ABSTRACT

The purpose of this article is to highlight experiences of caring and being cared of and present the perspective of family caregivers about a Home Care Service. It is a case study that applies the cartography as ethos in the research field to capture experiences during home visits and the interviews with five caregivers. The empirical research analysis used Cutting Plans, of which Visibility Plans were applied as for reflexivity exercise. Otherness lived by caregivers and their responsibility overload are some expressions captured in the field of research that reveals the need to associate health services with social support services.

KEYWORDS
Home care services; Home nursing; Caregivers; Homemaker services

Introduction

The dependence of long-term care in the home environment and the dedication of caregivers to these dependents people have been studied by several researchers, that reveal the various difficulties associated with caring, an activity that is almost always exercised in a solitary way.

Research reveals that from 83.1% (GAIOLI; FUREGATO; SANTOS, 2012GAIOLI, C. C. L. O.; FUREGATO, A. R. F.; SANTOS, J. L. F. Perfil de Cuidadores de Idosos com Doença de Alzheimer Associado a Resiliência. Texto Contexto Enfermagem, Florianópolis, v. 21, n. 1, p. 150-157, jan./mar. 2012. Disponível em: <http://www.scielo.br/pdf/tce/v21n1/a17v21n1.pdf>. Acesso em: 31 out. 2016.
http://www.scielo.br/pdf/tce/v21n1/a17v2... ) to 93,4% of the caregivers are women (FELGAR, 2004FELGAR, J. A. S. Uma expressão da linguagem numérica. In: KARSCH, U. M. S. (Org.). Envelhecimento com dependência: revelando cuidadores. São Paulo: Educ, 2004, p. 47-85.). From the research of Karsch (2004)KARSCH, U. M. S. (Org.). Envelhecimento com dependência: revelando cuidadores. São Paulo: Educ, 2004., conducted in the early 1990s, there is the realization that caregivers are at home, caring for their dependents, with little or no guidance and, in their majority, they are alone in caring tasks.

According to Cruz (2010)CRUZ, D. C. M. et al. As vivências do cuidador informal do idoso dependente. Revista de Enfermagem Referência, Coimbra, série 3, n. 2, dez. 2010. Disponível em: <http://www.scielo.mec.pt/pdf/ref/vserIIIn2/serIIIn2a14.pdf>. Acesso em: 19 out. 2017.
http://www.scielo.mec.pt/pdf/ref/vserIII... , Muniz (2016)MUNIZ, E. A. et al. Grau de sobrecarga dos cuidadores de idosos atendidos em domicílio pela estratégia Saúde da Família. Saúde em Debate , Rio de Janeiro, v. 40, n. 110, p. 172-182, jul./set. 2016. Disponível em: <http://www.scielo.br/pdf/sdeb/v40n110/0103-1104-sdeb-40-110-0172.pdf>. Acesso em: 19 abr. 2017.
http://www.scielo.br/pdf/sdeb/v40n110/01... and Gutierrez, Fernandes and Mascarenhas (2017)GUTIERREZ, L. L. P.; FERNANDES, N. R. M.; MASCARENHAS, M. Caracterização de cuidadores de idosos da região metropolitana de Porto Alegre (RS): perfil do cuidado. Saúde em Debate, Rio de Janeiro, v. 41, n. 114, p. 885-898, jul./set. 2017. Disponível em: <http://docvirt.com/asp/acervo_cebes.asp?Bib=SAUDEDEBATE&PASTA=V.41%2C+N.114+-+jul.%2Fset.%2F2017&pesq=&x=26&y=16>. Acesso em: 19 out. 2017.
http://docvirt.com/asp/acervo_cebes.asp?... , among the difficulties listed by caregivers are family conflicts, societal demand, ignorance about pathologies that affect the patient and techniques inherent to care, lack of patient collaboration, lack of economic resources, among other setbacks raised in relation to the world of care.

Felgar (2004)FELGAR, J. A. S. Uma expressão da linguagem numérica. In: KARSCH, U. M. S. (Org.). Envelhecimento com dependência: revelando cuidadores. São Paulo: Educ, 2004, p. 47-85. revealed that 39.6% of the caregivers questioned in their research reported feelings of helplessness and related this feeling to the illness of the patient.

In much of the world, people are getting older and, even with the whole framework of information about the best way to maintain health for longer or the quality of life, the time comes when we need to be cared for by other people, who, in most cultures, are family or friends.

The caregiver assumes, therefore, responsibility for home care that would be performed by the health team if the sick person dependent on long-term care was hospitalized. Thus, home care as a care model enables the care to be performed in a known space, with affective meaning for the sick person and which minimally preserves some autonomy of the sick patient (LACERDA, 2010LACERDA, M. R. Cuidado domiciliar: em busca da autonomia do indivíduo e da família: na perspectiva da área pública. Ciência & Saúde Coletiva, Rio de Janeiro, v. 15, n. 5, p. 2621-2626, ago. 2010. Disponível em: <http://www.scielo.br/pdf/csc/v15n5/v15n5a36.pdf>. Acesso em: 9 ago. 2017.
http://www.scielo.br/pdf/csc/v15n5/v15n5... ).

For Agich (2008, P. 32-33, FREE TRANSLATION)AGICH, G. J. Dependência e autonomia na velhice: um modelo ético para o cuidado de longo prazo. São Paulo: Loyola; Centro Universitário São Camilo, 2008., autonomy is "irremediably dependent of the context". The author considers that to try to develop a definition of autonomy one must take as a starting point an ethical and practical analysis of long-term care, considering that autonomy is a significant cultural ideal. Autonomy is related to independence, which contrasts with long-term care, because the person who depends on this type of care feels vulnerable to this condition of dependence, "he is seen as a burden, as a less complete person" (AGICH, 2008AGICH, G. J. Dependência e autonomia na velhice: um modelo ético para o cuidado de longo prazo. São Paulo: Loyola; Centro Universitário São Camilo, 2008., P. 40, FREE TRANSLATION).

If we reflect about our human condition, we will realize how vulnerable we are, since we are often exposed to various types of danger: danger of becoming ill, being beaten, failing, dying. Living humanly means, therefore, living in vulnerability (ROSELLÓ, 2009ROSELLÓ, F. T. Antropologia do cuidar. Petrópolis: Vozes, 2009.). As one character from Guimarães Rosa (2001, P. 33, FREE TRANSLATION)ROSA, J. G. Grande Sertão: Veredas. 19. ed. Rio de Janeiro: Nova Fronteira, 2001. would say, in an anthological phrase of the book 'Grande Sertão Veredas': "living is very dangerous".

For Butler (2006)BUTLER, J. Vida precária: el poder del duelo y la violência. 2. ed. Buenos Aires: Paidós, 2006., vulnerability is a condition of our being in the world, it is an original vulnerability to the other. For Roselló (2009)ROSELLÓ, F. T. Antropologia do cuidar. Petrópolis: Vozes, 2009., vulnerability means fragility, precariousness and we experience it personally and collectively.

One possibility of health service organization that collaborates to preserve the autonomy of the person dependent on long-term care and experiences close to human vulnerability is home care.

In Brazil, home care has been part, since August 2011, of the Urgency and Emergency Network (RUE) under the heading 'Better at Home Program' and is currently regulated by Administrative Rule GM/MS nº 825 of April 25, 2016. In the referred program, home care is considered a

It is developed through the Home Care Service (SAD) and consists of Multidisciplinary Home Care Teams (Emad) and Multidisciplinary Support Teams (Emap). The program understands as

As criteria for admission to SAD, the sick person should be bedridden, need assistance at least once a week and have a responsible caregiver daily.

The Better at Home Program organizes home care at three levels: Home Care Type 1 (AD1) for low complexity chronic patients, who should be followed once a month by professionals from the basic units of the Basic Attention Network (RAB); AD2 for patients of medium complexity, requiring weekly follow-up of SAD; and AD3 for patients with greater complexity and needs, receiving SAD assistance more frequently (BRASIL, 2016_______. Ministério da Saúde. Portaria GM/MS nº 825 de 25 de abril de 2016. Redefine a Atenção Domiciliar no âmbito do Sistema Único de Saúde (SUS) e atualiza as equipes habilitadas. Diário Oficial [da] República Federativa do Brasil. Brasília, DF, 25 abr. 2016. Disponível em: <http://www.brasilsus.com.br/images/portarias/abril2016/dia26/portaria825.pdf>. Acesso em: 31 out. 2016.
http://www.brasilsus.com.br/images/porta... ).

The home visits carried out by the SAD intend to evaluate the degree of dependence of the patient and the capacity of the caregiver for the necessary care, preliminary conditions for admission to the program, as well as having as attribution to accompany the person dependent on long-term care until reaching discharge of the program for cure, hospitalization or death.

Professionals of the home care services find, often, people in vulnerable situations, who, many times, are unaware that they are being neglected or violated by others. They are people, most of them elderly, who live realities that demand actions of social service intervention and, sometimes, justice action to protect their fundamental human rights.

To meet the needs coming mainly from the elderly population, in developed countries, it can be seen, in addition to home health services (Home Care), the existence of social support services at home, which offer a range of services such as meals, cleaning, shopping delivery service, bath assistance; respite care, i.e., caregiver to cover the respite period of the main caregiver; nursing service; remote monitoring; among others (GENET, 2011GENET, N. et al. Home care in Europe: a systematic literature review. BMC Health Services Research, Londres, v. 11, n. 207, p. 1-14, 2011. Disponível em: <http://www.biomedcentral.com/1472-6963/11/207>. Acesso em: 30 out. 2013.
http://www.biomedcentral.com/1472-6963/1... ).

Another innovation in home and health services and social services was made in Japan and is based on a bank of hours system in which volunteers earn 'time credits' to care for older people in their community. Volunteers can use credits to buy similar services for themselves, later in life or present, for their frail elderly relatives living in another remote city, or for other people in need (HAYASHI, 2011HAYASHI, M. The care of older people in Japan: myths and realities of Family care. History and policy, Londres, jun. 2011. Disponível em: <http://www.historyandpolicy.org/policy-papers/papers/the-care-of-older-people-in-japan-myths-and-realities-of-family-care>. Acesso em: 26 out. 2016.
http://www.historyandpolicy.org/policy-p... ).

In this research, the aim was to understand the care process developed by an SAD of a medium-sized municipality in the state of São Paulo, in which the relations of SAD with the other RAS services were verified. More specifically, the relationships between the services that make up the RUE with hospitals, Emergency Care Units (UPA), Emergency Rooms and RAB were analyzed.

And, in addition to the issues of organization and planning of home care under the Unified Health System (SUS), it was highlighted, in the research, the encounter with the sick patients, users of SAD, as well as the experience of care taken by family-caregivers.

Therefore, the purpose of this article is to evidence experiences of caring and being cared for and presenting the vision of family caregivers about an SAD.

Methodological pathway

This research is a case study of a SAD of a medium-sized municipality in the state of São Paulo, with a population estimated for 2015 of 233.249 inhabitants and a territorial area of 1.136.907 km² (SEADE, 2017FUNDAÇÃO SISTEMA ESTADUAL DE ANÁLISES DE DADOS (SEADE). Perfil de municípios. São Paulo, 2017. Disponível em: <http://www.imp.seade.gov.br/frontend/#/perfil>. Acesso em: 19 abr. 2017.
http://www.imp.seade.gov.br/frontend/#/p... ). The name of the municipality was omitted to preserve the identity of the professionals involved in the research and the letter 'N' was adopted as a reference to the municipality.

The home care service in the municipality N began its activities in 1997 as a Home Hospitalization Program (PID). In mid-2002, it was renamed the Home Care Program (PAD) and, at the end of 2012, it was qualified as SAD of the 'Better at Home Program', with two Emad and one Emap enabled, dividing the municipal territory into two large regions.

In this qualitative study, a 'cartographic ethos' was adopted throughout the research route. In cartography, the data are produced from the observation of daily actions, the monitoring of work processes and the interpersonal relationships that are involved in the production of care. This relationship between the researcher or the cartographer and the subjects of the study produces, according to Melucci (2005, P. 329, FREE TRANSLATION)MELUCCI, A. Por uma sociologia Reflexiva: pesquisa qualitativa e cultura. Petrópolis: Vozes, 2005., "modifications in the field", which are interventions that "provoke cognitive transformations due to the circulation of ideas that it introduces".

This article reports scenes registered during home visits by the professionals of the SAD and transcriptions of recordings of the interviews with five caregivers of patients assisted by the service.

Field work occurred in the period from 1/15/2015 to 8/6/2015, once a week, eight hours a day, and the scenes experienced in the field were recorded in field diaries in the form of narratives, resulting in the empirical material of the study.

For the selection of the caregivers to be interviewed, spreadsheets were adopted to consolidate the information of all the patients served by the SAD, which includes the names of patients and caregivers, addresses and contact telephones. Caregivers were selected from ten patients with different pathologies and degrees of dependence and admitted to SAD for periods ranging from one month to five years. After telephone contact with caregivers of these patients, five caregivers agreed to grant an interview, which were scheduled at different days and times.

The interviews with the caregivers were carried out with the intention of knowing the vision about SAD and its experiences. In these interviews, the life experiences narrated by caregivers in the care process were valued, taking as reference three guidelines:

Each caregiver was asked to talk about how she had known about SAD; the waiting time to receive the first visit at home; the frequency of visits; the evaluation about the SAD; as well as suggestions for improving care. Also, it was considered important to know if the caregivers have some free time for rest and leisure and what the impacts of the activity on their lives.

At the end of the interviews, the experience of each caregiver illuminated aspects about home care considered very important to complement and enrich the observations in the accompaniment of the teams.

As a data analysis strategy, the first approximation was the definition of Cutting Plans, for a first systematization of the empirical material. In this sense, an extensive reading of the recorded scenes and the transcriptions of the interviews recordings was carried out.

As the field journals were read and the interview transcribed, certain Cutting Plans were defined, which corresponded to a large extent to the aspects present in the recommendations and guidelines of the Home Care Policy, having as guidelines the objectives proposed in the research.

From these options, four Cutting Plans resulted: (i) The frame of the municipal management and the limits of the management; (ii) Production of the team; (iii) The binomial patient-caregiver; and (iv) SAD in attention networks.

This reading movement, effectuated countless times, which cut scenes and speeches of the interviewees and placed them in 'boxes'' of the type file-folders, organized in the word processing program Word(r), corresponded to the Cutting Plans, resulting in the first analytical approximation of the empirical. Of the Cutting Plans presented in this article, it's interesting to deepen the 'binomial patient-caregiver'.

In the second analytical approach, more expressive Visibility Plans were evident within the Cutting Plans.

The Visibility Plans result from the analysis of registered scenes that have some relation to each other, and that, when connected, reveal important elements of the daily work of the team that are not always visible when 'looked at from the outside'. The 'Plans' gain visibility from 'scene connections' that show inter-human relationships and their intensities, which, at the end, result in health care or internal relationships with the staff or the family.

For the Cutting Plan 'The binomial patient-caregiver', the Visibility Plans were identified: (i) 'The universe of the loss of autonomy: the bedridden', presenting the encounter with human vulnerability and the reality of the loss of autonomy of people in bed; (ii) 'The universe of the caregiver', in which the experience of the people who care for others is seen; and (iii) 'The point of view of the caregiver', which presents the voice of caregivers of SAD users, making it possible to know what they think about this service and the health services network, as well as the impact of caregiving on their lives.

This research was approved by the Research Ethics Committee of the Federal University of São Paulo (Unifesp) under the number CAAE 39179014.0.0000.5505 and opinion nº 907.048 of 12/16/2014, in compliance with the requirements of Resolution nº 466/12 of the National Health Council. The participants of the research, when invited, were given a first explanation of the research procedures and, then, proceeded to the reading of the Informed Consent Form (ICF). After agreeing to participate, they signed two copies of the Form, remaining the first copy with the researcher and the second copy with the participant.

It is emphasized that the names used in describing the scenes for caregivers and patients are fictitious in order to preserve their identity.

Results and discussion

In the Visibility Plan (i) 'The universe of the loss of autonomy: the bedridden', different social and human realities are present facing the same problem - the disease, which requires long-term care. The registered scenes reveal the meeting of the SAD team with human vulnerability in some extreme situations experienced by people, mostly elderly people, dependent on long-term care caused by chronic and degenerative diseases.

The scenes chosen to compose this Visibility Plan are examples of several types of vulnerabilities perceived in the different contexts of illness.

In the case reported below, the patient has remained alone in her home, even needing help to make a dressing, among other demands. The SAD admitted her because a niece said she was her caregiver and the intention was to find this 'caregiver' to make her aware that the patient cannot remain alone, besides raising possibilities to solve this situation.

In the situation experienced, there is a clear neglect of care, solitude and financial exploitation, that is, ethical, social and cultural vulnerabilities.

Ethical vulnerability, from the philosophical point of view, refers to the moral duty to protect the most fragile and depreciable individual. In Lévinas's view quoted by Roselló (2009, P. 63, FREE TRANSLATION)ROSELLÓ, F. T. Antropologia do cuidar. Petrópolis: Vozes, 2009., "to suffer for another is to care for him, to support him, to be in his place, to consume yourself for him". Social vulnerability is characterized by isolation, lack of protection; in this case, the elderly was also economically exploited. Cultural vulnerability refers to ignorance and unawareness about a particular knowledge, in this case, the disease, its implications and care.

A possibility of response to better follow-up of the vulnerable population is the Family Health Strategy (FHS) model, which increases coverage in the brazilian municipalities, because these health units are closer to the population due to their care model (BRASIL, 2017______. Ministério da Saúde. Portaria nº 2.436, de 21 de setembro de 2017. Diário Oficial [da] República Federativa do Brasil. Brasília, DF, 21 set. 2017. Disponível em: <http://pesquisa.in.gov.br/imprensa/jsp/visualiza/index.jsp?jornal=1&pagina=68&data=22/09/2017>. Acesso em: 18 out. 2017.
http://pesquisa.in.gov.br/imprensa/jsp/v... ). Another possibility that collaborates to the reduction of vulnerabilities is the social awareness of the Statute of the Elderly, published in the form of Law nº 10.741 of 10/01/2003, which regulates the rights of persons aged 60 and over (BRASIL, 2003BRASIL. Lei nº 10.741 de 1 de outubro de 2003. Diário Oficial [da] República Federativa do Brasil. Brasília, DF, 1 out. 2003. Disponível em: <http://presrepublica.jusbrasil.com.br/legislacao/98301/estatuto-do-idoso-lei-10741-03>. Acesso em: 31 out. 2016.
http://presrepublica.jusbrasil.com.br/le... ). It is a protective legislation, which has been in application since its publication, although it is still far from being effective, because it needs greater dissemination in society and greater social mobilization to force necessary changes and investments in social transformation projects.

In the next scene, there is a 'cry for help' with a request for day-to-day nursing care at home.

As in so many other cases, the lack of support from the health sector overwhelms the family in relation to care. Many judicial proceedings occur due to family despair with the lack of effective support to caregivers, as there are no home social support services, such as those identified by Genet (2011)GENET, N. et al. Home care in Europe: a systematic literature review. BMC Health Services Research, Londres, v. 11, n. 207, p. 1-14, 2011. Disponível em: <http://www.biomedcentral.com/1472-6963/11/207>. Acesso em: 30 out. 2013.
http://www.biomedcentral.com/1472-6963/1... .

The possibility of other forms of home care, with tax-supported or voluntary caregivers, is an experience that has been used in a number of developed countries, such as Japan and England (HAYASHI, 2011HAYASHI, M. The care of older people in Japan: myths and realities of Family care. History and policy, Londres, jun. 2011. Disponível em: <http://www.historyandpolicy.org/policy-papers/papers/the-care-of-older-people-in-japan-myths-and-realities-of-family-care>. Acesso em: 26 out. 2016.
http://www.historyandpolicy.org/policy-p... ).

Here also arises the question of the arrangements organized by the population to achieve health care needs, such as the use of the complementary health system for physiotherapy and the physician of the Basic Health Unit (BHU) for other demands, configuring the 'care maps' of Cecílio, Carapinheiro and Andreazza (2014)CECÍLIO, L. C. O.; CARAPINHEIRO, G.; ANDREAZZA, R. (Org.). et al. O agir leigo e o cuidado em saúde: a produção de mapas de cuidado. São Paulo: Hucitec; Fapesp, 2014..

During that visit, the caregiver described the patient's irritation and suffering behavior with the disease situation, causing a feeling of impotence. One wonders what goes on in the head of a person who has been facing the evolution of a chronic disease for eight years.

The awareness of 'being sick', according to Caretta and Petrini (1998)CARETTA, F.; PETRINI, M. Accanto al malato: lineamenti di assistenza sanitária e pastorale. 4. ed. Roma: Città Nuova Editrice, 1998. , is happening according to the limitations that arise during the disease process, and this awareness is painful, not only physically, by the loss of functional capacities, since is accompanied by a complex and deep pain that arises from the growing awareness of his/her condition, as masterfully described by León Tosltói in one of his best known novels, 'The Death of Ivan Ilyitch', written in 1886, which was analyzed by Cecílio (2009)CECÍLIO, L. C. O. A morte de Ivan Ilitch, de Leon Tolstói: elementos para se pensar as múltiplas dimensões da gestão do cuidado. Interface, Botucatu, v. 13, supl. I, p. 545-555, 2009. Disponível em: <http://www.scielo.br/pdf/icse/v13s1/a07v13s1.pdf>. Acesso em: 9 ago. 2017.
http://www.scielo.br/pdf/icse/v13s1/a07v... .

It is the pain of a person who, at some point in life, must suspend their expectations in the future and face the reality of suffering, which is burdened by fear of disease and its evolution, fear for the future of the family, concern for the economic the family, in short, are many sufferings that need to be worked out internally by the patient. Each person, then, gives a meaning to their illness (CARETTA; PETRINI, 1998CARETTA, F.; PETRINI, M. Accanto al malato: lineamenti di assistenza sanitária e pastorale. 4. ed. Roma: Città Nuova Editrice, 1998. ).

Faced with the meanings that the sick person adopts for the disease, he/she uses certain behaviors as defense mechanisms to deal with it. According to Caretta and Petrini (1998)CARETTA, F.; PETRINI, M. Accanto al malato: lineamenti di assistenza sanitária e pastorale. 4. ed. Roma: Città Nuova Editrice, 1998. , they can be behaviors of denial of the disease; concealment; division, when you now agree with the fact, now disagree; projection, which attributes the disease to other things, such as remedies etc.; regression, infantilizing; complacency, which makes one become a victim; submission, which makes one become extremely obedient to medical conduct; rationalization, which allows us to adapt to reality; and depression. These behaviors may be attenuated by the improvement of the disease's condition until it disappears, when there is a cure.

In addition, for people who are close to death, the emotional state can vary progressively, alternating between fear and hope, states of denial of illness, anger, negotiation with doctors or family members, depression and acceptance (CARETTA; PETRINI, 1998CARETTA, F.; PETRINI, M. Accanto al malato: lineamenti di assistenza sanitária e pastorale. 4. ed. Roma: Città Nuova Editrice, 1998. ).

In the next scene, there is another way of facing the suffering of total dependence:

When this family was known, it was amazing the way the caregiver husband related to his wife. The caregiver communicated all the time with the patient, aphasic, making the connection with the doctor and the nursing staff with a joy that was contagious.

In the narrated situation, the relationship between the caregiver husband and the sick and completely dependent wife revealed the existence of an autonomy preserved in their human dignity and integrity, principles that are also part of autonomy, according to Agich (2008, P. 32, OUR EMPHASISAGICH, G. J. Dependência e autonomia na velhice: um modelo ético para o cuidado de longo prazo. São Paulo: Loyola; Centro Universitário São Camilo, 2008.):

In fact, disease, considering common sense, removes the freedom of the person, withdraws its autonomy, limits its achievements and, especially, when there is pain, leads to the perception of the fragility implicit in the human being. This experience naturally frightens us with the evolution of aging, but it is present throughout the course of life.

In this sense, looking at the experience of Ivo and Luíza, it is observed that the disease process is faced more lightly when the sick person feels accompanied and considered by a caregiver who expresses affection, respect and closeness, attitudes of both caregiver and of the patient when they accept suffering and face pain with a sense. And this posture can give them greater inner freedom.

According to Viktor Frankl (1999, P. 76, FREE TRANSLATION)FRANKL, V. E. Em busca de sentido: um psicólogo no campo de concentração. 10. ed. rev. São Leopoldo: Sinodal; Petrópolis: Vozes, 1999.:

The view of Frankl (1999)FRANKL, V. E. Em busca de sentido: um psicólogo no campo de concentração. 10. ed. rev. São Leopoldo: Sinodal; Petrópolis: Vozes, 1999. is shared, because it is quite concrete; the exigency of the moment to which it refers comes accompanied by a sense of existence that is singular for each person. Therefore, no destiny can be compared with another, it is not repeated, because each experience must give an answer.

Continuing with the thinking of Frankl (1999, P. 77, FREE TRANSLATION)FRANKL, V. E. Em busca de sentido: um psicólogo no campo de concentração. 10. ed. rev. São Leopoldo: Sinodal; Petrópolis: Vozes, 1999. to enter into the dynamic of the sense of suffering, which, sometimes, makes no sense to outsiders.

Even with this proposition in front of life, it is very important that there is social support that gives the necessary support in facing the most difficult moments.

In the Visibility Plan (ii) 'The universe of the caregiver', it was found that, in most families, care is taken by a woman - daughter, wife, mother, sister, niece -, often, alone in this activity, generating changes in various aspects of life. In this survey, 83% of caregivers are women.

In the two cases narrated above, care is performed by men, which is not common. Like other caregivers, they face some isolation or loneliness in relation to the tasks of care and seem to conform to the situation, as if it were a mission to be fulfilled.

Another aspect identified in one of the scenes is the reality that many older people are under the care of other elderly people, as seen in several other scenes. As in many other developed countries, our population is aging rapidly.

In this sense, it's mentioned the example of Japan, which, because of a large elderly population, came across a long-term care problem. The coverage of health services was provided by the health insurance system, but it did not meet all the demands of caregivers. Thus, they innovated with a care socialization system, creating a mutual aid network to supplement LTCI (Long Term Care Insurance) (HAYASHI, 2011HAYASHI, M. The care of older people in Japan: myths and realities of Family care. History and policy, Londres, jun. 2011. Disponível em: <http://www.historyandpolicy.org/policy-papers/papers/the-care-of-older-people-in-japan-myths-and-realities-of-family-care>. Acesso em: 26 out. 2016.
http://www.historyandpolicy.org/policy-p... ).

It is understood that reality will require the taking of new paths, with the adoption of models of innovative social support services that will serve the diverse conceptions of home care.

Here's another experience:

In the narrative above, the caregiver raises two aspects. The first is the inexplicable experience of suffering, which has altered the itinerary of personal and family life, which makes it recognize the vulnerability of the sick husband and give a metaphysical meaning to suffering, that is, seek in the faith in God the strength to support herself and support her patient.

The second aspect involves alterity, the interpersonal dimension, which places the center of life not in the Self, but in the Thou. Thus, the actions, the thoughts are out of the person, living the radical opening to the other. It indicates that "caring for someone is, therefore, not only to be physically with someone, but to be-with-him, in the most existential sense of the term" (ROSELLÓ, 2009ROSELLÓ, F. T. Antropologia do cuidar. Petrópolis: Vozes, 2009., P. 136, FREE TRANSLATION).

The experience of otherness as 'ethos' of care is part of an ideal care for every human being and is the expected attitude of a caregiver, health professionals and community precisely because it is implicit a singular, unique care.

But, when experiencing this encounter with the caregiver, it is also noted in her speech her solitude in the caring process, as well as in the narrated scenes of the encounter with other caregivers.

Again, this feeling of isolation shows up, a sense of being alone in the daily struggle, and precisely because of this, effective and real collaboration among the people of the community, such as volunteers, health professionals and family members is fundamental in this caring process.

It ends with the Visibility Plan (iii) - 'The point of view of the caregiver', in which the voice of the caregivers of the user patients of the SAD emerges through the interviews, enabling them to know what they think about the service and the service network the impact of caring on their lives.

Regarding the waiting time for home care, caregivers reported:

In the reports on the waiting time between the request and the first visit of the SAD, it is clear that the teams seek to make the appointments viable quickly. The division of the teams between the different professionals is emphasized, being more frequent the work of the nursing team with the doctor or the isolated action of the nursing team, as well as the physiotherapists, who frequently act in a secondary visit. Somehow, this way of operating indicates not a team work, but a work by specialty, and may result in an inadequate response to the health needs of the target population.

Another issue emerged in one of the statements relates to the composition of 'care maps', as proposed by Cecílio, Carapinheiro and Andreazza (2014)CECÍLIO, L. C. O.; CARAPINHEIRO, G.; ANDREAZZA, R. (Org.). et al. O agir leigo e o cuidado em saúde: a produção de mapas de cuidado. São Paulo: Hucitec; Fapesp, 2014., when there is the finding that the visit of a private doctor is economically unfeasible and the way to solve the problem is triggering the SAD, which is a SUS service.

Regarding the quality of care, caregivers have different opinions:

In the narrative, there are strong criticisms regarding the physiotherapy service and appreciation of the performance of nursing and medical teams. It seems that quality is evaluated by observing the technical commitment, interpersonal relationship, the use of appropriate materials and the supply of consumption materials, points that influence the conditions of care, clinical evolution of the patient and establishment of bonds.

The expenses with materials, diets and medications are high, a burden on the family budget, making it imperative to search for resources offered by the health system for free, as well as the need for creativity and the information of several professionals to meet the demands generated during the disease process.

Regarding the possibility of rest or leisure for the promotion of physical and mental health, caregivers emphasized their difficulties to leave home and take time to 'breathe'.

Final considerations

In the investigation, the experience of human vulnerability in different perspectives and the sense that each family gives to the suffering experienced by the relative dependent on long-term care emerged with great force.

The loneliness of the caregiver in care was evident, emphasizing the need to think about other services to support the caregiver, with different social arrangements, as well as the value that the caregiver group has as a space for intervention and monitoring of physical and mental health of the caregiver.

It was possible to 'listen' to what the caregivers think of SAD, bringing their compliments and criticism, emphasizing the need for the multiprofessional team to carry out more visits during the month to the same patient; work in an integrated way, mainly in evaluation visits; build an individualized plan of care and improve the training of health professionals working in this care space, which is the domicile.

The perception that the lay caregiver has of the inability or insufficiency of the professional forces him/her to look for other professionals who can solve the identified health needs, which confirms that the people compose their maps of care with public and private services using the creativity to solve the failures of the health system.

It was found people that, by neglecting care, could not take on the role of caregivers, especially the elderly caring for the elderly, incurring ethical, human and social problems to be managed by SAD. In these encounters with the caregivers, the dynamic and attentive performance of the SAD teams was observed, permeated by dialogue and guidance to caregivers and patients.

From the encounter with the caregivers, the worries persisted to reduce their work load and the solitude in the caring work.

It is necessary to make progress with home care through the creation of social support services aimed at serving the elderly population with some degree of dependence on chronic disease, in order to collaborate to maintain the autonomy of these dependency people, as well as the health of the caregiver.

References

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