How Patients Manage Life and Health While Waiting for a Liver Transplant
from
Progress in Transplantation
Posted 04/18/2003
M. Susan Baker, RN, MScN, ACNP, Carol L. McWilliam, RN, MScN, EdD
Abstract and Introduction
Abstract
Liver 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 period.
Introduction
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.
Literature Review
Creating 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.[9] 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,[6] 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.[8] How these coping strategies helped the patients were not explicated by these studies.
Cupples et al[11] 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 unknown.
Human, 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.[9] 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]
Hirth and Stewart[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 population.
Although family support and hope are vital to people awaiting heart transplantation,[10] 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.
Methods
Sample
The 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 fluently.
In 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 was discovered.
Study participants (Table 1) 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.
Ethical Considerations
Several 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 obtained.
The 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.[13] 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.
Data Collection
A 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 view.[14,15]
Interviews. 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 (Table 2). 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 60-120 minutes).
All 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.
Field Notes. Descriptive field notes are an important means of developing a rich qualitative analysis. 13 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 later transcription.
Participants' Documents. 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 Analysis
Three 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).[19] 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.
As 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.[12] The constant comparative method was used until the core category was identified and no new information about categories and their properties was found.
Credibility
The 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.[15] To assess adequacy in this methodological domain the criteria include: fit, understandability, generalizability, control,[12] member validation,[16] and audit trails.[15,16] In this study, the researcher incorporated all these criteria to maximize the credibility of the discovered substantive theory.
Fit. 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 their properties.
Understandability. 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.
Generalizability. 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 were lost.
Control. 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[12](p245) maintain that
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.
The criteria of control naturally followed because the researcher was faithful to the grounded theory methodology, thus permitting elevation of the data to a comprehensible abstraction.
Member 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.
Audit Trail. 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.[16] 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.
Limitations
The 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.[20] 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.[21] 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 derived.
Results
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Figure 1. (click image to zoom) The holistic experience of
awaiting liver transplantation: a process of experiencing
confinement, disciplining the self, and surrendering the self.
|
Experiencing Confinement
Limits Imposed by Society
Surveillance 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?"
Some 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.
Although 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 seriously ill.
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.
Participant-surveillance 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.
Despite 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.
Stigma. 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 mediocre chores.
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].
As 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.
Caregiver Burden. 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
The 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.
Feelings 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 like that.
Diminishing 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 social network.
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.
Limitations 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.
Other 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.
As 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 system.
Disciplining the Self
Engaging the Social System
Participants 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.
Following 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.
Presenting the Self Positively. Morrison[25] 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.
Another 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 manner.
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."
Although 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 follow-up experiences.
Engaging 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 advised.
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 waiting].
Engaging the Self
For 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.
Searching 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 spiritual health.
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.
The 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.
Seeking 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.
The 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.
Controlling Symptoms. 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.
Ability 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.
When the symptom control strategies offered by the surveillance team were inadequate, the participants discovered, through trial and error, ways to augment management of debilitating symptoms.
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.
The 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 on going.
Subject: If I let myself go I know I can get really down and miserable.
Interviewer: How do you avoid this?
Subject: Determination.
A 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.
Distracting 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.
Some 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.
Although 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 ill.
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 be doing.
The 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
For 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 goals.
Changing Attitudes. 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].
The 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.
Other 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.
The 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.
The adopting of a "one-day-at-a-time" attitude helped participants to manage the limitations imposed by an uncertain future.
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?
The 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.
Not 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 achievement.
Setting 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.
Effort 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.
Surrendering the Self
Isolating the Self
Self-disciplining 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 not available.
Diminishing 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
Entrusting 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.
Overall, 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.
Discussion
The 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.In 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 alone.
Consistent 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.
Feelings 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[26] and McWilliam et al[9] 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[26] 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.[27] The external resources made available to the participants, such as practical aid, a listening ear, and medications, further strengthened their personal inner resources and efforts.
The 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[29] 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.[30]
Ultimately, 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.
These 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 from home and family. Also, professionals might explore and assess the level of information and psychological support being used, or required, by patients awaiting transplantation in the community, and then work more collaboratively with the patient and family to facilitate meeting these needs.
The limits imposed by social stigma, caregiver burden, and self-isolation may also be diminished by healthcare providers who shift their orientation away from the sophisticated physical care required to providing a listening ear, assisting patients and their family to reframe their experiences, and offering resources for support. Periodic telephone contact with the patient and their family would allow care providers to intentionally investigate and evaluate how patients are managing those confining psychosocial processes that develop over time. Although transplant candidates themselves clearly develop strategies for weathering the waiting period, disciplining themselves to carry on, nurses may assist patients by guiding them in directing their health-promoting effort holistically toward their larger life context,[9] promoting conscious reflection on new goals for life and health while awaiting transplantation. All healthcare professionals also need to consciously guard against unwitting perpetuation of social stigma experienced by transplant candidates.
Mutual sharing of experiences and anxieties have been shown to diminish anxiety and isolation, and to foster the development of social networks of support.[31] Transplant candidate mentoring programs, in which patients voluntarily speak with other patients to share their experiences and answer questions, may afford patients the support needed to diminish feelings of isolation.[32] Healthcare providers, in collaboration with transplant candidates and their families, can facilitate the development of social networks and venues that enable transplant candidates and their families to communicate with others who also wait for solid organ transplants. Patients, together with family members who have the interest and the physical endurance, might be encouraged and supported by nurses to organize venues for sharing mutual experiences and successes during the waiting period.
Conclusion
As the worldwide shortage of donor organs extends the waiting period for liver transplant candidates, it is important to understand how transplant candidates manage their resources for life and health during this
period. The findings of this study illuminate the basic social processes of confinement, self-discipline, and self-surrender as individuals await a donor organ within their social context, and the health processes and resources that are used during this particular experience. The processes and resources discovered present opportunities for healthcare professionals to examine their practice and efforts to facilitate health promotion activities among patients who await liver transplantation in the community.
Acknowledgements
The authors wish to acknowledge the Multi-Organ Transplant Program at the London Health Sciences Centre, London, Ontario, for their generous funding of this research.
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