Hudson Pires de Oliveira Santos Junior 1, Dulce Maria Rosa Gualda 1, Maria de Fátima de Araújo Silveira 2.
1 Universidade de São Paulo, SP, Brasil; 2 Universidade Estadual da Paraíba, PB, Brasil.
Abstract. Psychiatric Reform is an issue which is discussed internationally. Its greatest challenge is to rethink means for caring people suffering from psychic disorders. In view of this, this study set out to anaylze and discuss the process of residential life for people discharged from a psychiatric hospital. This is a qualitative study that took place in the mental health network of the town of Campina Grande, Paraíba, Brazil and in which three professionals and seven residents of a mixed half-way house took part. The methods used to collect data were systematic observation, interview and recording in a field diary. Analysis of the data indicates that the dynamics of these residents living together is like that of a family, in which there are relationships of affection, caring, protection, and even of conflict. The facility has been a suitable location for (re) establishing affective bonds, in which its residents take on roles that can be associated with structuring kinship in addition to which the universal taboo of incest is reproduced, as described by Levi-Strauss. It was concluded that this reconstitution of an affective and family environment can become an indispensable resource for living together so as to cope with psychological distress and social reintegration.
Keywords: Community Mental Health Services; Assisted living facilities; Deinstitutionalization
Resumo. A Reforma Psiquiátrica é um tema de discussão internacional, cujo maior desafio é repensar meios para cuidar/tratar das pessoas em sofrimento psíquico. Diante disso, este estudo objetivou analisar e discutir o processo de moradia para egressos de um hospital psiquiátrico. Trata-se de uma pesquisa qualitativa, que ocorreu na rede de saúde mental do município de Campina Grande, Brasil, com a participação de três profissionais e sete moradores de uma residência terapêutica mista. Os métodos adotados para analise dos dados foram a observação sistemática, entrevista e registro em diário de campo. A análise dos dados indica que a dinâmica de convivência dos moradores se assemelha a uma família, onde há relações de afeto, de cuidados, de proteção e até de conflito. A casa tem sido um espaço propício para o (re) estabelecimento de vínculos afetivos, onde seus moradores assumem papéis que podem ser associados à estruturação de parentesco, bem como é reproduzido o tabu universal do incesto, descrito por Lèvi-Strauss. Conclui-se que a reconstituição de um ambiente afetivo e familiar pode vir a se tornar um recurso indispensável de vivência para o enfrentamento do sofrimento psíquico e a reinserção social.
Palavras-chave: serviços comunitários de saúde mental; moradias assistidas; desinstitucionalização
Introduction
Given that the World Health Organization (WHO) will use the Psychiatric Reform Program in Brazil as an international model for mental health - this decision being part of the Mental Health Gap Action Program (mhGap) – and as a global strategy that aims to improve access to treatment for mental and neurological disorders and those related to the harmful use of drugs(1). So, this article is a contribution to reflection on the process of housing for discharged from psychiatric hospital.
The problematic of housing presents itself in force (and full of challenges), especially for the subjects who were hospitalized for long periods in psychiatric hospitals and bear the sequels of this confinement(2). The setting up of Assisted Living Facilities has been occurring for some years, under various modalities according to different cultures and realities that guide public health policies in countries.
In Brazil, the Half-Way Houses began to emerge as from 1990, through initiatives of the towns and cities of Campinas (SP), Ribeirao Preto (SP), Santos (SP), Rio de Janeiro (RJ) and Porto Alegre (RS), which demonstrated the feasibility of creating residential facilities in the process of reintegrating those discharged from psychiatric institutions into the community. These experiences generated significant funds that have made it feasible to incorporate such facilities as a health policy of the Unified Health System, being put into effect through Ordinance 106/2000, and later deemed the Half-Way House Service(3).
Many of those discharged from psychiatric institutions live in half-way houses, alternative forms of housing and facilities due to the difficulty of family and social reintegration(4). In this context, our challenge in this article is to analyze and discuss the process of residential life for people discharged from a psychiatric hospital who have been living in a half-way house.
Methodology
This article is part of a large study named “Practices of cares produced by the service of half-way houses”. This was an exploratory and descriptive research study of qualitative approach. One of the arguments to support the use of qualitative research is that it has a special approach to the study of small groups, as it sets out to understand the context in which the phenomenon occurs, besides allowing various elements within it to be observed(5) and is, therefore, suitable for analyzing the process of living in the Assisted Living Facility.
The study was conducted in the Mixed Half-Way House located in the city of Campina Grande (which has a population of about 370,000 inhabitants) - in the interior of the state of Paraíba, Brazil. This town has been experimenting with and implementing measures to de-institutionalize people who have been long-stay patients in psychiatric hospitals
As collaborators in the investigation there were 07 residents of the Mixed Half-Way House and 03 professionals who work/circulate in this facility, and they form the sample of adults of both sexes, who met the following criteria for inclusion: a) residents: living in the Mixed Half-Way House, due to the process of deinstitutionalizing the hospital in which they were resident patients; displaying they had preserved the ability to communicate and their mental condition was such that they could understand questions and give answers b) professionals: working in the mental health network and supporting the Half-Way House and who worked in the psychiatric hospital from which the residents of the facility had been discharged. The criteria that both groups hold in common relate to their being of legal age and their voluntary participation being recorded by their having signed the Form of Free and Enlightened Consent.
Data collection took place from April to October 2008. The methods used to collect data were: systematic observation, interview and recording in a field diary.
Systematic observation was undertaken during the entire period of field-work with a script guided by goals for the capture of interpersonal relationships that have been established in the Facility. This observation guided how the interview script was applied.
For this article, the design is a qualitative secondary analysis of data collected in a larger study. This secondary analysis was a retrospective interpretation(6); an approach involving engagement with the data beyond the self-evident - including both the assumed knowledge and what has already been established - to see what else might be there. This was particularly relevant since data about "dynamic relationship" had captured the research team's attention in the primary study, but had not been fully examined. Thus, question such as: “What else in the "dynamic relationship" data set can emerge?” and "What might this mean?" guided the researchers through this secondary analyze.
The result of the analysis of the statements allowed two analytical categories to be identified, with their respective themes:
1) Half-Way House – new horizons for those discharged from long-stay psychiatric hospitalization: progressive social inclusion; experience of Sexuality; structure of the family.
2) New horizons – new ways of being and faring in society: routine life in the house; family organization of the residents
The identification of participants in the statements recorded is shown as follows: "P" for professional, "R" for resident and "n0" identifies the order in which the interviews were held.
The furtherance of the study followed the standards of the Declaration of Helsinki of 1964, as amended in 2002, of the World Medical Association, and the guidelines issued by Resolution 196/96 of the National Health Council of Brazil. The research project was submitted to the Research Ethics Committee of the State University of Paraíba, and was only made operational after approval by this body (Protocol CEP/UEPB Nº 0203.0.133.000-07).
Results
In order to understand the results better, the presentation of the profile of the collaborators is given: a) The three professionals: work in the mixed half-way house team, and consist of a coordinator and two caregivers. Regarding their profile, only the coordinator has training in mental health and everyone has had experience of working with those with psychic orders before working in the facility. B) The seven residents: three males and four females, all are 49-59 years old and single. As to their level of schooling, four are illiterate and the other three only know how to sign their names. Five residents receive the financial allowance from the Coming Back Home Program, the other two have no financial income and are maintained from town hall funding. Regarding religion, only Catholicism was cited.
Half-Way House – new horizons for those discharged after long-stay psychiatric hospitalizations
The discharge of someone from a psychiatric hospital and their going to a half-way house is the beginning of a long process of rehabilitation, which aims to seek the resident’s progressive social inclusion and his/her personal emancipation; after all, its main purpose is as a place to stay in; living in a town and experiencing life in it, while taking into consideration that the Facilities are centered on the humanist model.
It can be said the beginning of the process in the Facility is complex. First, this is due to the residents’ state having been made chronic, caused by the process of segregation in a psychiatric institution; secondly, because of the community’s resistance to accepting that ordinary homes in the neighborhoods were being rented to serve as a place to stay for "nut-cases" just out of the asylum, culminating in some movements such as petitions; thirdly, because of the insecurity that professionals themselves have about being in the lead of such a daring proposal as half-way houses.
This last factor was even more evident when the proposal emerged to set up a facility where men and women live, this being called a mixed half-way house, which made the technical team insecure because of the question of the residents’ sexual preferences and behaviors and being fearful of the possible consequences of such living together. After all, such professionals had been influenced by the imaginary of the total institution (asylums, prisons and convents)(7), in which the inmates should be segregated by gender, thus preventing a possible relationship between couples.
Look! I tell you that when this proposal was put forward: let’s open up new houses, amongst which there will be a mixed one, I was thrown off-balance. Goodness and what might happen? Great Heavens above! A mixed one? How will we get on together? Men and women? Do you really think it can work out? All in all, this normal thing of insecurity, fear even, and then again what will everyday routines be like? But incredible as it may seem, it is the best house we’ve got. (P1)
I thought they'd be grabbing at each other all the time, because it was like that in the hospital. There have always been more daring ones that took advantage to have sex with the quietest. I had to remain monitoring all the time. Here, I couldn’t believe it when I saw it. In the early days until the team started working on these issues. But until now no such problem. They respect each other as if it really was family. (P3)
Despite the uncertainty, the house was set up, and, instead of there occurring what most feared: the residents having sex all the time, all over the house, with no rules - because it is imagined the “nut-case” is an individual who has no control over their sexual desire, the facts did not occur as forecast. The residents did not establish one-to-one relationships, did not arouse nor exhibit any kind of relationship that was not one of friendship, trust and the mutual respect necessary for harmonious living in a group.
When I saw that gang, I thought it was going to be more difficult, but when they moved on to living together in the way they do, they mesh. This has to be taken into account, but we realize that there is something greater, that is there is friendship between them, it is as if it were a family. (P2)
I like the folks who live here with me, I feel safe, huh? I look after them, we talk to each other, watch television, listen to music on the radio of R3 [one of the residents]. It is very good here! (R6)
Such facts gained meaning during the period of observation, in which we noted that the dynamic relationship of these subjects is similar to a family structure, where relations of affect are present, as are those of caring for each other, of being protective and even of entering into conflict, which is common in any home. Furthermore, it was possible to observe that the residents do not have any romantic/sexual relationships. Instead, they seem to reproduce the universal taboo of incest, which is the condemnation of this type of relationship between relatives.
I don’t want that, no way! God forbid, I don’t date anyone in this house, of course not. (R4)
Here at home there´s no way I can date anyone. I only date if I get to know someone elsewhere. I dated at a party I went to. (R9)
It's funny, because when someone comes to visit they always ask the same question to residents: do you date someone here in the home? What makes it funny is because they respond angrily, as if they had been offended. It’s to do with respect, being de facto of a family. (P2)
The statements show the residents’ aversion to establishing romantic relationships with each other. However, this does not stop them from liking and dating other people, a fact noted in their statements and in those of the professionals:
In this House itself, they don’t have relations. But M4 has a boyfriend, she’s dating D. from another House, it began in the Emergency Unit; and M7 is dating G., now... between them here, no. They just don’t please each other that much, [laughs]. (R3)
I have D. [the user of another Half-Way House], that fat guy, take a squiffy [look] here at the wedding band. I’m dating him. A squiff [look], I’m going to get married! (R4)
There's a woman there that I flirt with at the fair. She sells fruit. I think she´s very beautiful. Sometimes, I take a present to her. (R8)
Sexuality is also expressed through the need for late-night outings by men - the going to nightclubs where they can get to know and have relations with women, by paying for sex. Another expression of sexuality is homosexual experience.
Some users go on late night outings. Not all, but some do. A late night outing is contact with women, then again it’s not all of them who know how to deal with this and they ask, ask for this. We provide condoms, that kind of thing! (P1)
Here I’ve never dated, I have no interest. But at the hospital I used to date a woman. Woman with woman. (R7)
Do you know something? I like men more than women, but I don’t like to say this to the whole world. (R10)
Despite the statements being a constant reality in social relations, yet this is about a theme that is marginalized, one that is rarely accepted by society and difficult to discuss, due to resistance in talking about the subject.
New horizons – new forms of being and faring in society
Regarding everyday routines in the House, we can describe how the residents take on different roles, and point to representations of gender in household maintenance activities. This fact reinforces the concept of family relationships of Lévi-Strauss(8) on the actions given solely to men in public space, while the culture of some societies sets aside the responsibility for private space to women. This division of activities is essential for showing evidence of the points of action by gender, but this does not mean this is exclusive, nor does it imply prohibition. Therefore, men and women may, at any time, take on the same task.
When needed, I will buy things in the corner shop, it’s not very far away. On Sunday, we always buy soft drinks to have with lunch. (R6)
I wash the bathroom thoroughly and I bake cakes, make lasagna, do everything. I wash the dishes and hang the clothes to dry. (R7)
In the Mixed House, the men are more responsible for looking after the environment outside the house and in providing supplies that they run short of daily. Thus, they maintain the sexual division of labor, because their activities are outside the home, even if this means working in the garden or backyard. Women take on the responsibility for taking care of tasks like cooking, washing and ironing. However, the researchers witnessed some of the men washing dishes after meals. It can be stated that the organization of the house has been seeing to it that they all assume the everyday and social activities needed for life in a community.
This division is stamped into the agreement that guides the organization and distribution of tasks in everyday living in the Facility, as it is more socially fair that everyone contributes to the activities. Thus, social reintegration also aims to rebuild relationships based on other ethics. The researchers recorded what happens as it happens, possibly, the "family" organization of the residents of the Facility. For this, a genogram was drawn up.
In this study, the genogram is to illustrate how the residents of the Facility are linked to each other, for there is no biological factor; it was designed to demonstrate the relationship of leadership, trust and dependency between them: in the first instance there is M6, who is considered by other residents as the "father" of the house, and is so called by them all. He has the power of final decision. It is to him, above all, that the professionals (P1-P3) go to discuss the daily affairs of the house. The other residents are presented on a horizontal scale, the sequence of which, from left to right, was organized according to the level of dependency, both socially and in terms of care; the most independent resident being M8, and M5 the one that needs constant attention (Figure 1).
Figure 1. Representation the “family” organization of the residents of the house
This interpersonal relationship can be portrayed through the statement:
They’ve been together for more than 2 years. So, they are so much more used to each other. Every day, it is already part, it forms part like a family, but of what really is a family for some of them. When one knows how to do something, he/she helps the other who still does not know. (P2)
Father [R6] is the who decides things for us. He's good. He helps to do things all the time, helps with money to buy food because I do not know how to work out the small change. (R5)
However, this was not always so. At the time that the half-way house was inaugurated, the professionals had a reductionist vision of those discharged from the hospital. This was one more step forward, breaking away from the biomedical, technical and stigmatizing vision and being open to new visions of the holistic and psycho-social approach.
So I say to you that prior to this, I regarded the insane person in a very reduced, small way. Now, today from the moment I have been living with them more. I really see them as human beings. Not before, I looked at them as if it were any old thing. A person who had no desire, who did not have a greater significance and today, I realize that I was wrong. (P3)
Look, the change in them when they lived in the hospital and now, living here in the residence, is 100%. I didn’t believe that they would manage to advance so much, but therewe have it, it is already a fact. (P2)
Discussion
The creation and operation of such of the half-way houses have been widely discussed in the country. However, there are few published studies which report on and assesses both the scope and possibilities of these residences, as much as the challenges faced day-to-day in their maintenance(2,9-10).
A study conducted in the Facilities in Campinas-SP showed that four years after implementation, the residents of the facilities had not yet reached a satisfactory insertion into the community(9). However, it must be emphasized that four years is a short period to evaluate integration into the community, since many residents of the facilities spent many years segregated, leading to loss of confidence in the bonds of belonging to the community and to a common form of sociability.
Research conducted with people living in the vicinity of the half-way houses claims that the service is conceive as a storehouse of sick people, an asylum for the old, a rest home for people with problems. The factor of illness was indicated as being responsible for the impossibility of having a social life together, as a "disability" resulting in the isolation of these subjects. The social work character of the facilities is reiterated in many statements(11). This result serves as a warning of the great challenges that still need to be faced in the process of making this proposal concrete.
Besides all the challenges already made explicit, in a mixed half-way house, there is another one: the sexual question of men and women. Not only because they live in the same house, but because this was one of the most repressed human dimensions under the asylum model. Tackling sexuality still makes the team take fright, as they are not trained for this. This gap is beginning to take shape in undergraduate courses and moves on in "continued training" or its substitute "continuing education".
The obvious prejudice about the sexuality of those suffering from mental disorders is part of a social masking or a greater denial and outside the scope of rights. Such denial reproduced in the institutional and professional context represents only a fragment of society’s thinking(12). For Foucault(13), sexuality is about a historical power device, because it normalizes the individual’s life and, consequently, of the entire social body.
In this sense, in the psychiatric institution, the body image of the internee is stripped of beauty and physical vigor. Thus, the denial of the sexuality of the mentally-ill person coalesces with the notion of deviation, as it is indicative of stigma, which marks the subject; it accuses, censures and condemns, and is commonly recognized, as capable of self- and/or hetero-aggression. In order to prevent this, control was/is achieved through banning and prohibiting it: by separating the internees into male and female wards, and with the care provided falling to professionals of the same gender of each specific ward, practices, which, sometimes, is also fertile ground for the experience of homosexuality "induced" by the circumstances.
Due to this fact, it is affirmed, generally speaking, that homosexuality is not perceived as a specific structure of those suffering from mental disorders, but as a set of practices linked to the situation, to the separation between the sexes and to inhibition of an institutional origin(12,14).
Giame(14), basing himself on the analysis of Erving Goffman on total institutions, says that the greater objective of this “total” logic is to prevent the possibility of heterosexual relations and establishing a life with a partner of a different gender. The secondary effect of this logic is the fact of tolerating or even encouraging, relations between people of the same sex, the practice of masturbation and the consumption of pornography, which are characteristics of institutional sexual life. However, this is not the situation which was observed in the mixed half-way house.
To clarify the issue better, working with a cultural perspective(15), sexuality is presented in the way people think, feel and act. It is related to all aspects of human life, being understood, therefore, as the result of a singular historical, social and cultural construction, which is integrated and manifested through the network of meanings of the specific social group, thus enabling the expression of everything that relates to sex.
In the statements of the collaborators of this study there are no pieces of evidence of their having sexual relationships with each other. On the contrary, the statements have shown a certain aversion with regard to the possibility of their entering any such relationships. It is important to note the vehemence with which they deny having a relationship with another resident of the house, and thus reproducing the universal taboo of incest.
Incest is determined by a set of rules, customs, stipulations and institutions, which condemns a marital or sexual relationship between close relatives or which promotes some form of sexual restraint in a given society. It is a taboo in almost all human cultures, and, therefore, considered universal. In some cases it is punished as a crime, in others it is considered a sin (as it is for the historical religions of the world). In most countries, incest is legally prohibited - even if both parties consent. In fact, incest is forbidden by law and by custom – culture(8).
However, this ban is not tied only to exogamy between close relatives, but together with them, a considerable number of individuals amongst whom it is not possible to establish any relationship of consanguinity or collateral kinship. This occurs due to what is incorporated in the imaginary as being kinship and family(8).
Thus, the importance of such considerations resides in the fact that, as a result, it is possible to make interactions visible where what may be present, in a veiled or explicit form, are practical experiences or the attempt to construct a new "family." It is therefore necessary to preserve this taboo, which arises here beyond the universality of a practice. This demands a different discussion, which now has as its focus the representation of the family in itself, as a universal concept used to define the union of a social group around kinship, which can occur in the most varied arrangements possible. This study is based on understanding the family in its wider meaning, by making it present in all the possible communities studied. The family occurs, what differs are the organizational forms within the kinship group.
Based on the observation period of this study, it is noted that the dynamic relationship of the residents of the mixed house is similar to a typical family structure, where what are present are relations of affection, of caring for one another, of protection and even conflict, which is common in social relationships.
The concept of family, to be addressed, obligatorily evokes the concepts of roles and functions, as has been verified in this study, in which men take on activities in public space and those that require most strength, and it falls to women to be responsible for private space, such as cleaning, providing food, and so on and so forth.
It can be said that what are present in the everyday routine of the relationship of the residents of the half-way house are the following functions: generating affection; providing personal security and acceptance, thus promoting a natural development of the individual; providing satisfaction and a sense of usefulness, through the daily activities of maintaining the home; ensuring the continuity of relationships, by providing lasting bonds of friendship and trust; furnishing stability and socialization, by ensuring the relationship in the community; imposing authority and the feeling of what is right, which relates to learning the rules and norms, rights and obligations characteristic of human societies.
In addition to these aforementioned features, it is said that the family has as its primary function that of protection, having, especially, the potential to give emotional support to resolve problems and conflicts, and by being able to form a defensive barrier against external aggressions. The family helps to maintain physical and mental health of the subject, because it forms the largest natural resource to deal with situations that have the potential of provoking stress associated with life in the community(16).
It is important, therefore, to be clear of this process, because when the group of residents institutes their family within the half-way house, it does so as part of their social reinsertion, one of the goals desired by the Psychiatric Reform program. That still seems to be a fight "intra house", since the men and women still come up against social barriers, these being most profound, ingrained and difficult to change, since they were built and solidified in the melting pot of the culture in which they are immersed.
Implications for nursing
As to the implications for Nursing, it can be said that this study supports the construction of theoretical and practical support mechanisms that permeate the care of those suffering from mental disorders within the community, by focusing attention on the subject rather than the disease, an innovative and relevant fact, when compared with Psychiatric Nursing – the practice of which was to isolate the application of the psychiatric measures prescribed (the administration of pharmacotherapy drugs, restraint and so forth), all in the name of the pseudo order of the asylum.
To do this, prominence should be given to Nurses as the active agent in the process of deconstruction/ construction of care in mental health so as to offer unique and subjective care to people suffering from mental disorders since the former need support on their route back to citizenship, with the focus being on society, the place from which they should not have been marginalized. Therefore, the practice of nursing, as a service which provides care, should adopt a stance of critical and self-critical activities in order to assist “the person who are suffering" holistically, both in the contexts of the mental health services and the social network.
Conclusion
This study argues that the start of the process of housing was characterized as a challenge, because the professionals did not believe in advancing the proposal, besides their having a reductionist view of the abilities of residents of the facility. However, the latter have assumed a peculiar dynamic of life, established relationships among themselves and to the extent possible with the community.
Reflection on these issues indicates that a relational structure of kinship among residents with different roles individually taken on has been established. .
Living in a community allows opportunities for social inclusion and the reconstruction of citizenship lost by the long years of hospitalization, and can promote health and well-being.
Perhaps, this reconstitution of a more affective and family environment is what those suffering from psychic illnesses needed in order to obtain the resources for living together that are necessary to face up to the psychic instability that has marked their life history.
It is held that the particularities found in this study may help to contribute towards guiding current policies, programs and services for health care, understood in a broader view, into which the mental dimension of the social subjects is inserted. However, it is clear that the results presented here do not exhaust the possibility of further study on half-way houses but rather open up new horizons for the various signs and meanings that surround this practice of home care and life in a possible family.
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