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

Cavalcanti, Marília Abrantes Fernandes; Nascimento, Ellany Gurgel Cosme do; Alchieri, João Carlos; Andrade, Cléber de Mesquita

doi:10.1590/1413-81232018243.11842017

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REVIEW • Ciênc. saúde colet. 24 (4) • Apr 2019 • https://doi.org/10.1590/1413-81232018243.11842017 copy

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

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

We aimed to identify the manifestations and coping strategies of Chagas disease that influence the quality of life of the affected subject. This is a literature systematic review carried out in PubMed, SciELO and Lilacs databases, through which sixpapers were retrieved, in addition to six publications identified with the verification of the bibliographic list and four papers through manual search, which were independently evaluated by two reviewers. The variables addressed were set in the thematic axes 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, subdivided into three realms, namely, physical, psychological and social. The results seen in all addressed realms evidenced a quality of life compromised by the disease, measures mostly limited to the patient’s physical realm and incipient records of studies in the area. We suggest further exploring the proposed theme, believing that knowledge of the patient living with the disease promotes the development of effective health intervention strategies.

Chagas disease; Trypanosoma cruzi; Quality of life

Author	Year of study	Title	Study location	Objective	Method	Sample	Variables studied	Main findings
OLIVEIRA; GOMES; CASARIN; SIQUEIRA	2010	Chronic Chagas disease carrier life: possible nursing actions for a healthy life	Two municipalities of Rio Grande do Sul	To know how Chagas’ disease patients live and to outline possible nursing actions for a healthier life	A descriptive and exploratory study with a qualitative approach. Participants answered the semi-structured interview.	10 patients with chronic Chagas’ disease	Retirement, diagnosis of the disease, clinical form, physical pain, daily activities	Early retirement of individuals affected by Chagas’ disease is not enough to defray the cost of the disease. Most patients with the 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; AMATO NETO; UIP	1997	Evaluation of the quality of life of patients with Chagas disease submitted to heart transplantation	Heart Institute of the Hospital das Clínicas, Faculty of Medicine, University of São Paulo	To analyze the situation of patients with Chagas’ disease submitted to transplantation and who were alive	The interview with the members of the sample was adopted as a collection tool	11 patients affected by Chagas disease undergoing heart transplantation	Heart transplant	Patients with Chagas disease treated with heart transplantation showed improvements in the limitations of activities and life prospects
MAGNANI; OLIVEIRA; GONTIJO	2007	Representations, myths and behaviors of the patient undergoing pacemaker implantation in Chagas disease	Pacemaker Outpatient Clinic of the Hospital das Clínicas of the Federal University of Minas Gerais (UFMG)	To evaluate the incorporation of pacemakers in the life of individuals with Chagas disease	Ethnographic qualitative research, based on an open-ended interview.	15 patients with chronic chagasic heart disease with pacemakers	Social representations about Chagas’ disease, use of pacemaker, social support, religious beliefs	Social representations elaborated around the disease trigger psychological damages that 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; S. ABREU; G. ABREU; ROCHA; RIBEIRO	2011	Health-related quality of life in Chagas’ disease	Hospital das Clínicas of the Federal University of Minas Gerais (UFMG) and the Orestes Diniz (CTR-DIP) and the Center for the Treatment and Reference of Infectious and Parasitic Diseases	To define the quality of life profile of patients infected with Chagas disease	A cross-sectional study was performed in which the patients underwent clinical examination, ECG, 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	126 patients with Chagas’ disease and 21 in the control group	Gender, tests’ abnormalities	Being a woman was characterized as a risk for worse quality of life scores in the physical, mental and emotional realms. Changes in the electrocardiogram were not related to the quality of life deficit. An abnormal Doppler echocardiogram, ventricular arrhythmia and worse functional classification triggered a poorer quality of life.
ARAÚJO; ANDÓ; CASSAROTTI; MOTA; BORGES; GOMES	2000	ACHEI Program: Chagasic Care with Comprehensive Education in the Municipality of Maringá and Northwest Region of Paraná, Brazil	Laboratory of Chagas’ disease at the State University of Maringá (UEM)	To report the experience of implanting a psychosocial support group for the care of patients with Chagas’ disease and to describe the patients’ profile	Questionnaires were carried out and medical records of the participants were examined	131 patients with Chagas Disease	Diagnosis, disinformation, stigma, changes in tests	The shock caused by the diagnosis of the disease is aggravated by misinformation and stigma about the disease. Discrete changes in electrocardiogram and chest radiographs were related to the benignity of the disease
FIALHO; TURA; SOUSA; C. R.OLIVEIRA; SOARES; G. R. OLIVEIRA et al.	2012	Effects of a program of exercises on the functional capacity of patients with chronic chagasic heart disease assessed by cardiopulmonary test	Evandro Chagas Clinical Research Institute and the National Institute of Cardiology (INC)	To evaluate the potential effect of an exercise program on the functional capacity of patients with chronic chagasic infection	A prospective intervention study in which patients with chronic chagasic heart disease participated in an exercise program in cardiac rehabilitation. Subsequently, the functional capacity of the participants was evaluated.	18 patients with chronic Chagas’ heart disease	Performing physical exercises	There was no improvement or worsening of cardiac symptoms by performing the physical exercise program

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

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

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[1] 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.