Patients Manage Life and Health While Waiting for a Liver
Susan Baker, RN, MScN, ACNP, Carol L. McWilliam, RN, MScN, EdD
Abstract and Introduction
transplantation offers a lifesaving treatment for individuals
with terminal disease. An extended waiting period may
contribute to anxiety and undermine overall health status,
jeopardizing the patient's opportunity for successful
transplantation. The purpose of this grounded theory
qualitative study was to discover how individuals experience
life and health resources during the wait for a liver
transplant. In-depth interviews, conducted with 12 adults who
had awaited liver transplantation for more than a year, were
transcribed verbatim and analyzed using grounded theory
methods. The findings portrayed the transplant waiting period
to be a process of experiencing confinement, disciplining the
self, and ultimately letting go and surrendering one's self to
accept available, accessible, and appropriate resources for
health. Resources for life and health used by the participants
included: following instructions, presenting self positively,
seeking information and support, controlling symptoms, using
distraction and denial, changing attitudes, setting and
achieving new goals, isolating oneself and entrusting oneself
to another. The findings suggest the importance of increasing
supportive, health-oriented care aimed at promoting resources
for everyday living and health during the transplant waiting
for a lifesaving transplant is a unique yet largely unexamined
experience. Little is known about how liver transplant
candidates manage their health and what assistance they may
need for life and health during the waiting period. Theorists[1-3]
have identified several resources for health, but what health
resources are important during the transplant waiting period
and how do individuals experience these resources? This study
was undertaken to discover what goes on as individuals manage
their life and health during the often protracted wait for a
liver transplant. Greater knowledge of how individuals
mobilize health resources during this time may inform the
efforts of all professionals involved in transplant care,
thereby guiding improved care during the waiting period.
on the experience of awaiting transplantation first emerged in
the heart transplant literature. The heart and liver
transplant literature offers consistent reports of the
experiences and perceived stressors of individuals awaiting
transplantation, namely, fear of death and how death would
affect the family unit, financial burden associated with
healthcare costs and loss of income, and feelings of
uselessness and loss of control as physical health
Anxiety associated with carrying a pager was common.[4,5] Multiple false alarms were associated with anger
and finally calm resoluteness. The mechanisms by which participants achieved
calm resoluteness are unknown. Although the findings of these
studies enrich under-standing of the major fears and concerns
of patients during the transplant waiting period, the findings
may have been limited by clouded memories because of the
retrospective designs of the studies,[4,5]
predominantly male samples,[7,8]
and waiting periods of less than 6 months in primarily
Stressors related to longer waiting periods, being female, and
to those awaiting transplantation at home beyond 6 months were
not explored in these studies. The study findings do not
illuminate transplant candidates' experiences of creating
health and mobilizing health resources.
health when the body is ill involves the mobilization of
health resources that will bring renewed balance into the
person's existence. The achievement of balance involves the
rethinking of attitude, aspirations, and ways of being in
personal and social context over time. Studies of the experience of waiting that
peripherally illuminate the mobilization of health resources
during the transplant waiting period focus primarily on the
coping strategies used by patients in the first 6 months of
the waiting period. Most patients, despite functional decline
while awaiting transplantation, were reported to use an
optimistic coping style to deal with the stressors associated
with their illness,
namely, positive thinking, keeping a sense of humor, thinking
of good things, praying, and trying to keep a normal life.[4,5,8,10] Few subjects used coping styles such as
alcohol, blaming self and others, partaking in risky actions,
and worrying. Increased use of optimistic coping strategies
may have been a reflection of the participants' sense of hope
and the strict selection criteria used to determine transplant
candidacy. These criteria limited the sample to those patients
unlikely to use palliative coping strategies.
How these coping strategies helped the patients were not
explicated by these studies.
examined the use of coping strategies of heart transplant
candidates at 3, 6, 9, and 12 months and reported no
significant differences in the use of coping strategies over
time. How patients might be enabled to maintain a positive
attitude despite poor quality of life is unknown. These coping
strategies are among the many resources for health identified
by theorists in the field. However, whether and how patients
awaiting liver transplantation use these resources remains
financial, and material resources that are available and
accessible to any individual within their social context act
to diminish or sustain the mobilized health resources of the
individual. The resources for health used to sustain coping
behaviors among heart transplant candidates were found to
originate primarily from within the family network. Other
social support networks such as friends, clergy, healthcare
providers, and individuals who had received a transplant
successfully were secondary sources of resources for health.[6,10]
reported that affective affirmative support and practical aid
helped transplant candidates cope during the waiting period.
However, hope was the only statistically significant predictor
of coping effectiveness. Although the study findings
demonstrate the primacy of hope in sustaining transplant
candidates, they do not reveal how hope is achieved nor how
available resources for health may enhance or detract from
hope, and how hope, in turn, affects health. This study also
was conducted with a predominately male sample (85%), which
reduces generalizability to the female pretransplant
family support and hope are vital to people awaiting heart
little is known about how liver transplant candidates sustain
and maintain mobilized resources for health as they await
transplantation for many months. Thus, the literature to date
provides few insights on what professionals can provide to
help transplant candidates manage their life and health
resources. Further investigation is needed to understand how
patients stay healthy and manage their lives within the
community when the waiting for a transplant extends beyond 6
months. Factors that sustain or diminish the patient's
internal or external mobilization of health resources may be
essential for successful transplant outcomes and therefore
merit further investigation.
Patients and Health While Waiting for a Liver Transplant
grounded theory method for conducting qualitative investigation was used to discover how
individuals experience change, social interaction processes,
and resource mobilization that affect their management of life
and health resources during this period. The study was
conducted in some of the communities served by an accredited
quaternary medical center located in southwestern Ontario.
participants were recruited if their experience served to
extend the theoretical foundations of the emerging theory.
Ensuring sampling appropriateness involved recruiting
participants with specific characteristics. Exploration of the
patient's perceptions of resources for health while awaiting
transplantation at home required that participants had ample
time to experience the waiting period. Therefore, participants
were recruited if they had awaited transplantation for at
least 6 months. In addition, participants were selected on the
basis of their ability to critically think about and share
their experiences regarding life and health resources with the
researcher. Thus, the participants were not cognitively
impaired, were able to communicate verbally, and spoke English
this study, theoretical sampling was accomplished by 2
sampling events. An initial participant was selected and, on
the basis of the data analysis pertaining to that participant
and the emerging theory, additional participants were
selected. Because the participants were unknown to the
investigator and were selected from the total population of
liver transplant candidates awaiting transplantation at home
for at least 6 months (29 candidates), the participants were
selected in consultation with the liver transplant coordinator
who was well-known to the participants. The researcher
maintained control of the sampling through discussions with
the transplant coordinator about the type of patient to be
recruited next. When a potential participant was identified,
the transplant coordinator contacted the patient to invite the
patient's participation in the study. When participants had
given verbal agreement that they were willing to speak to the
investigator, the investigator then made telephone contact
with each participant. The first telephone contact was to
provide additional details about the study, to answer
questions, and to schedule an interview. Sampling continued
until no new information about emerging theoretical categories
Study participants included 12 adult patients. The average transplant
waiting time was 1 1/2 years (range 1.0 to 2.5 years). Seven
of the participants were men and 5 were women. The average age
of the participants was 46 years (range 22-65 years). The
diagnoses included hepatitis C (n =6), hepatitis C and
alcoholic cirrhosis (n =1), primary biliary cirrhosis (n =3),
autoimmune hepatitis (n =1), and primary sclerosing
cholangitis and autoimmune hepatitis (n = 1). The majority of
participants were in Child-Pugh class B. This sampling
strategy elicited a sample in which none of the participants
lived in the city where the liver transplant treatment center
was located. Three participants lived in rural settings, and 9
participants lived in small and large cities.
strategies were undertaken to protect human rights throughout
the study. Approval was sought and granted from the University
of Western Ontario and hospital ethics review committees.
Participants received verbal and written explanations about
the study, including purpose, time commitment,
confidentiality, voluntary nature of participation, withdrawal
from the study would not adversely affect the care received at
the transplant center, and persons with access to data and
results. Following the explanation, signed consents were
methods used in this study often took the researcher into the
natural setting of the participants, where they were
encouraged by the researcher to talk about their thoughts and
feelings. These methods have potential risks and benefits for
the participants. During interviews of this nature,
participants may experience emotionally painful thoughts and
feelings as well as increased awareness and insights,
opportunities for personal growth, and meaning derived from
participation in the study. Participants were given the opportunity to withhold answers
or discontinue the interview if they were experiencing
emotional discomfort. None of the participants requested that
data collection be interrupted or discontinued, nor were any
adverse effects on participants noted by the researcher.
variety of data collection methods were used including
in-depth interviewing, field notations, and documentation.
Consistent with the naturalistic paradigm, these methods
facilitated discovery of phenomena from different points of
Data were collected through in-depth interviews with
individual participants to explore the participants'
experiences of life and health and their resources for life
and health while awaiting liver transplantation. Interviews
were conducted using a semi-structured interview guide
developed by the researcher. This guide posed 3 questions to discover the
experience of life and health while awaiting transplantation.
The needs for physical, psychological, spiritual, and social
resources that were important to the participants during the
waiting period were explored. Interviews were conducted in a
setting defined by the preferences and needs of the
participants (eg, family home, cafe, or investigator's
office); hence, on 3 occasions spouses and partners were
present and participated in the interviews. Each participant
was interviewed once for an average of 1 1/2 hours (range
interviews were conducted by the researcher, audiotaped, and
transcribed verbatim. Several strategies were used to enhance
quality. Interviews began with an explanation of the study
purpose and the importance of participant interviews. Rapport
was established with participants by conveying respect,
courtesy, and empathy throughout the interview. This enabled
participants to remain comfortable during audiotaping.
Descriptive field notes are an important means of developing a
rich qualitative analysis.
During the interviews the researcher discreetly wrote key
words on a cue card to describe behaviors, physical
surroundings, social interactions, and activities that
occurred. The researcher validated field impressions and
observations with the participants before leaving the
interview setting. Immediately following the interviews field
observations and personal reflections were audiotaped for
The participants were asked to share relevant documents that
helped, or did not help, them to manage their lives and
resources for health during the waiting period. These
documents included hospital publications, magazines, books,
and Web sites.
data sources were analyzed: interview transcripts, field
notes, and participants' documents. Inductive data analysis
using the constant comparative method described in grounded
theory methodology was performed.[12,16-18]
The discovery of the core category using the constant
comparative method involved continuous theoretical coding.
Four levels of coding were used to discover the core category:
overview analysis, line-by-line analysis, open coding, and
theoretical coding. In addition, the data were managed and
compared using a qualitative data indexing software package
QRS NUD•IST (Qualitative Solutions and Research Pty Ltd,
Melbourne, Victoria, Australia). The overview analysis was performed by reading
and scanning the transcripts for relevant ideas and themes.
Then, the interview and field note transcripts were reread,
first line by line and then paragraph by paragraph. This
method enabled the researcher to identify and collect many
behavioral incidents (open codes) and formative categories
(theoretical codes) relevant to the research question. As
incidents and categories emerged and recurred, they were
compared for differences and similarities. Incidents were
compared to incidents (open coding) and categories to
categories (theoretical coding). Each incident and formative
category was examined for its properties. In the course of
data comparisons, the category system was continually reworked
as close reading of the data resulted in increasingly refined
understanding. Throughout the process of coding and
comparison, memos were written tracking the researcher's
thinking about the conceptual links between the categorization
of data and the emerging theory.
categories and their properties began to emerge, a more
detailed review of the literature was done. Allowing the
categories to emerge first enabled the investigator to be more
faithful to participants' data, rather than forcing the data
to fit a theory and to realize if existing theory would assist
in the generation of the emerging substantive theory. The constant comparative method was used until
the core category was identified and no new information about
categories and their properties was found.
scientific criteria used to judge the rigor of quantitative
inquiry, notably validity, reliability, and generalizability,
cannot be applied in the same way to qualitative research. To assess adequacy in this methodological domain the criteria
include: fit, understandability, generalizability, control,
and audit trails.[15,16]
In this study, the researcher incorporated all these criteria
to maximize the credibility of the discovered substantive
The theory was derived by studying participants from a
population with firsthand experience in this social process.
Behavioral and theoretical incidents were directly derived
from the verbatim transcripts of the participants. Rich quotes
from the interview transcripts were used to provide the reader
with the evidence to support the discovered categories and
A grounded substantive theory that closely matches the
realities of the field of study will make sense and be
understandable to those familiar with the substantive area.
The researcher validated and stimulated her thinking about
emerging categories and data interpretation through
discussions with transplant care providers, clinic nurses,
colleagues, and laypersons.
For the theory to work in a substantive area it must
parsimoniously describe what is going on in the everyday
reality of the area. The theory should provide enough
generality to be applied in a wide variety of contexts in the
area. The researcher endeavored to elevate individual
incidents of behavior to conceptual abstractions through the
rigors of theoretical coding, theoretical sensitivity, and
comprehensive tracking of formative and discovered
interrelationships using memos. The following processes were
used: first, becoming attuned to thoughts and feelings that
were portents to forcing the data into categories; second,
questioning about where to fit an incident or category enabled
rethinking conceptualizations, discussing conceptualizations
with colleagues, attempting to justify the use of extant
theory, or returning to the literature; third, utilizing a
computer program to track thinking about incidents,
categories, properties, and processes so no ideas or insights
Social interactions and behaviors change over time; therefore,
the generated theory must incorporate the variable of change.
That is, the theory must be sufficiently flexible to permit
the user partial control over the structure and process of
daily situations as they change over time. Glaser and Strauss(p245)
a theory with controllable concepts of sufficient generality, that
fits and is understandable, gives anyone who wishes to apply
these concepts to bring about change a controllable
theoretical foothold in diverse situations.
criteria of control naturally followed because the researcher
was faithful to the grounded theory methodology, thus
permitting elevation of the data to a comprehensible
Validation. Member validation is a technique proposed to establish validity
of the researcher's interpretations of data collected from the
research participants. In this study, the researcher engaged
in member validation during participant interviews whenever
clarification was sought, elaboration of meaning or intent was
requested, and when interpretations about observations were
shared with the participants.
An audit trail of the qualitative research process allows for
readers to follow the logic of each decision made during the
course of a study. In this study, 2 types of audit trails
were used. First, a qualitative data indexing software
package, QRS NUD•IST, recorded theory development. The
second audit trail was through memo-writing to track hunches,
ideas, and questions related to the data.
strategies of grounded theory research do not yield verified
or replicable results. Rather, the findings reflect the social
processes among a specific sample of individuals in their
unique social context. Therefore, the theory generated is
limited by the nature of its substantive area of interest,
which described patterns of relationships between categories,
but was insufficient to generate a universal model of
underlying generative mechanisms of cause and effect. The
nature of the grounded theory method of constant comparative
data analysis is another limitation. Specifically,
line-by-line coding, which is used to reduce the participants'
narratives into word fragments that are unbound from the
context of these narratives may serve to create categories
that no longer reside with the participants, but, instead, lie
with the researcher.
To reduce the risk of this occurrence, coding was performed
both line by line and narrative by narrative. The final
limitation of the study concerns the possibility that the
generated relationships, though grounded in the participants'
narratives, may not be accessible to those who have no
immediate experience, thereby limiting the value of the theory
Patients and Health While Waiting for a Liver Transplant
comprising the social processes of how patients awaiting
liver transplantation manage their life and health. Awaiting transplantation was a process of
experiencing confinement and disciplining the self,
ultimately reframing one's world view to one of
practical pursuit of life and health or reactive
surrendering of the management of their life and health
to others (Figure 1). The following sections describe
these social processes of awaiting liver
transplantation, illustrating this human experience with
excerpts of participants' real-life descriptions.
Patients and Health While Waiting for a Liver Transplant
managed their lives and resources for health within a social
system characterized by limits imposed by society and
limitations emerging from within the self. The externally
imposed limits included surveillance and expectations of
adherence, stigma, and caregiver burden. The limitations
emerging from within the self included self-burden,
diminishing functional status, and other discomforts.
Limits Imposed by Society
and Expectations of Adherence. Individuals registered on a computerized
transplant waiting list are introduced to a new social order
-- surveillance. Regular surveillance by the transplant team
occurs and adherence to special directions is required by
patients to maintain transplant candidacy.
I figure it's the only way I'm going to stay healthy enough to get
the transplant. They say, if I follow instructions... so they
say, "You have to do this." You do it, without even
saying "Why?" The only time I say "Why?"
is "Why me?"
participants found that decisions made by the transplant team
limited freedom of movement. Limits imposed on movement were
related to traveling outside certain geographical boundaries
and losing one's driver's license.
Life is put on hold... I do feel that way sometimes... I just feel
like I'm immovable, dead or alive, and just waiting for
something to happen.
It's been difficult. I spend a lot of time by myself and a lot of
time outdoors and it's difficult to get out of the city by
yourself without a driver's license. Certainly it's impacted
on my mobility and my control and my independence.
participant-surveillance system interactions provided a great
deal of support to the participants and information to the
surveillance team, the interactions were a source of anxiety,
doubt, and uncertainty for the participants. Interactions with
the surveillance team reminded one participant that she was
Each time... I get a call from [the transplant coordinator] it
takes about 3 days to get over it... You start thinking, hey,
this is really me who is going to do this.
system interactions, whether through written material or
direct contact, could be a source of doubt and uncertainty for
participants and their families, particularly if information
was unavailable, inconsistent, or inaccurate. All study
participants needed and searched for information about their
liver disease, the expected length of waiting time, and how
surveillance reports impacted on their expected waiting time.
The organ allocation processes also worked to prevent
participants from acquiring information they needed most --
information about waiting time.
The first question everybody says to me is, "When are you
going to get a transplant?" and I'll say, "I don't
know. Nobody tells me." They don't even give you an
inkling as to what the possibilities are so... short of saying
to you, well 6 months from now you're going to get a
transplant, I can't see that anything else would be
helpful.... When I was first diagnosed with it, they were
telling me that people have to wait 28 months to get a
transplant, so I figured, okay, I'll have to wait at least 20
months. Then it [the waiting period] went up... and I'm
beginning to wonder if it's ever going to happen.
the upheavals, the constrictions to normal life, and the sense
of confinement induced by surveillance and treatment
decisions, participants found community physicians and the
transplant team to be humanistic and caring when active
listening, taking time to explain, humor, prompt answers to
questions, and honesty occurred.
He [the physician] does the stents and I asked him, "Would you
be my doctor?" and he said, "No, consider me more of
a plumber." So that was how he described himself to me
and I think, you know, getting down on a personal level like
that builds trust with me.
Stigmatization evokes negative and punitive responses that
exert a measure of social control,[22-24]
isolating individuals within their social context. Social
stigma was another confining force exerted on the participants
during the transplant waiting period. For the participants in
this study, stigma was alienating and inhibited the use of
available support systems, such as friends and coworkers.
Three participants were reticent to talk about their troubles
about liver disease and the need for a transplant for fear
they would not be understood by those in their social context.
Consequently, available support systems, such as friends and
coworkers, were avoided, creating a cyclical pattern of
isolation and despair.
I don't know if it's conscious or not, but I think that they
[coworkers] do lose a certain amount of respect for you when
you have something like this [hepatitis C], and also the fact
that, you know, where did it come from? He must have done
something bad or something. Or people don't understand this
sickness first of all.... I find that I'm reduced to... doing
I think a lot of us are going through this alone... [liver disease]
is a dirty disease -- all liver degeneration, liver failure
and hepatitis C. They all figure that you're a drug addict or
an alcoholic, you know, chronic. How do I deal with that?
Well, I cry [crying].
one study participant experienced during hospitalization for
encephalopathy, the stigma enacted by healthcare providers had
the potential to lead to mis-diagnosis and mistreatment.
I fell [at home] and I could not get up. I couldn't walk and, at
the same time, I couldn't talk. It was encephalopathy. It got
that bad, my toxicity.... The ambulance came and I was so
happy to see them I reached up to touch him and he said,
"Don't you ever touch me." They assumed I was just
drunk.... They [the hospital staff] take me up to the
floor.... All the nurses gathered to learn about this new
patient, right outside my door, and the old battle-ax carried
the message that I was drunk, [he] stood there and told these
nurses that I was an alcoholic and took drugs to get high on,
right outside my room.
Two of the participants in this study were responsible for the
care of ill family members and therefore experienced caregiver
burden as another socially imposed limit contributing to their
experience of confinement while awaiting transplantation.
Although fatigue, burnout, and frustration are a natural
outcome of caring for ill family members, these experiences of
caregiver burden were escalated among participants who were
themselves ill. Participants experiencing caregiver burden
were unable to obtain support either because they did not have
the energy to participate in caregiver support systems
available to informal caregivers, or such support systems
simply were not available.
There is [support through] the liver foundation, but I haven't had
a chance to get any information from them. I've been either
too ill or my wife's been too ill.
Limitations Emerging From Within the Self
confining forces within the social system were confounded by
the participants' perceptions of the social support system and
by their ongoing physical and emotional decline. Limitations
emerging from within the self included: perceptions of being a
burden to others together with diminishing functional status,
and other discomforts.
of Being a Burden. Participants who deemed themselves a burden to others were
reticent to accept available support from family, friends, the
healthcare system, and society in general.
I don't want to bother anybody, even with help around the house.
I'll do it myself... to have somebody hover over me, I'm not
Functional Status. The disorientation and apathy associated with loss of memory and
growing encephalopathy served to tether the participants to
their homes, further confining them to an ever contracting
I don't drive anymore, I'm too scared. I lose my place. I lose
where I'm going now, so I don't go anywhere.
caused by ongoing and increasing loss of physical stamina
caused contraction of the social system as participants
withdrew from activities that defined them as individuals.
I play darts. I can't throw darts anymore. That really hurt me.
That really put me down, for about 2 weeks. Because darts are
the only thing that I do and it's one thing that I love doing
and then all at once, I couldn't hit the dart board, I didn't
have enough strength.
I don't go out and party like I used to... I would go out every
night of the week, after work, after midnight because I felt
like I was missing out... I have to let go because if I try to
do too much, I won't be able to do anything at all.
Discomforts. Other discomforts trapping participants were pruritus, back pain,
and abdominal cramps. Protracted itch burdened and confined
one participant to her kitchen or to the shower, where she had
developed strategies to manage her life and health.
Right now my life surrounds one area. Scratching. I can't do
nothing else, but scratch. It consumes me. At times it can
send me up the wall.
the participants were unlikely to seek and/or accept needed
support, these individuals were further caught up in
frustration, unmet goals, and isolation, intensifying their
experience of confinement within their contracting social
Patients and Health While Waiting for a Liver Transplant
Disciplining the Self
passing time, the participants responded to the confinement
created by both external and personal limitations by
disciplining the self to muster effort to live their lives and
manage their resources for health within their social system.
The self-disciplining process included engaging with the
social system, by following instructions and presenting the
self positively; engaging with the self, by seeking
information and support; controlling symptoms; using
distraction and denial techniques; and reframing one's world
view, by changing attitudes and setting and achieving new
Engaging the Social System
engaged with the social system, particularly the surveillance
team, to ensure health maintenance and their continued status
as candidates for transplantation. The self-disciplining
process of engagement was enacted by following instructions
and presenting the self positively.
Instructions. Ongoing obedience to medical regimes was a common thread
underlying the participants' ability to manage their lives and
health while awaiting transplantation. For the most part,
participants followed instructions with blind faith.
Well I would say that the best way to do it [surviving the waiting
period] is to follow your doctor's directions, for one thing.
the Self Positively. Morrison describes a particular mode of self-presentation adopted by
hospitalized patients to ensure continued caring from the
hospital staff. For the study participants, the mode of
self-presentation was manifested as a conscious effort to
present themselves positively to the surveillance team, to
ensure open and honest communication channels. The maintenance
of open communication with the surveillance teams was
perceived by the participants to ensure an ongoing flow of
information, continued warmth and interest, and appropriate
action and care. Several participants illustrated how positive
modes of self-presentation were applied. One participant
believed that if the surveillance team felt in control, she
was likely to have a better clinical outcome.
You want them [the transplant team] to know that they are in
control, you know, that they know what they're doing. I think
it's about security. You feel that some things are beyond your
ability to handle so maybe they [the healthcare team] could be
as calm as possible.
participant tolerated surveillance when it was required that
she subject herself to multiple physical examinations.
Self-disciplining, through tolerant obedience and humor in
response to the surveillance team's ritualistic routines,
helped the participant to present herself in a positive
The different doctors, who are learning to be doctors, as they put
it: "I'm learning here, can I check you out?"
[laughs]. I didn't like that the first time, but everybody is
doing it now. But then the doctor comes in and does the exam
all over again [laughs]. I'm at their disposal for the time
that I'm there. [I think] "Just do what you want with me.
I'm not coming back for 6 months -- grin and bear it."
the participants disciplined themselves to construct
humanistic surveillance experiences, these constructions were
not exclusive to the participants. As previously described,
the surveillance teams also worked to humanize clinic
the social system through extra effort with family, friends,
and colleagues was also an element considered necessary for
ensuring ongoing and future support as one participant
Make sure you get your support group lined up.... Give better
Christmas presents this year; to family, friends, colleagues.
They are all critical for the process of getting through all
of the issues you're going to have to deal with [while
Engaging the Self
the participants in this study, the process of engaging was
not exclusively bound to interactions with the social system,
but also with the self. Self-engagement was a process of
self-disciplining, whereby the participants put forth a
determined effort to counterbalance the confining forces they
experienced. Participants did this by holding on to their own
traditional roles and patterns of daily living.
Interviewer: Do you have anybody coming in [to the home] to help you?
Subject: No. I guess I could have had somebody but I
just, I do whatever I can... If it doesn't get done, then I'll
do it the next day... I guess I try to push myself.
for, and using, one's inner resources for health enabled the
participants to humanistically connect with their inner
selves, take stock of their situation, and take action to
enhance self-care of their own physical, emotional, and
When I pray, I look at that as talking to God.... And when you
meditate, you listen to yourself, and that simply is my
philosophy.... In my addiction I was drunk, but in recovery
[from alcohol and drug misuse] I have to face my fears,
because otherwise I'm going to deal with it everyday and it's
going to get bigger and bigger and bigger.
process of successfully engaging the self to hold on to life
created a sense of faith in one's ability to live as a human
being entitled to continue life. Trusting the self and feeling
confident enabled participants to pose questions and share
thoughts and feelings with others to alleviate physical,
emotional, and spiritual discomforts. Engaging the self
occurred by seeking information and support, controlling
symptoms, distracting, and denying.
Information and Support. For most participants, finding useful information and
support to counterbalance uncertainty was an ongoing
self-disciplining process. Participants made an effort to gain
an under-standing of personal problems, articulate needs to
themselves and others, and then mobilize appropriate resources
for health. Participants described efforts to meet their needs
adequately for information and support.
In the beginning I was needing information like I just heard PSC
[primary biliary cirrhosis] and I didn't know what it was so I
think one of the first things we did was to go to the Web. But
as far as the pamphlet [information pamphlet about PSC] they
had, I mean, they were nowhere near what I needed.
participants who were unable to mobilize needed resources for
health because of cognitive incapacity, or a lack of
information-seeking ability, were eventually immobilized. But
until that happened, participants at least had ideas about how
they might be helped.
I come to the transplant center once every 3 months, sometimes 4
[months], you know... I know that they [the transplant
service] are doing some things to educate the public about the
transplant organs and things like that, but I think the
individual doesn't have a source for the information that they
may want to pursue or meet other people who have the same
problems and maybe sit down and talk to a table full of people
who have problems, or the same problems... That would help
individuals realize that they're having the same kinds of
problems that other people have and they don't feel alone and
they don't feel like they're alienated.
Over time, the participants managed debilitating symptoms
through a process of self-monitoring, identifying symptoms
early, and preventing symptom escalation. Self-monitoring was
an ever present element of the participants' lives.
Everywhere I go I have to be very aware of my limitations and my
needs or else I may have repercussions of some sort. I don't
even know what that could be. It may just be so many things...
so I mean, you have to be very careful about that.
to label a symptom combined with the knowledge of a reliable
strategy to control or diminish that symptom enabled the
participants to manage daily living. The symptom control
strategies used by the participants were often those touted by
the surveillance team and deemed reliable by the participant.
Once a person... knows what the disease is and what pattern it
could take, how much influence they could have on [the
symptom], then their life can be fairly normal.
the symptom control strategies offered by the surveillance
team were inadequate, the participants discovered, through
trial and error, ways to augment management of debilitating
Water helps [the itch]. The water also increases the itch after you
get out. At least, if I'm in there about 10 minutes I get that
relief. I can get reorganized. I've learned [to manage the
itch]... The water is my worst enemy. If I could stay in it
forever I would, but I know I can't.
ongoing symptom of fatigue was controlled by pacing
activities, a determination to keep going, and trying to live
a normal life.
Sometimes I would like to do what other people do. I would like to
not think twice about it if I've not been doing something. I
find that a frustration... Just recently I went into a museum
and I was hardly through... [when] I felt really ill and I
justsit down.... I didn't want to do that and I wanted to die,
but if I don't remain calm, discipline myself to pace
myself... We don't want to give up on doing things and it
would be very easy with the way that you feel.
If you give up just one iota, you're finished. You just gotta keep
Subject: If I let myself go I know I can get really down and miserable.
Interviewer: How do you avoid this?
sense of well-being prevailed when the participants had
strategies to control fatigue, confusion, and other
discomforts. The participants' ability to limit discomforts
perpetuated a feedback loop characterized by trust in the
surveillance team's recommendations, faith in self-abilities,
ongoing self-monitoring, and symptom management. As time
passed, the experience of confinement created by the limits
imposed by the surveillance system and the participants' own
limitations was overcome as the participants, through the
self-disciplining process, assumed responsibility for managing
these internally and externally imposed constraints. However,
the process of self-disciplining itself then perpetuated and
reinforced the confining process, enlisting the individual in
its constant reconstruction.
and Denying. Transient images of death furrowed by worries of missed
opportunities for a life-giving transplant led the
participants to engage in strategies to distract themselves
from their life and health circumstances or to deny that these
circumstances existed. Distraction and denial helped the
participants ward off negative thoughts and worries associated
with uncertainty, anxiety, and diminishing health.
I try and figure myself as disease-free, and I don't have this
problem really, you know.... The most important thing, is not
to let yourself think about it too much because it does
become, it could become, a real problem eventually.
participants embarked upon activities to distract themselves
by achieving short-term goals and by creating legacies to
leave behind for others when they died.
Do something every day that you enjoy, like something that appeals,
and if you can, do something also so that you [and others] can
see your work.
complete denial did not characterize the participants' health
management strategies, some degree of denial was often
apparent. Participants resorting to denial often appeared to
be doing too much. The consequences of their efforts only
served to remind the participants that they were seriously
After a while you forget what it's like to feel something and
that's almost like a trap. You think I must be alright. Maybe
I'm just lazy, you know. I can't be sick. So, you get up
and... really do yourself in, doing stuff that you shouldn't
process of seeking information and support, controlling
symptoms, and distracting and denying helped the participants
take control of daily living, thereby releasing the
surveillance system from directly controlling the
participants' lives. The confining process originally assigned
by the surveillance teams and the self was being embraced by
the participants themselves to manage daily living.
Reframing One's World View
the participants in this study, the traditional patterns of
daily living and health could not be sustained. Letting go of
traditional patterns was an ongoing process of
self-disciplining in which the participants engaged with the
self by changing attitudes and setting and achieving new
Through engagement with the self and the social system,
participants were enabled, with varying degrees of success, to
make attitudinal changes to ease uncertainty and anxiety and
enhance a sense of well-being. The process of reframing one's
world view was an ongoing social process precipitated by
near-death experiences or life-threatening events that could
jeopardize transplant candidacy.
Up till what happened [the near-death experience], I always thought
that the transplant would come first, always, and I'm just
waiting for it, like waiting for a bus. You know it's going to
come... [The near-death experience] raised the possibility
that it might not happen the way I wanted it to happen. That
kind of brought me around [to thinking] that I wanted to make
a difference to everybody including that I have left something
[when I die].
freedom to choose a response to a situation, no matter how
miserable, provided a sense of control over well-being.
Choosing to adopt a focused positive attitude, amid powerless
frustration, offered an opportunity for the participants to
discover, and then settle into, aspects of daily living
offering enjoyment and meaning.
I simply be. I am, therefore I am, you know, and I find frustration
comes from negative emotions... anger, hatred, resentment,
fear, guilt, change, and all those, including frustration. God
says to me, "You don't have to feel those feelings that
way. You have a choice in how you want to feel." So, on
most days, I can choose and have a comfortable day.
participants successfully managed daily life and anxiety by
focusing their effort to be positive and take "one day at
a time," thereby fulfilling some of their goals and
achieving a measure of comfort.
Outlook. I'll tell you right now, it's about 80% of your
survival... I can go home, and lie in bed and stay there,
which people have done. But what good is that to the rest of
my family? I don't want the rest of my family seeing me down.
There are days I am down and there is nothing I can do about
it. You know, you have these days. I had more days down when I
thought I was well than I do now.
acknowledgment that one had the power to manage frustration
provided some participants with the permission and the
flexibility needed to discard activities that had little
relevance to the larger out-come of transplant candidacy.
How have I changed? I think I'm calmer and the little things don't
bother me so much. It's like not getting hung up on little
things and looking at the big picture.
Well I figure I can do so much today -- and if I get overly tired,
which is the main problem with this, [I] leave it! It's done
well enough for today. Tomorrow you can do something else.
It's just one thing, don't try and clean the whole house from
top to bottom. And don't try going out. It's not worth it.
adopting of a "one-day-at-a-time" attitude helped
participants to manage the limitations imposed by an uncertain
I don't want to know what's ahead... I live on a day-to-day basis.
What happens today, if something new breaks out today, as long
as I know what it is, I may get upset for a couple of days and
say this is stupid and carry on... I just live from day to
day.... I don't look forward to what's going to happen
tomorrow. I just live for today.... I make the best of what I
can today, and tomorrow will come. That's how I have to look
at that. I can't look ahead, because I don't want to look
ahead. Because, if I look ahead, my liver may never ever take
me. So why worry about it?
effect of taking a one-day-at-a-time approach enabled a
tolerant and gauged approach to the management of uncertainty,
distress, and anxiety.
You have symptoms and those are the symptoms you're going to have
and there will be more added... Things will never get better.
From here on out it's a downhill slide. But don't you look for
tomorrow, you look for today. You do what you can today and
once it's done, feel good about what you've done today and go
to bed and start again tomorrow... It's not going to be all
good, but try the best you can.
all participants reframed their world view positively. The
adoption of a "whatever happens, happens" attitude
sometimes precluded development of a structured mechanism by
which to discover renewed meaning and activities for goal
and Achieving New Goals. Through attitudinal change, however, some of the participants
committed themselves to setting and achieving new goals for
life and health. Having and achieving goals brought renewed
meaning to their lives. Goals included behavioral changes:
pacing activities, planning to do something every day, finding
activities that bring enjoyment and helping others. Initially,
the participants were distraught by their inability to keep up
to their traditional pace of life. For some, continuous and
growing fatigue and discomfort eventually led to tolerating
the situation. Pacing relationships by letting go of intimacy,
helped one participant to maintain a friendship without
causing harm, should she become more ill.
I find that it [the illness] affects me in relationships. Like, I
was dating a guy about a year ago now. We're still good
friends.... But he had more of a hard time, back then, dealing
with the uncertainty [associated with my illness] than I did.
I suppose in some ways it looked like he'd already lost a
girlfriend and he just couldn't take it.... I don't even
bother dating anymore. I just don't want to hurt any more
people than I'm going to hurt.
toward ongoing behavior change helped the participants to
weather increasing fatigue and discom-fort. Reframing their
world views in a process of letting go of traditional,
familiar life patterns and activities enabled the participants
to discover solutions for managing life and health with
varying degrees of success.
Patients and Health While Waiting for a Liver Transplant
Surrendering the Self
limits and limitations exceeded personal resources, the
disciplining process weakened and the participants ultimately
surrendered the self to the circumstances of life and health
that imprisoned them during their wait for transplantation.
Two subthemes described surrendering of self: isolating the
self and entrusting the self to another.
Isolating the Self
to engage the self and the social system sometimes faltered,
thereby diminishing self-worth over time. For one participant
who had awaited transplantation for 31 months, goal-directed
behaviors were replaced by a "whatever happens,
happens" attitude and loss of self-esteem.
I used to be very active and I exercised quite a bit... and now, I
feel like a pile of mush and I think that's something that
may... help me [to have an exercise facility].... But that's
self-esteem and feelings of unworthiness began a process of
self-isolation for another participant.
Some of them [friends] go out of their way to say, "Come on
over. We're having a few people over, we want you to come
over." I myself, I guess to a certain extent, I'm my own
problem. I tend to isolate myself because I don't want to go
to these gatherings where people are enjoying themselves and
drinking and having fun. I feel inadequate basically.... I'm
isolating myself from them. But you know, I have very few
close friends... who understand what I've got [hepatitis C]
and they say, "We want you to come over." And I
don't. I guess that's my own fault.
Entrusting the Self to Another
the self to another occurred when psychological and physical
events precluded use of self-disciplining processes. The
inability to sustain engagement with the social system
sometimes immobilized the individual's internal and external
resources for health. For some, feelings of unworthiness
hampered the ability to communicate suffering and needs to the
surveillance teams, where strategies for reframing and
strengthening a sense of self-worth might be found. In this
instance, a silent psychological surrendering of the self to
an "unknowing" social system occurred. For others,
episodes of transient self-surrendering accompanied
experiences of physical pathology such as catastrophic
gastrointestinal bleeding and encephalopathy. Although
self-surrendering occurred during medical emergencies, the
process was arrested, at least temporarily, by intact
disciplining mechanisms that enabled the individual to reach
out to the social system for assistance. When inner and
external resources for health were combined, suffering was
minimized. One participant's near-death experience illustrated
how the process of engaging with a friend made
self-surrendering a transient event through entrusting the
self to another.
I ended up throwing up, pure red... then I got myself together and
went to lay down.... I would never have told anybody that I
thought I was going to die. The only reason I called my friend
was to take me to the hospital because of all of these things
happening. I thought, I'll go to the hospital, they'll give me
a shot. I'll make it alright. She got me through to the
[community] hospital.... We drove straight in and the next
thing I know -- [I'm] throwing up, scope down my throat while
I was throwing up in the sink. The doctor arrived and I'm
watching and he's like, scared.... At this time I called my
Mom [who lives in England] and I said I'm going to die... and
she's crying, "Don't give up, don't you dare!" And
at the time you just felt like you were going under... I can
see the train lights coming. I'm not going to fight for my
Mom. I'm too tired. I can't do this anymore, my body can never
go through that again.
study participants continued to move forward. By the end of
this study, 4 participants continued to wait for an organ, 2
participants died before an organ became available, 1
participant died a week following transplantation, and 5
participants received a liver transplant. One participant
summarized how those awaiting transplantation must
successfully experience life and health resources:
I think you have to be at peace with yourself... and I am. I know
that if I got called [for a transplant] tomorrow when I closed
my eyes to go under, it will be that whatever happens is the
way it is meant to be. It's like a final good-bye, but it's
not really... because nobody can tell you the outcome.
Patients and Health While Waiting for a Liver Transplant
participants in this study, all of whom had been waiting for a
transplant for more than a year, have portrayed their
experience of resources for life and health during the waiting
period. In addition to unmet information needs, these
participants described lack of psychological support,
perceived social stigma, and caregiver burden to be confining
elements in their lives. The financial burden described by
participants in the previous American studies was less a
source of anxiety among this Canadian sample. Although loss of
control of one's usual patterns of living was experienced by
all participants, some control was regained as these
individuals learned how to manage symptoms and pace themselves
and their social relationships.
contrast to previous research findings,[4-8,10,11] feeling isolated from other transplant
candidates was a common experience among the participants in
this study. Social stigma related to liver disease and the
realization that another individual must die in order for one
to have life were isolating phenomena. Furthermore, the
confinement imposed by one's failing body and mind, by one's
own social network, and by society in general created feelings
of isolation and a sense that one awaited transplantation
with the findings of previous research, the waiting period was
a time filled with effort to minimize and overcome the
distress of functional and cognitive decline amid the
uncertainty of obtaining a donor organ. Managing distress was
achieved by mobilizing extensive resources for life and
health. The findings of this study extend previous
understanding by illustrating this much more comprehensive
list of resources and their use within the holistic social
process of awaiting transplantation.
of being trapped or confined within their bodies and their
social context led participants to use particular inner and
external resources for health, with consequent diminished
perceptions of confinement. The inner resource and social
process of self-disciplining strengthened the participants'
will and determination to reduce confining experiences imposed
by personal limitations and social context. Taking a
one-day-at-a-time approach to life and using self-talk were
key self-disciplining strategies. Davies
and McWilliam et al
described how individuals with the human immunodeficiency
virus and frail chronically ill seniors, respectively,
similarly adopted a one-day-at-a-time approach and self-talk
strategies. Davies contends that for those experiencing life-threatening illness the
present becomes an end in itself, rather than the means to a
future life that has become increasingly uncertain. The
viewing of life in shorter segments may mitigate the fear and
anxiety associated with what lays further beyond.
The external resources made available to the participants,
such as practical aid, a listening ear, and medications,
further strengthened their personal inner resources and
self-disciplining process of individuals awaiting a liver
transplant worked to achieve attitudinal changes that
integrated uncertainty, suffering, and traumatic circumstances
into their lives while awaiting transplantation. These
findings also are consistent with other research. Attitudinal
changes similar to those described by the participants in this
study have been described[5,9,28]
as a form of personal transformation or transcendence that may serve to mitigate suffering and nurture
hope for a positive future. Holding on to normal living
created a sense of hopefulness for the future, thereby
enabling them to continue the self-disciplining process and to
persevere with life and goal achievement. In previous
research, the external resources for health used to sustain
daily living and health among heart transplant candidates were
found to originate primarily within the family network. In
contrast, the participants in this study experienced
diminished involvement with social and family support
networks, an isolating experience. Isolation was accompanied
by diminishing self-worth and a sense of helplessness and
hopelessness which, in turn, under-mined the self-disciplining
required for engaging the social system, thereby precluding
access to needed social support. Similar findings have been
reported among individuals with depressed mood.
the inability to sustain the disciplining effort for engaging
one's inner and external resources for health led the
participants in this study to surrender the self to the
circumstances of life and health that confined them. This
final component of the holistic social process of the
experience of resources for life and health while awaiting a
liver transplant has not been reported previously.
study findings illuminate several important implications for
health professionals working with patients awaiting
transplantation. Although some of the externally imposed
limits and personal limitations associated with the waiting
period cannot be avoided (eg, loss of driver's licenses,
restriction of international travel, and cognitive and
physical decline), other hardships can be addressed. By taking
a more collaborative approach to working with patients and
their families, transplant teams might improve the scheduling
of clinic visits to reduce patient fatigue and the time away