MARIANO, Graziela Pereira. SANTOS, Irenilda Ângela dos. Informal caregiver: how are they seen by health professionals?. Revista Científica Multidisciplinar Núcleo do Conhecimento. Year 07, Ed. 01, Vol. 04, p. 224-253. January 2022. ISSN: 2448-0959, Access link:
Brazilian public health points to the need for changes, which, among other factors, depend on humanized care from the perspective of comprehensive health care for hospitalized patients and their caregivers. In health, it must be considered that the construction of the relationship between subjects (patient and caregiver) is a powerful instrument for this change to occur. This article has as general objective to identify the conception of the professionals of the Hospital Universitário Júlio Muller regarding the care with the health of the informal caregiver health professionals, and the respective actions (or care) offered by these professionals to the informal caregiver during the patient’s hospitalization period? As a methodology, qualitative analysis was used, through semi-structured interviews with health professionals who work in the medical clinic of the HUJM. It starts from the premise that the informal caregiver deserves to be considered as an integral member of the care process, in which their well-being and promotion are also taken into account, as well as the prevention of extreme situations requires, on the part of health professionals, particular attention, since the recovery of hospitalized patients also depends on them. However, from the analysis carried out at the HUJM, it was possible to verify that there is a lack of articulation between the hospital and the possibilities for the provision of caregiver services, which leads to the need to review structural issues and communication between the hospital staff, patients and caregivers.
Keywords: Comprehensive Care, Informal Caregiver, Humanization.
This article is part of the research “Training and Work in Social Work: challenges of intervention and research on social determinations in health, organization and struggle of users and workers to ensure the rights to health”, approved by the Ethics Committee, under the opinion No. 723,606, of undergraduate students in Social Work who performed an internship at the Júlio Muller University Hospital of the Federal University of Mato Grosso (HUJM/UFMT).
This study aims to know about the conception of health professionals from the medical clinic of the HUJM in relation to the care with the health of the informal caregiver during the hospitalization period. Caring is an ancient and universal practice, and when it comes to health care actions, there is an interest and concern with the treatment and recovery of another person at the place of study, leading to this objective from certain practices.
Currently, with the search for a more humanized society in the provision of health care, the role of the caregiver has become essential, as it contributes, together with other health care providers, to physical, psychological and emotional well-being of the patient (FIGUEIREDO; DIAS; OLIVEIRA, 2014).
In this sense, care goes beyond the biological dimension and should also receive attention to the caregiver’s personal health, considering that the purely technical professional activity implies the efficient organization of care. Thus, it is essential to provide infrastructure and support conditions so that family members and/or friends can effectively play the role of informal caregivers. It is necessary that, in addition to knowing the care needs of the dependent person, it is also necessary to know and value the situation of these families: their demands, values and sociocultural practices, not limited to their biological condition.
Knowing the profile of caregivers and their difficulties in the care process allows health professionals to plan, implement public policies and programs for social and family support, focused on the caregiver’s reality (ROCHA JÚNIOR et al., 2011).
In this perspective, the general objective of this article is to identify the conception of the professionals of the Hospital Universitário Júlio Muller regarding the care with the health of the informal caregiver. To achieve such success, we sought to answer the following problem question: what is the concept of health and illness, from the perspective of health professionals, and the respective actions (or care) offered by these professionals to the informal caregiver during the period of patient hospitalization?
It is believed that this study may contribute to reflection in the scope of management and care, expanding the debate on health policy in relation to informal caregivers. In order to do so, the qualitative approach was used, with an exploratory and descriptive character, in order to investigate the concept of health and disease from the perspective of professionals, to find out what actions (or care) the health professional offers to the caregiver in the period of hospitalization and to identify the opinion of the health professional in the HUJM regarding the caregiver’s need for the hospitalized patient.
2. THEORETICAL REFERENCE
The health reform movement was a milestone for the implementation of the Unified Health System (SUS), which laid the foundations of health policy, based on the assumption that its defense was a right for all and a duty of the State.
Therefore, health is access to education, leisure, culture, income, work, social assistance, sports, food, housing, among others, providing better living and working conditions for citizens. Based on this conception, the SUS was consolidated, from Law No. 8,080/1990, becoming a landmark for improvements and advances in the legal and institutional apparatus of Brazilian public health, based on the principles of universality, equity and integrality of the actions.
Among the main proposals of the sanitary reform, the expanded concept of health stands out, which broke with the biological paradigm of being just the absence of disease. In this sense, the humanization policy resumes the health reform agenda, as it points to the need to problematize the existing ways of doing in health practices, with the appreciation of everyday life and the concrete, without idealizing them, but making efficient both the relationship of SUS workers and users regarding the reorganization and expansion of the services offered. In the humanization policy, the theme of participation in health takes on new contours, expanding towards the protagonist and co-responsible inclusion of the subjects involved in the health production process. Thus, it is understood that care should be based on the exchange of knowledge and dialogue (including patients and their families), respecting and valuing the social needs, desires and interests of all (OLIVEIRA; CUTOLO, 2012) .
In 2003, the Ministry of Health created the National Humanization Policy (PNH), also called Humaniza SUS, with the practice of the Expanded Clinic as one of its guidelines, based on the construction of communication processes and bonds that allow giving passage to the interests, needs and desires of the subjects of this relationship. These guidelines are based on three principles: (i) the expansion of transversality with communicational openness of those who are assisted, together with the diverse knowledge that enables the ability to interfere between subjects and their subjectivities; (ii) the inseparability between management and care and (iii) the commitment to the autonomy of individual and collective subjects, both in the management (of health care services and practices) and in the co-responsibility of care (of the self and others) in the work processes.
In the field of health in Brazil, the changes are linked to the understanding of health defined by the Federal Constitution of 1988 (CF/88). This is due to the fact that the change in the relationships between health workers, patients and caregivers cannot be understood as a result of techniques alone, but also as a result of subjective issues that emerge from social, cultural and political issues. CF/88 established a new legal basis for health policy, defining it as a right of any citizen, therefore, a duty of the State, understanding that health corresponds to a broader statement than the absence of diseases.
Zeni and Cutolo (2011) define humanization as attitudes that respect the integrality of the subject, refusing to reduce it to the biological structure, considering less simplistic and fragmented actions. In these terms, it can be said that humanization is an interdisciplinary action, not associated with a specific moment of action, but that permeates all others in health.
In this way, the PNH becomes a reference for the construction of health practices that, in fact, are capable of producing new meanings among subjects, also serving as a tool for social mobilization, not only for denouncing and claiming rights, but also as a tool for social mobilization but of affirmation, which considers the differences and singularities in facing the challenges facing health.
Oliveira and Cutolo (2012) demonstrate the proximity between humanization and the principle of integrality, which goes far beyond a guideline, since humanization is characterized by behaviors developed in the relationship between subjects and ensures an integral approach. For Viegas and Penna (2013), it leads us to the interdisciplinarity of care, to seeing the individual as a whole, considering the service relationships between the different levels of care and the relationships in teamwork.
In this sense, Pinheiro and Mattos (2005, p. 256) conceive comprehensiveness as: “[…] an articulated set of preventive and curative health actions and services, individual and collective, in each case, at the levels of complexity of the system.” The authors also report that integrality is constituted as an act in health in the daily experiences of subjects in the services in health places and it is these experiences that produce changes in people’s lives, whose effective care practices go beyond the idealized models. Oliveira and Cutolo (2012) argue that integrality must be understood as a value to be sustained and defended by the practices of health professionals, based on the way they serve the users who seek them and guided by an expanded view of the subjects’ needs.
In relation to the necessary changes and transformations in the health area, regarding the creation of policies based on the understanding of the expanded concept of health, the need to strengthen the changes in the hegemonic care model, the importance of teamwork and of reflect on work processes, intersectoriality and interdisciplinarity, with essential conditions to implement such changes and attribute qualification in the sense of comprehensive care for people’s health (SILVA, 2013).
Therefore, it can be concluded that humanization is a consequence of the application of the principle of integrality, since humanized attitudes in health are only produced from an expanded conception of the health-disease process. All this leads us to realize that the great challenge lies in changing the way of seeing and thinking about health and illness.
As for health care, Feuerwerker and Cecílio (2007, p. 967) point out that “the care received by the patient in the hospital is the result of several partial care that complement each other from the interaction between the various health professionals”. In this regard, it is important to say that the change in seeing and thinking about health care must be supported by the processes of social production and reproduction, together with the subjective dimension, which also influences care.
The care process is carried out by professionals from different areas and covers various aspects of the physical and social condition of patients and informal caregivers, so care must be carried out by an interdisciplinary team of professionals and, whenever possible, involving family members and friends. (FIGUEIREDO; DIAS; OLIVEIRA, 2014).
The social service, from the perspective of comprehensive care, structures its work process together with interdisciplinary health teams, with an individual and collective approach, and plans its action from the perspective of law and the expansion of citizenship. (MOURÃO et al., 2006). However, the knowledge common to the different professions and the specific responsibility of each profession, when articulated, are useful to meet the needs of the subjects in a more humanized way, thus, the way in which the practices of health workers, caregivers are articulated and the patient receiving care increase or decrease the teamwork relationship.
The relationships between the user and the health professionals occur in different ways, “depending on the scenario, the degree of suffering, the clinical instability, the risk of death”, which make it difficult for users to achieve their autonomy and for workers to use their authority (FEUERWERKER, 2011, p. 1). These are, then, the bases for building accountability and solvability relationships between health workers and users, so that they can significantly interfere in the care and are able to offer conditions of benefits to the user.
The user is guided by several aspects: their knowledge, life history, values, religion, work, media, their possibilities, desires, difficulties, fantasies, fears, etc. Health professionals, depending on the way and approach they use, do not even consider these aspects, which, for the most part, are mentioned by users with the “complaint” and which are certainly fundamental for the evaluations, definitions, decisions and conduct to be taken (FEUERWERKER, 2011).
For Merhy (1998), when individuals seek health services, they expect to obtain a relationship of trust, with the certainty that their problem will be understood and that professionals will be committed to doing everything they can to defend their lives. On the other hand, health professionals expect to respond to the expectations of their patients, however, they do not always recognize their needs and the way in which they will align patients’ wishes with the applicability of the care technique.
Another very important aspect regarding users are their companions, especially when it comes to hospitalized users, because, according to the PNH (BRASIL, 2007, p. 3), “the companion is the representative of the person’s social network hospitalized, who accompanies her throughout her stay in health care environments.”
Some authors conceptualize the companion as a caregiver, Rafacho and Oliver (2010, p. 42), for example, define him as the “person who provides fundamental care to someone who has some kind of dependence, partially or completely.” Gonçalves (2007) states that the presence of a companion during hospitalization helps the hospitalized user to maintain social ties and, thus, contributes to their recovery.
With the family’s participation in health care, the author verifies two very important aspects: the patient, in the presence of a companion, feels a greater connection with his natural and family environment; on the other hand, the family, which has greater access to information about the patient’s health, the interventions carried out and the evolution of the health condition, can continue to care for him as if he were not hospitalized, which contributes to reducing anxiety and caregiver stress (FIGUEIREDO; DIAS; OLIVEIRA, 2014).
Taking care of a dependent person for a long period causes tension and stress due to increased responsibilities, economic overload, physical and emotional fatigue, in addition to the issue related to the adequacy of the caregiver’s routines and social relationships. In addition to this burden, the informal caregiver must have the emotional capacity to deal with the dependence of their loved one, adding the fact that, sometimes, this caregiver may also have health problems or, even, these are aggravated with the act of caring. Thus, those who care must take care of themselves to better care for the other, that is, we have to take care of those who care, equating the family in its dual role of supporter and supported (FIGUEIREDO; DIAS; OLIVEIRA, 2014).
When it comes to the term caregiver, it should be noted that there is still a difference between formal and informal caregivers. By formal caregiver, Oliveira, Queirós and Guerra (2007, p. 18) understand the “health professional who formally assumes the exercise of a profession, for which he chose of his own free will and for which he had academic and professional preparation”, and, as an informal caregiver, the “family member or friend who is asked to ensure most of the care that the patient requires when he returns to the family context.”
Pereira (2011) defines it not only as the person who provides care in the environment, but the family member, friend or neighbor who provides care to the user from the moment of hospitalization and who does not receive any remuneration for the work performed. For the author, this concept refers to the “main caregiver, (…) who provides most of the care and daily support to the sick person and who requires help for the development of activities of daily living” (PEREIRA, 2011, p. 37). Thus, the definition of informal caregiver appears in opposition to health professionals, who formally assume the exercise of the profession for which they had academic training.
Studies by Sanches et al. (2013, p. 69) about the companion in a public hospital point out that “integration into an environment that provides comfort, safety and affection, in addition to assistance, is therefore indispensable for the promotion and recovery of individual and collective health”. This environment, in almost all cases, requires the existence of discussions about how to expand the dynamics of care in the recovery of the patient’s health.
The caregiver has an important role of link between the health team and the person being cared for, performing necessary tasks, however, they need more than that, because, like the patient, the caregiver is a user of the health service and requires specific attention, including care.
Thus, it is necessary for the caregiver’s activities to be planned together with health professionals and family members, and information must be made clear to everyone about the actions that the caregiver can and should perform. It is good to write the routines and who is responsible for the tasks, as well as for the team to make it clear to the caregiver about which procedures he cannot, should not do and when it is necessary to call the health professionals. The actions will be planned and executed according to the needs of the person to be cared for, the knowledge and availability of the caregiver (BRASIL, 2008).
Pereira (2011) demonstrates, in his research, that informal caregivers have sleep disorders because they do not have a set time for rest and sleep inadequately. As a result, when caring for others, they fail to take care of themselves, being affected by weight loss problems, headaches and changes in marital and financial relationships.
The SUS advocates, as objectives, for the presence of informal caregivers, to seek humanized hospitalization and the inclusion of the family in the access to goods and services, having as a variable the theoretical-critical perspective of the health/disease process. Therefore, it is necessary that the entire team (users, workers and managers) be educated in this practice.
In practice, what is understood is that health services are constituted around the patient, and the caregiver has an unimportant position or is also designated as marginal. In this logic, caregivers are seen as resources and, consequently, the interventions of health professionals are oriented towards maintaining this role (PEREIRA, 2011).
The health team must, therefore, in the first instance, guide their interventions beyond physical and pathological capacities, encompassing the psychological issues of the caregiver and the hospitalized person, as well as the socioeconomic and housing condition, as no intervention will result in a benefit for the patient if the caregiver is not relevant and properly integrated into the care process.
The informal caregiver deserves to be considered as an integral part of the care process, considering their well-being and promotion, as well as the prevention of extreme situations, as a result, they require special attention from health professionals, since that the patients they care for depend on them (PEREIRA, 2011). Therefore, the caregiver also needs to be seen as a subject with rights, who needs to be cared for, maintaining a less austere and more positive relationship with the formal team, feeling free to clarify doubts and obtain information (BRASIL, 2011).
Thus, what is expected is the establishment of an alliance between professionals and caregivers, who, although some professionals already have qualifications and skills to promote support and autonomy to patients and caregivers, lack a theoretical framework that guides their practice.
3. METHODS AND TECHNIQUES
The study was carried out at the Júlio Muller University Hospital, located in the municipality of Cuiabá, state of Mato Grosso. It is a free public hospital that only serves users referred by the SUS. The care regimen is outpatient and inpatient, with four basic areas: Medical, Surgical, Gynecological/Obstetric and Pediatrics.
For this article, the professionals who work in the medical clinic were defined as collaborators, as this is a study that proposes to continue the research “The (in) visibility of the caregiver in health policy: a journey of these subjects at the Júlio Muller University Hospital” in Cuiabá-MT. The study population consisted of nurses, resident physicians, medical faculty and interns, nutritionists, psychologists and social workers.
The primary sources were characterized by the application of an interview with the 19 professionals who work in the medical clinic at the HUJM, of these, a total of 18 accepted to participate, being two nursing technicians, three heads of nurses, two nursing residents, two residents of nutrition, two psychology residents, two social work residents, a professor of medicine, two medical residents and two medical interns. At the time of the research, there were two heads of nursing per period in the medical clinic. Thus, it was decided to randomly select a head of nursing by period: morning, afternoon and night.
Considering the characteristics of the professionals working in that clinic, these are servers with different links: students, professors and administrative technicians. In addition, there are professionals hired through a public tender, assigned by the State Health Department, CLT workers and contract workers.
The interviews were conducted using a script and open questions, in the period between February and March 2016, after the pre-test and instrument adjustment. According to Minayo (2010, p. 157), the semi-structured interview provokes “[…] the various possible narratives of the experiences that the interviewer will evaluate; the interpretations that the interviewee gives about them and his vision about the social relations involved in this action”.
To ensure confidentiality, respondents were invited to participate in the research in the room of the nursing station in the medical clinic, under the precepts of ethics in research, regulated by Resolution No. Saúde, and in the text they are identified in decimal order. Authorized and signed, the interviews were recorded and then transcribed in full, being presented and analyzed in sequence. The difficulty faced in carrying out the interviews in the sector was due to the fact that medical professionals do not have time to carry out their application.
This research was based on the study with a descriptive approach and qualitative analysis, which, for Gil (2012, p. 27-28):
[…] o estudo descritivo tem por objetivo primordial a descrição das características de determinada população ou fenômeno ou o estabelecimento de relação entre variáveis, permitindo assim maior familiaridade com o objeto, com vista a torná-lo mais explícito, […] habitualmente envolvem levantamento bibliográfico e documental, entrevistas não padronizadas e estudos de casos.
With regard to qualitative analysis, Minayo (2010, p. 57) states that it is the study “[…] of history, relationships, representations, beliefs, perceptions and opinions, product of the interpretations that humans do about how they live, build their artifacts and themselves, feel and think.” Thus, qualitative analysis makes it possible to understand and visualize the social processes and the internal logic of a group, providing a basis for the construction of new approaches during the investigation.
3.1 CATEGORIZATION AND ANALYSIS OF DATA GATHERED
The following variables were used to categorize the participants in this study: gender; occupation area; link between the participant’s work activity and the hospital; if you have or are taking a postgraduate course; whether he took any training course at the hospital; the weekly workload and if you work in another institution besides the hospital. Data were organized and presented in Table 1 below.
Table 1 – Distribution of interview participants according to sociodemographic profile
|Occupation area||Social Worker||2||11,00|
|Link to work activity||Effective||9||50,00|
|Has a graduate degree||Yes||7||39,00|
|Conducted a training course at the hospital||Yes||8||44,00|
|Weekly working hours at the hospital||20 hours||1||6,00|
|Works at an institution other than the hospital||Yes||4||22,00|
Source: Direct / HUJM Interviews
The first observation made was the finding that the health-related professions express a process of feminization of the sector, because, according to Machado; Oliveira and Moyses (2010), the insertion of women in the health sector is increasing and represents 70% of the female workforce, however, not all health professions had a considerable number of women. Medicine, for example, until recently, was a mostly male profession, due to the late regularization of women’s right to exercise it, however, currently, this situation has changed.
As for the participants’ areas of activity, the groups are classified into: head of nursing; nursing technician; nutrition; psychology; medicine and social work, and all these professionals have direct contact with the patients’ informal caregivers. As for the employment relationship, nine professionals are permanent, six residents, two interns and one teacher. Among the participants, seven completed postgraduate studies, four did not take any extension courses and seven are currently doing so. Among those who did, five completed two postgraduate courses each, and most of these courses had as their theme the area of management or hospital administration.
Regarding the training courses offered and carried out within the HUJM, eight professionals participated and ten never attended. Those who have already participated mentioned that the hospital always offers this type of improvement activity, among the courses mentioned: Quality management; Patient care; Emergency cart; Use of materials and equipment; Medication and Nursing Care; Urgency and emergency; preceptorship; Assistance to victims of domestic violence and cardiopulmonary resuscitation.
Most work 40 hours a week, followed by those who work 36, 30 and 20 hours, respectively. Among the interviewees, four professionals work in other institutions and 14 only work at the HUJM.
3.1.1 CATEGORIZATION AND ANALYSIS OF THEORETICAL DATA
To organize the data for analysis, the model addressed by Minayo (2013), known as analytical categories, was considered. This type of investigation is carried out based on theoretical axes that guide the analysis from the mediation of the contextual portion of the contents, in the search to reveal the abstract conceptions contained in the interviewees’ discourse. In view of the data received, the researcher confronted the theories and assumptions about the theme and the reality found in the exploratory phase, questioning the preconceived ideas, in the search for the construction of reality as close as possible to the object of study.
In a second moment, a new reading was performed, this time respecting the classification subsets performed in the previous step. It is here that the interviews were divided into ‘units of meaning’ or ‘information topics’, which enabled the construction of meaning cores grouped by similarity and which formed the categories through their subjective connections. The last step was the final analysis, with the circular movement that is mobilized through the empirical and the theoretical, seeking riches between the particular and the general (MINAYO, 2013).
For this phase, the technique of dialectical hermeneutics was used. According to Minayo (2010), the hermeneutic approach is developed in the search for differences and similarities between the context of the authors and the researcher. Thus, the junction of hermeneutics and dialectics translates into an important tool in the articulation of qualitative research, since both have the aim of seeking to approach the truth of the object of study, while also complementing each other in differences, because, as far as where the first values mediation, the second values criticism.
Following this methodology, it was possible to compile the participants’ reports according to the variations of the study, namely: 1 – The opinion of the health professional: what is the concept of health and the importance of the caregiver; 2 – Knowledge of health professionals about practices that involve the routine of informal caregivers and 3 – Relationship between caregivers and health professionals in practice.
3.2 ANALYSIS AND RESULTS
3.2.1 THE HEALTH PROFESSIONAL’S OPINION: WHAT IS THE CONCEPT OF HEALTH AND THE IMPORTANCE OF THE CAREGIVER
The World Health Organization (WHO) defines health not only as the absence of disease, but as a state of perfect physical, mental and social well-being. For Assumpção, Morais and Foutoura (2002), health, previously reduced to the biological function of cause and effect, today must overcome this conception and give priority to the physical and mental state of well-being and pleasure.
In this sense, the participating health professionals have consonant opinions, demonstrating that they consider the subjectivity of patients as an integral part of the condition of staying healthy, as can be seen in some statements:
Saúde é um conceito estado de bem-estar, porém esse bem-estar envolve condições, físicas, psicológicas, psicobiológicas, sociais… é um conceito mais amplo de saúde de você estar bem, em relação a sua condição orgânica e em relação a sua condição social e psicológica. (2º entrevistado)
Eu entendo como saúde um conjunto de fatores né, que combinam com é…bem-estar do indivíduo não só falta de não ter doença mais com qualidade de vida. (11º entrevistado)
Kovács (2008) states that the situation of hospitalization of a loved one causes profound changes in family life, both in the sense of distancing the patient from living at home and from the people around them as well as from their routine activities, for example, in the transit of the patients family to the hospital, resulting in isolation, breaking of social, family and work relationships, emerging, at that moment, the figure that should be the focus of attention: the caregiver, that family member who is responsible for the care, who accompanies the patient during hospitalization and that assists in the treatment, being essential for the promotion, prevention of diseases or adaptation of the patient in this phase.
Within this context, it was asked about the importance of the presence of the companion/family caregiver in the hospitalized patient’s recovery process, and the emotional factor was the one that most appeared among the justifications of the interviewees in the emphasis on the caregiver’s relevance. This is in line with the studies by Gurley (1995), who states that family members offer emotional support and comfort to the patient, which makes the role of the caregiver even more relevant, which was corroborated by the reports of health professionals.
Pra mim é muito importante viu, porque tem paciente que fica aí sozinho a gente às vezes acha que recuperação dele é um pouco mais demorada assim, ter uma pessoa do lado. É muito chato você não ter ninguém pra conversar, você fica quanto tempo aqui internado, né! Tem paciente que fica dois três dias, semanas, meses então fica sozinhos (pausa), essa relação tem um pouco haver em o acompanhante estar do lado do paciente. (4º Entrevistado)
Ah, eu acho que muita, pois quando o paciente não sente a presença de um parente, de algum responsável por ele, o emocional dele fica muito abalado e o acompanhante ajuda muito, é visível, né! Tem casos que não, mas a maioria dos casos sim. (5º Entrevistado)
Tasks related to basic care, food, hygiene and mobility were also highlighted as performed by many caregivers, however, not everyone is prepared for this type of function. The fact that the caregiver has to learn and assimilate certain care with the patient, in the contact with health professionals, was also highlighted as of great importance, specifically in cases where this care will also be extended to the home environment. Thus, it is important that they follow the care routine, making the change from a hospital environment to a family environment less traumatic.
3.2.2 HEALTH PROFESSIONALS’ KNOWLEDGE ABOUT PRACTICES INVOLVING THE INFORMAL CAREGIVER’S ROUTINE
Medeiros; Gonçalves and Oliveira (2003) reiterate that it is essential that health units and the State offer infrastructure and support conditions so that family members can effectively play the role of informal caregivers. The authors emphasize that it is necessary to know the care needs of the dependent person, as well as the situation of their families: demands, beliefs, values and sociocultural practices.
Thus, the analysis questions that were sought to raise were whether they know the practices that involve the caregiver’s routine; what are the criteria established by the HUJM for the companion to be considered a caregiver; what are the routines of caregivers in the clinic; what are the rights offered to these caregivers; as is the position of caregivers regarding their rights and if there is any kind of care for caregivers in the hospital.
Regarding the criteria to be considered a companion in the unit, whether they are known or not by the health professionals interviewed, most responded that they did not know the details on this subject. However, they cited what they believe to be the general rule of Brazilian hospitals: companions are allowed for those under 18 years of age, over 60 years of age and for those who have some physical or mental limitation or, in accordance with what is established by the Brazilian Legislation, through the Statute of Children and Adolescents, of the Elderly Statute, as well as of Ordinance 1820, of 2009, of the Ministry of Health, which provides for the rights and duties of health users. Law No. 106/2009 deals with the criteria for family monitoring in hospital admission, thus, the health professional mentions that:
Sim, os critérios de acompanhante são menores de dezoito anos, maior de 60 anos, e em alguns casos é avaliado também o quadro do paciente. Pacientes portadores de necessidades especiais têm direito a acompanhantes, pacientes que são acamadas independentemente da idade também tem direito a acompanhante, e depende muita da clínica também do paciente, se o paciente ele tiver alguma patologia e necessita de um cuidado maior ele vai ter o direito a acompanhante. (2º Entrevistado)
However, three respondents claimed that these criteria do not exist and even those who know them partially said that they end up putting into practice what they consider reasonable, according to each case.
Não, porque aqui não tem critério a pessoa interna e são os parentes que vem ou conhecidos, não tem critério que eu saiba. (4º Entrevistado)
Exatamente aqui no hospital Júlio Muller, eu vou dizer pra você que eu não conheço, mas assim, em visão de outros hospitais, eu acredito que seja: não ser menor de idade e estar, eu acho que numa condição física pelo menos né o suficiente pra você auxiliar nesse cuidado com esse acompanhante e o critério médico mesmo, né, em a pessoa precisar de um acompanhante. (7º Entrevistado)
Regarding the routine of informal caregivers in the clinic being perceived by health professionals, although the interviewees did not know details of these routines, most mentioned that, in general, caregivers help with tasks necessary for the maintenance of the patient’s well-being, such as bathing or administering meals.
[…] o acompanhante ele participa de atividades do dia a dia né, auxilia em cuidado como banho aqui, mas, é mais no banho mesmo que eles auxiliam a questão da dieta também os acompanhantes auxiliam porque tem muito paciente que tem dificuldade de se alimentar, então o acompanhante que dá essa dieta, é que tem paciente que não consegue comer mesmo e o acompanhante que tem que pegar e dar boca tudo certinho, então é isso que eles fazem. (2º Entrevistado)
O acompanhante que fica todo tempo acompanhando. Eu não sei se tem alguma rotina estabelecida, eu sei que ele fica cuidando do paciente e que tem direito a essas refeições e tal, mas eu não sei se tem assim, alguma coisa determinada pra ele de rotina não. (13º Entrevistado)
Leal (2000) states that the informal caregiver is exposed to a series of stressful factors, which include the weight of daily tasks and the consequent illnesses arising from the demands of work. In this way, the deterioration of the caregiver’s health and nutrition status puts them at risk of developing diseases, reducing their ability to provide care, which worsens not only their quality of life, but also that of the recipient (SILVER; WELLMAN, 2002).
Asked about the rights of caregivers, one of the health professionals reiterated that caregivers have the right to know and follow the patient’s clinical history, but most respondents answered that they did not know the rights and four of them still refused to answer, also suggesting they were unaware.
Olha! Eu acredito que ele deve ter muitos, mas eu não tenho conhecimento de todos eles. Eu acredito que a gente na prática execute alguns, acho que outros deixam a desejar e muito (pausa), mas eu não conheço para dizer legislativamente o que ele tem direito, isso eu não sei. (5º Entrevistado).
Especificamente falando em uma normativa aqui no Júlio Muller não tenho o conhecimento de nenhum direito dele. (7º Entrevistado)
It was noticed that the majority of respondents do not know concretely what the rights of companions and caregivers are, but they are guided by what they believe to be in this perspective. Some even mentioned the breaches of these rights, especially with regard to meals, the lack of structure in the hospital and better conditions of stay or food.
A maioria deles desconhece, né. É bem comum eles chegarem aqui e acreditar que todos eles têm direito a refeição né, no caso, a gente sabe que todos eles têm direito de permanecer aqui, qualquer um que está internado tem direito a um acompanhante, mas dentro dos critérios a gente avalia a questão da liberação do almoço ou não. (8º Entrevistado)
It is worth noting that the opinion of the hospital’s Social Service professionals is that each and every companion has the right to receive meals. According to Ordinance No. 280/99 of the Ministry of Health, public hospitals contracted or associated with the Unified Health System – SUS – must provide the means to allow the presence of a companion for patients over 60 years of age. Some professionals believe that this right is extended to caregivers, based on the human right to food guaranteed as a guaranteed prerogative.
Karsch (2003) highlights that, in addition to assisting sick/hospitalized people, support for informal (lay) caregivers represents a new challenge for the Brazilian Health System. This corroborates the studies by Briceño-León R. et al. (2000) that health institutions, most of the time, are not structured to assist them, and the neglect and lack of planning of the institution can reflect on the care provided to the patient.
O que eu acho pior de tudo na clínica médica, os acompanhantes é que não tem onde eles repousarem né, nem onde dormir eles trazem um colchãozinho de casa, eles trazem cadeira de casa. Não sei como isso poderia ser resolvido já que a maioria não comportaria camas pra acompanhante. E isso provoca um desgaste com certeza muito grande porque a gente tem muitos pacientes crônicos que ficam meses aqui com o acompanhante. E às vezes a família só tem uma pessoa que possa acompanhar então essa pessoa fica meses dormindo numa cadeira […]. (19° Entrevistado)
On the questions regarding the support given by the hospital to the health of caregivers: “Is there any type of care?” “What happens when the caregiver gets sick?”, the consensus was that there is no medical care for the caregiver who gets sick during their activities, occurring only in cases of extreme urgency, such as chronic diseases, in which they are examined and instructed to seek treatment a health post, as the hospital does not have an emergency service. In these cases, the companion is replaced by another family member and, when there is no one to replace him/her, the patient remains without that help.
Então quando o acompanhante adoece a gente solicita que venha outro acompanhante para acompanhar. […], quando ele fica doente a gente solicita que venha um novo acompanhante né pra ficar cuidando desse paciente, mas aí a gente sabe que varia de família para família, tem família que tem essa disponibilidade de mandar outro acompanhante, mas tem família que não e só tem aquela pessoa e às vezes aquela pessoa acaba ficando doente mesmo […]. (2º entrevistado)
Carvalho Filho (2005) points out that several challenges are present in the daily life of the caregiver, such as the difficulty in dealing with the agitation and aggressiveness of the person being cared for, with constant walking, especially at night, caused by changes in sleep habits and rest, with forgetfulness, repetitiveness, stubbornness and constant requests, etc.
On an emotional and psychological level, the overload of these activities can be manifested by irritability, insomnia, mood swings, social isolation and increased intake of alcohol or other drugs by the caregiver, who experiences an increase in stress and anxiety, generating serious consequences in physical and emotional health (VERÍSSIMO; MOREIRA, 2004).
What can be seen in the notes of the professionals interviewed is that, often, the caregiver’s illness is a result of the wear and tear of the daily care of the patient they accompany, as can be seen in the following statement:
Então, esse é um fator (pausa) é uma implicação de doença do paciente, às vezes acarreta no cuidador né, às vezes a gente se depara com o cuidador tão sobrecarregado, tão cansado, tão estressado que ele acaba adoecendo junto com o paciente né. E quando é um caso de muito tempo de internação em que o paciente fica aqui por um bom período e só tem aquele cuidador, só aquela pessoa disponível para cuidar dele a gente vê uma doença psíquica nesse cuidador, e aí a gente no caso da minha profissão oferecemos o serviço tanto para a família quanto para o paciente, então a gente acaba acompanhando o familiar e o paciente ao mesmo tempo […]. (14º Entrevistado)
In addition to physical ailments, patients with mental health problems have a direct impact on the mental health of caregivers (FRIAS; TUOKKO; ROSENBERG, 2005). Thus, the caregiver is also prone to develop some mental illness, so there is also psychological support and reception from the social worker, which was mentioned by the respondents when asked about the care provided to caregivers, as can be seen in the following statement.
Quando o acompanhante adoece nós comunicamos à medicina, que é feito uma avaliação com o acompanhante no caso de saúde, como posso dizer: físico. Mas se a gente percebe uma demanda psicológica, psicossocial, a gente faz essa ponte com a equipe da psicologia e também com a equipe do serviço social. Já aconteceram casos em que houve problemas familiares, aí essa pessoa se abalou psicologicamente e não soube lidar com o que estava acontecendo lá fora e o que estava acontecendo aqui dentro, aí nesses casos a gente busca esse tipo de apoio, porque eu entendo que a adoecer aqui não é somente o adoecer físico, mas o psicológico é o que mais acontece. (1º Entrevistado)
3.2.3 RELATIONSHIP BETWEEN CAREGIVERS AND HEALTH PROFESSIONALS IN PRACTICE
Regarding the open visit and the right to a companion, made available by the Ministry of Health, in the PNH booklet, the companion is pointed out as an element of obstruction to professional work, an extra volume, a demand that needs to be controlled, thus, the need for professionals dedicated to this type of reception. In the dynamics of care, health services, given the hierarchy of actions, individualize the work in the services and do not empower the user so that he can change life and health conditions (VASCONCELOS, 2002).
In this way, some interview questions were aimed at evaluating the relationship between informal caregivers and health professionals at the HUJM, since the difficulties present in the interpersonal relationship between these figures make it difficult and negatively interfere in the routines of both. Thus, we sought to find out the interviewees’ understanding of the caregiver’s posture during the period of visits by professionals in bed, if the caregiver accesses the services provided by the hospital, if the companion or caregiver is taken into account in the treatment of the patient and if the health policies promote the humanization of care for the companion/caregiver in an integral way.
Regarding the fact that caregivers or companions often serve as facilitators for the patient’s adaptation to the hospital environment, it was mentioned:
Ele fica receoso, às vezes ele tem dúvidas e não tende a perguntar, mas assim, na medida do possível a gente tenta explicar tudo para o paciente e para o acompanhante da maneira mais simples que ele possa entender também. É muito importante que ele esteja a par do que está sendo feito aqui no hospital né, tem muito paciente que desiste do tratamento e vai embora porque não sabe o que está se passando. (10º Entrevistado)
The caregiver’s behavior tends to be linked to personal issues of acceptance of their role, which corroborates the opinion that, in the acquisition of the caregiver activity, the individual may manifest difficulties in performing, perceiving and adapting to their new role, which often results in uncertainty, unpreparedness, little knowledge and the need for more information, material and human resources, as well as the help of health professionals, which can justify this more withdrawn behavior when receiving the information that they receive are passed on (IMAGINARY, 2004).
Depende do acompanhante né, tem acompanhante que fica lá no canto dele. E geralmente a gente tem uma rotina na clínica médica e os residentes passam nos pacientes e conversam né, e aí é mais nesse momento, geralmente mais os residentes que acabam conversando com os acompanhantes e explicando tanto pro paciente tanto pro acompanhante a situação do paciente. Ah! O que ele vai fazer no dia, se ele vai fazer algum exame ou quantos dias de antibiótico que falta, tudo depende muito do perfil do acompanhante é que, tem gente tão humilde que só fala assim “Ah uhum” tem outros que não, já te contesta o tempo inteiro: “ah, mas porque isso? Por que aquilo? Por que essa injeção? Ah, mas não sei o que, cadê o exame que o doutor falou?”. Então é isso a postura deles em relação à gente né, e em relação ao médico. (19º Entrevistado)
Regarding the difficulties encountered in relation to the caregiver, the health professionals again mentioned the precarious conditions of the environment to welcome them, which generates stress and tension between the parties. Regarding the questioning about the existence of access of companions to hospital services, the difficulties in the stay, feeding and bathing of companions, all interviewees reiterate the lack of physical structure as the biggest obstacle to the exercise of these rights, which is in agreement with the PNH of the Ministry of Health, on the precariousness of institutions in welcoming companions (BRASIL, 2007).
[…] Nossa maior dificuldade é que o ambiente não possui preparo físico para acolher em uma enfermaria com cinco pacientes e cinco acompanhantes, né. Nós temos pacientes e na maioria deles são do interior, quando eles veem eles trazem bastante bagagens, malas e ficam naquele quarto apertado. Isso dentro da vigilância sanitária e das normas RDC, elas não são respeitadas quando acontece isso. Então eu sinto dificuldades, o hospital ele não tem o espaço intermediário onde a gente possa levar esses materiais e muita das vezes os municípios não fornecem casa de apoio então fica uma situação difícil para acomodar esse acompanhante. Acredito que uma cadeira de fio não é o suficiente para dar conforto para o acompanhante, se ele fica trinta, quarenta dias aqui começa a desenvolver um problema físico por estar sentado numa cadeira por muito tempo e dormir naquela cadeira. Então nesse sentido que eu acho que é a nossa maior dificuldade com o acompanhante […]. (1º entrevistado)
One of the factors that was evidenced as responsible for the increase in the level of stress between caregivers and health professionals was the interference of informal caregivers in the routine of patients who are not following up. It happens that the wards house several patients and, when trying to help an inpatient who is not the one they are accompanying, caregivers end up interfering with the routine activities of health professionals, since they are unaware of the specific needs of that patient.
[…] A gente faz dentro de enfermaria mesmo e às vezes a gente tem aquele acompanhante que quer ajudar a todos os outros pacientes, mas o paciente, a pessoa que ele está acompanhando é uma pessoa que está em precauções de contato. Ele é orientado de como proceder com esse paciente, mas aí ele quer ajudar o outro paciente e aí acaba que forra a cama do paciente do lado, a gente pede pra não fazer porque a equipe de enfermagem já faz isso, mas quando você vira as costas ele já foi lá e forrou a cama, já pegou no paciente sem luvas, já ajudou a levar no banheiro, então ele não chama a equipe, então a gente tem essas dificuldades. (2º Entrevistado)
Communication also proved to be inefficient, as it is possible to extract from the interviews that the participating professionals either do not like, or perceive that their co-workers do not like to be questioned by patients about their routine activities. This happens, in part, because they still see caregivers as people who are in disarray or who compromise their work and not as someone who is there to help, or also because of the overload of professionals, who do not see themselves with viable time to satisfactorily resolve the doubts of caregivers and patients, which negatively interferes in the construction of relationships (BRASIL, 2007).
E essa questão também da comunicação eu acho que tem que envolver o acompanhante no processo de cuidado o tempo todo e também olhar para ele né, não adianta só a gente cuidar do paciente sem considerar o familiar cuidador, seja quem for. Eu acho que é o maior empecilho. (14º Entrevistado)
Depende de como ele se porta, mas assim às vezes tem sim, principalmente com o pessoal da enfermagem que está mais direto lá na clínica. Eu já ouvi relatos e presenciei um pouco de resistência, às vezes o acompanhante tumultua um pouco, né? Às vezes, o acompanhante cobra demais. Então assim, pra equipe eu acho que se torna incômodo nesse sentido de achar que o acompanhante cobra demais, fica em cima demais, tumultua os serviços, mas acho que a dificuldade seria mais nesse sentido […]. (15º Entrevistado)
However, even with the observations on communication difficulties, health professionals evaluate their relationships with patients and caregivers as satisfactory:
A minha relação eu acredito que é boa, por isso eu falo do olhar que se tem e a importância que têm ele ali. Então eu respeito o paciente internado, quanto o acompanhante e quando eu estou falando diretamente com o paciente e se o acompanhante interrompe e vem trazer uma alguma coisa, eu escuto atentamente porque eu acho que tudo que eles vêm trazer é importante é… eu acredito que a relação é cordial e da melhor forma possível. (7º Entrevistado).
About the caregiver being taken into account in the patient’s treatment, according to Sanches et al. (2013), the companion came to be recognized as a facilitator of the patient’s health restoration and a catalyst for the rehabilitation process, being able to maintain affective and social bonds and ensure emotional support, due to the appreciation of the importance of having someone in the process of the dynamics of care.
In addition to evaluating this relationship positively, the professionals reiterated the importance of this good relationship with the companion in extracting information about the patient, which helps in their follow-up.
A gente sempre conversa com o paciente e com o acompanhante. O acompanhante também e fonte importante de informações durante a internação principalmente, inclusive alguns pacientes chegam a um estado confusional então quem vai mais dar informação para gente é o acompanhante e durante a evolução também, porque o acompanhante está com o paciente até mesmo antes da internação, então ele é fonte importante de dados pra gente vê o decorrer da evolução do paciente e na hora da internação também. (10º Entrevistado)
On the issue of welcoming the caregiver, what can be inferred is that there is no service that includes him from his arrival, in order to psychologically, physically or assistentially in the construction of welcoming care, based on an attitude of inclusion and bonds that allow giving way to the interests, needs and desires of the subjects of this relationship, that is, they are not considered as part of patient care, there is only help for those caregivers who already have difficulties during their follow-up, with the absence of preventive services of psychological or physical problems that may arise, with only the repair of those that have already arisen.
This strategy is in line with what is considered ideal by Briceño-León (2000), who emphasizes that there must be the integration of the multiple aspects that make up the health-disease process, both for the patient and the caregiver, in which prevention is considered and promotion along with curative care.
A prioridade é para o paciente e aí se o profissional observa a necessidade desse acompanhante ser atendido aí é essa maneira que ele começa a perceber, quando há conflito ou quando o acompanhante ele vai para casa e começa a trazer muito problema para esse paciente. Então também há intervenção desse estresse que ele causa a esse familiar, esse familiar pode entrar em choque com a equipe médica muitas vezes o familiar ele interfere ali na rotina então ele fica cuidando se o profissional está agindo corretamente “para que é esse remédio? Então ele começa a interferir muito e as vezes ele entra em conflito com a equipe então nesses casos também tem intervenção com relação ao familiar. (16º Entrevistado)
Asked whether health policies promote comprehensive humanized care for companions, most respondents answered no, since the services and support provided only partially meet the companions’ needs. Thus, many mentioned that, in practice, these policies are very far from the ideal established by health agencies and entities. These statements mainly discuss the lack of investment in the physical structure, in the development and provision of trained personnel, as well as in the availability of a management program that receives the companion as an integral part of patient care.
Em parte, sim. Em parte, porque é no hospital que tudo é feito para o paciente né, então muitas vezes quando é necessário que o acompanhante, precise ficar então ele tem certa adaptação a isso, tipo arruma uma cadeira, mas não tem aquele apoio que deveria ter para o acompanhante. Dependendo da clínica, por exemplo, aqui no hospital a pediatria tem um apoio maior para as mães, porque são crianças então é comum que as crianças fiquem acompanhadas dos pais ou responsáveis, então lá, eles têm uma estrutura melhor para receber esse acompanhante. Já nas outras clínicas nem tanto. (3º Entrevistado)
Failure to meet the general requirements that elevate patient and companion care to humanization parameters is considered a failure in the effectiveness of comprehensive care practices in services. Martins (2006) emphasizes that covering the needs of both the patient and the companion is essential for strengthening the humanization projects of health institutions, which are so in evidence today. The author also warns that, when we neglect some aspect, humanization ends up failing to take care of only the structural part of the buildings or the set of relationships present in the daily life of the services, without adding both care.
4. FINAL CONSIDERATIONS
The hospitalization or hospitalization of a loved one usually causes changes in family life, both in the patient’s routine and in those who are part of his life. In this scenario of adaptation and turmoil, roles are established that will reconfigure care activities, in which, generally, one of the family members (mostly female) is responsible for monitoring and supporting the patient in routine tasks. This reconfiguration of the routine, most of the time, results in work overload and can arouse several ambivalent feelings in the caregiver, which can also result in physical and psychological problems.
In view of the observed aspects, the particularities of the companion-caregiver must also be taken into account, as he is guided by his life story, his values, religion, work, possibilities, desires, difficulties, among others. Health workers must make this cut so that such approximation occurs, as these characteristics dictate the way in which the patient x professional x health caregiver relationship will develop.
In order to provide care, caregivers must be provided with information, education, incentives and security for the proper execution of their tasks, aiming to humanize care. In this way, the role of health professionals is essential to respond to these needs, because, when welcoming caregivers, they provide adaptation and the ability to deal with the situations that will be imposed on them by the illness situation, also considering meeting the needs of users of services.
The peculiarities of health work also come into play, as well as the variability of everyday situations, the mutability of work and activities and the degree of care production from the perspective of technical-scientific knowledge, which reflect on the intersubjective relationship of caregivers — workers — as well as the multiplicity of individual characteristics, which interfere in the construction of changes in the health service, distancing them from health care practices.
Therefore, the caregiver has an important role of link between the health team and the person being cared for, performing necessary tasks, however, more than that, in the same way as the patient, the caregiver is a user of the health service and also requires specific attention, defining it as an integral part, including care, not to mention the difficulties within the hospital itself, which was extensively described in this study, maintaining access to health goods and services according to infrastructure needs and the various clinical situations.
In this way, the interventions of the health team must use the strategy beyond the disease, contributing, consequently, so that the period of hospitalization and the subsequent return to the home are carried out in the most pleasant way possible, strengthening the bonds between patient and caregiver, seeing, in the latter, an ally for the reestablishment of the patient, through the humanization of care with attitudes that respect the integrality of the subject, the materialization of comprehensive care between different knowledge, as well as diverse needs.
The demand for care with caregivers must also be prioritized by management, precisely because of the complexity that defines it, in order to achieve efficiency in the provision of care. It is important to expand the exchange of knowledge, with practices that favor the cooperation of relationships within the health units, understanding and problematizing the logics of the management processes, analyzing the results of what is being done, in an attempt to produce new meanings, expanding what the management has as positive and discarding the points considered negative.
It must be recognized that there is no chain of care without the articulation of the hospital health unit with other sectors and people responsible for the expansion and diversification of this offer. It is essential to maintain the understanding of interdisciplinary care, for continuity of differentiated care, the use of good health practices, as well as humanized, preventive care, which consists of the execution, formulation and execution of health policies aimed at reducing the risks of diseases and other injuries to the patient. This ranges from differences in living and health conditions as well as therapeutic activity not reduced to biological, psychological and social dimensions.
Specifically in the HUJM, for this to occur, some aspects must be prioritized, both from the point of view of investment in the physical structure and in the improvement of communication between patients and caregivers x health professionals.
This study does not intend to exhaust the themes that encompass the issue of care for caregivers, nor to present concrete solutions to the gaps in the qualification of care that may have arisen in the care of that hospital, but rather aims to contribute to the improvement of aspects raised here through research, serving as support for other studies that will seek to improve hospital care.
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 Graduated in Social Work.
 PhD in Sustainable Development from the University of Brasília.
Sent: July, 2021.
Approved: January, 2022.