Most dialysis patients longed to be freed of the discomforts and demands of treatment. Many complained of feeling cold, tired, stiff, and/or thirsty while dialyzing. Some also felt nauseous or experienced painful cramping. Between treatments, some suffered fatigue, disrupted sleep, or loss of appetite. They also complained about lifestyle restrictions, as this patient said: “…you no longer can do what you used to do…. I don't like to come in here. I got to go in there three days a week … that's kind of depressing….”
Yet most patients remained committed to their treatment because they recognized that without dialysis, they would die rapidly, as this patient said: “…you deal with it, because if you don't deal with it, you're not going to live too long.” Given this, whether awaiting a transplant or not, the fundamental issue facing patients was how to make dialysis tolerable. Thus, while not as socially constrained as the prisoners studied by Chatman, dialysis patients also used information to help them survive their situations. Hence, the information sought, shared, and used in the clinic was oriented towards the purpose of finding a way to go on.
Learning to Live on Dialysis
How did the information world of dialysis clinics help people learn to tolerate treatment? Through immersion in an information-rich environment and the repetition of treatment routines, patients gradually learned to deal with common problems such as discomfort/pain, boredom, dependency, and lifestyle restrictions. The environment also provided examples of visibly ill people and deaths of fellow patients that reinforced the necessity of treatment.
In keeping with Chatman's theory, the information world of the dialysis clinic was comprised of numerous informing elements that together gave patients most of the information they needed. These elements included caregivers with educational roles; informing events; the appearance, actions, and stories of other patients; the behavior of machines and instruments; and laboratory results. Patients also learned to read their physical sensations and experimented with new routines and remedies with the aid of others.
With regard to the problem of physical discomfort and symptoms, patients learned through trial and imitation to bring comforting items with them to the clinic, such as blankets, headphones, reading material, and food. Through experience, patients also learned how to manage symptoms such as cramping, as this patient described: “I know now what the feeling is before you're going to cramp. So, I know that, OK, I either want to change the goal or I want them to give me some saline.” Staff such as technicians and nurses also offered advice and remedies to reduce symptoms, such as painkillers or antacids. Some even playfully arm-wrestled with patients to prevent their blood pressure from dropping. Over time, each of these lessons helped patients to build a treatment routine, as this patient explained: “…as time go on, you learn more every time … you … get all the answers [from] the experience.”
For problems of boredom, patients came to rely on forms of escapism common in the environment. Many patients slept to pass the time, as this patient explained: “…if you can manage to sleep two hours … you only got two hours to deal with it and wait … everybody in here sleeps.” Watching television was also common for this reason. Indeed, dialysis clinic staff actively coached patients to engage in such activities to make treatment tolerable, as this staff member emphasized to a resistant patient, “You can watch TV while you're here, listen to music….”
Dependency on clinic staff, as well as limited mobility during dialysis, were also psychically challenging for some patients. Here, staff and other patients played a particularly vital informing role by demonstrating the power of humor to lighten the experience. Joking and gentle banter were ubiquitous in this clinic and often revolved around making light of the situation and its indignities, such as when staff joked about enjoying giving patients needles or when this patient who had more than three hours left of dialysis joked: “I'll just run off and be back soon.” Witnessing, and being drawn into, such humor can be thought of as a series of informing events about humanizing a difficult situation.
Problems with a restricted lifestyle, particularly around diet, were also progressively addressed through clinic-based informing. Staff informed patients about food and fluid restrictions in various ways, including one-on-one consultations, ad-hoc feedback, and response to questions. Additionally, often in the waiting room, patients shared personal experiences with such restrictions. For example, this patient said that he asks others: “what their intake is on alcohol or do they like seafood.” Such feedback helped patients to learn about how to live with such restrictions.
As would be envisaged by Chatman's theory, an interesting aspect of this type of information is that it was at least partly produced within the world of the dialysis clinic, and thus was tailored to the needs of people in that world.
In accordance with Chatman's theory, informing directed towards making treatment tolerable helped patients to develop a common kidney disease–related worldview that matched the demands of the situation. This worldview was one of acceptance and a determination to make the best of things, as this participant said: “You just accept what it is. And you move on. It don't stop me from doing anything else. The days when I'm tired, fatigued, I go back and go to sleep. That's about all you can do.”
This worldview was thus oriented towards the everyday, local experience of dialysis. It also helped to create the boundaries of an experience that became increasingly routine and taken for granted. Yet this worldview also supported the value of escape. Like Chatman's prisoners awaiting probation, patients sought kidney transplantation as a “way out,” they spoke frequently about transplant prospects, and transplant-related information seeking became subtly obligatory, as this patient complained: “They talk about it but … right now I'm not into nobody's opinions about what they think I ought to do….”