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Manifestations and strategies of coping with Chagas Disease that interfere in the quality of life of the individual: a systematic review.

Introduction

Classified as one of the 17 neglected tropical diseases listed by the World Health Organization (WHO) (1), Chagas disease is transmitted by the protozoan Trypanosoma cruzi (2) and, in Latin America, is the endemic disease with the greatest impact on morbimortality in a group of 21 countries, where it is estimated that it affects 5-6 million people, of whom less than 1% receive treatment and approximately 7,000 cases result into death annually (1).

In the case of the Brazilian setting, it stands out among chronic diseases due to the fact that it affects approximately 1.2 million individuals (3) and because it is the fourth cause of death among infectious-parasitic diseases in the age groups over 45 years (4).

Before this burden, Chagas disease control and treatment became priorities for the World Health Organization (5), suggesting the development of new disease monitoring strategies in order to promote the improvement of users' quality of life (2), here addressed broadly, and is illustrated with excellence by the concept elaborated by the World Health Organization (WHO) (6), for which quality of life is understood as the individuals' perception of own insertion in life, in the context of culture and systems of values in which they live and in relation to their goals, expectations, standards and concerns (7). It is characterized, therefore, as a complex concept, which aggregates environment, physical and psychological aspects, dependence level, social relationships and personal beliefs of the subject (8), not limited to the exclusive approach of symptoms and dysfunctions of illnesses, as considered by other definitions portrayed in the literature (9).

Thus, given the interference of Chagas disease in different aspects of life of individuals and their need to adjust to the condition of chronic disease, we aimed to identify the manifestations and strategies of coping with the disease that influence the quality of life of affected subjects, with the understanding that evaluation of the living conditions of carriers results in the improvement of care supported in the planning and organization of actions (10).

Methods

This is a systematic review of literature. Before the lack of revision protocols that considered the inclusion of several types of studies, the "Methodological Guidelines for Systematic Review and Meta-Analysis of Randomized Clinical Trials" of the Ministry of Health were adopted (11) and the protocol was adapted to meet the research proposal. The scientific question guiding the study was the following: "What are the manifestations and strategies of coping with Chagas disease that influence the quality of life of the affected subject?"

The search in the databases occurred between January and September 2016 and considered three databases: PubMed, SciELO and Lilacs, which cover literature referring to regions of epidemiological relevance with regard to Chagas' disease.

All references that met the following criteria were included: a) they showed primary data; b) they were characterized as full-text; c) and had a Portuguese, English or Spanish version. All studies that: a) were not available for free; b) did not classify as scientific paper or course final paper; c) and were not related to the topic of interest, and this should be conditioned by consensus between two evaluators were discarded.

The terms employed for the search were previously selected considering the controlled vocabulary for indexing papers of the Health Sciences Descriptors (DeCS) and the Medical Subject Headings (MeSH) system, through which descriptors "Chagas disease" and "Quality of Life" were captured, used in SciELO and Lilacs and "Chagas Disease" and "Quality of Life", corresponding to PubMed. The Boolean operator "AND" was applied to promote the combination between the two chosen terms, so that the association "Chagas Disease AND Quality of Life" was used in SciELO and Lilacs and "Chagas Disease AND Quality of Life" in PubMed.

Initially, 92 papers were published in PubMed, 21 in SciELO and 47 in Lilacs, totaling 160 publications. In PubMed, filters "free text", "human species" and "Portuguese, English and Spanish languages" were selected, which downsized papers to 47, 38 and 38 respectively. In SciELO, restricting the search by adopting the "Portuguese, English and Spanish languages" filters, the number of selected productions fell to 21. Finally, in the Lilacs database, using the "full text available", "human species" and "Portuguese and English languages" filters the total number of productions identified were limited to 28, 24 and 24 in this order. The "year of publication" restriction criterion was not used, since its selection would substantially reduce the number of articles indexed. Thus, the collection of references in the three databases returned 83 papers.

Papers were stored in the reference management software called Endnote Web. Extracting the publications in duplicate, the total number of papers was reduced to 57. In the identification of potential eligible studies, these papers were analyzed independently by two evaluators, namely, a nurse with PhD in Health Sciences and a psychologist with a PhD in Psychology, and disagreements regarding exclusion were resolved by consensus.

When the evaluation was carried out by the approximation between the title and the theme, the number of papers decreased to 38, of which, after applying the criterion of summary analysis and excluding literature reviews, 13 and 12 remained, respectively. Of these productions, confirming the eligibility for the detailed reading of the manuscript and considering the approximation with the guiding question of this study, 6 papers were selected through the mentioned databases, as shown in Figure 1.

We understand that the identification of studies mediated by search in electronic databases is essential and useful. However, if only this is considered as an identification tool, a sensitive proportion of information that can contribute emphatically to the discussion can be disregarded. By modifying the course of the review, other recruitment strategies were used, such as the verification of bibliographic references and manual search (hand searching) (11).

In the investigation of the list of bibliographic references of studies captured through databases, 120 publications were initially obtained. After extracting the duplicates found, this number fell to 116. Of these, after analysis of agreement between the title and the theme proposed, 58 were maintained. Considering the free full-text studies available, the number was further reduced to 33. After discarding the publications that did not qualify as scientific papers or course final papers, 21 papers remained, of which, after exclusion by summary, 11 were left out. Excluding literature review studies, papers were reduced to 10, arriving at sixpapers after a detailed full-text reading, as shown in Figure 2.

We also considered the inclusion of works referring to gray literature, which includes literary productions that have not been formally published in books or journals, but which must also be considered in the process of searching for scientific evidence (11), represented here by a dissertation and a theses found during the process of visualizing the list of bibliographic references, which are indexed in the digital repositories of the State University of Campinas (UNICAMP) and the University of Sao Paulo (USP), sequentially.

Finally, through manual search (handsearching) carried out on the Google Scholar site, with descriptor "Chagas Disease", four articles related to the topic under discussion were identified. Therefore, we concluded the selection of relevant papers with 16 publications.

The process of extracting data from papers that were screened was performed independently by two evaluators and was guided by a standard analysis form previously elaborated and used in the evaluation of the studies recruited in all the aforementioned search strategies. Any disagreements in the data collected regarding their inclusion in the study was resolved by consensus between the two reviewers.

Results

Papers found through databases were reviewed and are shown in Chart 1, in terms of authorship, year of publication, objectives, methodological course and variables studied. We identified papers published between 1997 and 2012, whose studies were carried out in the states of Rio Grande do Sul (1), Minas Gerais (2), Parana (1), Rio de Janeiro (1) and Sao Paulo (1).

As to the type of study, three were classified as descriptive, one as ethnographic, one as prospective intervention and one ascross-sectional. The number of participants involved in the research ranged from 10 to 131 individuals. Among papers, three used the qualitative approach as an analysis method. Regarding data collection tools, the open-ended interview was used in three studies, the questionnaire and medical records verification was used in one study, one study performed clinical tests and one combined the use of questionnaire with clinical trials.

The variables evidenced in the studies were listed in two categories of analysis: manifestations of Chagas disease that interfere in the quality of life of the individual and coping strategies that influence the quality of life of patients affected by Chagas' disease. Three realms emerged from these two categories: physical, psychological and social, as illustrated in Charts 2 and 3.

The physical realm evidenced issues regarding the impact of the clinical condition of the disease on the normal functioning of the organism and on the maintenance of daily activities of the affected individual and therapeutic measures that include physical exercises, pharmacological therapy, pacemaker implantation and heart transplantation.

The psychological realm included feelings generated from the discovery, the coping and trend of the disease, the self-perceived quality of life and the influence of religious beliefs before the chagasic condition.

Finally, issues concerning the social realm were raised, considering the interference of the disease in the affective ties and introduction in the labor market, the repercussion of social security and the access of the affected person to health services.

Discussion

Chagas disease manifestations interfering in the quality of life of the individual

Physical realm

In the differentiation between genders, it was revealed that women show greater risks of low quality of life in the mental, emotional and physical functioning areas (12). Regarding the age groups, increased age was observed as a favoring factor of compromised psychological realm due to the individual's apprehension vis-a-vis the intensified possibility of death over time (13).

The fact that most patients become aware of their condition belatedly, as a result of the manifestation of symptoms or even random discovery while at a health service (10,14) promotes a situation in which the disease goes unnoticed through the acute phase, which is an aggravating factor in their quality of life, assuming that a well-directed treatment initiated in the expected time increases the survival of patients (10).

Coping with physical pain in several segments of the body was found in cardiac, digestive and cardiodigestive forms, both forms of manifestation of the disease, which affects the productivity of individuals and compromises the sense of well-being (10).

Configuring a greater limitation to the Chagas' disease patient, in relation to the development of normal activities, the cardiac form was associated to decreased well-being and commitment in the execution of labor activities and in the achievement of income necessary for survival (10). In contrast, the digestive form, which accompanies significant changes in the digestive tract, impairs esophageal mobility and system morphology (14).

Symptoms such as palpitations, precordial pain and dyspnea (10), related to the cardiac form (15), and dysphagia, regurgitation, epigastralgia and dinofagia (10), corresponding to the digestive form (15) are evidenced as manifestations that influence the lifestyle of patients affected by Chagas' disease and individual routine maintenance, where a deficit was recorded in daily activities, domestic work and work itself (10). In situations in which individuals did not complain of decreased functional capacity, the preserved possibility of maintaining regular routine was conditioned to the appropriation of medication to minimize discomfort caused by symptoms of the disease in its cardiac and digestive forms (10).

When considering the findings of routine exams, it was observed that more minimal changes in the electrocardiogram (12,16) and chest radiographs (16) may be related to the greater benignity of the disease (12,16). In contrast, abnormal Doppler echocardiography with ventricular dysfunction, the evidence of 24-hoursHolter ventricular tachycardia and of heart failure syndrome, especially New York Heart Association functional class III and IV, were considered as depressing quality of life factors (12).

Psychological realm

The disease was characterized as a precursor to high depression levels, possibly related to the uncertainty about possible sudden death related to the cardiac form (17) and facing a megaesophagus surgery related to the digestive form (18).

The moment of disease discovery was characterized as an event that causes shock, apprehension and despair (13), aggravated by the scarce information and the stigma surrounding the disease (16) acting as a predisposing factor for the development of stress (19).

Literature also portrays the perpetuation of feelings of sadness and fear of death (13,19-21), so that this possibility becomes the only perception about the disease, to the detriment of other clinical findings. Chagas' disease becomes a type of condemnation (21), the disease "that kills suddenly", and this outcome draws from the patient the unique depiction of this disease (22).

When taking self-assessments of infected patients, we also observed that Chagas disease causes dissatisfaction with the quality of life, general health and performance of daily activities (17), as well as a lower resilience capacity (19), so that the awareness of vulnerability caused by the disease transforms the individual's relationship with his own life and changesown perception of himself, his resources and his capacities (13).

In this context, patients who reported symptoms evidenced greater dissatisfaction with the quality of life and had higher stress indexes, even higher than physical symptoms (19). Studies have revealed that even the diagnosis itself triggers negative feelings (13,19) on a moderate or high scale, regardless of the manifestation of symptoms (19), that is, the stressor does not have to be there to develop stress (13). Anticipatory suffering stands out as a stress promoter, with the proliferation of negative thoughts about one's own life condition, causing, consequently, the complication of the established condition (19).

Social realm

Faced with the social representations elaborated around the disease, we concluded that myths, cultural meanings and negative values that characterize the disease under the popular perception trigger psychological damages that set barriers in the life dynamics of carriers (22).

In the labor context, it was observed that decreased physical vigor drives job's loss (21). Because they are included in unfavorable socioeconomic conditions, workers expand occupation of the informal sector, in which they perform manual or part-time labor activities and are subjected to the long working hours, which assure them only the minimum to survive, without the prospect of a more promising future (23), and they are also confronted by obstacles that involve social repercussions and cultural prejudices surrounding the disease (22). The retirement process also has repercussions and is accelerated by the progression of late complications of the disease, which require continuous treatment and special care (10).

As for the maintenance of social ties, we find two different situations, since, controversial to the feeling of solidarity emanated by family or friends, that is, by the most intimate social group, the subject faces the process of weakening relationships at work, in which marginalization of infected individuals by the others occurs, highlighting the discrimination directed to the pathology (22).

The social impact was also illustrated in the statements of patients with Chagas' disease, in which they said that they did not enjoy life properly and had higher rates of dissatisfaction with sexual activities when compared to seronegative groups (17).

Coping strategies that influence the quality of life of patients affected by Chagas disease

Physical realm

Regarding the direct benefits of physical exercise for patients with Chagas' disease, scientific evidence is still incipient and controversial. While results suggest that regular physical activity is beneficial for physical conditioning and functional capacity, no improvement or worsening of cardiac symptoms through exercise programs (24) was detected. However, possibly, only movements of an individual with a chronic disease and was still at rest provides a bonus on the quality of life, with the understanding that individuals who used to perform little physical activity and included it in their routine contributed to decreased general mortality rate, when compared to those who adopted a sedentary lifestyle (25).

Regarding drug use, such as beta-blockers, when applied to major and more severe manifestations of heart disease related to Chagas' disease can attenuate symptoms and produce benefits in physical and mental mood, ability to perform activities, psychological satisfaction and social involvement, leading to an improved quality of life and extended life in a large number of patients (26).

Psychological realm

As to the psychological confrontation of the disease, it was observed that, in order to justify own Chagasic condition, patients anchor their beliefs in religious notions, so that answers they need are sheltered in the divine will, and, thus, medical science gaps are filled by religion through effective explanations for "life's drama". In this context, two distinct currents arise: on the one hand, the unshakeable belief in divine providence, which provides strength to individuals so that they may receive and face the daily disease-related difficulties and fears and, on the other, the accountability of the divine for the current situation and the resignation of the affected individual (22).

Social realm

The association between the higher formal educational level and a better quality of life of the individual, regarding whether physical, psychological, social or environmental aspects (17) was evidenced. In this context, the low level of schooling was characterized as one of the triggering elements of feelings of hopelessness and emotional conflicts, which represent low resilience capacity (19).

In the evaluation of access to health services, it was found that scarce health resources compromise the quality of life, since individuals affected report the need for routine medical follow-up (17). According to this rationale, if access to health care is difficult, stressful or of poor quality, the disease tends to progress and compromises the way of life of the individual. On the other hand, the possible contact with an adequate and accessible health system triggers improved physical health and minimizes associated psychological and social conflicts, promoting the acceptance of the disease, the sense of well-being, social belonging and patient safety, which implies a better quality of life of the affected groups (24).

The process of accelerating retirement has also been mentioned, however, the financial value offered by social security also does not exceed the expenses with the treatment and the minimum for the individual's livelihood, which disrupts the psychological and social plan, since it stands adrift from the normal development of society (10).

Regarding the preservation of social relationships, this has been described as facilitating access to information regarding health care, disease monitoring, support in times of crisis and participation in social events (18).

Coping strategies for individuals with evere chagasic heart disease

Due to the constitution of the analysis categories, the need to highlight Chagas disease patients with severe heart disease emerged, which includes the following cases: a) quickly developing severe acute heart diseases, with important limitations of the individual's work activities; b) chronic heart diseases in a situation of limitation of the patient's physical and functional capacity, despite the indicated clinical and/or surgical treatment; c) chronic or acute heart diseases with total pharmacological or mechanical inotropic support dependence; d) terminal heart disease, which reduces life expectancy and does not respond to the stimuli of maximal pharmacological therapy or to external hemodynamic support (27).

In this perspective, the studies also demonstrated coping strategies for two situations related to severe chagasic heart disease: patients who underwent implantation of implantable devices (pacemaker and/or cardiodesfibrillator) and individuals who required heart transplantation.

In the specific case of patients undergoing pacemaker implantation, it was observed that the experience assumes divergent values throughout the process. The initial idea is that one has a fragile heart, of such intensity that it requires surgical intervention that will convert all the normal functioning of the organism to an unknown apparatus, instigating dread. In the long run, the pacemaker becomes a natural extension of the organism and is seen as a keystone of the bearer's existence, as a tool that rescues life from the moment it was being lost. It thus takes on an unquestionable responsibility: it replaces the heart with what it is no longer able to do, becoming a source of life (22).

Regarding the appropriation of the heart transplantation strategy, the literature revealed that patients with Chagas' disease who underwent this therapy, while not achieving an optimal stage of quality of life, obtained positive results in at least some markers, such as with regard to limited actions and life perspective (28).

Final considerations

Results in all realms addressed showed a quality of life compromised by the disease, in addition to coping strategies mostly limited to the physical realm of the patient, suggesting the need to strengthen the individual in the physical, psychological and social fields, so that interventions may encompass the preservation or recovery of the individual's functional capacity, through the acceptance and empowerment of the subject in the daily coping with the disease, through the provision of accessible and effective health services and the reintegration of the individual into the family and social core.

The limitations of the study build on the lack of a universal concept of quality of life, as well as a standard tool for the evaluation of this concept, in relation to the individual affected by Chagas' disease. The search for studies that address this subject showed scarce records, privileging aspects that go back to the physical realm of the individual, to the detriment of psychological and social elements, which also absorb a dizzying impact of the illness situation faced by the subject and, thus, require measures that meet the corresponding needs.

Moreover, the damage caused to the quality of life originating from the chagasic condition is not very detailed as to the stratification of the disease, since in most findings, individuals are treated only as Chagas' disease carriers, without specifying the clinical form, except severe Chagas' heart disease cases.

We recommended the elaboration of specific tools for the analysis of the impact of Chagas' disease on the experience of the affected subject, in addition to the exploration of the highlighted area, starting from the premise that knowledge about the life of the individual affected by Chagas disease in its different clinical forms may guide the design of more effective health strategies, highlighting the need for studies that promote space for the manifestation of the individual's perception of own health-disease process.

DOI: 10.1590/1413-81232018243.11842017

Collaborations

MAF Cavalcanti, EGC Nascimento, JC Alchieri and CM Andrade worked on the design, outline, analysis and interpretation of data, writing, critical review and approval of the version to be published.

References

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(13.) Uchoa E, Firmo JOA, Dias EC, Pereira MSN, Gontijo ED. Signos, significados e acoes associados a doenca de Chagas. Cad Saude Publica 2002; 18(1):71-79.

(14.) Sanchez-Lermen RLP, Dick E, Salas JAP, Fontes CJF. Sintomas do trato digestivo superior e disturbios motores do esofago em pacientes portadores da forma indeterminada da doenca de Chagas cronica. Rev Soc Bras Med Trop 2007; 40(2):197-203.

(15.) Brasil. Ministerio da Saude (MS). Guia de vigilancia epidemiologica. 6a ed. Brasilia: MS; 2005.

(16.) Araujo SM, Ando MH, Cassarotti DJ, Mota DCGD, Borges SRM, Gomes ML. Programa ACHEI: Atencao ao Chagasico com Atencao Integral no Municipio de Maringa e Regiao Noroeste do Parana, Brasil. Rev Soc Bras Med Trop 2000; 33(6):565-572.

(17.) Hueb MFD. Doenca de Chagas: indicadores cognitivos, de transtorno organico cerebral, de uso de alcool e qualidade de vida [tese]. Ribeirao Preto: Universidade de Sao Paulo; 2006.

(18.) Ozaki Y. Qualidade de vida e sintomas depressivos em portadores da doenca de Chagas em atendimento no ambulatorio do grupo de estudos em doencas de Chagas [tese]. Campinas: Universidade Estadual de Campinas; 2008.

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(20.) Gontijo ED, Rocha MOC, Oliveira UT. Perfil clinico epidemiologico de chagasicos atendidos em laboratorio de referencia e proposicao de modelo de atencao ao chagasico na perspectiva do SUS. Rev Soc Bras Med Trop 1996; 29(2):101-108.

(21.) Gomes LMX, Santos AC, Lima FR, Barbosa TLA, Teles JT. O impacto da doenca de Chagas no cotidiano do portador. Motricidade 2012; 8(Supl. 2):204-211.

(22.) Magnani C, Oliveira BG, Gontijo ED. Representacoes, mitos e comportamentos do paciente submetido ao implante de marcapasso na Doenca de Chagas. Cad Saude Publica 2007; 23(7):1624-1632.

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Article submitted 19/10/2016

Approved 22/02/2017

Final version submitted 24/02/2017

Marilia Abrantes Fernandes Cavalcanti (https://orcid.org/0000-0001-5499-5830) [1]

Ellany Gurgel Cosme do Nascimento (http://orcid.org/0000-0003-4014-6242) [1]

Joao Carlos Alchieri (https://orcid.org/0000-0002-4150-8519) [1]

Cleber de Mesquita Andrade (https://orcid.org/0000-0002-0264-8842) [1]

[1] Faculdade de Ciencias da Saude, Universidade do Estado do Rio Grande do Norte. R. Atirador Miguel Antonio da Silva Neto s/n, Aeroporto. 59607-360 Mossoro RN Brasil. marilia_abrantes17@ hotmail.com

Caption: Figure 1. Flowchart to identify studies on the quality of life of individuals with Chagas disease, selected from PubMed, SciELO and Lilacs databases.

Caption: Figure 2. Flowchart for the identification of studies on the quality of life of patients with Chagas' disease collected through verification of the list of bibliographic references.
Chart 1. Studies on the quality of life of the subject affected by
Chagas' disease, selected through the PubMed, SciELO and Lilacs
databases, described in terms of authorship, year of publication,
objectives, method, sample, variables studied and main findings.

Author         Year of           Title                Study
                study                                location

OLIVEIRA;      2010       Chronic Chagas         Two
GOMES;                    disease carrier        municipalities
CASARIN;                  life: possible         of Rio Grande
SIQUEIRA                  nursing actions        do Sul
                          for a healthy life

AMATO;         1997       Evaluation of          Heart
AMATO                     the quality of         Institute of
NETO; UIP                 life of patients       the Hospital
                          with Chagas            das Clinicas,
                          disease submitted      Faculty of
                          to heart               Medicine,
                          transplantation        University of
                                                 Sao Paulo

MAGNANI;       2007       Representations,       Pacemaker
OLIVEIRA;                 myths and              Outpatient
GONTIJO                   behaviors of           Clinic of the
                          the patient            Hospital das
                          undergoing             Clinicas of
                          pacemaker              the Federal
                          implantation in        University of
                          Chagas disease         Minas Gerais
                                                 (UFMG)

OLIVEIRA;      2011       Health-related         Hospital das
S. ABREU;                 quality of life in     Clinicas of
G. ABREU;                 Chagas' disease        the Federal
ROCHA;                                           University of
RIBEIRO                                          Minas Gerais
                                                 (UFMG) and
                                                 the Orestes
                                                 Diniz (CTR-
                                                 DIP) and the
                                                 Center for the
                                                 Treatment
                                                 and Reference
                                                 of Infectious
                                                 and Parasitic
                                                 Diseases

ARAUJO;        2000       ACHEI Program:         Laboratory
ANDO;                     Chagasic               of Chagas'
CASSAROTTI;               Care with              disease at
MOTA;                     Comprehensive          the State
BORGES;                   Education in           University
GOMES                     the Municipality       of Maringa
                          of Maringa and         (UEM)
                          Northwest Region
                          of Parana, Brazil

FIALHO;        2012       Effects of a           Evandro
TURA;                     program of             Chagas
SOUSA; C.                 exercises on           Clinical
R.OLIVEIRA;               the functional         Research
SOARES; G.                capacity of            Institute and
R. OLIVEIRA               patients with          the National
et al.                    chronic chagasic       Institute of
                          heart disease          Cardiology
                          assessed by            (INC)
                          cardiopulmonary
                          test

Author             Objective                Method

OLIVEIRA;      To know how          A descriptive and
GOMES;         Chagas' disease      exploratory study
CASARIN;       patients live        with a qualitative
SIQUEIRA       and to outline       approach.
               possible nursing     Participants
               actions for a        answered the semi-
               healthier life       structured interview.

AMATO;         To analyze the       The interview with
AMATO          situation of         the members of the
NETO; UIP      patients with        sample was adopted
               Chagas' disease      as a collection tool
               submitted to
               transplantation
               and who were
               alive

MAGNANI;       To evaluate the      Ethnographic
OLIVEIRA;      incorporation        qualitative research,
GONTIJO        of pacemakers        based on an open-
               in the life of       ended interview.
               individuals with
               Chagas disease

OLIVEIRA;      To define the        A cross-sectional
S. ABREU;      quality of           study was performed
G. ABREU;      life profile of      in which the patients
ROCHA;         patients infected    underwent clinical
RIBEIRO        with Chagas          examination, ECG,
               disease              Holter, Doppler and
                                    echocardiogram
                                    monitoring and
                                    autonomic function
                                    tests, in addition to
                                    having answered the
                                    Minnesota Living
                                    With Heart Failure
                                    Questionnaire
                                    (MLWHFQ)
                                    andMedical
                                    Outcomes Study 36-
                                    item short-form (SF-
                                    36) questionnaires

ARAUJO;        To report the        Questionnaires were
ANDO;          experience of        carried out and
CASSAROTTI;    implanting a         medical records of
MOTA;          psychosocial         the participants were
BORGES;        support group        examined
GOMES          for the care of
               patients with
               Chagas' disease
               and to describe
               the patients'
               profile

FIALHO;        To evaluate the      A prospective
TURA;          potential effect     intervention study
SOUSA; C.      of an exercise       in which patients
R.OLIVEIRA;    program on           with chronic
SOARES; G.     the functional       chagasic heart
R. OLIVEIRA    capacity of          disease participated
et al.         patients with        in an exercise
               chronic chagasic     program in cardiac
               infection            rehabilitation.
                                    Subsequently, the
                                    functional capacity
                                    of the participants
                                    was evaluated.

Author              Sample            Variables
                                       studied

OLIVEIRA;      10 patients        Retirement,
GOMES;         with chronic       diagnosis of the
CASARIN;       Chagas' disease    disease, clinical
SIQUEIRA                          form, physical
                                  pain, daily
                                  activities

AMATO;         11 patients        Heart
AMATO          affected by        transplant
NETO; UIP      Chagas disease
               undergoing
               heart
               transplantation

MAGNANI;       15 patients        Social
OLIVEIRA;      with chronic       representations
GONTIJO        chagasic heart     about Chagas'
               disease with       disease, use
               pacemakers         of pacemaker,
                                  social support,
                                  religious beliefs

OLIVEIRA;      126 patients       Gender, tests'
S. ABREU;      with Chagas'       abnormalities
G. ABREU;      disease and 21
ROCHA;         in the control
RIBEIRO        group

ARAUJO;        131 patients       Diagnosis,
ANDO;          with Chagas        disinformation,
CASSAROTTI;    Disease            stigma, changes
MOTA;                             in tests
BORGES;
GOMES

FIALHO;        18 patients        Performing
TURA;          with chronic       physical
SOUSA; C.      Chagas' heart      exercises
R.OLIVEIRA;    disease
SOARES; G.
R. OLIVEIRA
et al.

Author                            Main findings

OLIVEIRA;      Early retirement of individuals affected by
GOMES;         Chagas' disease is not enough to defray the
CASARIN;       cost of the disease. Most patients with the
SIQUEIRA       chronic form become aware of their condition
               belatedly, after the development of symptoms
               or when seeking, by chance, health services. All
               subjects reported feeling pain in the various
               body segments. The individuals affected, with
               emphasis on the cardiac patients, showed a poor
               performance of daily activities and at work.

AMATO;         Patients with Chagas disease treated with heart
AMATO          transplantation showed improvements in the
NETO; UIP      limitations of activities and life prospects

MAGNANI;       Social representations elaborated around the
OLIVEIRA;      disease trigger psychological damages that
GONTIJO        establish barriers in the life dynamics of patients.
               As for social bonds, family and friends are in
               solidarity with the affected individual, while the
               labor relationships are weakened.In faith, the
               subject seeks answers to the disease condition.
               Faced with the need to use the pacemaker, the
               initial idea is that one has a fragile heart.
               Over time, however, it becomes a natural
               extension of the body and is visualized as the
               source of life.

OLIVEIRA;      Being a woman was characterized as a risk
S. ABREU;      for worse quality of life scores in the physical,
G. ABREU;      mental and emotional realms. Changes in the
ROCHA;         electrocardiogram were not related to the quality
RIBEIRO        of life deficit.
               An abnormal Doppler echocardiogram,
               ventricular arrhythmia and worse functional
               classification triggered a poorer quality of life.

ARAUJO;        The shock caused by the diagnosis of the
ANDO;          disease is aggravated by misinformation and
CASSAROTTI;    stigma about the disease. Discrete changes in
MOTA;          electrocardiogram and chest radiographs were
BORGES;        related to the benignity of the disease
GOMES

FIALHO;        There was no improvement or worsening of
TURA;          cardiac symptoms by performing the physical
SOUSA; C.      exercise program
R.OLIVEIRA;
SOARES; G.
R. OLIVEIRA
et al.

Chart 2. Manifestations of Chagas' disease that interfere in the
quality of life of the individual classified according to physical,
psychological and social realm.

                             Variables

Physical realm         Psychological realm      Social realm

Female gender          Depression               Social
                                                  representations
Advanced age           Reaction on discovery    Job loss
                          of disease
Late diagnosis         Sadness                  Early retirement
Physical pain          Fear of death            Change in social
                                                   relationships
Clinical form          Dissatisfaction with     Change in social
                          the quality of life      dynamics
Compromised daily      Lower resilience         Dissatisfaction with
   activities             capacity                 sexual life
                       Stressing events

Source: Own elaboration.

Chart 3. Coping strategies that influence the quality of life of
patients with Chagas' disease

                               Variables

Psychological realm        Social realm         Social realm

Performing physical        Religious beliefs    Schooling level
   exercises
Drug therapy                                    Access to health
                                                   services
Pacemaker implantation                          Social security
Heart transplantation                           Preservation of social
                                                   Relationships

Source: Own elaboration.
COPYRIGHT 2019 Associacao Brasileira de Pos-Graduacao em Saude Coletiva - ABRASCO
No portion of this article can be reproduced without the express written permission from the copyright holder.
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Article Details
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Author:Cavalcanti, Marilia Abrantes Fernandes; do Nascimento, Ellany Gurgel Cosme; Alchieri, Joao Carlos; A
Publication:Ciencia & Saude Coletiva
Article Type:Bibliografia
Date:Apr 1, 2019
Words:5769
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