beliefs may influence patient outcomes.

Wainwright proposes that further qualitative research be done on end-stage liver disease and liver transplant.  He suggests an evaluation of patient education programs and a study that would study the "culture" of liver transplant support groups.  He is also in favor of further research on the experience of liver transplant to confirm his conclusions and perhaps employ a larger sample.

The possibilities for further research on organ transplant are many.  However, the confines of a Master's Thesis require the research be well-focused.  This study proposes to use a strong theoretical background in combination with an innovative research method in order to contribute to the development of knowledge about recipient perspectives on end-stage liver disease and liver transplantation.  The next two chapters will provide a description of the theoretical framework and the research methods.

雪绒花

This study draws upon theories and models in medical anthropology and medical sociology to generate a greater understanding of the quality of life for liver transplant recipients. In particular, the biocultural model of medical anthropology offers a unique perspective, unattainable within the biomedical system used by today's modern medicine and many social science researchers. Explanatory models of illness, the sick role, and the health belief model will also be included in this discussion

.

The Biomedical System

The practice of medicine or healing is a cultural universal.  Anthropologists have studied the cultures of the world and found that societies have systems of ethnomedical beliefs and knowledge which serve to reinforce cultural guidelines for health and illness behavior.   Some scholars choose to contrast ethnomedicine with the established and standardized regimens of Western medicine.  However, American society is no exception, and the biomedical system employed here should also be studied as a kind of complex, cultural or ethnomedical system (Armelagos et al., 1992; Engel, 1977; Freund and McGuire, 1992; Rhodes, 1990).

The primary ethnomedical beliefs in American society are those of the biomedical system.  It is the driving force behind most of Western medicine, and reflects an elaborate cultural system.  The defining characteristics of this system will be discussed here.

A crucial characteristic of the biomedical system stems from its history.  The 17th century ideal of Cartesian dualism, in which there is a separation of mind and body, is a fundamental assumption of biomedicine.  The body is a part of the physical world, and diseases are bounded disorders that must be treated within this realm (Hewa and Hetherington, 1995).  This assumption was reinforced when discoveries in bacteriology by Louis Pasteur and Robert Koch led to the development of the germ theory of disease.  These along with other advances in areas like biochemistry and surgery were sufficient to bind physician allegiance to scientific, clinical medicine (Hewa and Hetherington, 1995; Mishler, 1981).

Biomedicine is an expansive realm; it has influence in the clinical setting, the academic setting, and in research and development.  Since the 1930's the path of biomedicine has been largely determined by the American Medical Association (AMA).  The AMA is a professional organization that represents the interests of its constituent physicians.  Historically the position of the AMA has been tied to a kind of free enterprise model.  For example, costs would be paid for by the patient, patients would be free to choose their physicians without restriction, and the medical profession would have control over all aspects of medical care.  Today, the scene is somewhat different.  The high cost of medical care has involved governments, insurance companies, and corporate profiteers in medical decision making.  Many would argue that the management of medical care has loosened physician control and diluted the patient-practitioner relationship.  An overall concern with professionalism and scientific neutrality on the part of physicians has weakened the biomedical system in the face of these challenges; rates of public approval of medicine are on the decline (Cockerham, 1995, p. 184).

Hahn and Kleinman (1983) argue that the consequence of thinking along Cartesian lines is a physical reductionism that permeates the biomedical system.  Social and psychological issues that may impact a patient either directly or indirectly are neglected and ignored.  Illnesses are reduced to biochemical and neurophysiological malfunctions (Freund and McGuire, 1991).  For example, in the case of organ transplantation, patients are required to have periodic blood draws for laboratory testing.  Lab results are presented statistically and compared with biochemical standards.  Post-transplant contact with physicians may be non-existent if patient lab values match accepted standards.  Despite the presence of nurse case managers and social workers on the transplant center staff, the social and psychological adjustment of transplant recipients and their families is hardly monitored.

Another characteristic of the biomedical system is the doctrine of specific etiology (Mishler, 1981).   In this paradigm, diseases are seen as “deviations from the norm of measurable biological (somatic) variables (Engel, 1977; Mishler, 1981).”  Alternative definitions are largely ignored.  Diseases are diagnosed in an interaction where the patient’s identification of physical symptoms is matched with physician knowledge about how specific diseases cause specific symptoms.  The cause of a disease then is reduced to either a specific toxin or pathogen.  Treatment is directed both at the alleviation of physical symptoms, and at the destruction of the specific causative agent. Most disorders are understood in terms of such simple cause-effect relationships.

With the extensive focus on diagnosis on treatment, preventive strategies are largely ignored.  Patients continue to be concentrated in large acute care facilities.  This continues despite increases in the prevalence of chronic long-term disorders.  Diseases are viewed as static entities rather that dynamic processes.  The information base for biomedical diagnoses is mostly quantitative, and tends to ignore more anecdotal, qualitative data.  Nearly all phases of medical care are dominated by the doctrine of specific etiology.  It has been argued by Mechanic (1995) that doctors need to take more seriously the satisfaction and quality of life concerns of their patients.

A more general characteristic of the biomedical system is its very mechanistic view of health and illness.  Descartes himself described the body using the machine metaphor (Hewa and Hetherington, 1995, p. 133):
  

I must describe to you first the body by itself ... I assume the body is nothing else than a statue or machine ... indeed, the nerves of the machine I am describing to you may very well be compared to the pipes of the machinery of fountains, its muscles and its tendons to various other engines and devices which serve to move them ... its heart is the spring ... Moreover, respiration and other such functions of a clock or a mill.

Organ transplantation is the ultimate fulfillment of the machine metaphor of biomedicine.  When parts of the machine malfunction, whether they be springs, pipes, engines, hearts, lungs, livers, or kidneys, we simply remove them and insert a “new” and properly functioning one.  The absurdity and simplicity of these statements illustrates the deficiency of the machine metaphor and the biomedical system.  Humans are much more than just thinking machines. We are social beings with history and culture.  This reductionism is not merely flawed but also insulting.  It is noteworthy, however, that their have been movements toward more complete models in areas such as nursing, public health, psychology, sociology, and anthropology.  The first of these to be discussed here is a more holistic view and will be referred to as the biocultural approach.
  
  



The Biocultural Approach

The biocultural approach presents strong challenges to the assumptions of biomedicine.  The model has its history within the field of medical anthropology.   As its name suggests, it is a synthesis of the approaches of cultural and biological anthropology.  Many disciplines are drawn upon in the investigation of health, disease, and healing, often with the intention of improving health care delivery.

Humans are seen as holistic beings with interrelated biological and sociocultural contexts.  It is seen as important to attain a comprehensive understanding of the human condition through an evaluation of a number of factors including: biology, environment, psychology, social organization, and political economy.

Armelagos (1992) reminds us that the biological description of disease and illness inherent in biomedicine remains a source of valuable information.  This description can explain processes otherwise obscured by social and behavioral phenomena.

Research using a biocultural approach is often cross-cultural and comparative.  It may also be historical.  Most crucial  is an emphasis on participant observation and the value of qualitative data.  It is recognized that the study of disease does not generally take place in a vacuum, but rather in a cultural system.  The cultural bias of both the researcher and those being studied must be accounted for.  An attempt must be made to identify with the concerns of patients and research participants.

According to Armelagos (1992) the biocultural approach conceptualizes biomedicine as one of the world’s many ethnomedical systems.  Western Medicine is viewed as a far-reaching institution of social control.  Many aspects of the health field are dominated by the profit motive.  Many health care providers are blinded by their own concerns with professionalism.  The biocultural approach underscores the importance of collective responsibility in contrast to the individualistic nature of the biomedical system.  Despite thinking to the contrary, medicine is very public.  Most medical research is publicly funded by government sponsored foundations.  A significant portion of medical education is financed with taxpayer dollars.  The United States’ only forms of national health insurance, Medicare and Medicaid, are funded with public money; direct payroll taxes fund Medicare and federal and state income taxes fund Medicaid.

A biocultural approach negotiates the importance and interdependence of physiological, psychological, and social  factors.  This study contends that it is important to study liver transplantation from a biocultural perspective.  Evidence from Joralemon and Fujinaga (1996) was presented in Chapter 1.  A biocultural approach can discover knowledge that was missed in many studies reviewed in the first chapter.  These attempts to quantify human experience are excellent examples of how the biomedical system can fail.  The biocultural approach enables humans to be studied in the context of their culture.

Social, political, and economic factors ignored by the biomedical model are given emphasis.  However, the biocultural approach has been criticized for taking issues of political economy too lightly.  Some researchers advocate for a more critical perspective that broadens the cultural interpretive approach to include an analysis of the hegemony of the capitalist world system (Baer et al., 1997; Singer and Baer, 1995)

Examining intimately the graphic details of end-stage liver disease and liver transplantation is likely to be a rewarding endeavor.  Such an endeavor raises questions about the social adaptations of those who have liver disease and have undergone transplantation.    How are the experiences of transplant recipients and their families influenced by cultural institutions?  What kinds of institutions have been shaped by transplant recipients and their families?  How does the history of liver transplantation have an influence on patients with end-stage liver disease?  Why is it that all transplant recipients have stories?   Are the stories themselves a kind of biocultural adaptation?  Research of this type also promises to contribute to the understanding of two very macro-level questions: Does biology affect culture?  Does culture affect biology?
  
  



The Sociocultural Model and Parson's Sick Role

Within this framework it is assumed that the structures and practices of society have definite consequences for people’s lives.  Social forces act on sick individuals and may determine whether or not they get well (Freund and McGuire, 1991).  Waitzkin (1981) suggests that illness itself has social origins that have been largely neglected.  According to this perspective, not only is the outcome of an illness dependent on social factors, but the illness itself may have social causes or a “social etiology.”  The mass of literature in these areas is daunting, therefore only the fundamentals will be presented here.   Talcott Parson’s concept of the sick role is one of the major contributions to the sociocultural study of health and disease and is of considerable importance for this study.  Simply defined, the sick role is a set of behavioral expectations for an individual who is ill.  In this framework, sickness is a disruption of (or deviance from) the normal human condition.  It is both biological and social.  The expectations of the sick role can be summarized in four categories  (Cockerham, 1995, p. 154; Freund and McGuire, 1992, p. 131-132):

Being sick constitutes a legitimate exemption from “normal” social roles.  This exemption must usually be recognized by the medical establishment.
The sick person is not responsible for his or her condition.  The individual does not have control over their illness or its symptoms.
The sick person should try to get well.  Exemption is only granted if the sick person is interested in, and attempts to become well.
The sick person should seek technically competent help.  A physician should be consulted, and physician advice should be followed.
These guidelines for the behavior of the sick person both demonstrate and support the social control function of medicine.  Conformance to these expectations is functional for society as well as the individual because it can prevent the spread of disease to others and restore the sick person to a healthy state.
Despite its importance the concept of the sick role does have certain weaknesses.  The sick role does not describe actual behavior, only expectations for it.  The sick role is concerned with temporary exemptions from social roles, thus in the case of chronic illness, its utility is limited.  Individuals do not always conform to the sick role voluntarily; in fact, many individuals are placed in the sick role by others.  The sick role holds that individuals are not held responsible for their condition.  However, this is not always the case.  Some illnesses carry negative moral connotations, such as alcoholic liver disease.

The application of the sick role concept and its critiques to those who experience chronic liver disease and liver transplantation raises some important research questions.  Are individuals with chronic liver disease exempted from their “normal” social roles?  Are these individuals ever seen as responsible for their condition?  What particular self-care behaviors are expected of these patients?  Do exemptions change after transplantation?   Do illness stories reconfigure events to satisfy the sick role expectations of society?  Finally, how do the expectations of society influence the quality of life for liver transplant recipients?

雪绒花

The Health Belief Model

One of the most widely accepted standards for understanding health seeking behavior is the Health Belief Model (Figure 1).  The model is deserving of serious consideration in the context of this research because of its reliance on individual perceptions.  It claims to have the capacity to explain the many ways that different individuals go about maintaining their health.  Only a very small portion of the Health Belief Model looks to biomedicine for answers.  In fact, evidence has shown that the formal medical institution is near the end of a long list of resources from which people draw on to form their subjective interpretations of illness (Punamaki and Aschan, 1994).

The Health Belief Model relies primarily on the subjective interpretations and meanings that individuals assign to symptoms and illnesses.  There are many variables that help form these perceptions.  An individual’s social and demographic background can have a dramatic influence on their perceptions.   Prior knowledge or experience of a disease can also alter someone’s perceptions.  For those with chronic illness, there is often some sort of lay consultation that takes places before they resolve to take a recommended health action.  Also of great importance is information gleaned from mass media.  Rising health care costs, and greater alienation from the medical establishment have contributed to an increased reliance on our own “stores” of medical knowledge, and those possessed by other lay persons (Furnham, 1994).

The most successful applications of the Health Belief Model have been confined to preventive medicine.  It is in these situations that the subjective interpretations that individuals assign to their illnesses have been readily observed.   The perceptions that the model relies on are: the perceived susceptibility to a disease, the perceived seriousness of a disease, the perceived benefits of action, the perceived barriers to action, and the overall perceived threat of a disease.  For those afflicted with chronic illness these perceptions can influence whether or not they follow a prescribed health regimen.

These same perceptions are important at the level of the symptom.  Chronic disease carries with it a variety of symptoms.  Garro (1994) has noted that an individual’s unique set of life circumstances shape explanatory schema and models that are incorporated into illness narratives (Kleinman, 1988).  The experience of illness can change the way individuals think about themselves (Garro, 1994; Heurtin-Roberts, 1993; Kleinman, 1988).

Similarly, it is important to think about the Health Belief Model and people’s perceptions when studying organ transplantation.  How do those with end-stage liver disease and liver transplants perceive the seriousness of their condition?  Do they perceive themselves as vulnerable because of their reliance on immunosuppressant drug therapy?
How do age, educational level, and time since the transplant influence these perceptions?
  
  



Lay Explanations of Illness

It is important to understand how people define themselves as being ill, or healthy, and how people perceive and interpret the symptoms that they experience. Knowledge of lay perceptions of illness can enhance the patient-physician interaction and explain the degree of adherence to prescribed health regimens, (Cohen et. al., 1993; Furnham, 1994; Garro, 1994; Kleinman, 1988).

Arthur Kleinman defines illness as a social experience; it is a dynamic process in which sick persons, their family, and social network perceive, live with and respond to symptoms and disability. In contrast, the concept of disease is created only by the physician. The physician uses available technical knowledge to translate the illness experience into a treatable biological phenomena (Kleinman, 1988 p. 3). Kleinman states "through examining the particular significances of a person's illness it is possible to break the vicious cycles that amplify distress (Kleinman, 1988 p. 9)."

Lay persons often perceive health and illness in a manner very different from health professionals, particularly physicians (Kleinman 1988, p. 122). This phenomena is shown consistently throughout the literature (Cohen, 1994; Garro, 1994; Hunt, 1994; Furnham, 1994; Heurtin-Roberts, 1993). The physician has a biomedical understanding of health and illness that is in contrast, if not conflict, with the common sense explanations of the lay person. In other words, the explanatory models of patient and practitioner can be very different. Research by Cohen and associates (1993) has shown that patients have a much greater awareness of the health professionals' explanatory model than the converse. The actions that people take in the interest of health are motivated by their perceptions of symptoms, and their "common sense" medical knowledge.

The vast majority of adults have some direct experience with acute and/or chonic illness. In a similar manner, the vast majority of people have some experience with good health. The Health Belief Model demonstrates that the perceived seriousness of physical symptoms is the most important factor in whether someone will seek medical assistance. This is indeed a very subjective phenomenon, for if an individual perceives a symptom to be serious enough to warrant some sort of action it is labeled illness behavior.

In American society, however, people are most often denied the right to define themselves as ill. Those who are outwardly "sick looking" may be labeled as sick, and those who are outwardly "healthy looking" are labeled as healthy, despite self-definitions and/or medical diagnoses to the contrary. The complexities of how an individual comes to be defined as healthy can be better understood through an examination of how people explain illness and its symptoms.

Explanatory models rely primarily on the subjective interpretations and meanings that individuals assign to symptoms and illnesses. Some researchers have posed that these interpretations may indirectly affect patient outcomes. Individuals afflicted with chronic disease are likely to live with their disease for a long period of time before they die. Many individuals suffer lifelong chronic disease that does not end up being the cause of death. Medically prescribed health regimens that treat these diseases often necessitate drastic lifestyle changes. These regimens can be ambiguous in nature and difficult to follow. Organ transplant patients are no exception. Simply keeping track of medications can be an incredible ordeal.

Research by Stoller et al (1997) describes the various pathways that older people take to care. This research is of significant value for understanding illness behavior, and merits further investigation. Ten separate pathways to care were identified in the study. Important among the findings, is that the majority of the respondents treated their symptoms outside the formal health care system. Instead, self care and lay consultation were practiced.

An article by Punamaki and Aschan (1994) raises some important issues that could add to the quality of such research. Their study conceptualizes variables such as self-care, mastery, and meaningfulness of life outside of traditional biomedical definitions. Patient definitions were used instead. Human relationships and work status emerged as important variables in determining mastery in daily life. Older subjects cited more demands (such as work) as sources of feeling helpless. Older people also reported that philosophy and faith, and lay care were more important resources for mastery, than did younger people. The study shows that self-care goes far beyond the simple treating of symptoms and extends into many other aspects of human life. Any research on illness meanings should take into account the methods used by Stoller et al (1997) and Punamaki and Aschan (1994).

Leventhal has constructed a "Common Sense Model of Illness" (Figure 2) to facilitate a holistic understanding of how individuals respond to and think about illness (Leventhal et al 1992). There are four major assumptions of the model:

Inner and outer environments provide a stimulus for the construction of experience and behavior.
The model then splits into parallel paths. The upper path characterizes an objective, practical component and the lower path characterizes strictly the emotional component. The paths consist of three stages, representation of the problem/emotion, coping with the problem/emotion, and an appraisal of the results of coping behaviors.
Representations, coping behaviors, and appraisals can be both abstract and concrete.
Emotional and objective representations may be in conflict and create complicated, often contradictory, coping strategies.
For the purposes of studying liver transplant patients, perhaps the most valuable portions of Leventhal's model are the objective and emotional representations assigned to various illnesses and symptoms. These representations consist of five components: (1) the identity of the illness and the symptoms associated with it; (2) the cause of the illness; (3) the consequences of the illness; (4) a time line for the illness; and (5) the degree to which the illness is curable/controllable. The importance of lay explanations at the level of the symptom must not be understated. End-stage liver disease carries with it a variety of symptoms. It is likely that patients and physicians have very different understandings of symptoms that they outwardly recognize.
Many scholars in the health and social sciences have worked to explain illness behavior, and to find ways to make human behavior conform to the regimens of biomedicine. The factors that determine an individual's behavior are numerous, and much work has been done to describe them. Though lay explanations can be complex, illogical, and inconsistent, all were shaped by the culture in which they exist. It should be noted that Segall and Chappell (1991) in their conclusions were not convinced that lay perceptions were complex or illogical, however, they did agree that inconsistencies may exist. Also of interest is that Furnham (1993) found religious and political beliefs and attitudes toward alternative medicine were strong statistical predictors of the health-related beliefs of lay persons.

The experience of illness can change the way individuals think about themselves (Garro, 1994; Heurtin-Roberts, 1993; Kleinman, 1988). Garro (1994) states that an individual's unique set of life circumstances shape explanatory schema and models that are incorporated into illness narratives. To my knowledge, such narratives, or stories, are ubiquitous among liver transplant recipients. These narratives will be elicited, described, and analyzed in order to gain an elementary understanding of how those with liver disease explain their illness. The analysis of these narratives must give attention to explanatory models. In telling stories respondents may be explaining their illness and treatment as much as they are describing.
  
  

雪绒花

The Narrative Approach

The introduction to an anthology dealing with the many uses of narrative begins by stating that the Indo-European root of the word “narrative” has two meanings, “to tell” and “to know” (Hinchman and Hinchman, 1997).  It is interesting that the connotations of the “narrative” nearly match these meanings.  Also included in the anthology are many different versions of what “narrative” means.  This is the case throughout the narrative literature.  However, Hinchman and Hinchman (1997, p. xvi) have identified a definition that approximates the lowest common denominator among the literature:

Narratives (stories) in the human sciences should be defined provisionally as discourses with a clear sequential order that connect events in a meaningful way for a definite audience, and thus offer insights about the world and/or people’s experiences of it.
Some examples of the use of narrative will be briefly discussed here.  In fact, many social scientists have used narrative to study social phenomena in relation to medicine (Garro, 1994; Good and Good, 1994; Hunt et al., 1996; Nochi, 1998; Radley and Billig, 1998; Wynne et al., 1992).
Many authors have chosen to make a distinction between individual narratives and cultural narratives.  Garro (1994) elicited the narratives of 32 individuals who had TMJ, a chronic condition of pain and dysfunction of the Temporomandibular joint, or jaw.  The narratives communicated the patients’ experiences with their illness and their attempts at coping.  Most important in the study is a comparison of individual narratives with the broader cultural model (or narrative) of how people are understood to act when ill.  The narratives of the TMJ patients were not congruent with the larger cultural model.  The patients’ narratives assigned meaning to an illness experience that was not completely legitimized by the broader cultural model.  Interestingly, it was also found that many patients adopted a shared model (or narrative) for TMJ.  These narratives also offered insights about the way the world works.  Time was an integral component of all of the narratives.  Since narratives are largely autobiographical, attention is given to past events.  Yet, these events are understood in the context of an individual’s present level of understanding.

Research by Good and Good (1994) using epilepsy narratives told in Turkey adds an interesting twist to the time component of narratives.  The authors were able to identify a common narrative structure employed by respondents.   Respondents tended to “subjunctivize” or leave the endings of their stories open and mysterious.  By leaving the story endings open, patients were able to retain hope and continue to recognize the possibility for a good outcome without regard to the likelihood of such an outcome.

The study by Good and Good (1994) also contributes an interesting theoretical perspective.  Storytelling in response to illness is seen as a cultural universal that informs the process of turning human experience into lay theories.  They also contend that illness narratives are reconstructions of biographical life history narratives that have been interrupted by illness.  Reader response theory is used to gain an important perspective when studying illness narratives.  In this paradigm, the person who tells a story is seen as involved in a process of following, or reading, the “virtual text” of the chronic illness they are in the midst of.  This process is one of “meaning production” in which the reader’s/storyteller’s choices of words, tone, and imagery are discovered as much as they are created (Good and Good, 1994).

A more practically oriented study was undertaken by Hunt et al. (1998).  Illness narratives were elicited from 49 Mexican Americans with Non-Insulin Dependent Diabetes Mellitus (NIDDM).  The research investigates the relationship between these patients’ understandings of their illness, and their illness behavior.   The research found that although nearly all patients agreed with biomedically defined causes of their NIDDM such as heredity and diet, many cited self-indulgent behavior and physical and emotional trauma as causal factors in the stories of their illness.  It was found that patients who cited their own behavior as having caused their condition were more likely to be active in self-treatment.  Thus, patients whose experience reflects a degree of control over their condition are more likely to take an active role in treating it, and those whose experience is one of not having control (those who cited heredity and traumatic events as causal factors) were less likely to take an active role in treating their condition.  Thus while stories are organized around past experiences, they can influence current behavior (Hunt et al., 1994).

Narratives of ten individuals with traumatic brain injuries (TBI) were examined by Nochi (1998) to understand their experiences of loss of self.  Three themes were found in the narratives: (1) loss of clear self-knowledge: difficulty with memory loss was associated with patients not knowing where they came from and having lack of confidence in their own judgement; (2) loss of self by comparsion: patients compare their current abilities and  interpersonal relationships to those before their injury and are often disheartened; and (3) loss of self in the eyes of others: patients communicated a dislike of labels such as “disability” and “TBI”, and of feeling or being labeled “stupid” or not “normal” (Nochi, 1998).   Nochi also asserts that narratives can be therapeutic, and that counselors can help patients deal with their loss of self through the transformation of their personal narratives.  This emphasizes the importance of narrative in human life, and supports the contention by Bruner (1986) that narrative is one of two fundamental ways in which humans think.

Radley and Billig (1998) use the term “accounts” to refer to the stories that an individual tells and the term “narrative” to refer to a much broader story that is shared within a culture.  The authors contend that individual accounts are dynamic and may change dramatically according to circumstances, intentions, and audiences (Radley and Billig, 1998, p. 18).

Sociologist C. Wright Mills has made the distinction between private troubles and public issues (Mills, 1959).  Private troubles consist of any kind of problem or adversity that an individual may encounter, public issues on the other hand are the social manifestations and oftentimes causes of these troubles. Cornwell (1984), as cited in Radley and Billig (1998), makes a similar distinction between public and private accounts of health and illness.  A speaker’s subjective evaluation of the context for their account influences how and what they say.  In the presence of an interviewer perceived to be an expert, individuals are more likely to talk about their illness experience with reference to institutions and authorities.  However, when the interview is made more informal, and patients are encouraged to “tell stories” the illness experience is intimately woven together with biographical information about the speaker.  Public and private accounts may also occur in concert with one another.  Analysis of how public references are made within private accounts may yield valuable insight (Radley and Billig, 1998).

This closely parallels the classic anthropological dichotomy of the “etic” and the “emic”, respectively, the outsider’s and the insider’s perspectives.   The “etic” is the perspective of a researcher who is studying a group or culture, but is not a member of that group or culture.  In contrast, the “emic” is the perspective of someone who is a full member of a group or culture.  To overcome the peripheral “etic” perspective, anthropologists use an ethnographic method that employs some type of participant observation.

The introduction to a 1994 issue of Social Science and Medicine featuring narrative research makes it clear that stories enable respondents to express the  “emic” perspective, and allows vigilant researchers to participate in the respondents experience and stake out its structure:

Narrative allows us not only to tell what happens, but to impart how an event takes on meaning for us–to convey the ‘double landscape’ of inner and outer worlds (Mattingly and Garro, 1994, p. 772).
In sum, the concept of narrative is multidimensional.  Narratives exist not merely at the individual level but also within and among groups of diverse individuals.  Time is an important component of all narratives; it helps to provide structure to past, present, and future experience.   When a narrative is being told one must remember that it is also being read because it draws on a virtual text of lived-experience.  Narratives evoke experience, but they also create meaning and the basis for behavior.  As such, narratives can be a part of fundamental thought processes like decision making.  The revision of narratives takes place perpetually, involving a near infinite number of contextual and historical variables.  And finally, narratives are vibrant and exciting depictions of life, and they may precipitate the perspectives of insiders and outsiders alike.

雪绒花

Narratives of Liver Transplantation

The goals of this research will be accomplished through an evaluation of the illness narratives of liver transplantion recipients. Illness narratives can give insight into how patients perceive their symptoms, health, and illness. The work of Arthur Kleinman in this area has had exceptional influence, and thus deserves special reference here.

Kleinman (1988) used patient narratives to discover personal and social illness meanings, the ways in which people cope with and think about pain and other symptoms, and how cultural meanings attached to disease can stigmatize patients. Perhaps of greater interest, Kleinman has suggested a method for physicians to use in their care of the chronically ill. This method is centered around a "mini-ethnography". The main components of this method are the elicitation and analysis of the illness narrative itself, an assessment of the social ramifications of the illness, and a list of illness problems (Kleinman, 1988). Intended by Kleinman to serve as a model for patient-practitioner interaction, the mini-ethnography is amenable to adaptation for this research study.

The Importance of a Qualitative, Ethnographic Research Design

One of the latent functions of this research will be to illustrate the importance of studying organ transplantation using a qualitative and ethnographic research design. Strong evidence was provided in Chapter 1 to support the claim that while useful, much of the extant research on organ transplantation and the quality of life is inadequate. On a theoretical basis, such quality of life research can be viewed as an adherent to the biomedical system. A qualitative and ethnographic design is most compatible with the biocultural approach.

Heyink and Tymstra (1993) have recognized that a qualitative design is valuable in conceptualizing and operationalizing "Quality of Life". Qualitative research is seen as being oriented more towards process and less towards product. In qualitative research attention is give to people as individuals with unique histories. Stated another way, actors remain recognizable.

The interview is the common method used in qualitative research. Interviews can be both highly structured, as in the case of fixed response questionnaires, or minimally structured, as is the case in the narrative method (Heyink and Tymstra, 1993; Kleinman, 1988). The benefits of qualitative interviewing have been described in detail by many researchers, and Heyink and Tymstra (1993 p. 295) have offered a concise summary that has been adapted into the following list:

The respondent has the opportunity to raise issues deemed essential for the research.
  
Misunderstandings can be easily clarified in the interview situation.
  
Fresh hypotheses and research questions can be tested out immediately in an interview with minimal structure.
  
The respondent and the researcher build "rapport": a relationship based on confidence, security, and mutuality of purpose.
  
The interview is a "wide-band method": many themes can be checked for relevance at short notice.
  
The interview is extremely appropriate for research into feelings, attitudes, intentions, and motivations of behavior.
There are difficulties with qualitative interviews. Interviewers must be knowledgeable, skilled, and well prepared before entering the field. Interviewing, as well as the processing of interview data, is both laborious and time consuming, allowing only for relatively small sample sizes. Unstructured and highly unstandardized interviews are unlikely to fulfill positivist criteria for validity and reliability (Heyink and Tymstra, 1993). The cultural bias that both the interviewer and the respondent bring to the interview can distort data (Miller, 1991 p. 161). However, the interviewer or observer, is as much a part of the study as the respondent. Conversations and interactions in the field cannot be exactly reproduced (Behar, 1996 p.7). Bias is present. This is supportive of the assertion that the observer who is present in the research should be present in the explication of the research findings (Behar, 1996).
  
  


Exploratory Research by Design

This study is exploratory by design. Exploratory research is well suited to understanding the concepts and theories held by the people who are being studied (Bickman and Rog, 1998 p. 79). It is hoped that the exploratory nature of this study will contribute to the understanding of how those who have undergone liver transplantation define and theorize about the quality of life.

The development of inductive, grounded theory is most possible in exploratory research (Bickman and Rog, 1998; Glaser and Strauss, 1967). Exploratory research of this kind is oriented at the enlightenment of salient issues, the focusing of research variables, and the generation of hypotheses. These studies may be less concerned with reducing bias and margins of error. In general, exploratory research is not concerned with the generalizability from the sample to the population. Such is the case in this study. The size of the sample cannot be seen as representative of the population. It has been limited by resource and time constraints.

Exploratory studies are also ideal for situations in which some methodological innovation is being used (Bickman and Rog, 1998). Although narrative and the mini-ethnography are methods that have been used consistently, there is no precedent for studying organ transplantation using a narrative approach. This study has been designed to be exploratory not just because of structural constraints, but because such a design is so compatible with the research thesis.
  

雪绒花

Access and Permission to Conduct Interviews

A research proposal involving interviews with liver transplantation recipients was submitted to obtain the permission of The Human Subjects Research Review Committee at the University of Toledo. Upon approval, steps were taken to arrange interviews. Access to most respondents was through the chairperson of the Toledo chapter of the American Liver Foundation. The chairperson contacted prospective participants and informed them about the study. Those who expressed interest in participating were instructed to contact me to arrange interviews. Five initial participants were recruited. In the course of the interviews, further prospective participants were recommended by interviewees. One individual was contacted through this snowball process, and agreed to participate in the study. In the initial telephone contact with the researcher, participants were given a brief description of my credentials, the goals of the study, and what would be expected of them. Respondents were encouraged to have other family members present at the interview. All six respondents were male. There are several reasons for this. At first, the only names provided by the American Liver Foundation, were of male respondents. Upon recognizing this the decision was made to limit participation to male respondents, as this would eliminate a source of possible variation in responses. Thus a purposive, non-probability sample of six men who have had liver disease and undergone liver transplantation are primary focus of the study.
  
  



Interview Settings

The initial intention was to carry out all interviews in face-to-face fashion with the researcher in the transplant recipients' homes. Any family members present would be encouraged to participate. For reasons of convenience, several of the respondents expressed their wish that the interview take place at their place of employment. All interview settings were quiet and comfortable. From my perspective it seemed that the setting had a minimal effect on the information that participants agreed to share. The important difference in the settings, however, was that family members were able to be present in participants' homes. This is indeed an important issue, because family members frequently contributed to the narratives of liver transplantion recipients.
  
  



The Interviews

Upon arrival at the interview site, greetings were exchanged and the respondent and I negotiated a suitable room to in which to have the interview. Most of the respondents had questions to ask before the interview began, which I answered happily. Informed consent was obtained in both written and oral forms (See Appendix A for informed consent form). However, some respondents declined to have me read the informed consent aloud. The respondent and I signed the informed consent forms in each others presence.

I then proceeded to introduce myself and the study in a standard manner, indicating both the nature of my interest in and experience with liver transplantation. The complete interview schedule, including the introduction is available in Appendix B. Recipients were asked to tell the story of their liver disease and liver transplant. Field notes were taken in combination with the audio tape-recording. No indication was given as to where respondents should begin, as it was important that they decide for themselves. I made note of any need for clarification and asked these questions once the respondent had finished with his story. Recipients were then asked to define what they thought "quality of life" means, and how their own lives and the lives of other transplant recipients relate to their definition. Social demographic information was recorded near the end of the interview along with information about the patient's medical diagnosis, date of transplant, and post-surgical complications. Three questions were asked that allowed respondents to evaluate the interview and make suggestions. Some respondents suggested questions that they thought could have been asked of them. When this occurred, they were invited to give both their reasoning and an answer to their questions. In subsequent interviews, I asked these "respondent suggested" questions in conjunction with question number 25 (Appendix B). The final question of the interview asked respondents whether they felt they had anything else to share.

The mood of the interviews was always very personal and friendly. The respondents were welcoming and eager to participate. Many respondents became emotional at points during the interview, and some asked to have the tape recorder stopped briefly.

The interviews were conducted in February of 1999. A total of six interviews were conducted. The length of the interviews ranged from 30 minutes to more than two hours. On average, interviews lasted about 90 minutes.

All interviews will be transcribed verbatim. Narratives will then be content analyzed. Special attention will be paid to patterns in the data, particularly pertaining to the structure of the narratives. Concepts will be compared and contrasted. Categories and themes will be identified. All findings will be discussed in cooperation with other professional researchers. In addition, at least one liver transplant recipient will be asked to review the research findings. The findings will be posted to the world wide web, and respondents with internet access will be asked to review the manuscript as a test of internal validity.

  
Other Methods and Sources of Information

A secondary method used in this study is participant observation. I have had the unique and valuable opportunity of being able to witness firsthand, the journey from the initial onset of illness symptoms, to diagnosis with liver disease, placement on the transplant list, transplantation, and all that follows. An immediate family member, my mother, received a liver transplant on November 15, 1998. It can be easily said that I have what could be considered an insider's perspective. Some might contend that this association creates bias and overconfidence, and therefore invalidates this research. I would argue that in social science, no researcher is able to conduct research without exerting some form of bias on the study and the respondents. Actually, it seems to me that my participation in the experience of liver disease and transplantation has increased both my personal skepticism and the rigor of this research design. My experience combined with my professional background gives me a level of understanding and communication with transplant recipients that should be considered more than adequate.
The inspiration for this study came during a patient education session in the summer of 1998 at the University of Michigan. Patients on the waiting list for a liver transplant were invited to bring their families to the session. I attended with my immediate family, and several members of my extended family. There were approximately twenty people present. The session was coordinated by a nurse and a social worker on the staff of the transplant center. I was intrigued throughout the session. However, towards the end of the session, several liver transplant recipients came into the room and were available to answer any questions. Questions were vibrant and emotional, and the responses were compelling. It was at this juncture that I decided to research the quality of life after liver transplantation. I began to quietly take notes and to ask my family intuitive questions about the process. One could say that this was the point where I officially began my fieldwork.

In addition to data obtained from interviews and participant observation, additional sources will be discussed in this research. First, the American Liver Foundation has published patient narratives on the internet (ALF, 1998). The content of these narratives will be discussed in relation to my research data. Another internet site, Liver and Onions, has published several narratives of liver transplantation (Jacques, 1999). Second, patient narratives have also been published as popular non-fiction literature. Three such sources, Many Sleepless Nights, Defying the Gods: Inside the New Frontiers of Organ Transplants and This is a Story About God: The True Account of Two Men, an Impossible Surgery, and the God of the Universe will be discussed in relation to the interview data (Anderson, 1998; McCartney, 1994).

雪绒花

Interview Data








The transcribed interviews are a formidable set of data.  The six interviews can be found in Appendix C.  It would be impossible to completely address all of the intriguing issues raised in the six interviews.  However, this research project is exploratory by design.  The design provided considerable freedom in the interview situation for me and the respondents.  This freedom is expressed in the exceptional quality of the responses.

This chapter is intended as a description of the research data.  Most of the discussion of the consequences of the data will be reserved for the final chapter which will deal with conclusions for future research.  First, this chapter presents rudimentary demographic and medical data collected in the questionnaire portion of the interview.   Second, the emotional aspects of liver disease and transplantation as presented in the interviews are discussed.  Third, issues of liver disease, alcohol, and stigma are examined.  Fourth, the issue of returning to work after liver transplantation is considered.  Fifth, I present and analyze how the respondents saw their families being affected by their liver disease and transplant.  Sixth, I present and discuss the respondents perspectives on the primary research concept, quality of life.  The chapter closes with a brief section describing how the respondents evaluated the interviews.
  
  



Respondent Characteristics

At the end of the interview the respondents answered several demographic questions and some questions about their medical history.  All six respondents were white males.  At the time of the interview they ranged in age from 20 to 65, with a median age of 45.  Four of the six respondents were married, and two of the wives participated in the interview.  All of the respondents classified their households as either upper middle class or middle class.  All respondents were high school graduates, one was currently attending college, and four were college graduates.

Four different liver diseases were represented by the respondents: Primary Sclerosing Cholangitis (R1, R3, R6), Hepatitis B (R2), Hepatitis C (R5), and Alpha 1 Anti-trypsin (R4).   The amount of time since the respondents had been diagnosed ranged from 6 years to 23 years with a median time since diagnosis of approximately 15 years.

Five of the research participants were transplanted as adults.  R4 was 20 years old at the time of the interview and was transplanted as a child 13 years ago.  R4's responses were consistent with those of the other respondents.  However, because of his youth at the time of the transplant, there were four questions for which he simply did not know the answers.  He stated that his mother would know the answers to any of those questions.  The story that R4 told was not as long as those of the other participants.  Yet upon reviewing the transcripts, I found that he spoke longer than R6, whose wife did most of the talking.  There was no evidence that the length of an interview or a particular response to a question determined its quality or pertinence.

As a group, the respondents spent much less time on the waiting list than do current transplant recipients.  Currently the average wait for a liver transplant in Ohio is 18 months.   Two thirds of the respondents waited less than four months.  There was considerable variation in the number of years since the respondents had been transplanted.  The most recent transplant was R1, who was transplanted in May of 1998.  The most distant was R4, who was transplanted March 1, 1986.

Four of the six respondents were transplanted at the Cleveland Clinic in Cleveland, Ohio (R1, R2, R5, R6).  R3 was transplanted in St. Louis, and R4 in Pittsburgh.  It should be mentioned that many of the respondents were acquainted with one another through activities sponsored by the Toledo Chapter of the American Liver Foundation (ALF), and the Transplant Recipient International Organization (TRIO).  All of the respondents reported that they were or are active participants in these associations.  Some of the respondents were treated by some of the same staff members, particularly those who were transplanted in similar time frames at the Cleveland Clinic.  For example, R2 and R6 were transplanted eleven months apart at the Cleveland Clinic (July 1989 and June 1990 respectively), and they had some of the same physicians.  R1 and R5 shared some of the same transplant center staff.  They were transplanted just six months apart at the Cleveland Clinic ( May 1998 and November 1997 respectively).

R5 was transplanted twice, once on November 2, 1997 and again, three days later on November 5.  He explained that he did not reject the first liver.  The physicians were simply not happy with the way the first liver was functioning.

In their stories, five of the six respondents stated how long their surgeries had lasted.  In all there were seven surgeries because R5 was transplanted twice.  R4 did not specify the length of his surgery.  Four of the surgeries lasted twelve hours, one lasted six hours (R1 who was transplanted in 1998), and one lasted 5 hours (R5's second surgery).

In general, the respondents were healthy, active individuals at the time of the interview.  However, R3 reported that he had recently been encountering some complications, including the possibility that his liver disease might be returning.  This was also true of R6, who was beginning to show some signs of liver complications such as jaundice, which was apparent in the yellowish tint to his skin and eyes.
  
  



Emotion and Liver Transplantion

Liver disease is a very serious condition, and transplantation is an incredible yet traumatic procedure.  Many of those associated with transplantation, medical practitioners and lay people alike, label transplantation as something no less than miraculous.  In general these people have strong feelings about transplantation and speak directly from personal experience.  This study would be incomplete without an assessment of the range of emotions that accompany transplantation.  The stories that the transplant recipients told, and the questions that I asked them, were at times very emotional.  As a full participant in the interview and an immediate family member of a transplant recipient, I was wholly involved in the interview emotions.  At times we were flooding the room with laughter, and at others, only tears could communicate the intensity of our happiness and sorrow.  In the following paragraphs I will do my best to represent this human component of the transplantation process.

The experience of liver disease and transplantation is scary.  Patients and their families have many things to fear, and their fate is continually uncertain.  The pattern of fear and uncertainty begins with the onset of symptoms and the first medical diagnosis.   In R5's case it was the medical diagnosis that came first:

Uh, when I went to, as I had before, donate blood to the Red Cross, and uh, they sent back a letter, basically a form letter, that said, “don’t ever give us any more of your blood go see your doctor.”  Well that really made me feel good [sarcastically].  Especially back in the 80's when everybody, you know that’s back in the time when AIDS became a big issue and things like that.  Um, so I went to see the doctor and they ran a whole bunch of tests.  Apparently what had come back, was what the abnormal liver function tests came back from the Red Cross, when they checked out uh, my blood, that I had donated  ...  More than one person thought that it was what they called back then non-A non-B Hepatitis.
For R3, some minor symptoms led him to seek medical advice, which resulted in the diagnosis of a major disease.  He uses the term “devastating” to describe his experience:
I was totally asymptomatic.  When I was 33 years old. I was going to a church camp working as a counselor, whatever.  With the physical format of the course, I had a really difficult time.  So I went to the doctor, had some tests.  Blood tests, more blood tests, and eventually led to diagnosis of PSC, Primary Sclerosing Cholangitis, which is what your mom’s disease is.  At that time, which was 1983, there was a, liver transplants were very very uncommon at that time, at that point it wasn’t even an option for someone with PSC.  And when I was diagnosed, the doctor said that I could be expected to live for about six years.  And uh, the uh, actually it was pretty devastating.

The diagnosis was also a source of emotions for R1:

Um, it was very um, ya know I felt nothing.  It didn’t really, you know I still was really runnin’ at a hundred percent so, I didn’t, It wasn’t a realization yet that you were sick.  It was a potential looming out there that some day, um, sooner than most people your life may come to an end.  And uh, at certain times it was on my mind a lot, it could be a little bit depressing, but that doesn’t really, my personality is sort of up beat so it doesn’t.  It really brought me down.
The diagnosis of chronic liver disease often forces individuals to confront their own mortality.  R1's description is important.  It exemplifies the total emotional upheaval that occurs with the diagnosis of chronic liver disease, as well as the challenge that the diagnosis poses to the individual’s self-concept.  This challenge was a recurrent theme in the narratives, and it can also be found in the descriptions that the respondents gave of their symptoms.
The symptoms of liver disease, whether they precede or follow a diagnosis, can be really terrifying for patients and families.  R6's wife emphatically expressed his affliction with esophageal varises:

I had him in the hospital, and it scared me to death, because he threw up blood, bright red blood.
The onset of jaundice can also be emotionally distressing, as it was for R5:
And um, it was August 4th, and I remember the day because it’s my sister’s birthday, that we’re in, we’re in Kroger [grocery store] I think, and my wife looks at me, and didn’t say anything at the time, waited until we got home, thought maybe the lights were different, but got home, and she said, “You’ve turned yellow!”  And I said, “Excuse me?”  And uh, needless to say, we said screw it, we’re going back to the gastroenterologist we saw ten years ago, because of the HMO’s you know you have to have the doctor refer that.  It’s like, I think we did that on the phone, “You’re gonna refer me to Doctor X, and you’re not gonna say anything, because I’m turning yellow. Ok.”
One of the most advanced symptoms of liver failure is encephalopathy.  The build up of toxins in the bloodstream creates difficulty for brain functioning.  Coping with this condition can be extremely difficult for patients and families.  R5 tells of his encephalopathy and difficulty sleeping while hospitalized at the Cleveland Clinic:
I would have what they called sitters at night.  Which basically are people sitting in your room.  Now imagine trying, ever try to go to sleep when you know somebody is watching, just forget that.  Um, I wasn’t sleeping very well at all.  Another function of the liver failure is your sleep patterns are all screwed up.  So it was very difficult to sleep anyway, and then I’ve got somebody in there trying to watch me.
And uh, so anyway, I’ve got somebody in there watching me.  And that’s basically because I could easily have gotten up and wandered away, and not know where I was.  You sort of slip in and out of this.  It’s very scary.  That perhaps for me, the mental thing, was more scary than the physical.  And especially afterwards, I’ll get to that in a second.  Because, you know, you can sort of deal with the physical thing.  But when you’re not really sure, like one morning I woke up, and I really was puzzled, I didn’t know why I was where I was, whatever that was. And it took me a couple of hours, to even conjure up my name, and that’s a real scary feeling, you know.  That old public service announcement about “a mind is a terrible thing to waste” and that kinda stuff, I mean MAN!  That was bizarre.

There is another rather fervent feature of the interviews.  From my perspective the interviews were often fun, and as I sat transcribing them I sometimes laughed out loud.  The positive emotions in the narratives were expressed both through tears and through laughter.  These emotions were noted in brackets in the interview transcripts.  Tears were outnumbered by laughter by a ratio of about three to one.  Laughter occurred approximately 74 times, and respondents either cried or spoke with trembling voices approximately 20 times.

雪绒花

All candidates for transplantation that are on the waiting list are issued a beeper, often called the life-pager.  Four of the six respondents included humorous anecdotes about the life-pager in their stories.  To emphasize the emotion and anxiety associated with the beeper, and the wait for a transplant I will share a personal anecdote.   When my mother was near the top of the transplant list, we were aware that the call could come at any moment.  On several occasions during this time-span I would be sitting alone at home in front of the computer working on this thesis, and I would hear a faint beep, beep, beep, etc. from another room in the house.  It was always just my father or one of my mother’s co-workers.  Nevertheless my mind was thinking, “Oh shit.”  The emotion was so intense, that for several minutes my body felt as if I were speeding down a roller coaster too steep to obey any established codes of safety.

R2 shared an anecdote about being notified that the transplant center had a donor organ available.  It illustrates what I like to call “the beeper-effect”:

It’s rather interesting, they called me and I wasn’t home at the time and I didn’t have my beeper with me.  At Cleveland, I don’t know if it’s like this everywhere, but in Cleveland, they made you give a list of your relatives, a list of your friends, and everybody else where they could contact you in case they can’t get a hold of you by beeper.  I was out and I came back home, and some friends stopped by, and I set my beeper off on purpose, and I said to them jokingly, “Oh my god! They got my liver!”  And they all said, “Oh R2! What do we do?! What do we do?!” and I said “No, I was just kidding.” you know. [laughter] So we sat there and talked for a while and um, pretty soon there was a knock on my door, and I went to the door and it was the resident manager of the apartment house.  And she said, “Mr R2, the Cleveland Clinic has contacted me, and they have your liver, and they would like you to call them.”  And I said, “You’ve got to be kidding me.” And she said, “NO! I’m not kidding you.  Why would I kid you about something like that?”  So it’s just so ironic that I did that.  So then I said, “Ok, thank you very much I’m going to give them a call.”  I went over to pick up the phone, and just as I was ready to pick up the phone, the phone rang and it was my uncle, and he said, “Get a hold of Cleveland Clinic they’ve got your liver.  Call us back and let us know what’s going on.”  So I said, “Ok, I will.”  So, I put the phone down, and just at that time, the phone rang again, and it was the Clinic, and they said quote, “Where in the hell have you been?  We’ve been trying to get a hold of you for the past three or four hours.” And I said, “Well, I was out and I didn’t have my beeper” and she said, “Well get yourself down here as quickly as you can.” I said, “Ok I’ll be there in a couple of hours.”  And she said, “No, no, no, no couple of hours.  It can’t take you two hours to get here.”  I know that you’ve already made connections with life-flight at the medical center to get you down here.  So call them and get yourself down here.”
R2's continues to build a humorous tone into his story.  He was fairly healthy at the time, and despite the urgency of the situation he had an  interesting interaction with the pilot of the helicopter that transported him to the transplant center:
He said we’re gonna cruise over Put-in-Bay.  They’re having a sailboat regatta and the boats are just magnificent.  We saw them when we were coming in.  So we’ll fly around the island and let you take a look at the boats for a little while.  So we flew around Put-in-Bay. [speaking fast] Then we got to Cleveland, and by this time it started to become nightfall and he said, “Have you ever seen the flats at night?”  He said, “It’s really pretty from the air.”  So he said then, “There’s a lot of activity around there at night.” so he said, “Why don’t we cruise around the flats for a while.” so we cruised around the flats for a few minutes.  All this time they’re waiting for me to arrive at Cleveland Clinic. [laughter] So, they wheeled me into the emergency room and they said, “We hope you’re R2.” and I said, “Yes, I am” and they said “Good, we’re gonna take you right to your room.”
After surgery, transplanted patients are moved to a surgical intensive care unit and may remain on a respirator for several days.  The respirator is a source of fear and discomfort for many transplant patients.  Four of the respondents mentioned the respirator in their stories.  Despite the fact that before surgery they had fears about the respirator, they smiled when recounting their experiences.  Here is an example from R6:
W6: Well we know sign language because his grandma and grandpa were deaf.  And uh, his uh, dad has a deaf lady friend.  So we know a little.  He knows more than I do.  So he says to me.  He says, “Where’s the nurse, get the nurse in here.” He’s telling me on his hands. “Get the nurse in here.”  I said, “Why, what’s wrong?” He says uh, “You tell her I want this out, NOW! Get this out!” And so I laughed and I called the nurse in and told her what he said, and she laughed and said, “Well we leave that in 24 hours.” And he goes, “NO! I want it out NOW! Take it out NOW!” And she laughed, and I was translating what he was telling me, see.  It wasn’t too long after that they took the respirator out of him.  First thing he says to me, “Did you bring a camera?”
R6: They had all of this equipment all over me.
W6: I said, [laughter] He couldn’t see all of this stuff up here you know, so he wanted a camera, so that I could take a picture.  Well that was just not on my list of things to bring down. [laughter]
Crying is a significant part of the experience of liver transplantation.  The patients and families I interviewed were most likely to become teary-eyed when talking about joyful experiences.   For some families the paramount joyful experience is when they are notified that a matching donor organ has become available for transplantation:
R1: So memorial day weekend hit.  And I remember, I just felt rotten.  It was an ok weekend and stuff.  We were going up to bed, getting ready for bed Monday night.  It was like eleven o’ clock, a little after.  I had just gotten ready, I had just got done in the bathroom, I think either I was in the bathroom or my wife was in the bathroom.  We were both, we hadn’t even talked about it, but I was just thinking, well we made it through this weekend, well you know I wonder.  How long is it gonna be?  All of a sudden the pager went off.  And um, at about 11:45.  And, I carry a pager all of the time.  I use it for work.  It could have been anything, but I knew when I came down here, I just said, I thought they [transplant staff] would just call the house. I thought well maybe one of the plants is having problems.  Cause  sometimes the oil refineries call, they’re open 24 hours a day.  And um, no it was a 216 number so I was pretty sure it was Cleveland, so I called and talked to the coordinator.  She said they were ready. [voice trembles, teary-eyed] They were gonna try and do surgery around 10:00 in the morning, could I get in probably by 4:00 would be really good.  So, um, that was a very difficult time.  You’ve seen it probably with your mother.
I: Sure.

R1: [emotionally] Your executing a plan the one minute.  And you’re just crying your eyes out the next uncontrollably.  Those five minute cycles just kept going and going and going for about an hour.

R1's experience was similar to that of R2's.  R3 and R4 gave only brief descriptions of “getting the call”, but they shared the common element of having made transportation arrangements, and creating a plan.  The situation was somewhat different for R5 and R6.  They had both been hospitalized before an organ was available.  Although R6 was too encephalopathic to be excited when the donor organ became available, his family was overjoyed:
The kids had ordered pizza and I was walking down the hallway with K. and I had left the door open, when we walked down the hallway.  I heard a telephone ring, and I got to the elevator, [pauses], and my son hollered out, “Mom, they found a liver!” [voice trembling, teary-eyed] I heard this all of the way down the hallway.  So I went running back and the coordinator was on the telephone.  And she was crying, and she said to me “W6, we found a liver.” [crying] And I said, “Do you want us to come back to the hospital right now.”  And she said, “No, they have to go harvest it first.” and I said, “Where do they have to go?” and she told me, “East Liverpool Ohio.” and she told me it was a 54 year old woman, and I don’t know if she told me more than she should have, but she was as shook up as I was.  So she said, you guys come back to the hospital at 6:00 in the morning and we’re gonna get him ready.  And then, you know, so you’ll be able to see him before he goes down.  After I hung up the phone, we were all screaming and hollering and all excited you know.  And I told K. there was no way I was leaving that hotel that night ...  I was so shook up.  So of course we got to the hospital at 6:00 in the morning, and the nurses were all excited, you know.  “You got a liver. You got a liver.” And he was so, [emphatically] out of it.  He didn’t register anything.
Another positive emotional circumstance was encountered by all six of the interviewees.  This circumstance was the incredible outpouring of support from others.  The support of family, friends, coworkers, acquaintances, and transplant center staff, combined with the reality that someone died so that the recipient could live, is simply overwhelming emotionally.  R1 told me:
Um, so we called everybody, we got everything lined up.  And people were great, [pauses, starts to cry]. It was a, one of those times in your when you [crying] start to realize that society is really good [Pauses, crying].
I: Yeah, I agree with you.  It’s amazing the way that people will extend themselves in a time like that. The outpouring of support from coworkers and family surrounding my mom was absolutely incredible.

R1: Yeah, and you know I started to look around and.  I’m not that nice of a person.  But obviously some other people must think I am, or they must really like my wife and my kids, because people were offering to do things, you know it was, it was just incredible.  Everybody!  And um, again you know, I’m not the easiest guy to get along with.  I try to help people and do my part.  But, I don’t think I deserved what I got.  I don’t think I deserved as much as I got.  People were just, you know, really doing a good job.  So, we just sort of um, [voice trembling] hung out and waited.  It was a very emotionally restless time.

R1 was amazed at how much others will offer of themselves when he and his family were going through the transplantation process.  This phenomena was reported by all of the respondents.  In the case of R4, his local community raised $92,000.00 to help with the financial burden of having a liver transplant.  Other respondents were stunned by the sheer quantity of get-well cards that they received.  This situation was no different for my own family.  We have received several hundred cards, and have continued to receive them six months after my mother’s transplant.
However, the emotion that surrounds the extreme willingness of others to offer their support exists in relation to an individual’s self-concept.  In the above passage, R1 said that he didn’t think he deserved such kindness.  They way in which he thought about himself appeared to him to be different from what others thought.  This situation created an inner-conflict, and a sense of gratitude that needed to be fully expressed through tears.     The other portion of the interview that evoked an emotional response from participants was Question #10 “Have people asked you any ‘strange’ questions about your transplant? (For example: my mom has been asked ‘ What does it feel like to have someone else’s liver inside of you?”  Although some of the respondents simply answered “No.” Others had some interesting (and somewhat humorous) comments:

R1: Right like “you need a brain transplant or something.” [laughter] I’ve realized how.  I haven’t had anybody ask me that, um we’ve had people like the Mickey Mantle question where the one reporter asked the doctor at the press conference after the transplant, “what happened to the donor?”  He’s dead! He’s dead!  You can’t interview him [smiling].
R2: Oh yeah.  Well, mine is even funnier.  It is along the same lines, but it’s funnier because I have a female organ.  And they say, “How do you feel having a woman’s organ?”  And [laughter] They told me that my organ came from a 35 year old woman at Ohio State, who had a routine kidney exam and died from the contrast dye.  About six years after my transplant I had to have a kidney exam at MCO.  I was more afraid of that than I was of having the transplant, because all I could think of when I was going in there to get that injection was, “Oh my god, you know, this could be it.” Because it can kill you, you have to sign a consent form when you have ‘em to take the dye, and that’s how she died.  But people always ask that question.  But I always tell people, I mean, it was a woman’s organ, what do I care?

R3: Well, I have in mind.  I was speaking to some people around the time, some of the tabloid type papers.  You know having a GoGo dancers liver or something like that and then after the transplant dancing all of the time.  Some people wanted to know if I was eating differently or feeling differently, that type of thing.  So, the same kinds of questions.  Um, I think the questions about, yeah, you know, “What does it feel like” uh, “To have gotten it, and somebody else died.” I’m sure there were some more.

R4:  Nobody has asked me that.  Nobody’s asked me that, or said anything like that.  I remember when I was little though, somebody said, “Hey, where’d you get that thing in your stomach?” and I was like, “Oh, I got hit by a train.” [laughter] just made stuff up.

R5: [Nods yes, Affirmative] Um hm, um hm. [agrees] I think all of us have kind of been asked because it’s kind of folklore out there that you take on personality traits of your donor.  Somebody even, a couple of people have even asked me, “Did you, early on, did you like notice that, like taste anything?”  Like, the last meal that the person had.  I mean it’s kind of macabre even talking about stuff like that.  And of course, “No, no, and no.”  You know.  That’s a common questions.  A lot of questions that I get are, “Do you know anything about your donor family?  Would you ever meet your donor family?” And I always say, “If it got ever to that point, it would have to be the donor family requesting.”  I would never intrude on them.  They did enough.  I  mean, if they don’t want to know who I am, that’s perfectly alright.  But if they asked to meet me, of course I would be more than happy to.  So that’s a similar question.  Questions about the donor family.   Questions about medications.  Uh, based on a lot of the misinformation that they might have.

Amidst the pain, suffering, and fear there are many aspects of transplantation that are joyous and circumstances that are laughable.  From the standpoint of the interviewees who have undergone transplantation, the experience is often emotionally charged and positive.