BURDEN OF CAREGIVERS OF PATIENTS UNDER HOME CARE* SOBRECARGA DO CUIDADOR DE PACIENTES ATENDIDOS NA ATENÇÃO DOMICILIAR SOBRECARGA DEL CUIDADOR DE PACIENTES TRATADOS EN ATENCIÓN DOMICILIARIA

Objective: to assess the burden of caregivers of patients treated by a public home care program. Method: this is a quantitative, descriptive, cross-sectional study, with 127 caregivers of patients treated by the Melhor em Casa Program. Sociodemographic and clinical data were collected, and the reduced Zarit Burden Interview Scale and the Beck Hopelessness Scale were also applied. Descriptive and bivariate data analyses were performed. Results: of the 127 caregivers, the majority was female (114=89.8%), pardos (81=63.8%); composed of unmarried (56=44.1%) and the mean age was 46.66 years. Importantly, 38.6% (49) had moderate to severe burden, 78.7% (110) stated the occurrence of changes in their daily routine, 59.8% (76) mentioned having suffered some change in emotional state after starting the care with the patients and 56.7% (72) have body ache. The bivariate analysis confirmed the statistical significance of 15 independent variables. Conclusion: the burden of caregivers of homebound patients is a common finding, requiring care actions for its prevention. Descriptors: Caregivers; Burnout, Psychological; Home Care Services; Home Nursing; Homebound Persons; Nursing.

Due to changes in the morbidity and mortality and fertility, Brazil has been undergoing, in recent decades, demographic and epidemiological transitions, whose consequence is the population aging, greater longevity, increased prevalence of chronic non-communicable diseases, hospitalizations and reduction or loss of functional capacity. [1][2][3][4] In this context, there is need to develop new health care strategies to ensure continuity of care processes for the population. Therefore, there arises the Home Care (HC) assistance modality, whose purpose is to rearrange the healthcare, ensuring an ongoing assistance contextualized to the user's reality, when providing the care at the client's home. [5][6] Representing a milestone and a commitment that the HC is a priority, in November 2011, the Brazilian Federal Government launched the Program Melhor em Casa (PMC), which reaffirmed the HC as a strategy of technological incorporation of substitutive character to the low-and midcomplexity hospital intervention to the care initiated in the services of urgency and emergency and complementary to the primary care. [7][8][9] In the HC context, the caregiver is an important figure, who can be defined as the person providing the care directly, continuously and/or regularly, at home, and may or may not be someone from the family, with or without remuneration. The caregiver has the following responsibilities: assist in body care; nutrition; mobility; change of decubitus, and comfort; serve as a link between the user, family and healthcare team; administer prescribed medications; give psychological support and communicate complications to the health team. 10 The experiences as a caregiver vary between positive and negative aspects. The main positive aspects are the feelings of affection, solidarity, gratification, appreciation of his/her actions, commitment and well-being. As negative aspects, the abandonment of the work, difficulties in the affective life and social activities such as leisure, in addition to changes in the health-disease process. Those points minimize and maximize the caregiver's feeling of burden.  The caregiver's burden consists of a disturbance resulting from work in dealing with the physical or mental dependency of the person who needs care and attention.  Furthermore, there is also the set of mental, physical and socioeconomic problems that affect the emotional balance, social relationships and daily activities of the caregivers. 16 A previous study on caregivers' burden held in homes in the municipality of Manoel Vitorino-BA evidenced the mean score in the Zarit Scale of 47 points (moderate burden). 17 Another study, also developed from the Zarit Scale with caregivers in the homes of users registered in a HC service in the municipality of Goiânia-GO, obtained a prevalence of 48.4% of moderate nurden. 16 Therefore, the caregiver's burden is a frequent event. The evaluation of the caregiver's burden grade through instruments enables health professionals to determine how the care task affects the lives of those individuals, assisting them in developing strategies for coping with the situation.  Moreover, the nurse can play a vital role in the identification of burden and complicating factors in the caregiver's work, and thus, plan and implement actions to prevent or minimize that problem. Furthermore, there is a limitation of studies in the literature that specifically address the issue of the burden of caregivers of users linked to HC public services.
• To assess the burden of caregivers of patients treated through a public home care program. This is a quantitative, descriptive, crosssectional study, performed with caregivers of patients treated by the PMC in a city in northern Minas Gerais, Brazil, in the period from June 2017 to January 2018.
The municipality is enabled, by the Ministry of Health, since December 2013, to perform the PMC. This HC service is composed of multidisciplinary teams that aim to support the families of users of the Unified Health System (UHS). It offers home treatment for patients with motor rehabilitation needs, chronic diseases without worsening or in postoperative situation and with possibility of dehospitalization.
This study included caregivers who met the following inclusion criteria: age greater than or equal to 18 years; taking care of patients registered and assisted by the PMC and consenting to participate in the study by signing the Informed Consent Form (ICF). Caregivers not found in the household in up to three attempts were excluded.
In the data collection period, 131 caregivers were identified. Of this population, four were excluded by not accepting to participate in the study. Therefore, after the application of inclusion and exclusion criteria, the final sample consisted of 127 caregivers.
A graduate student performed the data collection, from the seventh term of the Nursing course of a public university in Minas Gerais, duly qualified and under the supervision of the advising professor. Data collection used an adapted and systemized instrument containing variables of INTRODUCTION OBJECTIVE METHOD socioeconomic and clinical characterization, namely: name: age; sex; color; marital status; profession; economic classification; characteristics of the street of residence; schooling; time as caregiver; hours daily used with the patient; formal or informal caregiver; degree of kinship in relation to the patient; housing arrangement; medical diagnosis; change in daily routine; altered leisure and social activities; burnout and tiredness; changes in the house routine; jeopardized attention to other family members; emotional state; body ache; fail to enjoy vacation; receives fewer people at home; works less or quit the job and retired earlier.
The reduced Zarit Burden Interview Scale (ZBI) 20 and the Beck Hopelessness Scale were also applied. 21 The reduced ZBI scale score varies between 14 and 22 points, interpreted in the following way: mild burden, up to 14 points; moderate burden, from 15 to 21 points, and severe burden, above 22 points. The Beck Hopelessness Scale score varies from zero to 35 points, in the following way: minimum depression level, zero to 11 points; mild depression level, 12 to 19 points, and moderate depression level, 20 to 35 points.
The dependent variable of the study was the caregiver's burden (score on the scale of reduced ZBI ≥ 15 points); the independent variables were divided into the caregiver's characterization and clinical data. The data were analyzed after double entry in the program Statistical Package for Social Sciences (SPSS), version 20.0, checking their consistency. Subsequently, the descriptive analysis (simple frequency and percentages) was performed. The prevalence was established considering the number of caregivers who reported the outcome to be identified during the data collection period. Bivariate analysis was used for the studied variables, in order to evaluate the association with the caregiver's burden, from the chi-square test and Fisher's exact test.  reported having suffered some change in emotional state after initiating the care with the patient, 56.7% (72) have body ache and 63.8% (81) feel burnout or tiredness. Leisure and social activities also changed to 66.1% (84), 38.6% (49), because they no longer go on vacation, and 42.5% (54) work less or quit the formal employment. Table 3 presents the association between sociodemographic and clinical characteristics of caregivers of patients treated by a home care program in northern Minas Gerais with the caregiver's burden evaluated by the reduced Zarit Scale. According to the scores of the reduced Zarit Scale, there was prevalence of moderate to severe burden in caregivers of patients treated by a home care program of 38.6%.

RESULTS
Higher burden levels were identified by other studies that also evaluated the caregivers' burden through the Zarit Scale. In a study in Recife (PE), 87.2% of the caregivers showed presented burden; in Manoel Vitorino (BA), the average was 47 points (moderate burden); in Goiás (GO), 33.83 (moderate burden); in João Pessoa (PB), 77.2% of the caregivers presented work overload and, in Ribeirão Preto (SP), 40% of caregivers obtained scores equal to or greater than 44, demonstrating a moderate to high burden level. 22, In relation to the caregiver's profile, the data found in this study corroborate other studies 19,27 in which middle-aged women and relatives of the patient normally exercise the function of caregiver. Such finding explains the woman's social activities as care provider, since culturally is associated with the role of mother. This confirms that taking care of the patient often becomes an assignment that the woman assumes in the domestic sphere. 22, The marital status unmarried of caregivers in this study differs from the literature, since the greater prevalence is married caregivers. 16,23,26 The caregiver can be defined as informal or formal. The informal caregivers do not receive payment for the care provided and do not have professional training. Therefore, the informal caregivers are usually family members, friends or neighbors, while the formal caregiver is the qualified professional who provides services under remuneration. 10 The type of caregiver was also associated with burden (P<0.001). Corroborating other studies, 7 informal caregivers presented greater burden.
Informal caregivers can suffer from burden due to several factors, such as the severity of the patient's clinical status, level of functional disability, number of medications in use, presence of psychiatric, visual, auditory and/or cognitive disorders, low schooling, lack of social support and guidance. 23,26 In this context, this population should be the focus of attention, and actions need to be implemented aiming to prevent or reduce situations that could result in increased burden.
The daily time spent with the care ranged between one and 24 daily hours, with an average of 16.20 hours. The bivariate analysis allowed inferring that the daily time as caregiver ≥ 17 hours can contribute to greater burden (P<0.001). This datum is corroborated by other studies.  The prolonged dedication can expose the caregiver's health to risks, mainly due to the stress factors related to care, such as the lack of formal and informal support. 17 Moreover, few people were or are prepared to assume this responsibility, which jeopardizes the quality of life of both the caregiver and the patient. The caregivers usually cannot keep outof-home functions. Furthermore, they frequently leave the job, exercising full-time care, tending to put in second place their own lives, self-care activities, leisure and social activities. 23,26 It is necessary to understand that the care is a noble task, however, complex, which, in certain situations, makes this activity health-threatening for those who perform it, because the care routine may deprive the accomplishment of caregivers' basic needs. 12 The caregiver's surrender, coupled with the absence of leisure and confinement in the care environment, contributes to feelings of burden. 11 In relation to the presence of diseases, 30.7% of the caregivers reported the diagnosis of vascular diseases (P<0.001). Previous studies showed that caregivers reported diagnoses of hypertension DISCUSSION http://www.ufpe.br/revistaenfermagem/ (41.4%) and varicose veins (37.9%). 17,22 Furthermore, due to the time spent with care, caregivers reported reduced levels of regular physical activity and physical and psychological efforts, factors that can lead to an increased risk of cardiovascular changes. 6 Similarly to other studies, 11,14 42.5% of the caregivers reported working less formally or quitting the job. Caregivers of productive age feel forced to reduce the working day, leave the paid work, undergo resignation process or obstacles to promotion and progression, alteration of routines and functions of the job, to adapt to the role of caregiver. Those aspects thus generate lower incomes, stress or fatigue, especially when the patient's clinical situation requires full-time dedication. 7 The results revealed the association between the burden level and altered leisure and socialization (P< 0.001), fail to enjoy vacation (P<0.001) or receive guests (P<0.001). The social support and leisure are indispensable variables in the caregiver's life. The more the patient requires care, the more the caregiver tends to stay at home and, consequently, more distant from his/her family and social context, changing the opportunities of leisure and daily habits. Most caregivers were not part of groups and, even with advanced technological resources of communication such as internet, mobile phones, radios and TV, they do not fully meet the caregivers' leisure and socialization needs. 12,14 After starting the patient care, 59.8% of the caregivers reported some change in emotional state (P<0.001), 56.7% have body ache (P<0.001) and 63.78%, burnout or tiredness (P<0.001). Therefore, health-related negative effects, with emphasis on physical, psychosomatic diseases, anxiety, depression and stress, can emerge over time. Nevertheless, not all caregivers develop diseases or become dissatisfied with the care task. The complexity of the care task often affects caregivers, who forget their needs. In that way, there may arise positive and negative feelings, psychological conflicts, distress, fear and insecurity. Those are believed to be common along the care experience, being considered as burden symptoms due to the continuous care. 22,24,26 The mild to moderate depression level, assessed by the Beck Hopelessness Scale, was another condition that was associated (P<0.001) with increased burden among caregivers investigated. Anxiety and depression are highly related and comprise a process of psychological stress, commonly experienced by caregivers, and that directly influences their health status and increased burden. 16 The work demands of family caregivers can cause stress and depressive symptoms. Therefore, it is essential to identify those groups in order to implement interventions.
Concerning the accumulation of activities, lack of support from other family members and from health services, the caregiver prioritizes the dependent's care at the expense of his/her care, which can contribute to the onset of burden, as well as other negative outcomes. [11][12][13] In this sense, this research is relevant, since it broadens the knowledge and visibility of issues related to the caregivers of patients of HC public services. It is believed to produce implications in nursing assistance, redirecting the view of those professionals for the multidimensional phenomenon that involves the dependent patient, the caregiver and the family, so that assistance focuses on the development of strategies, actions and interventions that shall minimize the impact of the caregiver's burden.
This study had some limitations, such as the lack of studies evaluating the burden of caregivers of homebound patients, regardless of the clinical profile or age, once the studies focus, mainly, on the burden of caregivers for the elderly. Importantly, there were also sample losses.
The results revealed that the burden overload of caregivers of homebound patients is a common finding, and they are exposed to a set of internal and external factors that may contribute to the emergence of the problem.
The bivariate analysis showed that, among the demographic and clinical factors identified, those associated to the phenomenon under study were: informal caregivers; daily time as caregiver ≥ 17 hours; being patient's relative; mild to moderate depression level through Beck Hopelessness Scale; vascular disease; change in daily routine; altered leisure and socialization; burnout and tiredness; altered out-of-home routine; change in emotional state; body aches; fail to enjoy vacation or receive guests and leaving the job.
Early recognizing the factors that contribute to the increased caregiver's burden of homebound patients and adopting preventive measures certainly will reduce the likelihood of this problem, in addition to other adverse events.
Further studies on the subject should be developed, as well as investigations that allow establishing the best Nursing actions to prevent the problem, in particular, to caregivers of homebound patients from public services.