the perception of drug users about their human rights
TRANSCRIPT
Archives of Psychiatric Nursing 28 (2014) 372–376
Contents lists available at ScienceDirect
Archives of Psychiatric Nursing
j ourna l homepage: www.e lsev ie r .com/ locate /apnu
The Perception of Drug Users About Their Human Rights
Carla Aparecida Arena Ventura a,⁎, Juliana Cristina dos Santos b,1,Isabel Amélia Costa Mendes c,1, Maria Auxiliadora Trevizan c,1
a Department of Psychiatric Nursing and Human Sciences, University of São Paulo at Ribeirão Preto College of Nursingb Bachelor and Teaching Diploma Program in Nursing, University of São Paulo at Ribeirão Preto College of Nursingc General and Specialized Nursing Department, University of São Paulo at Ribeirão Preto College of Nursing
a b s t r a c t
The objective was to understand how illegal drug users monitored at a psychosocial care center for alcohol anddrug users perceive and experience their human rights. The data were collected through semistructured inter-viewswith 17users and analyzed through content analysis. The results demonstrated the difficulty the users per-ceive to expresswhat their human rights are, as if rightswere something extraneous to their own life, particularlyin function of the prejudice and stigma related to illegal drugs use in Brazil.
© 2014 Elsevier Inc. All rights reserved.
Concerns with the protection of human rights have substantially in-creased since the French Revolution, gaining undeniably important di-mensions in the international context and inside countries. Among thehuman rights, health stands out as a social right. According to theWorld Health Organization, health represents a state of complete phys-ical, mental and social well-being and notmerely the absence of diseaseor infirmity (World Health Organization, 1946). Therefore, the right tohealth is fundamental for the exercise of civil and political and collectiverights. Hence, enjoying the best possible state of health is one of the fun-damental rights of any human being (Bustreo & Doebbler, 2010;Fitchett, 2011; Ventura et al., 2009).
In Brazil, the right to health was consolidated in the 1988 FederalConstitution (Meier & Fox, 2010). Consequently, the UnifiedHealth Sys-tem (SUS), established in 1990, is based on the principles of universal,public and free access to health actions and services; on comprehensiveactions, taking care of the individual as a whole; on equity, being theduty to equally attend to each person's rights, respecting individual dif-ferences; on the decentralization of health resources and on the socialcontrol exercised by Municipal, State and National Health Councilsand Health Conferences (Brazil, 1988).
The protection of human rights is intrinsically related to the guaranteeof all individuals' health, especially of stigmatized and vulnerable popula-tions, such as drug users. In this context, drug use can be considered a se-vere influence onpeople's health,with very relevant social consequences,including the possible interference in the users' exercise of their rights.
Therefore, at the end of the 1980s, the Psychosocial Care Centers(CAPS) were created. Then, in 2002, Decree GM 336 established the
⁎ Corresponding Author: Carla Aparecida Arena Ventura, PhD, Associate Professor,Avenida Bandeirantes, 3900 – Ribeirão Preto, São Paulo, Brazil - CEP 14040-902.
E-mail addresses: [email protected] (C.A.A. Ventura), [email protected](J.C. dos Santos), [email protected] (I.A.C. Mendes), [email protected] (M.A. Trevizan).
1 Address: Avenida Bandeirantes, 3900–RibeirãoPreto, SãoPaulo, Brazil - CEP14040–902.
http://dx.doi.org/10.1016/j.apnu.2014.08.0090883-9417/© 2014 Elsevier Inc. All rights reserved.
different modalities of the CAPS, including the CAPSad, for people whoabuse alcohol and other drugs. The CAPSad were implemented to per-mit therapeutic planning based on an individual perspective of continu-ous evolution, permitting early interventions and aiming to limit thestigma associated with treatment. Care delivery for drug users in thecountry is guided by theNational Drugs Policy (Brazil, 2004), influencedby global guidelines, initially focused on prohibition, through thestrengthening of the control and international repression system and,today, tending towards flexibility with a view to users' recovery and so-cial reinsertion, explicitly distinguishing between illegal drug users andtraffickers (Uchoa, 2004).
Illegal drug users figure among the most marginalized populationsin the majority of countries. It can be affirmed that a large part of theproblems related to druguse derives froman incomplete and partial un-derstanding of the actions, effects and consequences of the drugs by so-ciety in general, by the health professionals responsible for care deliveryto drug users and by the users themselves (Ventura, Mendes, Trevizan,& Rodrigues, 2013). In that context, the general objective in this qualita-tive study was to understand how illegal drug users monitored at aCAPSad located in an interior city in the State of São Paulo, Brazil, per-ceive what their human rights are, what they think of health as a rightand how they exercise their right to health.
As a stigmatized population, it is fundamental to identify the illegaldrug users' perception of their rights. These study results can offerhealth services and their professionals' relevant information about pos-sibilities to provide care that allows the drug users to exercise theirhuman rights more effectively.
METHOD
A descriptive research with a qualitative approach was undertaken,which is aimed at interpreting the meanings illegal drug users attributeto their human rights. The data were collected through semistructured
Table 1Characteristics of DrugUsers InterviewedAccording to Gender,Marital Status, Age, Educa-tion and Profession.
Characteristics No %
Female 1 5.88Male 16 94.11Marital status
Single 15 88.23Married 1 5.88Divorced 1 5.88
Age19–28 9 52.9434–41 6 35.2950–53 2 11.76
EducationUnfinished primary 7 41.17Finished primary 3 17.64Unfinished secondary 2 11.76Finished secondary 5 29.41
ProfessionConstruction assistant 1 5.88Service aid 2 11.76Shop assistant 1 5.88Merchant 1 5.88Sewer 1 5.88Beverage deliverer 1 5.88Mechanic 1 5.88Metal worker 1 5.88Motorcycle taxi-driver 2 11.76Baker 1 5.88Lathe operator 1 5.88Guard 2 11.76No profession 2 11.76
Source: Interviews held at the Psychosocial Care Center Alcohol and Drugs (CAPSad).
373C.A.A. Ventura et al. / Archives of Psychiatric Nursing 28 (2014) 372–376
interviews with drug users monitored at a CAPSad in an interior city inSão Paulo. This techniquewas chosen because it explores a theme basedon the search for the informants' information, which the intervieweranalyzes and presents in a structuredmanner (Duarte, 2005). The inter-views were held based on a guiding script with questions that addressthe meanings the drug users attribute to their human rights and theright to health, as well as to the exercise of their right. Participantswere illegal drug users monitored by the only CAPSad in an interiorcity in São Paulo. With respect to their recruitment, three health profes-sionals from CAPSad indicated among all their clients at the time of datacollection, the patients who possessed the necessary cognitive condi-tions to participate in the study. All indicated patients were invited,and all of them accepted to serve as subjects in this research. They vol-untarily gave their written consent, accepting to participate after beinginformed about the research.
The research received approval from the Research Ethics Committeeat the Ribeirão Preto College of Nursing (Protocol 1222/2010), and afterthe participants had given their free and informed consent, the inter-views were recorded and later transcribed. In this context, it ishighlighted that the excerpts cited in the results are indicated using fic-titious names for the research participants.
To analyze the data, the thematic content analysis technique was ap-plied (Bardin, 1995). The categories were constructed as the themesemerged from the text. The exploration of the material consisted ofthree phases, in which all the authors of this study participated: pre-analysis, in which the data were transcribed and organized by eachresearcher separately; exploration, in which the data were organized inthematic categories by each researcher separately. After the first coding,researchers compared results that were independently derived, cross-checked codes, and refined the core themes repeatedly until they had aconsensus on the final categories and core themes. Finally, treatmentand interpretation of the results were based on the literature that consti-tutes the reference framework of human rights and the right to health.
RESULTS AND DISCUSSION
About the Research Subjects
Seventeen users of illegal drugs who attend the CAPSad health ser-vice for treatment participated in the research. Most research subjectsare men (94.11%), single (88.23%), between 19 and 28 years of age(52.94%) and who had at most a primary education (58.81%). Amongthem, 52.94% are under treatment for crack, 29.41% for cocaine and17.64% for marihuana consumption. Most participants had used drugsfor between 3 and 7 years (52.94%). Some subjects had used drugs fora period ranging between nine and 13 years (23.52%), others between14 and 15 years (11.56%), one for 30 years (5.88%) and another for3 months (5.88%). Among the interviewees who declared their profes-sion, only 29.41% are currently exercising their profession, 52.94% areunemployed and the remaining 17.64% on leave. Table 1 displays detailsabout the study participants' sociodemographic characteristics.
About the Thematic Categories and Units
About the drug users' perception of the human rights concept,the following themes were obtained: “What are human rights?”,“Right and life within society”; and “Right of drugs users versusrights of ‘normal’ people”.
With respect to the view of health as a human right, the followingthemes were found: “Health as a right and the fundamental role of theCAPSad”; “Excessive formalization of the right to health” and “Informa-tion as a premise to exercise the right to health”. Concerning the users'exercise of the right to health, the theme “Drug as disease and gaps inthe exercise of rights by drugs users” was found.
Fig. 1 summarizes the thematic categories and units resulting fromthe data analysis.
“What Are Human Rights?”
When they were asked about the meaning of human rights, mostparticipants were unable to define them. Some explicitly demonstratedthis difficulty, while others answered but were unable to conceptualizewhat human rights are.
[…]Oh dear....I couldn’t tell […] (Alan).[…]Right to be aware of the cause […] (Silvio).
The above statements reveal the subjects' difficulty to express whattheir rights are, as the view of a subject with rights is distant from theseusers' reality. The gaps in the understanding of human rights were alsoevidenced in a public opinion poll developed by the Human Rights Sec-retary of the Presidency of the Republic and published in 2010, aimed atdiscovering what human rights mean for Brazilian citizens (Venturi,2010). In this perspective, a large part of the Brazilian are unawarethat they are holders of rights and that the law is a socially constructedprocess, which goes far beyond the existence of laws and themonopolyof the state (Ventura, Mello, Andrade, &Mendes, 2012). Hence, in orderto implement a new human rights culture in the country, it is funda-mental to reflect about means to guarantee their practice. This lack ofawareness about rights can lead to a loss ofmeaning of the results of im-portant fights to put them in practice, in the international as well as theBrazilian context, with a consequent danger of social regressions pro-voked by the population's disenchantment. Therefore, a concrete inter-pretation of human rights should be aimed for, to the detriment ofabstract legal conceptions that are distant from people's reality.
Right and Life Within Society
Also regarding the meaning of human rights, some intervieweeswere able to relate it with the actual meaning of right as a conditionfor people to live in society.
[…]Right is something inherent in the social condition of existing as aperson […] (Fernando).
Categories and Core Themes Resulting from Data Analysis
Category Core themes
Perception of Drugs Users about Human Rights What are human rights?
Right and life within society
Rights of drugs users versus rights of normal
people
Health as a Human Right Health as a right and the fundamental role of
the CAPSad
Excessive formalization of the right to health
Information as a premise to exercise the right
to health
Exercise of the right to health by drugs users Drug as disease and gaps in the exercise of
rights by drugs users
Fig. 1. Categories and core themes resulting from data analysis.
374 C.A.A. Ventura et al. / Archives of Psychiatric Nursing 28 (2014) 372–376
Rights result from life in society and aim for good social contact (Alves,2009). For some subjects, it represents a means to survive in society.
[…]Citizens are entitled to basic health conditions […] (Fernando).[…]According to me, a human right means being certain that you areprotected by civil law […] (Carlos).[…]The human rights are means to survive […] (Alice).
In that sense, the Universal Declaration of Human Rights (UnitedNations, 1948) exactly aimed to express the dimensions of humanrights, indicating the right as a guarantee of basic living conditions,such as health and safety. In addition, the close link some people ob-serve between the rights and codes and laws should also be highlighted.In this perspective, for many research participants, the right derives di-rectly from the law. This conception of right can be attributed to theBrazilian legal order, as part of the civil law system, in which the lawis privileged as the primary source of right.
Rights of Drug Users Versus Rights of “Normal” People
In their discourse about the meaning of human rights, the partici-pants also manifested the distinction they perceive in their reality be-tween the rights of drug users and the rights of the people who do notuse drugs, emphasizing the idea that people who do not use drugshave more rights than people who do.
[…]Right which everyone who does not do drugs is entitled to, it is anacquired right every citizens needs to have, ok, I think it’s these things.I am entitled to go anywhere, there are places where we are barred,for certain things […] (Glauco).
This thought goes against the fundamental values of the UniversalDeclaration of Human Rights and the Constitution of the Brazilian Fed-eral Republic, which reassert the equality of rights independently of
race, color, gender, language, religion, political or other opinions,wealth, birth or any other condition.
Furthermore, the study subjects' discourse reveals the segregat-ing reality that the drug users experience, as well as the prejudicethat exists with regard to these people, fed by the social context(Ventura et al., 2013). Drug use represents a complex social phe-nomenon with multiple determinants, and its stigmatization hap-pens when people attach negative labels to this behavior,influencing the living conditions of illegal drug users and their per-ception of their rights, which the users themselves consider as dis-tinct from normal people's rights.
Health as a Human Right and the Fundamental Role of the CAPSad
When asked about the right to health, all participants affirmedthat they agree with the idea of health as a right. Nevertheless,they consider health as “help” the State offers, and not as a rightthey hold towards the State. This reveals a culture of paternalismin the users' relation with the health services. In this context, partic-ipants consider the Psychosocial Care Center Alcohol and Drugs(CAPSad) as the main support instrument to somehow modifytheir condition as drug users (Kaiser & Silva, 2010).
[…]well, here at the CAPS, it’s a place where I find help herewhich… I can’t say I don’t get help, that the doors are not open,but if it weren’t the CAPS, there would be no other people to givethis proper care.[…] (Fernando).[…]Ah… how? How can one get quality treatment like here at the CAPS[…] (Carlos).
It is important to highlight that the right to get access to health ser-vices is but one facet of the right to health. Health as a right goes beyondthe treatment for drug use. In this context, participants' restricted view
375C.A.A. Ventura et al. / Archives of Psychiatric Nursing 28 (2014) 372–376
of their right to health reflects the State's paternalist position and themarginalization the drug users experience (Moraes, 2008).
Affirming that health is a right of all implies a discussion about theholders of this right. Despite the role of the State in the guarantee ofthe right to health, as a social right, the logic of social relations repro-duces the inverted thinking that turns poverty into need, justice intocharity and rights into help, which individuals have access to not be-cause they are citizens, but because of the proof that they are excludedfrom citizenship (Pinheiro, Guizardi, Machado, & Gomes, 2010).
In view of these data, in this study, a redefinition of the idea of rightsis proposed, based on the conception that everyone is entitled to haverights, as a construction and reconstruction movement based on con-crete practices. As regards health, services like the CAPSad can play a rel-evant role in the effective implementation of drug users' right to health.
Excessive Formalization of the Right to Health
The right to health was also linked with excessive formalization,which the study participants referred to as bureaucracy.
[…] people try, right, but I think it’s a lot of bureaucracy, with regard topolicies in our country, and unfortunately I think that many people areill out there because that’s missing […] (Roberto).[…]Ah… because you go to the health service, to see an eye doctor,right… I need one, right… when you’re there… you have to schedule,make an appointment… right… you cannot pay for a health insurance,I’m unemployed, then it gets complicated […] (Luiz).
The bureaucracy represents a kind of sufficient power for the effec-tive functioning of organizational structures (Daft, 2002). It is consid-ered necessary with a view to good organizational functioning.Nevertheless, a balance should be sought in the bureaucracy level, as ex-cessive bureaucracy is very harmful to the efficiency and effectiveness ofthe actions that are developed.
The excessive formalization that participants mention implies theadoption of a critical attitude toward the strict standards, fixed modelsand centralized flows that characterizes the traditional health serviceorganizationmodes. Thesemodels are often aimed at preserving and re-producing the concentration of the institutional power, including thesymbolic mastery of technical knowledge, making the institutions im-permeable to democratic practices and values (Pinheiro et al., 2010).
Thus, the right to health includes positive standards, following legit-imate legal procedures, which facilitate excessive formalization and bu-reaucratization. In that perspective, a new culture of rights demandsreflections about the social context that positive standards fit into andthe role the legal experts, health professionals and health servicesneed to play by developing actions aimed at dealing with the objectifi-cation of the processes, reflected in the system of rules and proceduresto get access to health goods in Brazil.
Information as a Premise for the Right to Health
When asked about the exercise of human rights and the right tohealth, the participants argued that these are directly related with theavailability of information about the services.
[…]Many people are, but some are not concerned with that, no, thereare many people, right, who do not try to take care of themselves, theyget no orientation, right, or live far off […] (Marcos).[…] and sometimes it’s not even because of a lack of taking care ofhealth, it’s because of a lack of information […] (Roberto).
Knowing one's rights in health is important for the individual to beable to claim them. Among the governmental actions, a series ofdocuments and folders are available to the population to providefurther clarifications about their rights and duties as system users
(Ventura et al., 2012). Furthermore, these initiatives are but the startof an awareness-raising process. In addition, the users face difficultiesto express their rights as an important part of their reality.
Based on empowerment experiences (Ventura et al., 2013) of healthservice users through information about rights, this study rests on thepremise that information represents an essential requisite for the dem-ocratic and legitimate exercise of affirming citizenship.
Drug as Disease and the Great Gap in the Exercise of Rights by Drug Users
When asked about the extent to which they experience their rights,some participants reported that they do, but the majority affirmed thatthey are not entitled to health, especially due to the fact that they aredrug users. In that sense, most participants expressed the view thatthe right to health represents the right to be healthy and that, therefore,as drug users, they do not enjoy their rights.
[…]No, but now yes, because I’m not doing drugs now so I’m experienc-ing the human right […] (Alice).
According to them, the fact that they use drugs prevents them fromexercising their right to health, as drugs directly affect health. Most par-ticipants believe that the right to health is linked to the right to live ahealthy life and, as part of them are still using drugs sporadically, theidea of not experiencing the right to health is reinforced. Many partici-pants also consider addiction as an epidemic in the country, that is,from the perspective that drug use is a disease that affects public health.
[…]I also think that thismatter of chemical addiction, the idea is still de-veloping that, that like being treated, this thing with crack for example,which is turning into an epidemic that is affecting all social classes, peo-ple are still getting organized and thinking, what is it like to receive the-se people and everything else […] (Fernando).
The addiction syndrome is considered a disease, characterized by theuse of multiple drugs and other psychoactive substances and perma-nently growing in Brazil. As an alternative in the context of public healthpolicies about drugs, the CAPSad is emphasized (Ventura et al., 2013),which was created in the framework of the psychiatric reform to sup-port the treatment of alcohol and drugs dependent people, who didnot have a specialized service at their disposal earlier. Nevertheless,the best way to put treatment in practice and increase the participants'adherence is still being studied. In that perspective, research about ille-gal drug use can contribute to a more effective treatment system, assome policies are recent responses to a significantly increasing demand.
Final Considerations
The human rights are universal, interdependent and indivisible. Allhuman beings are holders of these rights, independently of race, color,belief or any other kind of distinction. Thus, the right to health consti-tutes a second-generation or social human right, necessary for humanbeings to exercise all other rights. In this context, this study focusedon the search to understand how illegal drug users perceive theirhuman rights, emphasizing the right to health, and the experience ofrights. The research was developed in the only CAPSad of the city withall the patients indicated by the health professionals from the servicewith cognitive conditions to participate in this study at the time ofdata collection. As a limitation of this study, we cannot extrapolate theresults to other regions. However, we can affirm that final participantsrepresent the studied CAPSad patients' perceptions about human rightsand how they experience their rights, especially their right to health.
The results demonstrated the difficulty the users perceive or experi-ence to express what their human rights mean and what they are, as ifrights were something “extraneous” to their own life. In addition, theyconsider that only people who do not use drugs are entitled to have
376 C.A.A. Ventura et al. / Archives of Psychiatric Nursing 28 (2014) 372–376
rights. In this perspective, the answers obtained demonstrated the“burden” of the stigma of drug use on the users, who consider theirrights as a “favor” of the State. This paternalist view of the State andthe health services negatively affects the development of effective andprofessional relations between users and health services.
In this context, further research proposals based on these findingsand combining interventions to address the lack of knowledge aboutrights would facilitate their exercise by drug users. CAPSad can play animportant role in the dissemination of this information.
Putting the users in closer contact with their rights allows them tofeel that they are subjects, aware of their rights and obligations ashuman beings and citizens. In accordance with the premises of the Na-tional Drugs Policy, therefore, different actions are recommended,whichmultiple social actors need to put in practice with a view to facil-itating the dissemination of information, as well as the understandingand exercise of human rights among illegal drug users in Brazil.
References
Alves, V. S. (2009). Modelos de atenção à saúde de usuários de álcool e outras drogas:Discursos políticos, saberes e práticas. Cadernos de Saúde Pública, 25(11), 2309–2319.
Bardin, L. (1995). Análise de conteúdo. Lisboa: Edições, 70.Brazil (1988). Constituição. Constituição da República Federativa do Brasil. Brasília,
DF: Senado.Brazil (2004). Ministério da Saúde. Saúde Mental no SUS (Brasília, DF).Bustreo, F., & Doebbler, C. F. J. (2010). Making health an imperative of foreign policy: The
value of human rights approach. Health and Human Rights, 12(1), 47–59.Daft, R. (2002). Teoria das organizações. São Paulo: Makron Books.
Duarte, J. A. M. (2005). Entrevista em profundidade. In J. A. M. Duarte (Ed.), Métodos etécnicas de pesquisa em comunicação. São Paulo: Atlas.
Fitchett, J. R. (2011). The right to health in practice. International Journal of Clinical Practice,65(3), 245–248.
Kaiser, D. E., & Silva, J. O. (2010). Oficina de Fanzine com adolescentes usuários de drogas:Umavisão emenfermagem.Ciênc Cuid Saúde [Internet], 9(1), 161–166 (Disponível em:http://periodicos.uem.br/ojs/index.php/CiencCuidSaude/article/view/7248/5751).
Meier, B. M., & Fox, A. M. (2010). International obligations through collective rights: Mov-ing from foreign health assistance to global health governance. Health and HumanRights, 12(1), 61–72.
Moraes, M. (2008). Modelo de atenção integral à saúde para tratamento de problemasdecorrentes do uso de álcool e outras drogas: Percepções de usuários,acompanhantes e profissionais. Ciênc Saúde Coletiva [Internet], 13(1), 121–133(Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-81232008000100017&lng=pt).
Pinheiro, R., Guizardi, F. L., Machado, F. R. S., & Gomes, R. S. (2010). Demanda em saúde edireito à saúde: Liberdade ou necessidade? Algumas considerações sobre os nexosconstituintes das práticas de integralidade. In R. Pinheiro, & R. A. Mattos (Eds.),Construção social da demanda (pp. 13–34). Rio de Janeiro: CEPESC/UERJ: ABRASCO.
Uchoa, P. R. Y. M. (2004). Drogas e educação. Rev Cultura IMAE, 5(12), 47–54.United Nations (1948). Universal declaration of human rights. Geneva: UN.Ventura, C. A. A., Brands, B., Adlaf, E., Giesbrecht, N., Simich, L., Wright, M. G. M., et al.
(2009). Políticas e leis sobre drogas ilícitas no Brasil e a perspectiva de familiares epessoas próximas a usuários de drogas: Estudo na Cidade de Ribeirão Preto, SãoPaulo, Brasil. Rev Latino-Am Enfermagem, 17, 810–816.
Ventura, C. A. A.,Mello, D. F., Andrade, R. D., &Mendes, I. A. C. (2012). Aliança da enfermagemcom o usuário na defesa do SUS. Revista Brasileira de Enfermagem, 65(6), 893–898.
Ventura, C. A. A.,Mendes, I. A. C., Trevizan,M. A., & Rodrigues, D. P. (2013). Human rights ofdrug users according to health professionals in Brazil. Nursing Ethics, 20(2), 158–167.
Venturi, G. (2010). O potencial emancipatório e a irreversibilidade dos direitos humanos.In G. Venturi (Ed.), Direitos humanos: percepções da opinião pública (pp. 9–32).Brasília: Secretaria de Direitos Humanos da Presidência da República.
World Health Organization (1946). World Health Organization Constitution (OMS/WHO).Geneva: WHO.