Multidisciplinary nursing care in chronic Chagas disease: a scoping review

We chose a scoping literature review design to consolidate empirical research findings and address our research questions. Our protocol was drafted following the Preferred Reporting Items for Systematic Reviews and Meta-analysis Extension for Scoping Reviews (PRISMA-ScR) and the report the strategies are available at PRISMA-S [16]. The final protocol was registered prospectively with the Open Science Framework on 09 November 2024 (https://​doi.​org/​10.​17605/​OSF.​IO/​VUNPG).

The PICOS (Population, Intervention, Comparator, Outcome, Study design) [17] eligibility criteria are as follows. The population (P) includes individuals with chronic CD. The intervention (I) consists of multidisciplinary nursing care that involves specific, evidence-based nursing interventions. The comparison (C) is standard care or conventional nursing practices. The primary outcome (O) focuses on improvements in HRQoL and enhanced management of disease symptoms, specifically those related to cardiac and digestive manifestations.

We conducted an online search in three literature databases: the Scientific Electronic Library Online (Scielo Brazil, São Paulo SP, Brazil; https://​scielo.​br/​), the Science Literature Database (LILACS; https://​lilacs.​bvsalud.​org/​), and the US National Library of Medicine National Institutes of Health (PubMed, Bethesda MD, USA). The search employed Health Sciences Descriptors (DeCS) using the descriptors “Chagas disease,” “nursing,” “nursing assistance”, and “nursing care” in English, Spanish, and Portuguese. The Boolean operator “OR” was used to group synonyms, and these groups were combined with “Chagas disease” using the “AND” operator. The search results were then filtered for the period from 1980 to 2022 and exported to a Microsoft Excel database in CSV (comma-separated values) format.

The inclusion criteria were as follows: (1) articles indexed in the databases, (2) original studies published in Portuguese, Spanish, or English between 1980 and 2022. The survey was conducted from October 2022 to March 2023, excluding secondary publications such as books, monographs, dissertations, and theses.

Two independent researchers performed the extraction and analysis of primary data. Data from the identified studies were initially extracted by one reviewer and subsequently cross-verified for accuracy by another reviewer. Articles underwent a sequential review process, beginning with the evaluation of titles, followed by abstracts (if available), and finally a thorough reading of the full text. In cases of uncertainty or discrepancies, a third and/or fourth researcher was consulted for resolution. The extracted data encompassed specific details about the author(s) and publication year, country and settings, research objectives, study design, study population, description of exposure/intervention, and outcome variables.

Since this is a scoping review aimed at mapping all available evidence, we will not conduct any assessments of the risk of bias or appraisals of study quality for the included studies.

A total of 633 articles were initially identified. After analyzing the titles, 376 articles were excluded, and an additional 221 articles were removed due to duplication. Among the remaining 36 articles, we reviewed the abstracts and considered 32 articles for the scoping review. Four articles were further excluded as they were not available in the scientific literature. After a qualitative analysis, we included 17 out of the 32 selected articles in this meta-analysis. The selection of studies followed the Preferred Reporting Items for Systematic Reviews and Meta-analysis Protocols (PRISMA- ScR) model [16], as depicted in Fig. 1.

A total of 17 studies met the inclusion and exclusion criteria, all conducted in Brazil (n = 17). The majority of these studies were exclusively written in Portuguese (n = 14), while one was in English, another in both Portuguese and English, and one in Portuguese, English, and Spanish. It is noteworthy that 12 out of 14 articles available only in Portuguese also included an abstract in English.

Among the studies, the largest portion (n = 9) focused on describing the nursing care plan (NCP) for cardiac manifestations of chronic CD, while five articles discussed nursing care plan for patients with CD, regardless of symptomatology. Additionally, two articles detailed nursing care plans for digestive manifestations, and one article outlined the nursing care plan for newborns with congenital CD. Table 1 offers an overview of all the selected articles employed in this review.

Nurses play a crucial role in managing the physical and emotional burden of chronic Chagas disease by recognizing the need for health education and self-care interventions. The systematization of nursing care (SNC) encompasses a set of interconnected measures aimed at ensuring comprehensive care provided by the nursing [12, 18‐21]. When developing individualized care plans, nurses must consider both objective and subjective factors [21]. These measures are particularly relevant for patients with the cardiac form of the disease, early diagnosis, and well-managed treatment, as they contribute to improved patient survival and enhanced HRQoL [20‐26]. Table 2 provides an overview of the general measures implemented by specialized nurses in the care of chronic Chagas disease carriers.

The nursing care plan for newborns with congenital Chagas disease involves crucial responsibilities for the nurse. These include preparing the nursing station and ensuring the availability of necessary supplies and equipment, such as a preheated incubator, heated water mattress, cardiorespiratory monitor, secretion suction device, dry and wet oxygen sources, thermometer, and stethoscope Additionally, close monitoring of specific clinical aspects is imperative during the hospitalization period to prevent symptom exacerbation [14]. Comprehensive information concerning these aspects can be found in Table 3.

Cardiac abnormalities pose a significant threat to patients with chronic Chagas disease. These abnormalities arise from myocardial lesions, arrhythmia, and pulmonary or systemic thromboembolic events [9, 10]. As the disease progresses gradually, patients must adapt to the limitations it imposes on their health [20]. Therefore, the NCP includes measures to minimize harm. Before developing the plan, various factors need consideration, such as changes in healthcare, including reduced cardiac output, altered sexual behavior, sleep disturbances, fluid intake, adherence to therapy, changes in bowel movements, self-care deficits, decreased physical activity, nutritional deficiencies, swallowing disorders, and other pertinent aspects [23, 27, 28].

Cardiac manifestations of Chagas disease encompass a wide range of symptoms [20, 27]. Electrocardiography (ECG) plays a vital role in assessing myocardial electrical function and enables the evaluation of global systolic dysfunction of the left ventricle [27, 29]. Based on ECG findings, patients are classified into subgroups (Table 4). Subgroups A, B1, and B2 do not indicate heart failure, despite observed abnormalities in ECG or echocardiography. Conversely, subgroups C and D exhibit abnormalities that suggest heart disease in both examinations [9]. Nurses prepare patients for these tests by providing explanations, recording electrical impulses, and elucidating their significance [25]. Patients with the indeterminate cardiac form or normal sinus rhythm (no ECG changes) have a prognosis similar to uninfected individuals, but they still require annual follow-up.

Heart failure is a secondary cardiomyopathy observed in chronic Chagas disease syndrome, affecting all four chambers of the heart. During the chronic phase, right ventricular obstruction occurs, leading to symptoms of systemic venous congestion, including peripheral edema, ascites, liver congestion, and carotid artery turgor [27, 30]. Left heart involvement, resulting in pulmonary congestion and reduced cardiac output, is less common. Although most cases of heart failure do not present complications, a change in circumstances can trigger acute decompensation. However, with proper control and intensified treatment, patients can maintain stability for extended periods [31] .

In terms of nursing diagnosis, heart failure represents an advanced stage of chronic Chagas cardiomyopathy [27], with high water volume being a common feature among patients, particularly those who have not followed medical recommendations. Nurses should possess proficiency in managing patients with high water volume, especially those with chronic Chagas cardiomyopathy, and focus on preventive measures by motivating patients to engage in treatment and assisting them in establishing and utilizing the necessary mechanisms [27, 28]. Preventing high water volume is crucial in patients with chronic cardiomyopathy, irrespective of their primary symptoms. The success of diagnosis is measured by the ability to implement preventive treatment. High water volume frequently occurs in patients with chronic Chagas cardiomyopathy [27]. Therefore, nurses play a vital role in helping these patients implement preventive treatment and exploring strategies to facilitate the establishment and utilization of necessary mechanisms for such treatment.

Treatment of heart failure enhances hemodynamics, alleviates symptoms, improves HRQoL, extends survival, and can halt, interrupt, or reverse the progression of damage [32]. Considering the detrimental effects of the chronic phase of Chagas disease, nurses must consider preventive and essential aspects. Non-pharmacological treatments have proven to be pivotal in developing support programs for heart failure patients [23, 24, 27, 33]. Nurses assume a crucial role in providing support and systematic care to mitigate the negative consequences of cardiac complications [24, 31]. Figures 2, 3, 4 and 5 illustrates the primary symptoms of heart failure for which nurses must provide assistance, including tachycardia, dyspnea, peripheral edema, and congestion.

Nursing support for tachycardia focuses on reducing arrhythmias and managing cardiogenic shock by enhancing cardiac output (Fig. 2). In managing arrhythmia, a multidisciplinary team with nurse involvement is indispensable for providing basic life support, monitoring and controlling pulse rate, identifying life-threatening arrhythmia signs (ventricular fibrillation, VF; ventricular tachycardia, VT), such as altered consciousness, and monitoring cardiac function post-exercise. Electrocardiography should be encouraged, and cardiac activity, whether invasive or non-invasive, should be closely monitored in emergency departments or intensive care units. Similarly, in cases of cardiogenic shock, nurses should administer drug infusions and perform systematic life support maneuvers. Monitoring blood pressure fluctuations (orthostatic hypotension), observing signs of oliguria, reporting rapid and weak pulse, as well as peripheral perfusion discrepancies, initiating cardiopulmonary resuscitation, noting the presence of the third heartbeat, and preparing for resuscitation (cardiotonic drugs) are additional responsibilities. Lastly, for high cardiac output, nurses must ensure proper patient positioning, monitor changes in heart rate after exercise, control hydration, and reduce physical exertion [31]. Additionally, nurses are accountable for establishing physiological and hemodynamic goals, coordinating interventions, managing medication timing, verifying labels and infusion devices, safely transferring infusions, and acting as substitutes for fatigued or shift-changing emergency care professionals.

The nursing plan for dyspnea should address fatigue, functional dyspnea, and impaired gas exchange (Fig. 3). To address fatigue, nursing interventions involve monitoring electrolyte levels (sodium and potassium), implementing a social and physical rehabilitation plan, establishing periods of exercise and rest, and promoting social interaction. For functional dyspnea, nursing care focuses on assessing hemodynamic status compared to established values of functional respiratory frequency, evaluating pulmonary function, monitoring the clinical status of heart failure and its complications, and observing pulse oximetry values below 90%. Nursing support for gas exchange involves maintaining the hospital bed at a 90° angle, assessing pulmonary ventilation, ensuring clear airways, performing arterial puncture for laboratory analysis, and monitoring consciousness, temperature, pulse, respiratory rate, and arterial pressure [31].

Peripheral edema commonly occurs in patients with chronic Chagas disease, characterized by fluid accumulation in the body's extracellular spaces and cavities (Fig. 4). This condition can result in complications such as ascites, impaired blood flow in myocardial tissue, and metabolic acidosis due to fluid and electrolyte imbalances. Nurses play a vital role in addressing these challenges by diligently monitoring various parameters and implementing suitable interventions.

To effectively manage fluid retention, nurses should closely monitor fluid intake, measure abdominal circumference daily, assess peripheral blood pressure, quantify edema in the lower limbs, and conduct physical examinations to identify associated signs such as death rattle and jugular vein distension. For optimal myocardial perfusion, nurses need to monitor peripheral blood pressure, ensure appropriate warming and hygiene of the upper and lower limbs to prevent skin lesions, identify signs of cardiac tissue hypoperfusion such as edema, cold skin, and pulmonary congestion. Metabolic acidosis, which can arise from reduced tissue perfusion in the presence of low arterial pressure or other factors such as renal dysfunction, infection, or electrolyte imbalances, requires diligent monitoring by nurses in collaboration with medical support and physiological assessment.

When managing peripheral edema and its associated complications, the care plan should focus on evaluating the extent and severity of fluid retention, identifying underlying factors contributing to edema, and considering relevant laboratory changes related to respiration or metabolism [31]. Engaging in discussions with a multidisciplinary team is crucial for nurses to determine the most appropriate treatment strategies tailored to the unique needs of each patient.

The care plan for congestion in patients with chronic CD focuses on assessing hypoxia, minimizing physical exertion, reducing fluid intake, monitoring oxygen therapy, and determining optimal patient positions in the hospital bed. To ensure treatment adherence, the plan involves providing guidance, considering cognitive abilities and social conditions, and reconciling medications. Additionally, the assistance plan addresses the patient's ability to dress independently. In these situations, nurses can educate families and caregivers about the patient's attempts to dress independently, mitigate triggers for arterial pressure changes, ensure accessibility to personal items, consider potential drug interactions, monitor fluid and salt intake, educate families and caregivers about the benefits of loose and easy-to-wear clothing, and remain attentive to signs of hypoperfusion, dizziness, and sudden dyspnea [31].

Considering the potential complications of Chagas disease-induced heart failure, the primary objective of the multidisciplinary care team is to maintain patients' clinical and psychological well-being, improve treatment adherence, implement nutritional hygiene measures, and enhance overall HRQoL [11]. However, it is crucial to recognize the dynamic nature of these situations, as new events and incidents may occur. Therefore, the development of a comprehensive care plan by nursing professionals is crucial in informing patients about their health status and ultimately improving their HRQoL.

In this context, nurses play a vital role in promoting self-care and tailoring treatment plans to meet each patient's lifestyle and specific needs.

The implantation of pacemakers serves as an alternative treatment for arrhythmia cases. Studies indicate that chronic Chagas disease (CD) patients experience improved HRQoL compared to patients with heart disease from other causes [34, 35]. The care plan focuses on various interventions, including device registration, wearer monitoring, complication prevention, infection control, wearer immobilization, and pain management (Table 5).

During device registration, nurses record the electrode type and model, and evaluate the wearer's response to the procedure. For wearer monitoring, nurses attach ECG electrodes to monitor device function, trigger alarms, evaluate ECG readings, determine device frequency, observe spontaneous beats, monitor vital signs at 15-minute intervals until stabilization, and monitor urine output and consciousness levels. To prevent complications, nurses review post-pacemaker insertion chest X-rays, order chest X-rays and ECGs after the procedure, maintain clean compression bandages at the insertion site for up to 48 hours, immobilize the arm to prevent wire movement, and monitor for signs of cardiac tamponade (e.g., paradoxical pulse, distended neck veins, distant heart sounds), cardiac abnormalities, perfusion migration, and hemothorax or pneumothorax symptoms (e.g., sweating, hypotension, agitation, dyspnea, cyanosis).

Infection prevention measures involve controlling body temperature, monitoring the injection site for redness, heat, tenderness, and pain, addressing wearer complaints of hypersensitivity and discomfort, and applying sterile dressings. When immobilizing the patient, nurses encourage active exercises in bed to prevent venous stasis, teach deep breathing techniques to avoid forceful coughing, prevent bypass obstruction, recommend up to 48 hours of bed rest, and advise against lying on the side of the implant. Pain management strategies include promoting recreational activities, administering physician-directed pain medication, and suggesting back massages for relaxation. Nurses should also consider whether the pacemaker includes an implantable cardioverter defibrillator and consider appropriate shocks, proximity to magnetic fields, and obstructions during magnetic resonance testing if the equipment is unsuitable for the exam. Table 5 provides a brief overview of the nurse's care plan for chronic CD patients with pacemakers.

The digestive form of Chagas disease is generally better tolerated by infected individuals. However, close monitoring by nurses is essential to prevent further damage. Similar to the cardiac form, there is currently no curative therapy available for the chronic digestive form caused by Chagas disease. Treatment options such as drugs, endoscopic procedures, or surgery aim to reduce lower esophageal contractility to promote proper emptying in cases of megaesophagus [36]. Early diagnosis is crucial to prevent complications, improve HRQoL, and preserve esophageal structure and function [37]. Treatment should include counseling, educational activities, and dietary guidelines to adjust eating habits, as they can lead to an improved HRQoL and reduced risk of complications [9].

The treatment plan for patients with megaesophagus involves monitoring their eating habits (Fig. 6). It is important to emphasize the need for adequate food intake and a balanced diet without substituting foods [37]. Meals should be taken at a leisurely pace and in small amounts, avoiding alcoholic beverages and foods that are too hot or too cold. The consistency of liquid, pulpy, or solid foods should be adjusted based on the degree of dysphagia. Spicy foods should be avoided as they worsen dysphagia. Dinner is not recommended due to common nocturnal regurgitation, where gastric contents flow into the airway. Lying down after meals should also be discouraged, especially for patients experiencing nocturnal regurgitation. The nurse should adapt the care plan according to the recommendations of the dietitian. Approximately half of megaesophagus patients experience retrosternal pain or pain at the xiphoid process, which may improve with fluid intake. Isosorbide dinitrate, at a sublingual dose of 5 mg before meals, can reduce lower esophageal sphincter pressure and facilitate emptying, but it may cause headaches [38]. Therefore, its use is limited to patients who cannot tolerate other treatments.

Patients with advanced megaesophagus who are malnourished and candidates for surgical treatment may require temporary enteral or parenteral nutrition. In such cases, nurses are responsible for the care of these devices [9, 37].

The care of patients with megacolon should also focus on appropriate eating habits (Fig. 6) [37]. Individuals who have bowel movements only two or three times a week should be advised to consume fruits and vegetables, and increase fluid intake to prevent fecal accumulation. The diet should include the usual foods with restrictions on constipating foods. It is recommended to drink at least two liters of water daily and consume foods that promote bowel motility. Fluid intake and bowel motility should be regularly monitored for hospitalized patients. Nurses, in collaboration with the medical team, should consider suspending constipating medications such as opioids, diuretics, antidepressants, antihistamines, anticonvulsants, and antiparkinsonian agents. If dietary or drug treatments (laxatives) do not produce satisfactory results, glycerin or saline enemas can be used. Bowel cleansing with 500–1000 ml twice a week is recommended. For patients with fecaloma, the procedure should be performed two to three times a day, using no more than 3.5 liters of solution per day. This treatment helps eliminate fecaloma, normalize bowel movements, and restore the diameter of the colon [9, 37].

In patients undergoing surgery for chagasic megacolon treatment, basic care should include hygiene measures such as bed bathing, oral hygiene, and monitoring vital signs, diuresis, bowel movements, and excretory care [37]. Postoperative care, including assessing gastrointestinal function, monitoring food intake, nausea/vomiting, flatulence, flatus excretion, abdominal and perianal pain, hydro-aerial sounds, and bowel excretions, as well as assessing urinary system function, urine output, self-care promotion (bed mobilization, ambulation, hygiene), and colic stump protection, are among the nurse's responsibilities [37].

Special precautions should be taken for patients who have undergone the Dunham-Haddad surgical technique. Some individuals may experience fecal incontinence and have difficulties understanding and accepting the colic stump. In such cases, nurses with knowledge about the procedure should guide the team, provide self-care guidelines to the patient, and communicate signs and symptoms. The nurse should also prescribe general nursing care for postoperative colon surgery, promote hygienic care of the colic stump, provide instructions for colic stump care using gauze or vaseline compresses, diapers, absorbents, and sitz baths with warm water. The use of a flexible material wheel is advised, as well as guidance on food acceptance and adaptation, fecal incontinence, control of defecation sphincters, and discussions about the colic stump, second-stage surgery, and prospects for improvement [15, 37]. Nursing plays a crucial role in guiding individuals with the digestive form of Chagas disease regarding their eating and behavioral habits to minimize the negative impact of the disease on their HRQoL.