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12楼
发表于 2003-8-8 09:41
Recipient Perspectives on the Quality of Life
All research participants were informed several times that the primary focus of the study was to better understand the quality of life of liver transplant survivors. Toward this end, the respondents were asked several questions about how quality of life should be defined. As an interviewer I made it clear that these were important questions, and I explained the significance. In some cases I was not fully satisfied with the way in which the respondents understood and answered the questions, so I asked them again. Nevertheless, some of the respondents were reluctant to speak socially, and were only interested in giving personal accounts of the quality of life. Although there exist many similarities in the responses, no response was the same. Reading the responses should allow professionals and lay persons alike to share in the patient perspective. Therefore, the responses from all of the participants are presented here:
R1: What comes to mind for me is, I reverted to a life of pre-diagnosis. Prior to my diagnosis of liver disease. My life may not be perfect, but it is 99% of what it was prior to being diagnosed five years ago. My life is truly normal. Short of not eating grapefruit, and getting up in the morning and then at night and taking my pills, my life is perfectly normal. I can do what I want to do, and I can be happy with it. The little things, like, not ever competing in a marathon, or something like that. [emphatically] I will tell you that I have written off anything that I can’t do anymore, and I have a life that is exactly what it was five years ago.
W1: Don’t give the false impression that you could actually run a marathon before the transplant.
R1: No. [laughter] I can do anything. There is nothing in my life, that I can’t do that I want to do. I think a good, my measure is, I look at what my life was like before liver disease. And that is the life I’ve got. That to me is success.
R2: Well, I think the Toledo Blade defined it well in the story that they did on me a few years ago which headlined, R2 Doubles Volunteer Work Since Transplant, which indicated I was doing more after the transplant than I was before. And that’s true. By volunteer, they meant, I already told you that I’m the president of the American Liver Foundation, I am on the board of directors of the Men of Color, which is an HIV/AIDS awareness in the African American Community, I am on the board of the Lucas County Public Health AIDS Awareness program. I am on the vestry board at church. I am on the board of directors of the Urban League of Greater Toledo. I am on the board of directors of Metropolitan Park Productions. I am on the board of directors of Connections training center, which is a health care training center on the east side. I am a docent on the Trolley Trots. I’m swamped out. I just yesterday was elected to the board of St. Paul’s Community Center.
So, I mean, my Quality of Life is just great as far as I’m concerned. I’m busy, I’m active, I’m doing something all of the time. Um, I very rarely even think about my transplant except in my morning prayers. I don’t talk about it. I don’t make a point of saying, “oh you know, I had a liver transplant.” I, get a kick out of people who say, “Oh my god, you shouldn’t be lifting that should you?” “Why?” My surgery was ten years ago. It’s healed. I just here the other day. I picked up a big box, my boss, who happens to be a woman, and she said “I’ll carry that R2 you shouldn’t be carrying that.”
R3: I suspect that it is as varied as anything else. It was apparent to my wife and I. And as a transplant recipient, I’ve met plenty of people who have had liver transplants. That, people, a lot of people, who had had chronic illnesses, kind of got used to being sick. And so, the quality of their life, as what they were satisfied with, and what I would be satisfied with are just [emphatically] polar opposites ... and I worry because I was very fortunate that when I was transplanted I was still in relatively good health. I was obviously still working full-time. Now, people have to be so sick, and it takes so long for them to get better, uh, and yet they can, and they do, so it’s changed a lot since I was transplanted. You know, I don’t know how unfair, you know, we don’t want to make judgements about them, because people are so much sicker now. By and large I think most people have a very good quality life, a high quality of life. They’re able to do whatever they want, they tend to be older so maybe they don’t go back to work ... so yeah, it’s very important. I really feel in general. Liver transplantation, and liver transplants, you know liver transplantation. It uh, drastically improves the quality of life. And there is no reason people who have transplants can’t live a normal life. And continue to be participating in society, contributing members of society. Yeah there are some people who aren’t, but they are more the exceptions.
R4: Just, moving ahead. Just keep moving. Don’t slow down. A new beginning for them. Um, just a way to start over for them I guess. Not like, a new job, but just another new beginning for them to live.
R5: I think quality of life, you can measure it in several different ways, quality of mental, physical, uh, and that kind of stuff. In both of my cases, it is definitely better. Physically, obviously, the surgery has been a success. And physically, my quality of life has never been better as far as I’m concerned. Like I said I’ve got more energy than I ever had. I eat better than I ever have. You know, I think I’m a healthier person than I ever have been. At least for a long long time.
Mentally, I, I, think I’m healthier than I have been as well. My quality of life has increased both mentally and physically. Mentally because, I’m able to sort through things, with the frame of reference. And I’m not stating that everybody should almost die. Cause that would be kind of a goofy thing to go through for everybody. In terms of a frame of reference, nothing beats being up against the wall and knowing, they tell you later, “We almost lost you.” and things like that. Um, to know, in some cases who your real friends are. To know in some cases what’s important and what’s not important. I think in that case it is only a person that has had a serious problem, whether it be a disease or whatever. Not necessarily a transplant patient, but a person who has been very sick, and their family can only really understand how that person has changed or would change based on. You hear people on those FOX shows always trying to talk about near death experiences, and that kind of stuff. I wouldn’t necessarily go that far. But you know, when you are up against that wall, you definitely, you don’t think about it really at that time, it’s later on.
I would say my quality of life both mentally and physically, is far improved over the first 40 years of my life, [laughs] I guess you’d have to say.
I: Can you think of a general concept of what quality of life means for liver disease and transplant patients?
R5: Well, the quality of life for a liver disease patient would be, not, you know. Once again would be several things, but a quality of life, would be not being tired all of the time, things that the average person takes for granted that are taken away from you. Like I said, you brush your teeth you start bleeding from your gums and you could bleed to death. Things like, this thing with the uh, ammonia. Uh, the quality of life that we all take for granted, when your liver works well. I mean most people don’t ever think about their liver, because it’s the most forgiving organ in your body. You can abuse it for years and years and years, and many people abuse it their entire life and it just continues to process out all that crap you put in it and makes all the important things it makes and doesn’t complain. Basically what they say is if you get to the point where you have problems with your liver, you’re past the point of having those problems fixed. Because you could have a lot of problems with your liver and never know anything about it. Simple, it’s amazing simple simple things, like, [pause] not being tired all of the time. How that quality of life that you take for granted, the average person takes for granted. Well, I’ll just get a couple extra hours of sleep, and the liver patient can’t, either can’t sleep, or just can’t ever not be tired, and totally worn out. I don’t know if your mom ever went through that, just absolute, you know, it’s a chore to get out of a chair.
R6: It’s hardly any different than it was before. The only thing, you realize now what life is. You can enjoy the birds and the flowers and different things that you didn’t look at before, where now, it means something to you because you could have lost all of that you know.
W6: And a lot of the things we go through. We think that he wouldn’t have been here to do that. And,
R6: Yeah, I’ve seen all three of my kids get married. Now I’ve got three grandkids.
Several different perspectives on the quality of life are represented here. The responses can be placed into two main categories: restoration to normalcy, and the transcendence of norms.
The first category, the restoration to normalcy, is best represented by R1. It is R1's contention that the quality of life for liver transplant recipients be defined with a historical reference to what their life was like without liver disease. All six of the respondents referred to historical reference points when defining the quality of life concept. This implies that quality of life is a historical concept. It seems that the respondents would advocate for the quality of life after a liver transplant to be measured in comparison with what life was like before patients were diagnosed with liver disease, and before they began to have symptoms of liver disease. Although R4 was so young that he lacks such a historical frame of reference, he contends that quality of life should be defined as a kind of new beginning. In one way or another five of the six participants defined quality of life after liver transplant as being able to resume normal social roles. The respondents were most likely to define these roles historically, but they could also be defined in terms of contemporary norms.
R2's definition stands apart from the others because he does not fully recognize the need to resume normal social roles. In contrast, he sees transplantation as the pathway to the transcendence of normal social roles. R5 and R6 share in R2's standard for the quality of life. Life after transplantation is seen as having qualities that were not possible before transplantation. R6 is the most direct and eloquent when he says that, “you realize now what life is. You can enjoy the birds and the flowers and different things that you didn’t look at before.”
This second perspective may be related to the degree to which the respondent was ill before receiving the transplant. R5 and R6 were critically ill at the time of their transplants. It can be observed that R5 and R6 also had the most distinct and profound statements about how their quality of life has been not merely restored, but enhanced through the process of liver disease and transplantation. These respondents had very close encounters with death. It could be hypothesized that the closer a liver disease patient comes to his or her own death, the more likely he or she is to express such an enhancement of the quality of life.
Interestingly, Joralemon and Fujinaga (1996) harshly critiqued a study by Leyendecker et al (1993) which concluded that the psychological well-being of liver transplant recipients is better than that of the healthy population. The critique was that such a conclusion was counter-intuitive, and was likely to have been polluted by the recipients’ sense of indebtedness to the transplant center staff. From the personal accounts presented here, it seems that Leyendecker et al’s (1993) counter-intuitive conclusions are at least somewhat correct. Having spent a great deal of time with many liver transplant recipients, it is my subjective, (and possibly biased) opinion that these individuals actually do represent a level of psychological well-being that is higher than the average for the healthy population. Although this does not excuse Leyendecker et al from not having attempted to better explain their conclusions, it certainly is a vindication for a component of their research.
These findings have important consequences for quality of life research. They suggest that the quality of life is a subjective notion held by individuals about their own lives. It has also been shown that quality of life is a historical concept defined on the basis of shared cultural definitions for functioning in normal social roles. Quality of life may also transcend the boundaries of normal social roles. Individuals who have experienced extraordinary processes such as liver disease and transplantation may perceive themselves to be experiencing a quality of life that is unattainable for the majority of the healthy population.
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