v25id4344

ORIGINAL RESEARCH

 

Human rights of people with mental disorders: health professionals' and clients' views

 

Carla Aparecida Arena VenturaI; Viviana Carolina Oyan de Moraes II; Márjore Serena JorgeIII

I Associate Professor at the University of São Paulo at Ribeirão Preto College of Nursing. Ribeirão Preto, São Paulo, Brazil. E-mail: caaventu@eerp.usp.br
II Nurse graduated from the University of São Paulo at Ribeirão Preto College of Nursing. Ribeirão Preto, São Paulo, Brazil. E-mail: vivianabtu@hotmail.com
III Nurse. Master's Degree in Psychiatric Nursing from the University of São Paulo at Ribeirão Preto College of Nursing. Ribeirão Preto, São Paulo, Brazil. E-mail: marjore.serena@hotmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2017.4344

 

 


ABSTRACT

Objective: to describe the views held by health professionals and clients at a Psychosocial Care Center II (CAPS II) in a municipality in São Paulo State regarding the human rights of people with mental disorders. Method: in this qualitative study of five clients and seven health professionals, data were collected in 2008 and 2009 by semi-structured interview and analyzed using Bardin's content analysis. The project was approved by the Ethics Review Board at the School of Nursing of São Paulo University at Ribeirão Preto (Protocols Nos. 1038/2009; CAAE - 249 and 0919/2008; CAAE – 143). Results: clients and professionals argue that discrimination and prejudice impair fulfillment of the rights of people with mental disorders. Conclusion: health professionals are disseminators of information and facilitators of clients' and families' involvement and, as such, their attitudes are relevant to securing rights.

Keywords : Human rights; right to health; mental health; delivery of health care.


 

 

INTRODUCTION

The exercise of human rights enables individuals to develop themselves, participate actively in life and experience their citizenship. In the health context, especially in mental health, the Psychiatric Reform movement resulted from the struggle to guarantee the human rights of mental patients, aiming for their inclusion in society, without discrimination and segregation, under the shelter of the State's affirmative actions.

The psychiatric reform resulted in the constitution of the Brazilian Mental Health Care Network, as a part of the Unified Health System (SUS). This organized network of public health actions and services was established in the country by Federal Law 10.216 from 2001 and comprises the Psychosocial Care Centers (CAPS), Therapeutic Residential Services (SRT), Community Centers, Mental Health Outpatient Centers and General Hospitals1 .

Based on the premises of the reform, the fundamental rights of mental patients are confirmed, especially their right to health, departing from care that considers their particularities, also highlighting the importance of health professionals' activities in the consolidation of rights and the encouragement of service users' exercise of their citizenship.

Thus, when they are discharged from isolation and start using outpatient therapeutic care, mental patients can turn into subjects de jure and de facto2.

Despite the premises of the reform, however, the psychiatric care model is still receiving criticism, resulting from complaints of violence and other forms of disrespect for human rights. This reveals the importance of the fight to preserve the mental patients' right to uniqueness, subjectivity and difference3.

Therefore, the subject's reintegration does not represent the adaptation to a certain standard of normality, but to a reintegration into himself 4. Moreover, the professional practice and health service routines often distance the care professionals, due to the emphasis on technicality, compliance with protocols, standards and the biomedical view 5.

In view of this reality, this research aimed to describe the perception of health professionals and users at a Psychosocial Care Center II (CAPS II) in an interior city in the State of São Paulo about the human rights of mental patients. The CAPS II was chosen because the service targets cities with more than 71,000 inhabitants.

 

LITERATURE REVIEW

The psychiatric reform proposals and the anti-asylum struggle in Brazil were influenced by the experiences of other sociocultural contexts (United States, Italy, France and England), aiming to defend and promote the human rights of the patients and their relatives (users) and to reduce the hospitalization beds in psychiatric hospital, guaranteeing care for the patients discharged from these hospitals and creating and sustaining a proper extra-hospital network, later established in Brazil6,7.

In the 1990's and the first decade of the 21st century, these changes were accompanied by new resolutions and decrees from the Ministry of Health and laws, mainly Law 10.216 by Paulo Delgado8, from 2001, about the reformulation of the mental health care model and the protection of users' rights.

This law guarantees the protection of mental patients without any form of discrimination and determines that mental patients and their relatives should be formally made aware of the rights in mental health care 8.

Aiming for social reinsertion, the law also determines that patients should only be hospitalized if the extra-hospital resources are insufficient for effective treatment. In addition, long internment periods should be addressed in a specific planned discharge and assisted psychosocial rehabilitation policy, guaranteeing the continuity of treatment when necessary8.

Despite this scenario of struggle to preserve human rights, what is observed in practice often does not reflect the premises of the psychiatric reform in Brazil.

 

METHOD

A descriptive study with a qualitative approach was undertaken, whose study phenomenon is complex, social and does not tend to quantification. 9 The study data were collected in 2008 and 2009 through semistructured interviews with the health professionals and users of the CAPS II in an interior city in the state of São Paulo. The data collection instruments focused on the meaning of right and human rights for the subjects, the perceived concreteness of these rights according to mental patients and suggestions to enhance the effective guarantee of these rights.

To collect the data, the researcher triangulation method was used, which refers to the data collection on the same study phenomenon independently by more than one researcher, followed by the comparison of the results 10.

All CAPS II professionals were selected and invited, i.e. 18 workers, seven of whom participated in the interviews.

All CAPS II clients who at the time of the interview were in cognitive and psychological conditions to participate in the research were invited to participate, as indicated by their health professional. Only those clients who agreed to participate in the study were interviewed.

The interviews were recorded, transcribed and analyzed through thematic content analysis11. The data were analyzed in three phases: 1) pre-analysis, transcription and organization of the data; 2) exploration of the material (data organized by thematic categories and subcategories, repeatedly revised and continuously coded); 3) Treatment and interpretation of the results analyzed. The statements of the CAPS II health professional are identified using the letter P, followed by the interview number. The users' statements are identified by means of the letter C and the respective interview numbers.

This research received approval from the Research Ethics Committee at the University of São Paulo at Ribeirão Preto College of Nursing (Protocols 1038/2009 and 0919/2008). The semistructured interviews were held with the participants' informed consent, as indicated in the ethical aspects, in compliance with National Health Council Resolution 196/96, in force when the study was developed.

 

RESULTS AND DISCUSSION

Seven out of the 18 team members at the CAPS II and five users from the same service participated in the study. The professionals' mean length of work in the CAPS was six years and the users' mean length of treatment in the CAPS was 5.5 years. Among the seven health professionals, five were women, six single, being mainly nursing professionals and psychiatrists. Among the five clientes, four were women and single. The prevalente diagnoses were personality disorders and bipolar disorder.

The analysis of the interviews with the professionals and mental patients produced contents that resulted in four categories: Definitions and Uncertainties in the meaning of Human Rights; Discrimination, prejudice and gaps in the concretization of the human rights; Good relationship and information exchange between health professionals and users; and Family participation in the consolidation process of the human rights.

Definitions and Uncertainties concerning the meaning of human rights

Uncertainties on the meaning of human rights permeated the interviews held, especially with the mental patients. In that perspective, despite demonstrating knowledge on their disorders and respective medication treatments, when asked about their rights as citizens and users, it was observed that the majority was unable to define them, affirming that they have no rights, or even that they did not feel capable of having or claiming rights.

We have no right whatsoever [...]. At my home, my rights are not respected [...]. (U3)

[...] it is very difficult to say, claiming my own rights because I don't claim anything, because of these problems we feel so inferior, and sometimes I end up not giving myself the right to anything [...]. (U4)

On the opposite, the health professionals at the service were able to better define the meaning of right and human rights. These participants emphasized the freedom, the protection of life, the life in society, citizenship and health as synonyms of their patients' human rights.

It is a right to life that includes ways for the people to live in a dignified society, with respect, freedom, I think that's basically it. (P4)

A human right is a guarantee of citizenship, [...] of health. (P6)

[...] health is part of the human being's comprehensive wellbeing. (P7)

The study revealed, therefore, that the professionals at the service investigated considered health as a human right and highlighted its role to guarantee close care which includes, besides the medication treatment, the awareness raising of all stakeholders in the process, ranging from the multiprofessional team to the relatives and society.

On the opposite, most of the students were unable to define their rights, demonstrating a feeling of inferiority towards society due to their mental disorder. In that sense, they do not feel capable of claiming rights and highlight that they are disrespected in daily life.

According to the Law that regulates the mental health care model, the patients and their relatives or responsible caregivers should be formally made aware of their rights to: access to the best treatment in the health system, according to their need; be treated with humanity and respect in order to achieve their recovery and reinsertion in the family, work and community; receive information about their disease and treatment; be treated in a therapeutic environment with the least invasive means possible; comprehensive care, including medical services, social service, psychologists, occupational services, leisure and others8. Despite the existing legislation, however, it is a consensus among the CAPS professionals and users that, in practice, the mental patients' exercise of their rights is still a distant reality.

Discrimination, prejudice and gaps in the concretization of the human rights of mental patients

The users and professionals mentioned the stigma and prejudice with regard to mental disorders. Thus, the interviewees cited situations of discrimination in the health service context and in the mental patients' private life.

In that perspective, the users argued about the difficulties to live in society and in their own family, as well as to get employment because of their disorder.

The professionals emphasized the existing disrespect and reported gaps in governmental actions as factors that induce this situation of the difficult practice of the mental patients' human rights.

We are greatly discriminated against [...] I am considered mad. (U1)

I have 2 children who think I'm mad, they say they'll hospitalize me [...], you can't get a job, a lot of discrimination. (U3)

There's a lot missing with regard to the rights, mainly in relation to mental patients, it leaves a lot to be desired, by society as well as by the government [...]. (P1)

Sometimes, the mental patients are greatly disrespected, they say they're the ones who die most at the health services because everything is "tantrum", the person is not having that, right? (P5)

In this context, the users described experiences of disrespect and mistreatment in the social relations in general, but also with health professionals.

There was a girl who discussed with me, she called the cop and said I was mad, that I was a psychiatric patient [...] that made me sad, I cried a lot, because it's an attitude of discrimination. (U1)

A lot has happened to me already, I remember, even professionals saying improper things, lack of respect. (U4)

It can be affirmed that the social relations involving these individuals are historically characterized by discrimination and prejudice. In the asylum model, the subjects in mental suffering were segregated from their group, with their social relations restricted to the universe of the psychiatric institution, which favored the feeling of inferiority with regard to the so-called normal people12. Efforts were made to change this paradigm through the Psychiatric Reform, but remnants of this behavior remain, observed in different situations of disrespect and mistreatment.

In this context, the relationship networks (family members, neighbors, friends) are often fragile due to the interrupted continuity of normal life, activities, relations and the social place, due to the illness process13. It is also highlighted that, in the capitalist system, the mental patients are not as productive as the normal people and end up being excluded from life in society, which impairs their social inclusion and autonomy even further14. The stigma results from a series of factors and that discrimination comprises any distinction, exclusion or abolishment of the equitable enjoyment of human rights 15.

Thus, increasing reports of aggressions and mistreatment of mental patients are still detected16. In this research, the users cited situations of mistreatment they experienced, including in health services which, according to the premises of the Psychiatric Reform, should support their practice in an inclusive and humanized manner. Other studies support these findings, evidencing that, in the health services, some professionals end up adopting omnipotent, individualistic and arrogant behaviors towards the patients, making the care inhuman and unqualified17. In view of the health professionals' complex interactions with the mental patients, some authors argue that the health professionals' contact with the mental patients does not represent a guarantee of humanized care and improvements concerning the stigma, provoking strong implications in care18.

In view of the disrespect for the cultural and religious values and the privacy of the mental patients, and as a result of the advances the Psychiatric Reform process brought about in Brazil, the professionals are confronted with new challenges, especially the constant reflection about their actions and any discriminatory and prejudiced attitudes, which distance the professional from a transformative practice, moving away from mechanical and bureaucratic actions without interest in the user 19, 20.

Good relationship and information exchange between health professionals and users

In view of the difficulties to respect the mental patients' rights, professionals and users indicated the mutual respect as a fundamental factor for good care delivery and for the practice of the mental health service users' human rights.

Through the human relations, ethics and constitution regarding the public power itself, let's say, which are constituted in the cities, in the states. (P3)

Me respecting the CAPS and the CAPS respecting me. (U5)

I think that good care, the professional trying to solve the patient's problem, whether it's physical or in this case more mental. (P2)

Being in conditions to be healthy, to have a dentist, a physician. (P1)

You having quality access and [...] to health when you need it and even to prevention. (P6)

The service users and professionals also mentioned the need for information and awareness raising for the practice of these rights. It is also highlighted that the professional is considered an important agent in the dissemination of information about the rights of mental patients.

We always try to respect this right to health, working more with the patient [...], for him to gain awareness that it is a right. (P4)

I even think that the main practice of these rights would be the people's awareness that they have these rights, that they do not know this, right? (P5)

It depends a bit on myself, because I am well informed about the rights and I am trying to claim these rights and not keep on, you know [...] asking people for apologies because I live. (U4)

The goal is a society in which the mental problem is not impossible, in which citizenship not only represents the acknowledgement or protection of rights, but also the continuous process of exercising the ability to act freely and participate, including all citizens, especially the mental patients21.

The study subjects emphasized the respect between professionals and users and proper care delivery as key items for the practice of human rights. It is exactly in this context that the CAPS should act, in the sphere of the users' psychosocial rehabilitation and social reinsertion, through actions aimed at the strengthening of their relationship networks.

There is an urgent need for an institutional culture in which the professionals involved are aware that the psychiatric reform is a broad, present and continuing movement that represents a possibility to exercise citizenship2. Moreover, the mental health care needs to rest on the principle of care humanization to avoid a false deinstitutionalization. The meaning of humanization used in this study does not remit to the welfare or charitable perspective, but to the respect for the rights and human dignity of the mental patients5.

Despite the mistreatment some of the participants in this study experienced, one might say that the health professionals have increasingly sought answers regarding the human dimension of care, concerned with the relations of autonomy, justice and respect for human beings. These relations can and should be required by the population, and particularly by the mental patients17. Some authors argue that it is common for health professionals to adopt stigmatizing attitudes towards mental patients and that these perceptions are also related to their professional experience and contacts with patients in symptomatic phases of mental disorders20. Hence, it is important for the health professionals to reconsider their attitudes towards the health situations, with a view to the effectiveness and humanization of the treatment.

Similar findings highlight the need for the mental health professionals directly involved in the treatment to consider drastic and consistent reformulations with a view to developing and multiplying new practices and concepts on mental illness, mental suffering, ability to understand and action, treatment, users' needs and rights. That is the only way for the patients not to be considered as stigmatized and shortcoming, but as holders of subjectivity and unalienable rights6.

In short, users and professionals should engage in the awareness raising about rights. The awareness raising of rights is constituted through information, defined as the input and product of the knowledge production process, preceding the practice of human rights and constituting the right that summarizes the social rights22. By applying this knowledge on their rights, the users leave their condition of submission and truly assume their role as autonomous subjects23.

Family participation in the consolidation process of human rights

Law 10.2016 from 2001 represented a landmark for changes in health care at health institutions, aiming to value the psychosocial context of the mental patients, prioritizing the family's engagement in the treatment, which takes on a protagonist role in care24. The family is directly involved in the treatment and development of the disorder. Hence, it can be a means for the patient to gain awareness of his rights and have them respected. Thus, users and professionals involve the family in their discourse. The professionals affirm that many families are not prepared to deal with families with mental disorders out of a lack of support, and that this hampers the evolution of the treatment quite a lot. In addition, some users demonstrate fear of the attitudes their family members can take towards them.

I just did not want to be banned by my children because, for now, I can take care of myself and I don't want to be hospitalized. (U3)

Few families appear and participate here at the Caps directly with the patient [...] The population, the family who attends still lacks a lot of clarification. The families do not get support at home, many are unable to understand what the disease is like and the treatment. Sometimes it's not even the family's fault, it's because they have no idea how they can help, how they can understand the disease. (P4)

[...] even for the family it's complicated, it's a mental health struggle, to clarify the disease and get rid of this fear in the population. (P1)

Finally, it is important to highlight that the family's involvement, cited by professionals and users, demonstrates the need for participation by the people surrounding the users as a possible way to seek the practice of their rights. Experts on the theme show that many family do not get support from the health professionals in terms of orientations and forwarding, and that they face countless economic, social and emotional problems to assume the role of caregivers for their loved ones25. Therefore, the creation of support networks and experience exchange to welcome patients and relatives is fundamental26. The family is considered part of the therapeutic process and can contribute to the psychosocial rehabilitation and deinstitutionalization. The insertion of the families in this context should depart from a prepared multiprofessional team that aims to reconstruct the bond and demystify the hazardousness and disability of the mental patients to live in society27. Therefore, the health professionals' role involves ethics, humanized care and the transmission of information with a view to the true respect for the rights of the mental patients28.

 

CONCLUSION

Despite the changes resulting from the Brazilian psychiatric reform, severe gaps remain in mental patients' exercise of their human rights. As means to cope with this reality, the research participants emphasized the need for respect and proper care, information and awareness raising among the mental patients as well as the mental health professionals about the human rights of this vulnerable population group.

It is important for the health professionals to deepen their knowledge on the rights of the health service users, so as to respect and transmit them. At the same time, it is very important for the mental patients and their relatives to know their rights so as to be able to claim them as true subjects of rights and citizens. The study objectives were achieved with limitations, such as the small number of professionals and clients who agreed to participate in the research. Based on these results, interventions are fundamental that aim to facilitate the mental patients' appropriation of their rights.

 

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