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Perception of immigrants: free consent and access to health services

Abstract

This study aims to identify the perception of Cuban immigrants about the free and informed consent form and access to dental and medical care. This is a cross-sectional descriptive survey conducted with a sample of immigrants from a medium-sized municipality in the state of São Paulo. Data were collected by means of a questionnaire addressing the form and the access to dental and medical care both in Brazil and in their country of origin, as well as sociodemographic aspects. The results indicate that immigrants have access to medical and dental care, but little knowledge about the consent form during treatment. Considering that a well-designed consent term and patient knowledge promotes the successful performance of procedures, physicians and dentists need to adopt measures for a safe professional practice.

Informed consent; Personal autonomy; Bioethics; Right to health; Emigrants and immigrants

Resumen

En este estudio se propone conocer la percepción de los inmigrantes cubanos sobre el formulario de consentimiento informado y el acceso a tratamientos médicos y odontológicos. Este es un estudio descriptivo transversal, tipo encuesta. La muestra se compuso de inmigrantes de un municipio de mediano porte del estado de São Paulo, Brasil. Los participantes respondieron a un formulario con preguntas relacionadas al conocimiento del formulario de consentimiento informado y la accesibilidad a tratamientos médicos y odontológicos en Brasil y en su país de origen, instrumento que también recogía información sociodemográfica sobre los encuestados. Los participantes tenían accesibilidad a la atención médica y odontológica, pero poco conocimiento sobre ese formulario durante los tratamientos. Los médicos y los odontólogos deben adoptar medidas para una práctica profesional segura, pues un formulario de consentimiento informado bien preparado y de conocimiento del paciente favorece la realización exitosa de los procedimientos.

Consentimiento informado; Autonomía personal; Bioética; Derecho a la salud; Emigrantes e inmigrantes

Resumo

Este estudo visa conhecer a percepção dos imigrantes cubanos sobre o termo de consentimento livre e esclarecido e o acesso a tratamentos médicos e odontológicos. Trata-se de um estudo descritivo transversal, tipo inquérito. A amostra foi composta por imigrantes de um município de médio porte do estado de São Paulo. Os participantes responderam a um formulário com questões relacionadas ao conhecimento desse termo e ao acesso a tratamentos médicos e odontológicos no Brasil e no país de origem, instrumento que também coletou dados sociodemográficos. Os participantes tinham acesso à assistência médica e odontológica, mas pouco conhecimento sobre o termo de consentimento durante os tratamentos. Os médicos e odontólogos devem tomar medidas para uma prática profissional segura, pois um termo de consentimento bem elaborado e de conhecimento do paciente promove a realização bem-sucedida dos procedimentos.

Consentimento livre e esclarecido; Autonomia pessoal; Bioética; Direito à saúde; Emigrantes e imigrantes

In healthcare, patients have the right to respect for their physical and mental integrity, guaranteeing the exercise of their autonomy11. Diez Bueso L. La garantía institucional de la autonomía del paciente. Rev Bioét Derecho [Internet]. 2012 [acesso 14 mar 2021];(25):33-44. DOI: 10.4321/S1886-58872012000200004 . To this end, the informed consent form manifests patients’ right to participate in each treatment decision that may affect their psychophysical integrity, and it is physicians’ duty to inform about the risks and benefits of the treatment22. O que se entende por princípio do consentimento informado? JusBrasil [Internet]. 2008 [acesso 14 mar 2021]. Disponível: https://bit.ly/3mbJU8r
https://bit.ly/3mbJU8r...
.

This protocol dates back to the Nüremberg Code, created in 1947, after the trial of doctors who conducted scientific experiments on prisoners without their consent during World War II. Nowadays, informed consent is imperative in scientific research and medical practice alike33. Garbin CAS, Gonçalves E, Garbin AJI. Consentimiento informado en la práctica odontológica brasileña: sus aspectos éticos y legales. Acta Odontol Venez [Internet]. 2006 [acesso 14 mar 2021];44(2):261-4. Disponível: https://bit.ly/3yILSjZ
https://bit.ly/3yILSjZ...
.

Codes of ethics in the health area are based on the new therapeutic relationship model, which covers the principle of autonomy and highlights the participation of both physicians and patients in decision-making44. Oppliger A W, Bascuñán R ML. Consentimiento informado: percepción de médicos, enfermeras y padres sobre el proceso comunicativo. Rev Chil Pediatr [Internet]. 2011 [acesso 14 mar 2021];82(3):204-10. DOI: 10.4067/S0370-41062011000300005 . In dentistry, as well as in other fields, dentist–patient interaction is substantial for building trust to determine the intervention, limit, and extent of the procedure, thus improving the health of those seeking dental care55. Rillo AG. Consentimiento informado: aspectos éticos y legislación en la odontología. Humanidad Med [Internet]. 2013 [acesso 14 mar 2021];13(2):393-411. Disponível: https://bit.ly/3g02koq
https://bit.ly/3g02koq...
.

Thus, both medical/dental care and scientific experimentation require understanding and voluntariness on the part of the subject66. Bittencourt ALP, Quintana AM, Velho MTAC, Goldim JR, Wottrich LAF et al. Consentimento livre e esclarecido e avaliação do grau de expressão de coerção em assistência. Rev Bioét Derecho [Internet]. 2014 [acesso 14 mar 2021];(31):81-9. DOI: 10.4321/S1886-58872014000200007
https://doi.org/10.4321/S1886-5887201400...
. Health professionals often withhold information from patients, performing the treatment considered more effective without considering their opinions. This may lead to patient dissatisfaction, treatment errors, and violation of laws, meaning the lack of informed consent makes professionals vulnerable in various legal procedures77. Garbin CAS, Garbin AJI, Santos C, Gonçalves PE. Percepción del cirujano-dentista respecto del uso del consentimiento informado en el tratamiento odontológico. Acta Bioeth [Internet]. 2009 [acesso 14 mar 2021];15(1):106-11. DOI: 10.4067/S1726-569X2009000100014 .

The United Nations (UN) Committee on Economic, Social and Cultural Rights (CESCR) provides that the right to health must cover four essential elements: availability, accessibility, acceptability, and quality. This requirement seeks to ensure the availability of means to meet the population health needs and the social determinants of health88. Arbelaez Rudas M. Inmigración y salud: la protección de la salud frente a la diversidad cultural. Rev Bioét Derecho [Internet]. 2006 [acesso 14 mar 2021];(7):1-9. DOI: 10.1344/rbd2006.7.7864
https://doi.org/10.1344/rbd2006.7.7864...
.

In this sense, before the growing number of immigrants in Brazil and their medical and dental needs, this study sought to identify the perception of Cuban immigrants regarding informed consent and access to dental and medical care both in Brazil and in their country of origin.

Method

This cross-sectional quantitative descriptive survey was conducted from October to December 2019, with 60 Cuban immigrants living in a medium-sized municipality in the city of São Paulo. Individuals living in Brazil for more than three months who showed interest in participating were included in the study.

Data were collected by a single researcher, through a semi-structured individually-applied interview addressing the informed consent form and access to medical and dental care in Brazil and in Cuba. Each application lasted 15 minutes on average.

Interviews were conducted in an appropriate environment to avoid biases, as the interviewees could feel constrained in expressing their opinion regarding the performance of health professionals.

Besides addressing the central questions of the study, the interview also provided data on sociodemographic variables such as age, gender, length of stay in Brazil, and whether participants have residence permit. All participants agreed to participate and signed the informed consent form. The study was approved by the Ethics Committee of the Araçatuba School of Dentistry of the Universidade Estadual Paulista “Júlio de Mesquita Filho.”

Data were analyzed using the Epi-Info, and the results will be presented in the section below.

Results

The study sample consisted of 55 immigrants, 65.45% of whom were women. Among these, 69.9% (38/55) were familiar with the concept of informed consent, 84.21% (31/55) of whom deemed it important for both the patient and the health professional.

All participants were Cuban, and 83.78% (47/55) had residence permit in Brazil. Most of them had unrestricted access to medical care in Cuba (94.55%, 52/55) and Brazil (91.67%, 48/55), with private service being the most sought after by them in Brazil (60.42%, 48/55).

Of the interviewees who sought medical care in the country of origin (89.09%, 49/55), 38.89% (21/55) sought for medical-surgical care, 90.91% (50/55) for dental care, and 50.91% (28/55) dental-surgical care ( Figure 1 ).

Figure 1
Care sought by immigrants in their country of origin

In turn, of the interviewees who sought medical care in Brazil (54.55%, 30/55), 16.36% (9/55) consisted of medical-surgical care, 63.64% (35/55) of dental care, and 10.91% (6/55) dental-surgical care ( Figure 2 ).

Figure 2
Care sought by immigrants in Brazil

Most of the study participants sought dental care in Brazil (63.64%, 35/55), but only 12 of these (34.29%) reported signing the informed consent ( Figure 3 ).

Figure 3
Dental care and signing of the informed consent form in Brazil and Cuba

Only three (5.45%) of the 50 (90.91%) immigrants who received dental care in Cuba reported signing the informed consent form during treatment ( Figure 3 ), whereas 44 (88%) received verbal information about the procedure.

Discussion

Either for political and economic factors or for social conflicts, immigration is an increasingly frequent phenomenon worldwide. The arrival of new groups of immigrants in Brazil raise questions about this population’s access to health services. One of the greatest limitations of immigrants in accessing care is the lack of knowledge of the Portuguese language, for it interferes in the understanding of administrative procedures and hampers the report of their condition and the understanding of healthcare measures88. Arbelaez Rudas M. Inmigración y salud: la protección de la salud frente a la diversidad cultural. Rev Bioét Derecho [Internet]. 2006 [acesso 14 mar 2021];(7):1-9. DOI: 10.1344/rbd2006.7.7864
https://doi.org/10.1344/rbd2006.7.7864...
.

Patients are often poorly acquainted or completely unaware of the informed consent form. A study conducted in a general hospital in Mexico99. Vizcaya Benavides DM, Zúñiga Villarreal FA, Pérez Cortés P, Cobos Aguilar H. Conocimiento de los pacientes sobre el consentimiento informado en un hospital general. Rev Fac Med (Mex) [Internet]. 2014 [acesso 14 mar 2021];57(5):5-13. Disponível: https://bit.ly/3fZLvdw
https://bit.ly/3fZLvdw...
found that most participants were unaware of the existence of the informed consent form, with one in every ten patients being familiarized with the document. A study conducted by Leclercq and collaborators1010. Leclercq WK, Keulers BJ, Scheltinga MR, Spauwen PH, van der Wilt GJ. A review of surgical informed consent: past, present, and future: a quest to help patients make better decisions. World J Surg [Internet]. 2010 [acesso 14 mar 2021];34(7):1406-15. DOI: 10.1007/s00268-010-0542-0 reported similar results, with 63% of patients having little knowledge about this document, thus corroborating the findings of the present study.

However, as shown by Garbin and collaborators1111. Garbin CAS, Garbin AJI, Saliba NA, Zina LG, Goncalves PE. El consentimiento informado en la clínica odontológica. Acta Odontol Venez [Internet]. 2007 [acesso 14 mar 2021];45(1):37-43. Disponível: https://bit.ly/37BWuVP
https://bit.ly/37BWuVP...
, this is not a particularity of patients, for health professionals likewise present little knowledge about this document. In their study, 35% of the participants were unfamiliar with the document and 40% thought they were familiarized with it. Health professionals often consider informed consent as a legal protocol applied in complex treatments but dispensable in conventional dental and medical practices.

As provided for in the Resolution 196/1996 of the National Health Council (NHC), all research involving human participants require the informed consent of the subjects, individuals, or groups, who express their consent to participate by themselves and/or via their legal representatives1212. Conselho Nacional de Saúde. Resolução nº 196, de 10 de outubro de 1996. Aprova diretrizes e normas regulamentadoras de pesquisas envolvendo seres humanos. Diário Oficial da União [Internet]. 2006 [acesso 14 mar 2021]. Disponível: https://bit.ly/37DoqbW
https://bit.ly/37DoqbW...
. This principle is also expressed in Article 7 of the Code of Dental Ethics, where ceasing to adequately clarify the treatment purposes, risks, costs, and alternatives to the patient constitutes an ethical violation, as well as initiating any dental procedure or treatment without the prior consent of patients or their legal guardian – except in cases of urgency or emergency1313. Conselho Federal de Odontologia. Resolução nº 42, de 20 de maio de 2003. Revoga o Código de Ética Odontológica aprovado pela Resolução CFO nº 179, de 19 de dezembro de 1991 e aprova outro em substituição. Diário Oficial da União [Internet]. 2003 [acesso 10 abr 2020]. Disponível: https://bit.ly/37D5f1O
https://bit.ly/37D5f1O...
.

Despite the growing number of immigrants in Brazil, few studies address this population access to health services in the country. One of the first studies on the topic reported the difficulty faced by Bolivian immigrants working in sewing workshops in accessing health services due to the lack of documentation1414. Guerra K, Ventura M. Bioética, imigração e assistência à saúde: tensões e convergências sobre o direito humano à saúde no Brasil na integração regional dos países. Cad Saúde Coletiva [Internet]. 2017 [acesso 14 mar 2021];25:123-9. DOI: 10.1590/1414-462x201700010185 . In the present study, participants reported no access impediment in Brazil, experiencing similar care possibilities than in their country of origin.

Although a considerable number of participants reported receiving verbal information regarding care procedures, most interviewees did not sign the informed consent form. Such findings corroborate those reported in a study conducted with dentists, where most professionals (53.8%) reported not using this document in their clinical work1515. Yarid SD, Batista TS, Silva CA, Luz MN, Ribeiro WE. Uso do termo de consentimento livre e esclarecido (TCLE) por cirurgiões-dentistas em atividades clínicas. Odontol Clín-Cient [Internet]. 2012 [acesso 14 mar 2021]; 11(3): 239-42. Disponível: https://bit.ly/2VR9MLi
https://bit.ly/2VR9MLi...
. In turn, a study conducted in hospital institutions providing dental care found most of these facilities to apply the informed consent verbally at the beginning of treatment1616. Maluf F, Carvalho GP, Diniz JC Jr, Bugarin JG Jr, Garrafa V. Consentimento livre e esclarecido em odontologia nos hospitais públicos do Distrito Federal. Ciênc Saúde Coletiva [Internet]. 2007 [acesso 14 mar 2021];12(6):1737-46. DOI: 10.1590/S1413-81232007000600034 .

In dental practice, dentists rarely present their patients with contracts or written consent forms. As the contract, the consent form arises from a voluntary agreement based on mutual trust, whereby the patient exercises the principle of autonomy by demonstrating compliance with the treatment33. Garbin CAS, Gonçalves E, Garbin AJI. Consentimiento informado en la práctica odontológica brasileña: sus aspectos éticos y legales. Acta Odontol Venez [Internet]. 2006 [acesso 14 mar 2021];44(2):261-4. Disponível: https://bit.ly/3yILSjZ
https://bit.ly/3yILSjZ...
, 1717. Celedón L C. Relación médico paciente. Rev Otorrinolaringol Cir Cabeza Cuello [Internet]. 2016 [acesso 14 mar 2021];76(1):51-4. DOI: 10.4067/S0718-48162016000100007 , 1818. Garbin CAS, Garbin AJI, Moimaz SAS, Carmo MP. Bioética e HIV∕AISD: discriminação no atendimento aos portadores. Rev. bioét. (Impr.) [Internet]. 2009 [acesso 14 mar 2021];17(3):511-22. Disponível: https://bit.ly/3jS1j2S
https://bit.ly/3jS1j2S...
.

Final considerations

Although fundamental to the medical and dental practice, protecting the patient and providing evidence for the professional, the informed consent form remains little known and understood by the immigrant population. Immigrants have access to both public and private care in Brazil, but health authorities must implement policies addressing the needs of this population. In most cases, patients undergoing medical and dental treatments do not sign this document, simply providing verbal consent.

Considering that a well-designed consent term and patient knowledge promotes the successful performance of procedures, physicians and dentists need to adopt measures for a safe professional practice.

Referencias

  • 1
    Diez Bueso L. La garantía institucional de la autonomía del paciente. Rev Bioét Derecho [Internet]. 2012 [acesso 14 mar 2021];(25):33-44. DOI: 10.4321/S1886-58872012000200004
  • 2
    O que se entende por princípio do consentimento informado? JusBrasil [Internet]. 2008 [acesso 14 mar 2021]. Disponível: https://bit.ly/3mbJU8r
    » https://bit.ly/3mbJU8r
  • 3
    Garbin CAS, Gonçalves E, Garbin AJI. Consentimiento informado en la práctica odontológica brasileña: sus aspectos éticos y legales. Acta Odontol Venez [Internet]. 2006 [acesso 14 mar 2021];44(2):261-4. Disponível: https://bit.ly/3yILSjZ
    » https://bit.ly/3yILSjZ
  • 4
    Oppliger A W, Bascuñán R ML. Consentimiento informado: percepción de médicos, enfermeras y padres sobre el proceso comunicativo. Rev Chil Pediatr [Internet]. 2011 [acesso 14 mar 2021];82(3):204-10. DOI: 10.4067/S0370-41062011000300005
  • 5
    Rillo AG. Consentimiento informado: aspectos éticos y legislación en la odontología. Humanidad Med [Internet]. 2013 [acesso 14 mar 2021];13(2):393-411. Disponível: https://bit.ly/3g02koq
    » https://bit.ly/3g02koq
  • 6
    Bittencourt ALP, Quintana AM, Velho MTAC, Goldim JR, Wottrich LAF et al. Consentimento livre e esclarecido e avaliação do grau de expressão de coerção em assistência. Rev Bioét Derecho [Internet]. 2014 [acesso 14 mar 2021];(31):81-9. DOI: 10.4321/S1886-58872014000200007
    » https://doi.org/10.4321/S1886-58872014000200007
  • 7
    Garbin CAS, Garbin AJI, Santos C, Gonçalves PE. Percepción del cirujano-dentista respecto del uso del consentimiento informado en el tratamiento odontológico. Acta Bioeth [Internet]. 2009 [acesso 14 mar 2021];15(1):106-11. DOI: 10.4067/S1726-569X2009000100014
  • 8
    Arbelaez Rudas M. Inmigración y salud: la protección de la salud frente a la diversidad cultural. Rev Bioét Derecho [Internet]. 2006 [acesso 14 mar 2021];(7):1-9. DOI: 10.1344/rbd2006.7.7864
    » https://doi.org/10.1344/rbd2006.7.7864
  • 9
    Vizcaya Benavides DM, Zúñiga Villarreal FA, Pérez Cortés P, Cobos Aguilar H. Conocimiento de los pacientes sobre el consentimiento informado en un hospital general. Rev Fac Med (Mex) [Internet]. 2014 [acesso 14 mar 2021];57(5):5-13. Disponível: https://bit.ly/3fZLvdw
    » https://bit.ly/3fZLvdw
  • 10
    Leclercq WK, Keulers BJ, Scheltinga MR, Spauwen PH, van der Wilt GJ. A review of surgical informed consent: past, present, and future: a quest to help patients make better decisions. World J Surg [Internet]. 2010 [acesso 14 mar 2021];34(7):1406-15. DOI: 10.1007/s00268-010-0542-0
  • 11
    Garbin CAS, Garbin AJI, Saliba NA, Zina LG, Goncalves PE. El consentimiento informado en la clínica odontológica. Acta Odontol Venez [Internet]. 2007 [acesso 14 mar 2021];45(1):37-43. Disponível: https://bit.ly/37BWuVP
    » https://bit.ly/37BWuVP
  • 12
    Conselho Nacional de Saúde. Resolução nº 196, de 10 de outubro de 1996. Aprova diretrizes e normas regulamentadoras de pesquisas envolvendo seres humanos. Diário Oficial da União [Internet]. 2006 [acesso 14 mar 2021]. Disponível: https://bit.ly/37DoqbW
    » https://bit.ly/37DoqbW
  • 13
    Conselho Federal de Odontologia. Resolução nº 42, de 20 de maio de 2003. Revoga o Código de Ética Odontológica aprovado pela Resolução CFO nº 179, de 19 de dezembro de 1991 e aprova outro em substituição. Diário Oficial da União [Internet]. 2003 [acesso 10 abr 2020]. Disponível: https://bit.ly/37D5f1O
    » https://bit.ly/37D5f1O
  • 14
    Guerra K, Ventura M. Bioética, imigração e assistência à saúde: tensões e convergências sobre o direito humano à saúde no Brasil na integração regional dos países. Cad Saúde Coletiva [Internet]. 2017 [acesso 14 mar 2021];25:123-9. DOI: 10.1590/1414-462x201700010185
  • 15
    Yarid SD, Batista TS, Silva CA, Luz MN, Ribeiro WE. Uso do termo de consentimento livre e esclarecido (TCLE) por cirurgiões-dentistas em atividades clínicas. Odontol Clín-Cient [Internet]. 2012 [acesso 14 mar 2021]; 11(3): 239-42. Disponível: https://bit.ly/2VR9MLi
    » https://bit.ly/2VR9MLi
  • 16
    Maluf F, Carvalho GP, Diniz JC Jr, Bugarin JG Jr, Garrafa V. Consentimento livre e esclarecido em odontologia nos hospitais públicos do Distrito Federal. Ciênc Saúde Coletiva [Internet]. 2007 [acesso 14 mar 2021];12(6):1737-46. DOI: 10.1590/S1413-81232007000600034
  • 17
    Celedón L C. Relación médico paciente. Rev Otorrinolaringol Cir Cabeza Cuello [Internet]. 2016 [acesso 14 mar 2021];76(1):51-4. DOI: 10.4067/S0718-48162016000100007
  • 18
    Garbin CAS, Garbin AJI, Moimaz SAS, Carmo MP. Bioética e HIV∕AISD: discriminação no atendimento aos portadores. Rev. bioét. (Impr.) [Internet]. 2009 [acesso 14 mar 2021];17(3):511-22. Disponível: https://bit.ly/3jS1j2S
    » https://bit.ly/3jS1j2S
  • Approval CEP/CAAE 10334919.0.0000.5420

Publication Dates

  • Publication in this collection
    18 Oct 2021
  • Date of issue
    Jul-Sep 2021

History

  • Received
    10 Dec 2020
  • Reviewed
    3 Aug 2021
  • Accepted
    9 Aug 2021
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