Chronic renal failure patients' perceptions of the everyday implications of hemodialysis therapy

Simone Guimarães Teixeira Souto^I; Graziela Seixas Lima^II; Patrick Leonardo Nogueira da Silva^III; Ricardo Soares de Oliveira^IV; Renata Patrícia Fonseca Gonçalves^V; Edna de Freitas Gomes Ruas^VI

^I Master in Nursing. Professor of the Nursing Department of the State University of Montes Claros. Montes Claros, Minas Gerais, Brazil. E-mail: simonegts28@yahoo.com.br
^II Professor of the Nursing Department. Faculdades Unidas do Norte de Minas. Montes Claros, Minas Gerais, Brazil. E-mail: grazylima@yahoo.com.br
^III Master student in Health, Society and Environment. Professor of the Nursing Department of the State University of Montes Claros. Montes Claros, Minas Gerais, Brazil. E-mail: patrick_mocesp70@hotmail.com
^IV Specialist in Cardiology Nursing. Professor of the Nursing Department of the State University of Montes Claros. Montes Claros, Minas Gerais, Brazil. E-mail: rsoaresmoc@gmail.com
^V Master in Nursing. PhD student in Nursing. Professor of the Nursing Department of the State University of Montes Claros. Montes Claros, Minas Gerais, Brazil. E-mail: renatapfonseca@yahoo.com.br
^VI Master in Nursing. Professor of the Nursing Department of the State University of Montes Claros. Montes Claros, Minas Gerais, Brazil. E-mail: efgomesruas@yahoo.com.br

DOI: http://dx.doi.org/10.12957/reuerj.2017.8093

ABSTRACT

Objective: to identify chronic renal failure patients' perceptions of the everyday implications of hemodialysis therapy. Methodology: this qualitative, observational, descriptive, cross-sectional study was conducted with 20 patients with chronic renal failure (CRF) in Montes Claros, Minas Gerais, Brazil. Results: the analysis generated the categories: "the influence of hemodialysis on the life of CRF patients", in which adaptation to a new lifestyle affects biopsychosocial factors, and restricts the patient's activities; and "nutritional restrictions: personal and social repercussions for the person with CRF", which is an important factor in treatment efficiency, but leads to social isolation and deprivation of leisure. Conclusion: understanding these changes leads to new strategies to improve the quality of care provided. Therefore, education, "embracement", motivation and including the family/community constitute strategies for strengthening coping with hemodialysis.

Keywords: Chronic renal insufficiency; renal dialysis; hemodialysis hospital units; coping strategies.

INTRODUCTION

Chronic diseases are not defined by their apparent or actual severity, but rather because they have no cure or have very prolonged duration. These include diseases that lead, in a longer or shorter period, to death ¹.

In recent years, chronic diseases have received greater attention from health professionals. This is because these diseases have begun to play an important role in pan-population morbidity and mortality and are no longer exclusively of the elderly population, since youngsters of productive age have also been subject to these diseases².

Chronic kidney disease (CKD) is among the diseases that has grown annually, causing serious public health problems because it has progressive evolution and therefore becomes a condition without alternatives for immediate improvement. According to data from the annual census of the Brazilian Society of Nephrology (SBN), the estimated number of patients undergoing dialysis in 2014 was 112,004³.

CKD is defined by the progressive and irreversible loss of renal function, enabling the patient to perform renal replacement therapy in the form of peritoneal dialysis (PD), hemodialysis or transplantation. Hemodialysis has been the most indicated therapy in recent years, considering that CKD requires rapid intervention due to the difficulty of its diagnosis⁴.

Thus, this study aimed to identify the perception of the patient with CKD regarding the implications of hemodialysis therapy in their daily lives.

LITERATURE REVIEW

Hemodialysis is defined as a process of artificial blood filtration in relation to accumulated impurities. It is used for patients with end-stage renal failure or acutely ill patients requiring short-term dialysis ^5,6.

Hemodialysis can often represent a hope of life for the patient, since the disease is irreversible. However, with adherence to treatment, patients face difficulties in accepting the disease, in social interaction and in dealing with fear of death or incapacity, among others⁷.

The habitual living standard of the patient with CKD tends to be affected, since an individual who usually have not needed the care of a health team starts to face the reality of needing constant assistance of the multidisciplinary team and of a machine, losing much of their autonomy of life⁸.

The user of hemodialysis services presents some symptoms that can result in physical limitations and complications at work, which, as a result, may interfere with their standard of living and habitual routine. Technological and therapeutic advances in dialysis have contributed to an increase in the survival of the CKD patient. However, it does not enable them to return to life in relation to qualitative aspects².

The individual's perception of his or her position in life in the context of culture and value system in which they live in relation to their objectives includes some main domains, such as psychological status, physical health, level of independence, environmental characteristics, social relationship and spiritual pattern^9,10.

METHODOLOGY

This is a descriptive, observational and cross-sectional study with a qualitative approach performed with patients diagnosed with CKD undergoing hemodialysis treatment at the Nephrology and Hemodialysis Center (CNH in Portuguese) of a Hospital Foundation located in the city of Montes Claros, Minas Gerais.

The CNH of the city of Montes Claros, Minas Gerais, was inaugurated on October 29, 2007. This institution assists 106 patients registered for hemodialysis. Participants were 20 patients undergoing renal replacement therapy (hemodialysis) who were performing the treatment in the morning and afternoon shifts. Patients accepted to participate voluntarily and were randomly chosen according to the inclusion and exclusion criteria of the research.

Patients who were undergoing hemodialysis treatment and aged between 18 and 65 years were included in the study. Patients who were undergoing other types of dialysis, such as intermittent peritoneal dialysis (IPD), continuous ambulatory peritoneal dialysis (CAPD), continuous cyclic peritoneal dialysis (CCPD), continuous dialysis, among others, and those who were younger than 18 years were excluded from the research.

For the accomplishment of this research, in the first place we sought to acquire a previous knowledge on the subject addressed through the scientific literature. Then, a semi-structured interview script was developed as a data collection tool. An MP3 player was also used to record participants' speeches during the interview and for later transcription in full of the answers collected.

The research was carried out in May 2009 by the researcher in charge, with a previous and anticipated appointment with the nurse of the sector of the hospital. Before starting the data collection procedures, the researcher guided the patients in relation to the purpose of the study, read and presented the Informed Consent Form (ICF) to authorize the interview and the recording of participants' speeches. After the recording, the statements were transcribed in full to ensure the veracity of the information.

Patients were approached at the time they were undergoing hemodialysis treatment. The interviews were carried out individually and, at the first moment, researchers asked questions that could characterize the research subject through information about age, marital status, profession, schooling, among other variables. Then, questions were made related to the interferences of the disease in the daily life of the CKD carrier, the adequacy of these to the diet and the modifications in their social life.

Data collection was completed when the data was saturated, that is, when information began to be repeated.

After the transcription of the statements, the data were analyzed through the content analysis method¹¹, which is defined as a set of communication analysis techniques that uses systematic procedures and objectives to describe the content of the messages. Thus, the contents were categorized and discussed according to the following so-called categories: the influence of hemodialysis on the life of CKD patients; nutritional restrictions: personal and social repercussions for CKD patients.

To maintain the patients' anonymity, they were named by codes, these letters and numbers being A1, A2, A3,..., A20.

This study followed the ethical principles in research with human beings provided for in resolution 196/96 of the National Health Council, in force at the time of the study. It was approved by the Ethics Committee in Research of the Faculdades Unidas do Norte de Minas (CEP/UNORTE), under opinion no. 026/2009, of May 14, 2009.

RESULTS AND DISCUSSION

As for the profile of the 20 patients interviewed, they are included in the age group between 18 and 65 years. There was a predominance of males, with 13 (65%) participants, the age range of 55-65 years old (35%), primary education (55%), and family income of two to three minimum wages (45%). It is also verified that 10 (50%) were married, 13 (65%) were unemployed, 18 (90%) claimed to be Catholic and nine (45%) had three or more children, as described in Table 1.

Table 1: Socioeconomic and demographic profile of participants. Montes Claros, MG, 2014.

Source: the study's authors.

The influence of hemodialysis on the life of CKD patients

Adapting to a new lifestyle and getting used to the limitations of dialysis treatment can be a difficult issue to address because of several reasons. Many people do not find the right framework to deal with the changes they have acquired over the course of their lives^9,12. Of the total number of participants, only six reported being able to deal with CKD and its treatment without many daily changes, despite the various restrictions provided by the disease. This can be proven by the following statements:

The present study showed that treatment time has a great influence in adapting to the new way of life. The patients interviewed who have undergone this therapy for more than one year had a higher acceptance rate with CKD than patients with a shorter treatment time. Scientific studies agree with this when reporting that most people who go through unpleasant episodes react with sadness or depressed mood when faced with situations that, due to severity and duration, are greater than their adaptive capacity^6,8,13. The following statements confirm this idea.

There was also a sense of compulsion in having to accept the treatment in order to be able to survive. Many have reported faith in God as the main factor in gaining the courage to face a condition of life with no other choices. Treatment is necessary and needs to be faced without negotiation.

The condition of being chronically ill and of underdoing hemodialysis treatment brings several disadvantages since the person is faced with many changes in life. A large majority of respondents reported changes that are often seen as demoralizing, such as loss of employment, financial difficulties, decreased physical activity, partial inability to undertake walks, dietary restrictions, feelings of incapacity and dependence. Another scholar⁹ follows this line of reasoning and says that insecurity and loss of autonomy lead to disabilities in daily life.

The issue of the impairment of daily activities deserves to be highlighted since the set of some of these activities is source of satisfaction for the individual, according to the particularities of each person. Although some people reported that they have not stopped doing many pre-treatment activities, many said they have not felt able to do them anymore.

In CKD, the qualitative aspects are impaired by the innumerable losses and changes caused by the imposed therapy. The reality of having to rely on a machine to survive, needing frequent care and consequently having to give up work in favor of treatment brings these people a sense of incapacity within the family nucleus. There is often a reversal of roles in the family. A researcher¹⁰ agrees that social role change within the family causes psychological changes due to the various losses deriving from treatment. Of the people interviewed, most have not been working currently. The following statements reveal that one of the greatest lamentations regarding lifestyle change was the renunciation of employment.

In order to proceed to the dialysis treatment, patients need to maintain care with arteriovenous fistula (AVF), after all it is the venous access that makes possible the treatment, since it is the route that provides the intracorporeal circulation for the accomplishment of the hemodialysis. Self-care actions are the patient's responsibility¹³. Due to the care of the AVF, people are unable to perform activities that require some type of effort with the anastomosed arm, which implies biopsychosocial changes. There were some reports regarding the impossibility of performing activities related to AVF.

Hemodialysis treatment usually occurs three times a week; each session lasts four hours and the person becomes permanently subjected to this treatment¹⁴. According to the testimonies, the routine provides an increase in physical and mental fatigue, takes people out of their daily routine, decreases their ability to work and leisure, which makes their standard of living very restricted. Many people reported that on these days they are exclusively dedicated to the treatment and do not feel like doing anything else.

There are several obstacles that the routine hemodialysis treatment brings to the patient, especially for those people who need to commute from more distant places. These patients were the ones that showed the greatest dissatisfaction in having to come to carry out the treatment frequently. The qualitative aspects for these people are more affected as a result of losing their whole day traveling.

Nutritional restrictions: personal and social repercussions for the CKD patient

The CKD patient undergoing hemodialysis must follow a very restricted diet due to the effects of uremia. Although it is difficult to follow this reduced diet, if restrictions are ignored, it can result in health problems causing the risk of death^14,15. Many people feel different because they cannot eat some food and beverages. These restrictions affect the habitual standard of living, being difficult to adapt.

Adapting to diet is often difficult at the beginning of dialysis, at which point people are still absorbing the idea of being chronically debilitated and dependent on a machine for their survival. Thus, it was found that people with longer treatment times become more resigned with the changes and therefore more adapted, as it can be observed in the following testimony of a patient with seven years of treatment.

Another important factor that has been mentioned concerns those patients who, in addition to the renal problem, still had underlying diseases or comorbidities, such as diabetes mellitus (DM), for example¹⁵. In this way, the person is submitted to two specific diets, which increases the complication factor to its adaptation.

During the approach on nutritional and water diet, there was an isolated factor that deserves to be highlighted because of its importance in this context. This is a patient's report about his diet:

The diet for this patient gains a different context with respect to restrictions. He says he is knowledgeable about dietary restrictions but does not follow them because he does not like it and prefers to make use of foods that are forbidden. Added to this is the fact that he does not perform the treatment on days when he is not present in the city. This fact reinforces the idea that patient awareness should be continuous. A real re-education. A study¹⁶ stressed that complying with the diet is an important factor for the efficiency of the treatment, so it must be followed strictly. Hence the need for frequent care and attention to the patient.

Some authors^1,17 have suggested that the daily life of CKD patients undergoing hemodialysis is quite repetitive, favoring sedentary lifestyle, social isolation and the loss of some functions. Due to the various restrictions and mandatory treatment, people develop a sense of incapacity towards CKD. Many isolate themselves because they find themselves unable to attend social environments because of their limitations, linking their lives to the treatment alone. The arguments of the following interviewees can confirm this idea:

Another important factor that leads to disability and stimulates social isolation is the impossibility that some people have to work, since without working the salary is restricted to disability retirement, generating instability and a state of inactivity that prevents the person from social interaction. Some interviewees reported that living from disability retirement is bad and that they wanted to continue working.

Another relevant aspect that emerges in this study concerns the pleasure trips that have become more difficult due to the continuity of therapy, eliminating almost all the alternatives of leisure in this sense. Some people approach this difficulty:

Meeting what experts have said^1,18, these reports demonstrate that the chronic renal patient is faced with several changes throughout his/her treatment, generating enormous losses and social changes, which, consequently, interferes in his/her life in relation to the qualitative aspects.

CONCLUSION

The accomplishment of this study allowed knowing and identifying the changes in the standard of living of the CKD patient undergoing hemodialysis. It was verified that all interviewees are aware of the impact of a chronic illness on people's lives. Most patients' reports showed a negative balance in relation to the standard of living. There are many changes in the life of the CKD carrier; the daily reality of these people is permeated by modifications that limit them in a series of events and that require adaptations.

The daily modifications after adherence to the treatment were the most approached, such as the impossibility of performing bodily and recreational activities, job loss, dietary and water restrictions, changes in social life and the monotonous routine that affect patients' lives and contribute to decrease their quality of life.

Therefore, the knowledge of the profile of the patients interviewed and their speeches allowed considering that the nursing professionals, because they are the ones who spend most of the time close to the patients in dialysis treatment, should put into practice the role of educators, thus promoting greater conditions of improvements to these patients in order to affect their adherence and adaptation to therapy. Thus, educating, welcoming, motivating and including the family/community are also strengthening strategies for coping with hemodialysis. In addition, knowledge of the limitations and difficulties of the patients assisted in the service allows the multidisciplinary team to formulate new strategies in search of excellence in the quality of care.

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