Quality of life of patients on peritoneal dialysis and its impact on the social dimension

Calidad de vida de pacientes en diálisis peritoneal y su impacto en la dimensión social

Abstract

Objective:

evaluate the quality of life of patients with Chronic Kidney Disease on peritoneal dialysis using the KDQOL-SF tool.

Method:

quantitative-qualitative approach, carried out in August 2017 with 10 patients undergoing peritoneal dialysis followed-up at a clinic specialized in Renal Replacement Therapy. Data were collected through semi-structured interviews; later transcribed and submitted to Content Analysis, as well as the application of the Kidney Disease and Quality of Life Short-Form (KDQOL-SF) questionnaire.

Results:

from the analysis emerged three thematic categories with impacts on the social dimension: Kidney disease as stigma impacting on social relations; Family support as support for overcoming social stigma; and Changes in Daily Living Activities and their repercussions on the social dimension.

Conclusion and implications for practice:

the participants demonstrated that their Quality of Life has been affected with greater intensity in the social dimension. Identifying such a condition may allow the planning of nursing care with a comprehensive view and meeting the social dimension.

Keywords:
Nephrology Nursing; Renal Insufficiency, Chronic; Quality of Life; Social Stigma

Resumen

Objetivo:

evaluar la calidad de vida de pacientes renales crónicos en diálisis peritoneal utilizando el instrumento KDQOL-SF.

Método:

investigación de abordaje cuantitativo, realizada en el mes de agosto 2017 con 10 pacientes en diálisis peritoneal, acompañados en una clínica especializada en terapia renal sustitutiva. Los datos fueron recolectados a través de entrevistas semiestructuradas, posteriormente transcritas y sometidas al Análisis de Contenido, además de la aplicación del cuestionario Kidney Disease and Quality of Life Short-Form (KDQOL-SF).

Resultados:

surgieron tres categorías temáticas del análisis con impactos en la dimensión social: la enfermedad renal como estigma impactando en las relaciones sociales; el apoyo familiar como soporte para vencer el estigma social; y cambios en las actividades de la vida diaria y sus repercusiones en la dimensión social.

Conclusión e implicaciones para la práctica:

los participantes demostraron que su calidad de vida ha sido afectada con más intensidad en la dimensión social. Identificar tal condición puede posibilitar una planificación de la asistencia de enfermería con una mirada integral y atendiendo, así, la dimensión social.

Palabras clave:
Enfermería en Nefrología; Insuficiencia Renal Crónica; Calidad de Vida; Estigma Social

Resumo

Objetivo:

avaliar a qualidade de vida de pacientes renais crônicos em diálise peritoneal, utilizando o instrumento KDQOL-SF.

Método:

pesquisa de abordagem quanti-qualitativa, realizada no mês de agosto de 2017 com 10 pacientes em diálise peritoneal acompanhados numa clínica especializada em Terapia Renal Substitutiva. Os dados foram coletados por meio de entrevistas semiestruturadas, posteriormente transcritas e submetidas à Análise de Conteúdo, além da aplicação do questionário Kidney Disease and Quality of Life Short-Form (KDQOL-SF).

Resultados:

da análise emergiram três categorias temáticas com impactos na dimensão social: A doença renal como estigma impactando nas relações sociais; O apoio familiar como suporte para vencer o estigma social; e Mudanças nas atividades da vida diária e suas repercussões na dimensão social.

Conclusão e implicações para a prática:

os participantes demonstraram que sua qualidade de vida tem sido afetada com maior intensidade na dimensão social. Identificar tal condição pode possibilitar um planejamento da assistência de enfermagem com um olhar integral e atendendo, assim, à dimensão social.

Palavras-chave:
Enfermagem em Nefrologia; Insuficiência Renal Crônica; Qualidade de Vida; Estigma Social

Introduction

Chronic Kidney Disease (CKD) is characterized by structural and functional changes of the kidneys manifested by the progressive and irreversible decrease of Glomerular Filtration Rate. It is a long-term and insidious disease and usually goes through the early stages with an asymptomatic condition. It mainly affects elderly, obese, smokers and someone with a personal or family history of kidney, cardiovascular and other chronic Noncommunicable Diseases¹.

After the settlement of the disease, options for treatment are hemodialysis, peritoneal dialysis and kidney transplantation. Dialysis can be performed by three types: Continuous Ambulatory Peritoneal Dialysis (CAPD), Automated Peritoneal Dialysis (APD) and Intermittent Peritoneal Dialysis (IPD). Among the modalities described, CAPD is the most used, in which the patient or a trained person performs the infusion and drainage of the dialysis solution, manually².

CKD has been configured as a public health problem, considering the high incidence of people diagnosed with Chronic Renal Failure at both the global and national levels³. According to the Brazilian Society of Nephrology, between 2011 and 2016, there was an increase of 31.5 thousand cases of diagnosed patients, representing an average annual increase of 6.3%. However, when it comes to the therapeutics used, there is a predominance of hemodialysis, being that the compliance with peritoneal dialysis reached only 7.9% of the patients who began treatment in 2016⁴.

Peritoneal dialysis is a modality that has been identified as an option that allows greater autonomy and flexibility to the patient in the treatment, allowing their return and maintenance of daily activities, such as work^2,5, which presupposes an improvement of Quality of Life, especially with regard to the social dimension.

However, in relation to the impact of the disease, the way each person copes depends on different factors, such as psychological profile, environmental conditions, family support and their social determinants. Thus, the fact of having to live with a chronic disease that causes physical, sexual, psychological, family and social limitations can significantly affect the Quality of Life^6-7 of both the person and his family, who no longer live with one healthy family member, but with a patient in continuous therapy.

In this context, it is understood as important and necessary to make efforts to discuss the Quality of Life (QoL) of people with CKD, especially those who represent a still limited number in the use of the option for peritoneal dialysis therapy, due to the scarcity of studies focusing on this patient population⁸. In addition, it is assumed that studies on the QoL of this population can provide indicators that will subsidize the action of health professionals, especially the nursing team, becoming qualified and having a direction for the development of the nursing process in an individualized way and focusing on the comprehensiveness of being, especially attention to the social dimension in face of the stigmas present in the life of these people with CKD.

Thus, considering the relevance of discussing the social dimension in the setting of patients with CKD, the aim of this study was to evaluate the QoL of patients with CKD under peritoneal dialysis using the KDQOL-SF tool.

Method

This is a descriptive, exploratory and cross-sectional study of a quantitative-qualitative nature, developed in a medium-sized municipality located in the Northern Piemonte Region of Itapicuru, in the countryside of Bahia, Brazil.

The study was developed in a clinic specializing in Renal Replacement Therapy, a private administrative sphere, which provides service to the Brazilian Unified Health System (Sistema Único de Saúde), which serves a number of 203 patients under hemodialysis and 10 patients under peritoneal dialysis.

Considering a small population, all patients who were followed up and submitted to peritoneal dialysis treatment were included. Data collection was performed in August 2017 with all patients in this treatment modality.

As tools for data collection, the semi-structured interview and the Kidney Disease and Quality of Life Short-Form questionnaire (KDQOL-SF) were used. The interview was composed of two parts, the first one related to sociodemographic characterization of the participants and the second one, containing questions inherent to the purpose of the study, such as: what changes occurred in their life after the illness? What changes have occurred in your relationships (with family, friends, or spouse)?

The KDQOL-SF is a specific questionnaire for studies with patients with CKD under Renal Replacement Therapy, in order to objectively evaluate the QoL developed by the Working Group of the University of Arizona in the USA and validated in Brazil⁹. It has 80 items distributed in 19 domains, in which 8 are generic and 11 are specific. Each domain has a score ranging from 0 to 100, with a value of 0 reflecting a poorer QoL and a better QoL.

Data were collected at the study place in a reserved room with an average duration of 15 minutes, and a prior appointment was performed with the coordinator nurse and according to the patients’ availability, always after the monthly consultation, since the dialysis peritoneal is performed at home. A digital recorder was used to capture the speeches of the patients.

The recorded interviews were transcribed and later submitted to the Content Analysis technique, according to the following steps: pre-analysis; exploitation of the material; and treatment of the results¹⁰. Thus, after transcribed and organized, the interviews (data set) begin to compose the corpus of the research, which went through an initial reading process, initially a quick reading and then in detail, in order to identify the essential elements that made up each data set (interview). Then, the data were grouped, taking into account their convergences and similarity, so that it was possible to emerge three thematic categories that respond to the objective of the study, namely: Kidney disease as stigma impacting on social relationships; Family support as support for overcoming social stigma; and Changes in Daily Living Activities and their repercussions on the social dimension.

Data from the KDQOL-SF were transported to a Microsoft Office Excel^® Software spreadsheet provided by the Working Group, in which the scores for each QoL domain were calculated, as well as the measures of central tendency (mean and median) and dispersion (Standard Deviation).

The study was approved by the Ethics Committee of the Higher Education Institution to which the authors are linked, under Opinion 2,182,169, and met the formal requirements contained in Resolution 466 of December 12, 2012, of the National Health Council (Conselho Nacional de Saúde), which regulates research involving human beings. To preserve their anonymity, the extracts from the reports are identified with the letter “I” of the interviewee, followed by a number indicating the order of the interview.

Results

The profile of the participants was composed mainly of women of economically active age, with nine to fifteen years of study and income of up to 01 minimum wage. Although the predominant age group is between 29 and 39 years of age, 100% of the participants do not perform any work activity (Table 1).

Table 1
Sociodemographic characteristics of patients with CKD under peritoneal dialysis. Senhor do Bonfim, BA, Brazil, 2018.

Variables	n = 10
	N	%
Sex
Female	7	70%
Male	3	30%
Age Bracket
18 to 28 years	0	0
29 to 39 years	7	70%
40 to 50 years	0	0
51 to 59 years	0	0
60 years and above	3	30%
Marital Status
Married	5	50%
Single	5	50%
Widower	0	0
Divorced	0	0
Training years
0 to 1 year	2	20%
2 to 8 years	2	20%
9 to 15 years	4	40%
16 years and above	2	20%
Income
Up to 1 MW	10	100%
2 to 4 MW	0	0
5 or more MW	0	0
No income	0	0
Religion
Catholic	9	90%
Evangelical	0	0
Spiritualist	0	0
Other religions	0	0
No religion	1	10%
Employed
Yes	0	0
No	10	100%
Tie of peritoneal dialysis
3 to 6 months	1	10%
7 to 12 months	2	20%
1 to 5 years	6	60%
More than 5 years	1	10%
Perform pertoneal dialysis
Alone	7	70%
With help	3	30%
Performed hemodialysis before
Yes	9	90%
No	1	10%

In addition, 60% had between 1 and 5 years of peritoneal dialysis, 70% performed home treatment alone, 70% never had any episodes of peritonitis, and 90% had previously had another type of treatment such as hemodialysis.

Table 2 shows the mean, Standard Deviation and median values for each QoL domain of KDQOL-SF. In the analysis of these values, peritoneal dialysis patients presented relatively good scores in 14 of the 19 domains of the questionnaire.

Table 2
KDQOL-SF domains of patients with CKD under peritoneal dialysis. Senhor do Bonfim, BA, Brasil, 2018.

Domains	Mean (SD)	Median
General
Physical Functioning	48.5 (35.59)	45
Physical Function	67.5 (47.21)	100
Pain	85 (20.24)	100
General Health	46 (12.87)	45
Emotional Well-being	58.8 (20.66)	62
Emotional Function	70 (48.3)	100
Social Function	78.75 (22.86)	81.25
Energy/Fatigue	65.5 (19.78)	70
Specific
List of Symptoms and Problems	81.67 (12.41)	84.38
Effects of Kidney Disease	71.56 (21.77)	75
Kidney Disease Load	54.38 (27.49)	56.25
Work Situation	10 (21.08)	0
Cognitive Function	78 (14.76)	73.33
Quality of Social Interaction	77.33 (17.55)	83.33
Sexual Function	81.25 (31.37)	100
Sleep	72 (17.83)	77.5
Social Support	75 (18)	75
Dialysis Team Incentive	100 (0)	100
Patient Satisfaction	85 (16.57)	83.33

The domains in which the means expressed higher QoL were respectively: Dialysis Team Incentive, Pain, Patient Satisfaction, List of Symptoms and Problems, Sexual Function, Social Function, Quality of Social Interaction and Social Support.

On the other hand, the domains that showed the greatest loss were: Work Situation, General Health, Physical Function, Kidney Disease Load and Emotional Well-Being.

From the participants’ speeches, three categories emerged, in which relations were observed with the scores found in the KDQOL-SF, and it is possible to identify elements that may influence the QoL of this population.

Category 1: Kidney disease as stigma impacting on social relationships

In the findings of the present study, stigma has been defined as a sense of social exclusion that emerges from the changes resulting from CKD. When questioned about the changes in interpersonal relationships, the participants expressed a feeling of negative impact on the disease with repercussions on social interactions, as shown below.

[...] when you are healthy go out to drink and make fun; today you can no longer do those kinds of things, so some friends who claimed to be friends, right? Turn away from the fact that you cannot do the same things they do [...] friendship, changes a lot, changes a lot, a lot! (I3).

[...] we get a little away from the people, right? Because we cannot, for example, go to certain places, or go out at night, right? The disease limits [...] cannot drink and the staff always likes to party, birthday, then you get deleted, right? [...]. Sometimes you are somewhere and you do not want to show that you have the disease and you stop doing what you did before, that’s why I stop going to many places, because people when they know they want to investigate what I feel, they ask and I do not want to talk [...] to try to live normal I stop going out, I hold myself a little, right? (I5).

[...] thus, there are many people who have prejudice, they think that the disease of the people is thus transmissible [...] it really bothered to know that people have a prejudice that they should not have, I got away from people from almost my whole family because of the same prejudice (I8).

The feeling of social exclusion was also related to the home treatment characteristic for the participant who underwent hemodialysis previously:

[...] peritoneal dialysis is a very good treatment, it is much better than hemodialysis, but on the one hand, I felt better doing hemodialysis, because I had colleagues, I kept talking, peritoneal dialysis is not like that anymore, you are alone, It’s you and yourself, there’s no one to talk to, no one to spend time throwing away talk and even so I’ve been in a state of depression (I8).

Category 2: Family support as support for overcoming social stigma

Regarding family relations, the patients showed great satisfaction in receiving support and care from their relatives, which could be evidenced in the following statements:

[...] thank God, my family has always been on my side, supporting me, my husband also, always, and thank God, every time I had more difficulty, I went through difficulties, always been by my side (I3).

[...] my daughter helps me [...] as soon as I fell ill she left the city she lived to live with me and accompanies me always, she is the one who takes care of me (I7).

[...] it was a different thing in my body (the catheter) that nobody ever saw, it was a scare for everybody, then everyone was adapting as well, they got used to me, my family, my husband, everybody [...] (I6).

Category 3: Changes in Daily Living Activities and their repercussions on the social dimension

The statements that support the inferences that led to the construction of this category express a dislike for the changes in habits and Daily Living Activities, food modifications and difficulties in work performance, as fragments below.

[...] my life has changed, a lot has changed [...] my life has become more boring, I do not have time almost for nothing more, I have to be doing the treatment always at the right times, cannot fail [...] if you have an appointment you cannot go, you have to do the treatment first, run after life instead of going to appointments [...] it is very complicated (I4).

We fall apart from people [...] I was restricted because of the treatment that I do on the machine at night, at 9 o’clock at night I already have to be at home to do it, there’s no way out (I5).

[...] I cannot have more fun, play my ball on the weekend I really liked it nowadays I do not play anymore [...] I liked to fish, after I got sick I never went fishing again; now as fun, just a pack from time to time, you know, just sitting (I2).

[...] it is something else, the way to live is another, your food is different, everything is different, you cannot gain weight, cannot eat what you want [...] (I8).

[...] many things have changed in my life after I got this disease [...] Before, I worked and now I do not work anymore. (I2).

[...] it hurts a lot of people’s time, I graduated in pedagogy and if I did not have this treatment to do, I should be in a classroom if I got a job, but as the peritoneal does every four hours then you have to adapt to this life of staying more at home than doing some activity like that (I6).

Discussion

The sample presented characteristics similar to those described in the national literature, both in relation to the sociodemographic profile and the domains of the tool used^5,11-13.

Some of the participants, although they were in the productive phase of life, did not develop paid activities and it is understood that the disease constitutes the cause of this economic inactivity that contributes to the withdrawal of these individuals from the society, as well as other social repercussions.

Among the aspects that involve QoL, the stigma in social relations was pointed out by the individuals in their speeches, described based on the distance of the friends and the limitations imposed by the disease when the person can no longer participate in family events, parties or celebrations, especially with regard to water intake and consumption of alcoholic beverages. In addition to the changes imposed by the disease, there is also the feeling of fear in front of the curiosity and pre-judgments of the people when they meet again and they know of the diagnosis of a CKD.

Dialytic treatment can lead to intense transformations in the lives of these patients, so that they end up having repercussions on social and psychological dimensions, interfering in social and family relations, being necessary to relearn to live and coexist with a routine permeated by technical procedures, queries. Faced with conflicts and emotional instabilities, studies conducted with the same profile of patients, about the limitations resulting from illness, indicate that many patients become socially affected, opting for social isolation, moving away from friends and relatives^14-16.

In the speech of one of the interviewees, stigma was observed in the family, characterized by the family members’ separation resulting from the CKD-related prejudice. In addition to being a specific factor to the use of peritoneal dialysis, which is the procedure performed in the private setting, what seems to be positive may also have a negative connotation, considering that when conducting dialysis at home, the interaction social interaction that patients have when they are in the public environment of the hemodialysis clinic, since in the clinic space it is possible to interact with the other patients and to be distracted by talking with others during dialysis. A paradoxical condition, as could be observed in the empirical fragment of one of the participants.

Studies show that during chronic hemodialysis sessions patients with CKD attends the clinic three times a week and spends a good part of his time in living with other patients and the team that assists him, thus building a relationship of familiarity, complicity and solidarity, in which all are equal with regard to the status of dialects, with similar problems and facing the same difficulties¹⁷.

Although peritoneal dialysis is performed at home and presents fewer restrictions on usual activities, patients who have previously undergone hemodialysis therapy and who were already accustomed to living with others and sharing their experiences during the hours of permanence in the machine end up feel alone as if they were the only ones to go through this situation¹¹.

A raised inference about social discrimination can be due to the fear of contagion in the face of the population’s disinformation regarding the non-transferability of this disease and its causes and, in this sense, the health team plays a fundamental role in clarifying the family¹⁶.

In order to explore the prevalence and the relationship between social stigma and chronic diseases, including CKD, research in three countries in Southeast Asia (Cambodia, Myanmar and Vietnam) shows that stigma in relation to the person with a disease is related to sociodemographic factors such as age (younger), level of schooling (low), and QoL (low). This is a profile prone to demonstrate characteristic signs of the social stigma to the detriment of people with chronic diseases, which indicates the need for guidance and clarification of this part of the population¹⁸.

In an analysis of the relationship between the respondents’ speeches and the domains of the questionnaire, it was possible to show that there is a relationship between the specific domain “Kidney Disease Load” in which the score was not satisfactory (54,38) with which the interviewees pointed out in the empirical data, since it evaluates the interference of the disease in the life of the patient and how much it feels like a burden to other people in face of the perceived social stigma. In addition, the good score in the “Quality of Social Interaction” domain (77,33), which evaluates the conduct in relationships and the extent to which the patient has become irritated with others or isolated, is a conflicting finding in this study because of corroborate with the statements that show the prejudice in social relations.

The diagnosis of CKD, the institution of therapy, and the resulting physical and psychological suffering lead the patient to a condition of vulnerability, which requires the family to participate in the process of adaptation, motivating it in coping with the disease and in the process of resilience.

Peritoneal dialysis, due to its domicile characteristic, causes changes in the environment, as well as the involvement and active participation of relatives and close people in treatment-related activities^18-20. In addition, to perform PD, a catheter must be implanted in the abdominal wall, which changes the individual’s body, implying a self-image and the generation of a social stigma based on the reflex that other people construct regarding the use of the catheter. Thus, the family has a relevant role in supporting the patient to overcome such stigma, impelling it to overcome such repercussion in its social dimension, as well as the condition of social isolation, often present.

The presence of a chronic illness in the family can encourage members to come together to support and assist in providing care. Family support becomes an essential element in the context of peritoneal dialysis, ensuring compliance with treatment and promoting a better QoL^4,16. Participants expressed satisfaction with the dedication of their relatives, which can also be observed in the results of the application of the QoL tool, which points out repercussions in the areas: Patient Satisfaction (85.0), Social Function (78, 75) and Social Support (75), whose items make reference to social activities and the degree of satisfaction regarding family support, kindness and care received.

In addition to family support, patients with CKD need a readaptation of their routines, especially Daily Living Activities, which represents a burden imposed by the disease in their lives. When they pass to a condition of life in which patients are forced to adapt in search of survival, as well as a search for coping strategies in the face of physical, psychoemotional and social repercussions.

Although peritoneal dialysis is a therapy that provides greater independence, freedom, and comfort in being performed at home, it also requires a number of changes in lifestyle, habits, home organization, work, social activities, and the future, helping patients to stop doing what once gave them pleasure^14,19.

Many are the changes in the life of a person who initiates a Renal Replacement Treatment, such as altered diet, control of water intake, hygiene-enhanced care, routine consultations and examinations; besides living with a catheter implanted in the abdomen and the adequacy of the routine to maintain the times of the exchange of the dialysis bags^19-20.

It is noticed that, for the interviewees, the disease constitutes a deprivation of liberty due to the obligation to perform the treatment at the correct times and, therefore, end up having to give up other activities. Dialysis becomes the only reason they are still alive and the new life routine revolves around this, restricting their activities to performing technical procedures, catheter care, and the use of medications. Consequently, there are implications in the social dimension, with losses in the personal, social and economic spheres, for example, the impossibility of remaining active in their employment¹⁴.

The difficulty in carrying out work activities negatively affects the QoL of these people. The results in the KDQOL-SF questionnaire showed an extremely low score in the Work Situation (10.0) domain, as well as low scores in the Physical Functioning (48.5) and Kidney Disease Load (54.38). Studies^4-5,16 indicate that, in fact, these are factors that impede the accomplishment of the working day or the accomplishment of the labor activities.

This situation causes patients to be dependent on aids and pensions or family income, which results in decreased self-esteem, especially when the affected individuals are still in the economically active phase of life.

Thus, it is possible to assimilate that the issue of not being able to work implies in the QoL of these people, considering that the work constitutes a basic human need⁵. Therefore, health professionals are expected to strive to find strategies that may favor the incentive to seek work and the reintegration of these patients into the labor market, in a work structure that is possible to act even when using a catheter, and thus better re-signify their lives in the face of illness and prevent emotional disorders, besides helping to maintain mental health and contribute to care also the social dimension.

Conclusions and implications for the practice

The views and perceptions of the research participants show that CKD and dependence on Renal Replacement Therapy imply changes in the way of life of the person and their family members. Such waivers and losses arising from the limitations of the disease interfere with the social dimension.

From the analysis of the speeches, it was evidenced that the QoL is more compromised in aspects related to the social dimension. Thus, it is perceived that identifying the factors that favor or not the QoL is a possibility of a planning for a more comprehensive and resolutive nursing care.

The study presented as a limitation the reduced number of patients on peritoneal dialysis. Although the limited number of patients complying with this therapy is a reality in the country, the observed results cannot be safely extrapolated and are representative only at the study site. However, because it is a subject that has not yet been studied in this specific population, it is expected that the results may contribute significantly to the comprehensive care of this population, since they comprised both subjective experiences and data measurement from the KDQOL-SF questionnaire. It is hoped to contribute to the nursing professionals to surpass a care vision very focused on the clinical aspects of the disease and, thus, to carry out a nursing care that attends to the multidimensionality of being, especially to the social dimension, which was the focus of this study.

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Publication Dates

• Publication in this collection
  24 Jan 2019
• Date of issue
  2019

History

• Received
  18 Sept 2018
• Accepted
  20 Nov 2018