Symptom Burden in Renal Failure

Findings

Renal failure is a progressive and irreversible kidney failure where dialysis is the most effective modality of treatment. Dialysis results in high survival rates and maintains the life of patients at satisfactory levels. However, this study found that there are impacts of symptom burden in patients with renal failure receiving dialyses. The findings of this study were grouped into four main themes. The themes are the physical, psychological, social, and cognitive impacts. The following question was asked to get a clear picture of the impact of the symptom burden. What is the experience (holistic impact) of symptom burden in patients receiving HD?

Physical Impact

The participants described their daily activities that required physical functioning. They could no longer carry out simple daily activities like self-care, family responsibility, and hobbies. Some of them could not work, and most of them were unable to continue with education, activities they could engage in before the development of the symptom burdens. The patients identified fatigue as the main reason why they could not engage in activities that required physical involvement. One participant responded that they were unable to do self-care, that they stopped doing housework and were so tired that their mother helped them comb their hair. Another participant installed lights and repaired things that were no working in the house, but their mother now has to help them brush their hair because of the tiredness after dialysis.

Another participant described their inability to take care of their sick mother, something they could previously do. They stopped taking care of their ill mother because of stress and tiredness and symptoms that they experience after dialysis sessions. The physical capacity of the participants was badly failing that one participant described it as ‘My mettle got weak. Before, I used to cook and prepare the meals, but now if only I go and bring some water to drink, I feel tired. ‎ ‎I liked cooking some dishes like stuffed vegetables that take time and effort and need high skill, but now this became impossible.’ One participant described dialysis as controlling their sleep that after dialysis they feel exhausted that they cannot go out until the following day. They stopped performing their responsibilities and had to hire a servant at home. The participant used to be active, but after dialysis, they could not even help their servant. Participants could not also do their hobbies, and one equated dialysis to a wrestler pinning their opponent down making them fall. One participant liked cooking as a hobby, another enjoyed hunting, long safaris, and camping. Dialysis pinned them down that one participant whose hobby was farming had to sell his farm after he was informed that he had a renal failure because he preferred to rest. The impact of symptom burden in patients with renal failure receiving dialysis is severe that some of them cannot work and are unable to continue with education. They become unable to continue with school because of fatigue and inability to concentrate. One of the participants said they postponed their education because the fatigue and tiredness make them unable to be productive as a student. Some patients could not work and had to retire because of fatigue. A participant who is a teacher was unable to concentrate while teaching their students.

Psychological Impact

The study also identified psychological impact in patients receiving HD. Renal failure and dialysis have psychological effects on participants. Their mental state was impacted on by people's pity, and some wished they could be happy like they were previously, and felt nervous and frustrated. One participant had a psychic shock when he was informed that he had renal failure. A participant said he felt like a broken hand that cannot do anything. The participant added that he existed with no benefit and that a hand that cannot do anything could get cut off one day. This statement summarized the physiological effect of the symptom burden of dialysis. One participant said ‘I need the society not to look at us as only sick people. Such look of pity is annoying, and some words that show sympathy are hard to us even if showed unintentionally.’ Another participant felt irritable and nervous all the time thinking about the pains he is suffering. Finally, one participant felt so frustrated and hoped that he could take long trips with his family and be happy as he used to.

Social Impact

The symptom burden socially affected the participants that one common statement from them was that they preferred staying alone than leaving home for fear of symptoms. Dialysis made the participants unable to choose when to participate in social activities such as parties, going out with friends and traveling because they were restricted and tied by dialysis. Most of the participants cannot be away from home for many days because of the strict dialysis schedules. They equally cannot participate in social activities because it increases their symptoms even before their next dialysis sessions. Even after dialysis sessions, the participants feel so tired that they cannot go out. Also, the participants spend most of their time in dialysis sessions that they do not have time for social life. One participant said that the relationship with his friends is different because he is alone most of the time. Another statement that was common among the participants is that most people go out on weekends, except them, renal failure patients. One participant described the social impact of renal failure as ‘Before the renal failure, I was free and able to go and come whenever I wanted; I enjoyed unrestricted freedom.‎ ‎Now I am restricted.‎ ‎In the past, I used to go on vacations for a period ranging from one week to 10 days, but now it is difficult‎ ‎I have appointments on Saturday, Monday, and Wednesday.‎’

Cognitive Impact

The participants were not only physically, social, and psychologically impaired, their cognitive performance was also affected. Most of the participants were sometimes unable to remember certain things as their memory was affected. Besides, since the participants think about their pains and suffering most of the time, they lose concentration when their family is talking to them. Here is what one participant said about the cognitive impact of the symptom burden; ‘Even my memory was affected; yesterday my daughter took some money from me after I gave her permission, a little later I was asking myself where did the money go?‎ I asked my children, and my daughter answered "I took them for the purpose I informed you of. ‎ ‎At that moment I remembered!!‎’ Most of the participants said that they think of the pain they suffer and that even when their family members are taking to them, they cannot concentrate on what their family members are saying.