RESEARCH ARTICLES

Peritoneal dialysis treatment: self-care practice in the family context

Joyce Martins Arimatea Branco Tavares^I; Marcia Tereza Luz Lisboa^II

^I Ph.D. in Nursing by the Nursing School Anna Nery. Federal University of Rio de Janeiro. Rio de Janeiro, Brazil. E-mail: joyarimatea@yahoo.com.br
^II Associate Professor of the Fundamental Nursing Department of Nursing School Anna Nery. Federal University of Rio de Janeiro. Rio de Janeiro, Brazil. E-mail: marcialuzlisboa@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2015.5132

ABSTRACT

The study objectives were to identify the difficulties faced by clients in performing continuous ambulatory peritoneal dialysis (CAPD) at home, and to analyze the solutions they encountered. Drawn from a dissertation approved in 2010, article reports a descriptive, qualitative study using the Convergent-Care Research method. With a state hospital in Rio de Janeiro as scenario, three groups of meetings were held with nine subjects. The semi-structured interview technique yielded themes that resulted in the category coexisting with the treatment – difficult points in carrying out CAPD at home. The participants noted that difficulties in the treatment can be overcome by individual adaptation with the help of nursing staff, support networks and family. It was demonstrated that the teaching model used for client education needs to be rethought so as to mediate between scientific knowledge and popular knowledge.

Keywords: Nursing; self-care; peritoneal dialysis; health education.

INTRODUCTION

Chronic kidney disease (CKD) has been the object of extreme importance and concern in the public health area due to its high morbidity and mortality ¹. It is defined by the progressive and irreversible loss of functional nephrons, classified into five stages related to the glomerular filtration rate (GFR) and, consequently, to the impairment level. In the most advanced category, stage five, entitled chronic renal failure (CRF) in terminal stage, the kidneys lose total control of the homeostasis of the organism due to the large reduction in nephrons and the patient begins to show uremic symptoms and need dialysis treatment².

This article is a master´s thesis clipping, aimed at identify the difficulties faced by patients when performing continuous ambulatory peritoneal dialysis (CAPD) at home and analyze the solutions they have adopted to deal with them.

The CAPD is a procedure consisting in infusion, retention and drainage into the abdomen of a balanced and warmed solution to near body temperature. In this procedure, the peritoneum, a thin membrane of abdominal organs and the abdominal wall lining, is used as exchange membrane to possess many capillaries and lymphatics.

Patients in treatment with CAPD are selected and trained by the nursing team to perform the exchanges of bags in their homes. This selection includes assessing the pathophysiological, social and emotional aspects, which should be analyzed carefully, so the entry into the CAPD program occurs effectively.

In this perspective, the information support that is offered to the patient and family can contribute to their maintenance of physical and psychological health, since it helps them to find coherence in their lives, meaning for their role and improvement in order to understand the present and hope for the future³.

THEORETICAL FRAMEWORK

Self-Care Theory assumptions of Dorothea Orem⁴ were reported, along with the concepts of Paulo Freire⁵ about the process of autonomy to be applied in the educational activity of CAPD patients.

Regarding the theory, it is highlighted the existence of desire and ability to perform self-care or care for dependent family members. The first one is a necessary part of life to health, development and well-being. Education and culture influence individuals in their self-care actions, learned by interaction and communication. They include deliberate and systematic conduct in order to meet their health requirements identified and others. This theory assumes that the patient is an active person in the decision process on the identification of needs, nature and actions to be developed in health care ⁴.

The self-care activity is the power, competence or potential of the person to engage in their own care. It is a human characteristic developed in daily life through a spontaneous learning process. This ability should be together in the life cycle, starting in childhood, reaching its peak in adulthood and declining with advancing age, subjected to factors such as age, development status, life experience, socio-cultural orientation, health and resources available⁴.

With all this, the respect for the autonomy and dignity of each one is an ethical imperative, not a favor that may or may not grant others⁵. Thus, it is necessary to respect the autonomy and identity of the patient with CRF, requiring a coherent professional practice with this knowledge.

Every educational action that aims at the autonomy of individuals presupposes dialogue, only possible in a horizontal relationship in which both individuals involved to express themselves as subjects, which means that people, socio-culturally situated in a particular time and space, can express their needs and desires, and yet demonstrate their ability to think, question and criticize, contributing to the solidification of this process of autonomy being built within the lived reality and involving the issue of family participation in this context⁵.

The change of awareness, respect for autonomy and knowledge of patients and dialogue are essential in the educational process. The pedagogy used for education is the action that can and should be much more than a process of domestication or training, but also a process that is born of observation, reflection and culminates in the transforming action. An education that seeks to develop awareness and a critical attitude, in which the man chooses and decides, releases it, rather than submitting it, tame it and adapt it⁵.

In this context, there are also the family relationships, since they have a prominent place as most human beings sees and experiences the world, and interference in the autonomy process. Speaking of family is to evoke a set of values that endows individuals an identity and life, a sense⁵.

Therefore, it is up to the nursing to understand the link between family dynamics and the health-disease process, which will require knowing the family, observe how it behaves in new situations and seeks to resolve their problems, starting to understand it as a system with its functioning, values, practices, rituals, strengths and specific roles³.

METHODOLOGY

Descriptive study with a qualitative approach, with the method of Convergent-Care Research⁶ (CCR) which includes the following phases:

Conception phase - related to the origin of the research, explaining where the development of the study occur, due to professional experience in nephrology area, in this case, in DPAC service, providing opportunities for the detection of problems in focus and the research of theoretical frameworks available.

Instrumentation/methodological decisions phase- The study was completed in 2010 and the scenario was a university hospital of the state, located in Rio de Janeiro, having a nephrology service subdivided into CAPD, hemodialysis and kidney transplantation. Patients selected as research subjects were those who had medical and nursing consultations scheduled for the same day, having the opportunity to explain them the project. As inclusion criteria, it was decided by those who were developing treatment with the CAPD independently, that is, alone, without the help of a professional sector or a qualified family, but they had participated in the educational process for the correct performance of procedure.

Out of the 21 patients registered in the program, nine were included who underwent treatment for at least three months, both manually, with four daily exchanges of solution between periods of morning, afternoon and night, as in an automated manner with the use of cyclers, specific machines for the treatment of CAPD and they shall have the responsibility to carry out this method of dialysis once a day, at night.

At this moment, it was identified a limitation of the study, because considering the appropriate inclusion criteria, from these 21 patients, only nine agreed to participate and demonstrated the need to review their self-care practices, revealing the real weaknesses of treatment.

To preserve the anonymity of the subjects, they were designated by names of flowers. At the first moment of the research, an identification script was applied to characterize them; in the second moment, there was an individual interview, recorded with prior approval, and later transcribed in full. Finally, in the third moment, the convergence groups in the study scenario were formed, allowing for holding three meetings with the subjects, with the themes of each one defined by them. Each meeting lasted between 01:15 and 01:45, being also recorded on magnetic tapes and later fully transcribed.

Detailed phase – In the capture of subjects, the Informed Consent (TCLE) was given to each one for knowledge and signing in two copies, one for the researcher and one for the patient, a document with detailed information on the research, according to the Bioethics rules of Resolution 466/2012 of the National Health Council (CNS).

Analysis and interpretation of results phase - Data were analyzed according to the steps proposed by the CCR. In the interpretation phase, there is the synthesis process allowing subjectively examine the associations and variations of information. The theorizing process developed a theoretical framework, from the relationships recognized during the synthesis process, when defined in detail the relationship between themes and concepts. Finally, the transfer process, on which the significance of certain findings, contextualizing them in similar situations, without understanding them as generalizations⁶.

In the initial phase of adherence, , all the material produced in the individual interviews and the convergence groups was found separately, to not generate false results, because in a given situation, the subjects involved in the research answered the questions individually and in another, there was the opportunity to discuss their opinions together.

The material generated in the individual interviews and discussions of convergence groups was subjected to content analysis technique, to maintain consistency in data produced⁷. This technique allowed us to identify similarities and differences regarding both instances, although circulated around the same themes. Thus, it was found that the content from the individual interviews and the convergence of groups could be treated together, by not depending on any other variable that determined changes⁶.

Thus, when analyzing the data together, a thematic array from the instrument issues of individual interviews and the topics covered in the convergence groups was generated, resulting in the category titled - Living with treatment - hindering points in the realization of the CAPD at home.

RESULTS AND DISCUSSION

Living with treatment: hindering points in the realization of DPAC at home

Regarding the difficulties, the fact cannot work outside the home concerned the patients, especially those who have always been directly responsible for supporting their families.

What bothers me most is that I can no longer work because the disease makes me tired me a lot, and also if someone is listening, I will not be able to stop the treatment then may delay [...] with that I can no longer work. (Cravo)

Initially, the physical disability of patients to work because a sense of limitation, especially those who were family providers, and even in the only ones helped with household expenses. However, over time, they realize they need to get around this situation for their own benefit and their families, not only for financial reasons, but for others, related to the development of an activity, that makes them feel willing, useful and the perception of the possibility of giving a new meaning to their lives⁴.

Another fact mentioned showed that in addition to the early completion of the treatment, packaging materials at home was also of concern for patients, mostly living in small homes and usually accompanied by family members. Thus, at times, the amount of materials hindered the conviviality and comfort of all.

I lived in a tiny apartment, so when I saw that all materials coming I thought, my God! How I will put it all inside my house? And my family? But then I tried to organize a corner in my balcony, I do not want anything to get in the way, so soon I managed it. (Gardênia)

It was seen, therefore, that the situations of difficulties are circumvented more easily for two reasons: first, when the patient seeks to organize by himself the elements needed for his treatment, adapting, for example, the locations for packaging of materials, according to the teachings of the educational process together with its reality and can put into practice the knowledge from their life experiences. The second expresses the opportunity provided by the CCR method, sharing of experiences among patients at the time of achieving the convergence of groups⁶.

The coping process of chronic kidney disease by the patient involves understanding of his meaning and consequences in daily routine, in relationships and in the very conception of life. The way how they will react to health problems and the mechanisms they will use to address them, are related to their beliefs, their values and the support received from healthcare professionals and their social network, usually made up of family and friends⁸.

A relevant issue for the patient and deserving special attention from the nursing staff, is the catheter for peritoneal dialysis, which is given according to the type. In most cases, the Tenckhoff is the most used since it is considered the standard and allow easy fluid infusion, although reason of discomfort by some patients, especially with regard to their permanence in the body, causing problems of self-image that can harm their self-esteem⁹. However, it should be clear that after the initial phase of the disease when more adapted to that catheter and confident in their treatment, the patient changes his negative perception, going to perceive it as a part of himself, necessary for the development of treatment¹⁰.

[...] I could not accept me (with catheter) I looked at it and made me want to rip it and throw it away; all I wore was marked in the belly, I was feeling ugly [...] over time, treatment was walking and began to get used to, then I did not see it as a problem, but rather as a necessity, then it became my little friend! (Orquídea)

Catheter care can be considered a way of self-care carried out by patients, based on the support system/education. In this case, they are guided that they can and should implement measures of therapeutic self-care, such as the choice of environment, material and properly performing the procedure, reflecting self-care beyond the technical to be configured as a coping attitude⁴.

The purpose of interference in customers´ daily lives, sometimes, the CAPD causes limitations, especially in relation to social life, making them feel concerned about the restrictions on contact with other people and participation in social events.

There are times that makes you want to say: I will not do it! It is very annoying, every time doing it, because there are days when it seems that goes fast, make a change now and, soon after, have to do the other [...] occasionally it is tired because it's all my family together with my neighbors, chatting on the balcony, and I have to leave to make the switch [...] but it is only when everyone together because it disrupts my social life. (Gardênia)

Participation in any social activity or event that patients deem to be more important than their treatment, cause concern because they can develop the CAPD technique quickly and inappropriately, favoring the occurrence of failures.

Self-care includes deliberate and systematic actions implemented to meet identified and own health requirements. By the time of completion of treatment is hampered by issues related to patient´s choices, it is clear that the actions accordingly are not being executed and therefore the health requirements are not being met⁴.

Treatment bothers me just in time to stop to do it [...] you're doing something and have to drop everything and go there, there, do it... (Hortência)

The occurrence of situations that may cause health risks and treatment are observed on a larger scale with those who have more time to DPAC. These patients, by judging having more knowledge than one that is starting, and by the experiences they have, is subjected to commit indiscretions to defy treatment. It is when complications possibilities increase, bringing the risk of peritonitis installation for possible contamination in some or many of the technical steps accomplished incorrectly.

Therefore, it is relevant to exchange or sharing of experiences and knowledge between the nurse and the patient, and patients among them, in order to warn that care be done in the best way in order to minimize such practice conflicts at home^4,5.

Respect for the autonomy and dignity of each one is an ethical imperative, not a favor that may or may not give to others. The exchange of knowledge should be accompanied by a horizontal educational process, maintaining dialogue and guidelines, through democratic means. It is necessary the active participation of patients, respecting their uniqueness and experiences with a view to holding beneficial practices of self-care⁵.

Thus, it is evident that the technical care and educational activities developed by the nursing team are directly linked to citizenship for obtaining the autonomy⁵. However, for this educational process to happen, it is necessary that the patient seeks always to know his body because the greater his knowledge about the disease process and treatment, the greater his involvement in self-care, confirming the scope of their autonomy⁴.

Regarding possible difficulties in treatment at home, some research subjects have reported that, as hindering agents, there are some members of their families. This is because the limitations imposed by chronic illness also affects the family, who must adapt to the needs of those who got sick⁴ . There is a balance of family breakdown before the new event and the adjustments that this family should perform depend on the resources available, how the disease began and the meaning that is assigned to this event¹¹.

My family, by brother and relatives, is very difficult, and [...] help, they do not help. If I depend on my family, by a relative, I'm screwed, nobody helps me, so nothing [...] only my husband helps me; my daughter who lives in my house does not care about anything. (Lírio)

It appears that the relatives of these patients do not help just by simple refusal to not take any responsibility related to who was affected by chronic kidney disease. In such cases, the concern of the nursing team is to not let this situation take the patient to develop feelings of abandonment, anger and depression, for failing to understand and accept the occurrence of these events, providing them support¹².

This support of the nursing team also aims to implement strategies to encourage acceptance of the disease and the treatment by the family from the beginning of the process, which could contribute to security and customer self-esteem that performs dialysis at home. Such acceptance is due to a process that can be either slow, as abruptly and unexpectedly, that since establishing the diagnosis of pathology, whose evolution and therapeutic generate the dependency picture of home care. It relates also to the bonding or to social responsibility because of the degree of kinship. Linking the family affected by the disease interferes with the life path, demanding change, adaptation and consolidation of knowledge and attitudes to deal with the new reality that is imposed¹³.

Thus, it is relevant to mention some factors that families need to overcome to the patient: reducing anxiety, providing information and support, patient proximity and sense of solidarity, which can happen only if every family experience the process of coping with the patient^14,15.

CONCLUSION

The study confirmed the need to rethink the logic construction of knowledge of the patients with chronic renal failure undergoing treatment with CAPD, trying to identify the pedagogy that guides this treatment when performed at home.

The familiar issue focused on the dialysis implementation difficulties showed a counterpoint, that is that the family when it is participatory, in relation to the treatment process, patients feel more security, confidence and emotional stability to perform self-care in home. When the opposite occurs, regardless of the causative reason for this lack of cooperation, they feel alone, discouraged and even helpless, without understanding the reasons for the lack of family involvement.

The educational process must consider the household situation of each client, intermediating their social reality to the way advocated by CAPD area for the storage of these materials, contributing to the planning and organization of their packaging and use in order to avoid which are possibly damaged.

It is worth remembering the importance of patients receiving guidance to enable to have a critical and reflective vision of self-care. Therefore, the review of the current educational process carried out by nursing staff is necessary, so that the transmitted knowledge are associated with social reality of these patients to achieve the best way to develop the recommended treatment in their home contexts.

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