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Factors related to the perceived stigmatization of people living with HIV

Abstract

OBJECTIVE

Analyzing the factors related to perceived stigmatization of people living with HIV.

METHOD

A cross-sectional study conducted from September of 2014 to December 2015 with users from a specialized service in Minas Gerais. Data were collected through individual instrument application, organized in Microsoft Office Excel(r) 2010 spreadsheets and processed on IBM(r) SPSS 23.0. Descriptive statistics and multiple linear regression method were used for data analysis, adopting statistical significance set at 5.0% (p≤0.05). The study development met research ethics standards.

RESULTS

258 users participated in the study. Most were males between 40 and 49 years of age, single, with low educational level and income. Being between 40 and 49 years of age and having been hospitalized for complications related to HIV were positively associated predictors to increased stigmatization; while not having comorbidities and not being aware of exposure to HIV were predictors associated to reduced stigmatization.

CONCLUSION

Given these results, we highlight that stigmatization can have an impact on the lives of people living with HIV, strengthening their feelings of guilt and shame, which can lead to depression, social isolation and abandoning treatment and clinical follow-up.

DESCRIPTORS:
Acquired Immunodeficiency Syndrome; HIV; Social Stigma; Depression; Public Health Nursing

Resumo

OBJETIVO

Analisar os fatores relacionados com a estigmatização percebida de pessoas vivendo com HIV.

MÉTODO

Estudo transversal realizado de setembro de 2014 a dezembro de 2015 com usuários de um Serviço de Assistência Especializado em Minas Gerais. Os dados foram coletados por meio da aplicação individual do instrumento, organizados em planilhas do Microsoft Office Excel(r) 2010 e processados no IBM(r) SPSS 23.0. Para a análise dos dados utilizou-se de estatística descritiva e método de regressão linear múltipla, adotando significância estatística fixada em 5,0% (p≤0,05). O desenvolvimento do estudo atendeu às normas de ética em pesquisa.

RESULTADOS

Participaram do estudo 258 usuários. Predominaram os homens, a faixa etária de 40 a 49 anos, solteiros, de baixa escolaridade e renda. Ter idade de 40 a 49 anos e ter sido internado por complicações do HIV foram preditores associados positivamente ao aumento da estigmatização, e não apresentar comorbidades e desconhecer a exposição ao HIV foram preditores associados à diminuição da estigmatização.

CONCLUSÃO

Diante destes resultados, evidencia-se que a estigmatização pode impactar a vida de pessoas vivendo com HIV reforçando sentimentos de culpa e vergonha, o quais poderão acarretar depressão, isolamento social e interrupção do tratamento e seguimento clínico.

DESCRITORES:
Síndrome da Imunodeficiência Adquirida; HIV; Estigma Social; Depressão; Enfermagem em Saúde Pública

Resumen

OBJETIVO

Analizar los factores relacionados con la estigmatización percibida de personas que viven con el VIH.

MÉTODO

Estudio transversal realizado de septiembre de 2014 a diciembre de 2015 con usuarios de un Servicio de Asistencia Especializada en Minas Gerais. Los datos fueron recolectados por medio de la aplicación individual del instrumento, organizados en hojas de cálculo de Microsoft Office Excel(r) 2010 y procesados en IBM(r) SPSS 23.0. Para el análisis de los datos se utilizó estadística descriptiva y método de regresión lineal múltiple, adoptando significancia estadística fijada en 5,0% (p≤0,05). El desarrollo del estudio atendió a las normas de ética en investigación.

RESULTADOS

Participaron del estudio 258 usuarios. Predominaron los hombres, el grupo de edad de 40 a 49 años, solteros, de baja escolaridad y renta. La edad de 40 a 49 años y haber sido internado por complicaciones del VIH fueron predictores asociados positivamente al aumento de la estigmatización, y no presentar comorbilidades y desconocer la exposición al VIH fueron predictores asociados a la disminución de la estigmatización.

CONCLUSIÓN

Ante estos resultados, se evidencia que la estigmatización puede impactar la vida de personas que viven con el VIH reforzando sentimientos de culpa y vergüenza, que pueden acarrear depresión, aislamiento social e interrupción del tratamiento y seguimiento clínico.

DESCRIPTORES:
Síndrome de Inmunodeficiencia Adquirida; VIH; Estigma Social; Depresión; Enfermería en Salud Pública

Introduction

With the appearance of AIDS in the 1980s as an epidemic apparently restricted to homosexuals, drug users and sex workers, a stigma against people living with human immunodeficiency virus (HIV) also emerged11 Mukolo A, Torres I, Bechtel RM, Sidat M, Vergara AE. Consensus on context- specific strategies for reducing the stigma of human immunodeficiency virus/acquired immunodeficiency syndrome in Zambezia Province, Mozambique. SAHARA J. 2013;10(3):119-30.

2 Naciones Unidas. Programa Conjunto de las Naciones Unidas sobre el VIH/Sida (ONUSIDA). El sida en sifras 2015 [Internet]. Ginebra; 2015 [citado 2016 jul. 18]. Disponible en: Disponible en: http://www.unaids.org/sites/default/files/media_asset/AIDS_by_the_numbers_2015_es.pdf
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-33 Varas-Díaz N, Neilands TB, Rodríguez-Madera SL, Padilla M.The role of emotions in the reduction of HIV/AIDS stigma among physicians in training. AIDS Care. 2016;28(3):376-83..

A stigma is considered a defect or a label that defines others, diminishing them through negative stereotypes, discriminatory and prejudiced labels11 Mukolo A, Torres I, Bechtel RM, Sidat M, Vergara AE. Consensus on context- specific strategies for reducing the stigma of human immunodeficiency virus/acquired immunodeficiency syndrome in Zambezia Province, Mozambique. SAHARA J. 2013;10(3):119-30.,33 Varas-Díaz N, Neilands TB, Rodríguez-Madera SL, Padilla M.The role of emotions in the reduction of HIV/AIDS stigma among physicians in training. AIDS Care. 2016;28(3):376-83.-44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3. Thus, in addition to the clinical changes that HIV can bring to people's lives, the stigma can also cause serious social and psychological damage due to feelings of inferiority11 Mukolo A, Torres I, Bechtel RM, Sidat M, Vergara AE. Consensus on context- specific strategies for reducing the stigma of human immunodeficiency virus/acquired immunodeficiency syndrome in Zambezia Province, Mozambique. SAHARA J. 2013;10(3):119-30.,44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3-55 Sousa PKR, Torres DVM, Miranda KCL, Franco AC. Vulnerabilidades presentes no percurso vivenciado pelos pacientes com HIV/AIDS em falha terapêutica. Ver Bras Enferm. 2013;66(2):202-7., which significantly increase anxiety, loneliness, depression and the desire to die, reducing self-esteem and self-confidence, which lead to social and sexual isolation of people living with HIV44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3,66 Lee SJ, Li L, Lin C, Tuan LA. Challenges facing HIV-positive persons who use drugs and their families in Vietnam. AIDS Care. 2015;27(3):283-7..

It is estimated that 36.9 million people live with HIV worldwide22 Naciones Unidas. Programa Conjunto de las Naciones Unidas sobre el VIH/Sida (ONUSIDA). El sida en sifras 2015 [Internet]. Ginebra; 2015 [citado 2016 jul. 18]. Disponible en: Disponible en: http://www.unaids.org/sites/default/files/media_asset/AIDS_by_the_numbers_2015_es.pdf
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. Brazil is among 30 countries that comprise 89% of HIV world registries77 Boletim Epidemiológico AIDS e DST. Brasília: Ministério da Saúde, Secretaria de Vigilância em Saúde, Departamento de DST, Aids e Hepatites Virais. 2015;4(1). with 798,366 cases77 Boletim Epidemiológico AIDS e DST. Brasília: Ministério da Saúde, Secretaria de Vigilância em Saúde, Departamento de DST, Aids e Hepatites Virais. 2015;4(1).. Despite this significant number, a decrease in social impacts of HIV have been observed in many regions of the world88 Baggaley R, Dalal S, Johnson C, MacDonald V, Mameletzis I, Rodolph M, et al. Beyond the 90-90-90: refocusing HIV prevention as part of the global HIV response. J Int AIDS Soc. 2016;19(1):21348. since 2004, including in Brazil, with a 42% decrease in AIDS-related deaths22 Naciones Unidas. Programa Conjunto de las Naciones Unidas sobre el VIH/Sida (ONUSIDA). El sida en sifras 2015 [Internet]. Ginebra; 2015 [citado 2016 jul. 18]. Disponible en: Disponible en: http://www.unaids.org/sites/default/files/media_asset/AIDS_by_the_numbers_2015_es.pdf
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.

Despite epidemiological indicators pointing to a reduction in the number of cases of the disease in the country and in other regions, its stigma is still seen as a major barrier for infection control66 Lee SJ, Li L, Lin C, Tuan LA. Challenges facing HIV-positive persons who use drugs and their families in Vietnam. AIDS Care. 2015;27(3):283-7.. In fact, in addition to causing financial deficits due to the risk of employees being fired44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3-55 Sousa PKR, Torres DVM, Miranda KCL, Franco AC. Vulnerabilidades presentes no percurso vivenciado pelos pacientes com HIV/AIDS em falha terapêutica. Ver Bras Enferm. 2013;66(2):202-7., the disease can also interfere with affective and social relationships due to feelings of guilt and shame which leads to the isolation of these individuals11 Mukolo A, Torres I, Bechtel RM, Sidat M, Vergara AE. Consensus on context- specific strategies for reducing the stigma of human immunodeficiency virus/acquired immunodeficiency syndrome in Zambezia Province, Mozambique. SAHARA J. 2013;10(3):119-30.,44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3-55 Sousa PKR, Torres DVM, Miranda KCL, Franco AC. Vulnerabilidades presentes no percurso vivenciado pelos pacientes com HIV/AIDS em falha terapêutica. Ver Bras Enferm. 2013;66(2):202-7.,99 Andrade RG, Iriart JAB. Estigma e discriminação: experiências de mulheres HIV positivo nos bairros populares de Maputo, Moçambique. Cad Saúde Pública. 2015;31(3):565-74., affecting adherence to clinical and antiretroviral follow-up by many HIV positive persons11 Mukolo A, Torres I, Bechtel RM, Sidat M, Vergara AE. Consensus on context- specific strategies for reducing the stigma of human immunodeficiency virus/acquired immunodeficiency syndrome in Zambezia Province, Mozambique. SAHARA J. 2013;10(3):119-30.. In view of the above and the need for understanding aspects related to stigmatization, the objective of this study was to analyze factors related to the perceived stigmatization of people living with HIV.

Method

This is a cross-sectional and analytical study carried out in an outpatient clinic for people living with HIV from the State health network, a reference to 24 municipalities in the southwestern region of Minas Gerais. Since its creation in 1992 until September 2014, 758 cases of HIV positive people had already been registered in the region.

Study participants were service users who met the inclusion criteria: being aged 18 or older; being on antiretroviral therapy (ART) for at least 6 months; and being under regular outpatient clinical follow-up. Thus, Pharmacy Service records, monthly withdrawal of antiretrovirals, as well as the data in the attendance records at the medical appointments every 3 months in the unit were considered. Exclusion criteria were: individuals in situations of confinement such as inmates, those institutionalized or residents of support homes enrolled in the service, since they do not attend the outpatient clinic.

Of the total of 338 registered users in the service from September 2014 to December 2015, 278 were eligible and agreed to participate in the study. Of these, 20 were part of the pilot study and 258 (76.3%) were study participants.

All participants were interviewed in a private room at the outpatient clinic using a semi-structured questionnaire prepared after a literature review, consisting of the variables associated with HIV stigmatization: sociodemographic variables (gender, age, education level, income, work situation, religion and relationship with family members with HIV), affective-sexual life (sexual orientation and sexual partnership), drug use, epidemiological variables (diagnosis time, who knows about the diagnosis and exposure to HIV), treatment discontinuation and clinical variables (hospitalization and comorbidities). We chose to analyze the presence of sexual partnerships and drug use in the last 12 months in order to avoid participants' memory bias. Next, the HIV Stigma Scale1010 Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: Psycometric Assessment of the HIV Stigma Scale. Res Nurs Health. 2001;24(6):518-29.) was applied, which is composed of 40 items distributed into the following domains: Personalized Stigma, Disclosure, Negative self-image and Public Attitudes. It is a four-point Likert scale of: I totally disagree (1), I disagree (2), I agree (3) and I totally agree (4); so that Stigma Scale dimensions are measured in scores ranging from one (lesser experienced stigma) to four (the most experienced stigma).

Data were analyzed using the IBM(r) SPSS program version 23.0. Population variables were presented as frequency distributions. The reliability analysis of the Stigma Scale was performed using the Cronbach alpha coefficient and the scores were calculated following the mean of the scale domain items.

The multiple linear regression method with two adjustments was applied for the combined influence of population variables on the Stigma Scale using only the significant variables in both. The linear regression assumptions were met and a statistical significance of 5.0% was adopted (p<0.05).

The project was approved by the Research Ethics Committee (CAAE 31107614.2.0000.5112) in compliance with the ethical requirements established by resolution 466/12 of the National Health Council.

Results

Of the 258 participants, 145 (56.2%) were males, 93 (36.0%) were between 40 and 49 years old, 126 (48.9%) reported having 0 to 5 full years of education, 163 (63.2%) received up to one minimum wage per month, 73 (28.3%) reported being unemployed or taking time off work, 195 (75.6%) mentioned having a religion, and 72 (27.9%) lived with relatives with HIV.

Regarding their affective-sexual life, 50 (19.4%) reported being homosexual or bisexual and 148 (57.4%) reported having sexual partners in the last 12 months. Of the total, 74 (28.7%) confirmed consumption of licit or illicit drugs in the last 12 months, and 202 (78.3%) believed that they were sexually infected. It was found that 198 (76.7%) participants disclosed the diagnosis of HIV infection only to their family, and 95 (36.8%) had lived with this diagnosis for over 10 years.

Regarding antiretroviral treatment, 180 (69.8%) reported never having stopped using ART. Comorbidities were reported by 45 (17.4%) participants and nearly one-third reported hospitalizations due to HIV/AIDS-related complications.

For Stigma Scale dimensions (Table 1), the domains that presented the lowest median and mean values were Personalized Stigma (Md=2.3, M=2.3) and Negative Self-image (Md=2.4; M=2.4), while the domain Disclosure had the highest median and mean values (Md=2.8, M=2.8).

Table 1
Distribution of the Stigma Scale domain scores applied to people living with HIV from a specialized outpatient clinic - Passos, MG, Brazil, 2014-2015.

In the multivariate analysis (Table 2), the predictors that were positively associated with the mean increase in stigmatization were age between 40 and 49 years (β=0233; p=0.006) and the presence of hospitalizations due to HIV complications (β=0.156, p=0.042). The predictor that was negatively associated with stigmatization was the absence of comorbidities (β=-0.264, p=0.004).

The domain Personalized Stigma, which evaluated the experience of stigma through negative attitudes of other people towards themselves, showed that the predictors that contributed to the average increase of the personalized stigma score were age between 40 and 49 years (β=0.390, p=0.000) and hospitalization due to HIV complications (β=0.234, p=0.018). The predictor absence of comorbidities (β=-0.321; p=0.007) was negatively associated with stigmatization.

The regression model that used the disclosure domain as a dependent variable evaluated how the person copes and how they feel about the disclosure or the possibility of revealing their seropositivity, where not being aware about the form of HIV exposure (β=-0.367; p=0.034) was associated with a decrease in stigmatization.

As for the negative self-image domain evaluating feelings of self-devaluation and self-exclusion, the predictors associated with mean increase of stigmatization were age between 40 and 49 years (β=0.232; p=0.005) and previous hospitalization (β=0.152; p=0.042). On the other hand, absence of comorbidities (β=-0.310; p=0.001) was a predictor that was associated with a mean decrease in stigmatization.

In analyzing the predictors associated to the public attitudes domain which evaluated the respondent's perception of how people consider those who are HIV-positive, we found that being between 40 and 49 years of age (β=0.267, p=0.005) influenced the mean increase in stigmatization, and not presenting comorbidities (β=-0.292; p=0.004) decreased the mean of stigmatization by negatively influencing it.

Table 2
Statistically significant variables with overall scores and domain scores of the Stigma Scale in multiple linear regression analysis - Passos, MG, Brazil, 2014-2015.

Discussion

The characteristics found in this population were similar to those of other national and international studies with people living with HIV, being predominantly adult males with low education and income99 Andrade RG, Iriart JAB. Estigma e discriminação: experiências de mulheres HIV positivo nos bairros populares de Maputo, Moçambique. Cad Saúde Pública. 2015;31(3):565-74.,1111 Okuno MPF, Gomes AC, Meazzini L, Scherrer Júnior G, Belasco Junior D, Belasco AGS. Qualidade de vida de pacientes idosos vivendo com HIV/AIDS. Cad Saúde Pública. 2014;30(7):1551-9.-1212 Harper GM, Lemos D, Hosek SG. Stigma reduction in adolescents and young adults newly diagnosed with HIV: findings from the Project ACCEPT Intervention. AIDS Patient Care STDS. 2015;28(10):543-54., heterosexual22 Naciones Unidas. Programa Conjunto de las Naciones Unidas sobre el VIH/Sida (ONUSIDA). El sida en sifras 2015 [Internet]. Ginebra; 2015 [citado 2016 jul. 18]. Disponible en: Disponible en: http://www.unaids.org/sites/default/files/media_asset/AIDS_by_the_numbers_2015_es.pdf
http://www.unaids.org/sites/default/file...
,77 Boletim Epidemiológico AIDS e DST. Brasília: Ministério da Saúde, Secretaria de Vigilância em Saúde, Departamento de DST, Aids e Hepatites Virais. 2015;4(1)., with the presence of sexual partners1313 Yaya I, Saka B, Landoh DE, Patchali PM, Makawa MS, Senanou S, et al. Sexual risk behavior among people living with HIV and AIDS on antiretroviral therapy at the regional hospital of Sokodé, Togo. BMC Public Health. 2014;14:636. , low drug use1313 Yaya I, Saka B, Landoh DE, Patchali PM, Makawa MS, Senanou S, et al. Sexual risk behavior among people living with HIV and AIDS on antiretroviral therapy at the regional hospital of Sokodé, Togo. BMC Public Health. 2014;14:636. , with good adherence to ART1313 Yaya I, Saka B, Landoh DE, Patchali PM, Makawa MS, Senanou S, et al. Sexual risk behavior among people living with HIV and AIDS on antiretroviral therapy at the regional hospital of Sokodé, Togo. BMC Public Health. 2014;14:636. -1414 Balasundaram A, Sarkar S, Hamide A, Lakshminarayanan S. Socioepidemiologic profile and behavior treatment-seeking of patients with HIV/AIDS in a tertiary-care hospital in south India. J Health Popul Nutr. 2014;32(4):587-94. and low incidence of comorbidities1414 Balasundaram A, Sarkar S, Hamide A, Lakshminarayanan S. Socioepidemiologic profile and behavior treatment-seeking of patients with HIV/AIDS in a tertiary-care hospital in south India. J Health Popul Nutr. 2014;32(4):587-94., where the majority chose to disclose the diagnosis of HIV infection only to family members44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3,1414 Balasundaram A, Sarkar S, Hamide A, Lakshminarayanan S. Socioepidemiologic profile and behavior treatment-seeking of patients with HIV/AIDS in a tertiary-care hospital in south India. J Health Popul Nutr. 2014;32(4):587-94..

In relation to the Stigma Scale, the highest mean distribution values of means and medians in the disclosure domain were similar to those of another study with adults living with HIV1010 Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: Psycometric Assessment of the HIV Stigma Scale. Res Nurs Health. 2001;24(6):518-29., and one performed with young American adolescents and young adults recently diagnosed with HIV1515 Silva LMS, Moura MAV, Pereira MLD. Cotidiano de mulheres após contágio pelo hiv/aids: subsídios norteadores da assistência de enfermagem. Texto Contexto Enferm. 2013;22(2):335-42., showing that seropositivity disclosure is still an important difficulty experienced by HIV positive people44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3,99 Andrade RG, Iriart JAB. Estigma e discriminação: experiências de mulheres HIV positivo nos bairros populares de Maputo, Moçambique. Cad Saúde Pública. 2015;31(3):565-74. marked by fear of non-acceptance, as well as feelings of guilt and shame55 Sousa PKR, Torres DVM, Miranda KCL, Franco AC. Vulnerabilidades presentes no percurso vivenciado pelos pacientes com HIV/AIDS em falha terapêutica. Ver Bras Enferm. 2013;66(2):202-7.,99 Andrade RG, Iriart JAB. Estigma e discriminação: experiências de mulheres HIV positivo nos bairros populares de Maputo, Moçambique. Cad Saúde Pública. 2015;31(3):565-74..

In the analysis stratified by domain, we found that the age group between 40 and 49 years of age and previous hospitalization due to complications from HIV/AIDS contributed to stigmatization in the overall score, and for the "personalized stigma" and "negative self-image" domains. In the "public attitudes" domain, the age group 40-49 years was the only positive predictor. On the other hand, not presenting comorbidities contributed to a reduction of stigmatization in the overall score and in the "personalized stigma", "negative self-image" and "public attitudes" domains. Finally, not being aware of how they were infected also contributes to stigmatization reduction in the "disclosure" domains.

Regarding the increase in perceived stigmatization among people aged between 40 and 49 years, seeing as this is an age group that involves adults at a productive age, it is expected that the increase in stigmatization is related to economic, affective and social factors, which are probably linked to increased feelings of devaluation, depression, and social isolation responsible for the high morbidity and mortality found in this age group99 Andrade RG, Iriart JAB. Estigma e discriminação: experiências de mulheres HIV positivo nos bairros populares de Maputo, Moçambique. Cad Saúde Pública. 2015;31(3):565-74.,1111 Okuno MPF, Gomes AC, Meazzini L, Scherrer Júnior G, Belasco Junior D, Belasco AGS. Qualidade de vida de pacientes idosos vivendo com HIV/AIDS. Cad Saúde Pública. 2014;30(7):1551-9..

Thus, because they are economically active, people can be confronted with the fear of not being socially accepted and let go from their jobs, as seropositivity is still a cause of high unemployment rates, and can be even higher than in the general population44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3,1111 Okuno MPF, Gomes AC, Meazzini L, Scherrer Júnior G, Belasco Junior D, Belasco AGS. Qualidade de vida de pacientes idosos vivendo com HIV/AIDS. Cad Saúde Pública. 2014;30(7):1551-9.; or fear of becoming ill and unable to maintain their respective work activities, since work in addition to representing the source of income is also seen as a source of support in allowing the individual to feel economically active, in face of feeling socially disqualified11 Mukolo A, Torres I, Bechtel RM, Sidat M, Vergara AE. Consensus on context- specific strategies for reducing the stigma of human immunodeficiency virus/acquired immunodeficiency syndrome in Zambezia Province, Mozambique. SAHARA J. 2013;10(3):119-30.,1010 Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: Psycometric Assessment of the HIV Stigma Scale. Res Nurs Health. 2001;24(6):518-29.. Another persistent complaint is the difficulty of relating the disease and work due to the fear of negative attitudes from colleagues and employers with the disclosure of their diagnosis, which leads many people living with HIV who are economically active, to a feeling of self-devaluation and self-exclusion due to seropositivity55 Sousa PKR, Torres DVM, Miranda KCL, Franco AC. Vulnerabilidades presentes no percurso vivenciado pelos pacientes com HIV/AIDS em falha terapêutica. Ver Bras Enferm. 2013;66(2):202-7..

The increase in stigma can also be linked to the fear of disrupting affective relationships1111 Okuno MPF, Gomes AC, Meazzini L, Scherrer Júnior G, Belasco Junior D, Belasco AGS. Qualidade de vida de pacientes idosos vivendo com HIV/AIDS. Cad Saúde Pública. 2014;30(7):1551-9.-1212 Harper GM, Lemos D, Hosek SG. Stigma reduction in adolescents and young adults newly diagnosed with HIV: findings from the Project ACCEPT Intervention. AIDS Patient Care STDS. 2015;28(10):543-54.,1414 Balasundaram A, Sarkar S, Hamide A, Lakshminarayanan S. Socioepidemiologic profile and behavior treatment-seeking of patients with HIV/AIDS in a tertiary-care hospital in south India. J Health Popul Nutr. 2014;32(4):587-94.,1616 Andrade RFV, Araújo MAL, Vieira LJES, Reis CBS, Miranda AE. Violência por parceiro íntimo após diagnóstico de doenças sexualmente transmissíveis. Ver Saúde Pública [Internet]. 2015 [citado 2016 abr. 10];49:3. Disponível em: Disponível em: http://www.scielo.br/pdf/rsp/v49/pt_0034-8910-rsp-S0034-89102015049005424.pdf
http://www.scielo.br/pdf/rsp/v49/pt_0034...
. A study carried out with adult women in the northeast of the country1515 Silva LMS, Moura MAV, Pereira MLD. Cotidiano de mulheres após contágio pelo hiv/aids: subsídios norteadores da assistência de enfermagem. Texto Contexto Enferm. 2013;22(2):335-42. highlighted how the discovery of HIV can change a person's life, disorganizing affective relationships. This leads many people to fear disclosure of the diagnosis to their spouses due to fear of abandonment44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3-55 Sousa PKR, Torres DVM, Miranda KCL, Franco AC. Vulnerabilidades presentes no percurso vivenciado pelos pacientes com HIV/AIDS em falha terapêutica. Ver Bras Enferm. 2013;66(2):202-7.,1212 Harper GM, Lemos D, Hosek SG. Stigma reduction in adolescents and young adults newly diagnosed with HIV: findings from the Project ACCEPT Intervention. AIDS Patient Care STDS. 2015;28(10):543-54.. In disclosing HIV, there is also the fear of people's negative attitudes towards those living with HIV, since accusations of promiscuity, prostitution and even infidelity are associated with HIV which can lead people to social isolation through shame, fear and depression1212 Harper GM, Lemos D, Hosek SG. Stigma reduction in adolescents and young adults newly diagnosed with HIV: findings from the Project ACCEPT Intervention. AIDS Patient Care STDS. 2015;28(10):543-54.,1515 Silva LMS, Moura MAV, Pereira MLD. Cotidiano de mulheres após contágio pelo hiv/aids: subsídios norteadores da assistência de enfermagem. Texto Contexto Enferm. 2013;22(2):335-42.-1616 Andrade RFV, Araújo MAL, Vieira LJES, Reis CBS, Miranda AE. Violência por parceiro íntimo após diagnóstico de doenças sexualmente transmissíveis. Ver Saúde Pública [Internet]. 2015 [citado 2016 abr. 10];49:3. Disponível em: Disponível em: http://www.scielo.br/pdf/rsp/v49/pt_0034-8910-rsp-S0034-89102015049005424.pdf
http://www.scielo.br/pdf/rsp/v49/pt_0034...
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Regarding the increase in perceived stigmatization in the presence of hospitalizations due to HIV complications, a study of patients in Argentina1717 Passerino LM. Imaginarios, biomedicina y normatividad: una respuesta a los procesos de estigmatización y discriminación por VIH. Ver Cienc Salud. 2013;11(2):217-33.) and health professionals in Brazil1818 Zambenedetti G, Both NS. A via que facilita é a mesma que dificulta: estigma e atenção em HIV-Aids na Estratégia Saúde da Família - ESF. Fractal Ver Psicol. 2013;25(1):41-58. revealed the negative representation of hospitalization for family members and people living with HIV. Despite the specialized and necessary care for the treatment, patients may be isolated from their social environment during the period of hospitalization, and thus are at a higher risk of having to disclose their HIV positive diagnosis to health professionals and other patients1717 Passerino LM. Imaginarios, biomedicina y normatividad: una respuesta a los procesos de estigmatización y discriminación por VIH. Ver Cienc Salud. 2013;11(2):217-33.-1818 Zambenedetti G, Both NS. A via que facilita é a mesma que dificulta: estigma e atenção em HIV-Aids na Estratégia Saúde da Família - ESF. Fractal Ver Psicol. 2013;25(1):41-58..

A study conducted in southern Brazil with 15 family caregivers of hospitalized children living with HIV identified that in addition to feelings of isolation and abandonment during hospitalization, family members still mentioned the stigma and prejudiced behavior of health professionals, reinforcing the feelings of error and guilt for seropositivity1919 Pacheco BP, Gomes GC, Xavier DM, Nobre CMG, Aquino DR. Difficulties and facilities of the family to care for children with HIV/AIDS. Esc Anna Nery. 2016;20(2):378-83.. Thus, during hospitalizations due to HIV complications, in addition to a sense of powerlessness in the face of AIDS, people still face hopelessness and anguish over living with HIV1717 Passerino LM. Imaginarios, biomedicina y normatividad: una respuesta a los procesos de estigmatización y discriminación por VIH. Ver Cienc Salud. 2013;11(2):217-33..

The low incidence of comorbidities was an expected outcome in this study, as most participants did not use drugs, had not stopped ART, and had not been hospitalized due to HIV complications. The absence of comorbidities predictor was related to a decrease in the stigmatization mean, since in addition to a lack of pathological signs and symptoms being a good health indicator, it helped hide the diagnosis by maintaining the confidentiality of HIV infection, preserving people from discriminatory situations1818 Zambenedetti G, Both NS. A via que facilita é a mesma que dificulta: estigma e atenção em HIV-Aids na Estratégia Saúde da Família - ESF. Fractal Ver Psicol. 2013;25(1):41-58.,2020 Sousa LMS, Silva LS, Palmeira AT. Representações sociais de caminhoneiros de rota curta sobre HIV/AIDS. Psicol Soc. 2014;26(2):346-55. .

In a study carried out in Mozambique, women who had signs and symptoms suggesting AIDS such as weight loss and fever, in addition to feelings of hopelessness in the face of the "bad", "incurable" disease that leads to death2020 Sousa LMS, Silva LS, Palmeira AT. Representações sociais de caminhoneiros de rota curta sobre HIV/AIDS. Psicol Soc. 2014;26(2):346-55. , also felt guilty and devalued because they were labeled in the community and strongly stigmatized for presenting signs that exposed their condition of seropositivity2121 Pereira CR, Monteiro SS. A criminalização da transmissão do HIV no Brasil: avanços, retrocessos e lacunas. Physis. 2015;25(4):1185-205. .

Thus, avoiding illness and correctly adhering to ART does not only depend on information and on the individual's posture, but also on many structural factors which are linked to the stigma and perceptions of the disease, and affect individuals regardless of their will44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3,1414 Balasundaram A, Sarkar S, Hamide A, Lakshminarayanan S. Socioepidemiologic profile and behavior treatment-seeking of patients with HIV/AIDS in a tertiary-care hospital in south India. J Health Popul Nutr. 2014;32(4):587-94.. As comorbidities weaken the image of the individual, they can also lead to social isolation, feelings of anguish and depression, negatively impacting the life of this individual44 Méda ZC, Somé T, Sombié I, Maré D, Morisky DE, Chen YMA. Patients infected by tuberculosis and human immunodeficiency virus facing their disease, their reactions to disease diagnosis and its implication about their families and communities, in Burkina Faso: a mixed focus group and cross sectional study. BMC Res Notes. 2016;9:3,99 Andrade RG, Iriart JAB. Estigma e discriminação: experiências de mulheres HIV positivo nos bairros populares de Maputo, Moçambique. Cad Saúde Pública. 2015;31(3):565-74.,1818 Zambenedetti G, Both NS. A via que facilita é a mesma que dificulta: estigma e atenção em HIV-Aids na Estratégia Saúde da Família - ESF. Fractal Ver Psicol. 2013;25(1):41-58..

Not being aware about the category of HIV exposure was also related to a decrease in stigmatization mean. When people were unable to identify the environment in which the viral infection occurred, they felt "victimized" and felt less guilty for having contracted HIV2020 Sousa LMS, Silva LS, Palmeira AT. Representações sociais de caminhoneiros de rota curta sobre HIV/AIDS. Psicol Soc. 2014;26(2):346-55. .

Thus, in the stigmatization process, individuals linked to the spread of HIV at the beginning of the epidemic such as homosexuals, prostitutes and drug users in addition to spouses with an extramarital sex life, are seen as deserving it by law due to morally reprehensible behavior, being guilty for having HIV even before the infection; while children, hemophiliacs, faithful spouses, and marital relationships are seen as innocent people who do not deserve to be infected1111 Okuno MPF, Gomes AC, Meazzini L, Scherrer Júnior G, Belasco Junior D, Belasco AGS. Qualidade de vida de pacientes idosos vivendo com HIV/AIDS. Cad Saúde Pública. 2014;30(7):1551-9.,2121 Pereira CR, Monteiro SS. A criminalização da transmissão do HIV no Brasil: avanços, retrocessos e lacunas. Physis. 2015;25(4):1185-205. .

Despite being closely linked to the stigmatization sensations of people living with HIV, other variables in this study such as having a religion, sexual orientation, drug use and discontinuing ART were not significant with the participating population.

We found that most had a religion, similar to other studies of people with HIV1414 Balasundaram A, Sarkar S, Hamide A, Lakshminarayanan S. Socioepidemiologic profile and behavior treatment-seeking of patients with HIV/AIDS in a tertiary-care hospital in south India. J Health Popul Nutr. 2014;32(4):587-94.,2222 Cunha GH, Fiuza MLT, Gir E, Aquino VER, Pinheiro AKB, Galvão MTG. Quality of life of men with AIDS and the model of social determinants of health. Rev Latino Am Enfermagem. 2015;23(2):183-91.-2323 Passos SMK, Souza LDM. Avaliação da qualidade de vida e seus determinantes entre pessoas vivendo com HIV/AIDS no Sul do Brasil. Cad Saúde Pública. 2015;31(4): 800-14. and other studies with people living in similar situations such as cancer patients2424 Mesquita AC, Chaves ECL, Avelino CCV, Nogueira DA, Panzini RG, Carvalho EC. The use of religious/spiritual coping by cancer patients on chemotherapy. Ver Latino Am Enfermagem. 2013;21(2):539-45. and chronic renal disease patients2525 Souza Junior EA, Trombini DSV, Mendonça ARA, Atzingen ACV. Religion in the treatment of chronic kidney disease: a comparison between doctors and patients. Ver Bioética. 2015;23(3):615-22. , so that clinical evolution and the course of serious illnesses lead to the rediscovery of the importance of spirituality, strengthening hope in enduring physical and emotional distress related to the disease and treatment2424 Mesquita AC, Chaves ECL, Avelino CCV, Nogueira DA, Panzini RG, Carvalho EC. The use of religious/spiritual coping by cancer patients on chemotherapy. Ver Latino Am Enfermagem. 2013;21(2):539-45.-2525 Souza Junior EA, Trombini DSV, Mendonça ARA, Atzingen ACV. Religion in the treatment of chronic kidney disease: a comparison between doctors and patients. Ver Bioética. 2015;23(3):615-22. .

Although most participants in this study were heterosexual, which can be justified by the stimulus to early sexuality and the possibility of paid sex2626 Villela WV, Barbosa RM. Prevenção da transmissão heterossexual do HIV entre mulheres: é possível pensar estratégias sem considerar suas demandas reprodutivas? Rev Bras Epidemiol. 2015;18 Supl.1:131-42., homosexuals are the ones who are strongly stigmatized and linked to large manifestations of exclusion and blamed for HIV infection2222 Cunha GH, Fiuza MLT, Gir E, Aquino VER, Pinheiro AKB, Galvão MTG. Quality of life of men with AIDS and the model of social determinants of health. Rev Latino Am Enfermagem. 2015;23(2):183-91.,2727 Garcia C, Albuquerque G, Drezett J, Adami F. Health of sexual minorities in north-eastern Brazil: representations, behaviours and obstacles. Rev Bras Crescimento Desenvolv Hum. 2016;26(1):95-100; this is similar to what happens with drug users, being labelled and socially excluded66 Lee SJ, Li L, Lin C, Tuan LA. Challenges facing HIV-positive persons who use drugs and their families in Vietnam. AIDS Care. 2015;27(3):283-7.,1818 Zambenedetti G, Both NS. A via que facilita é a mesma que dificulta: estigma e atenção em HIV-Aids na Estratégia Saúde da Família - ESF. Fractal Ver Psicol. 2013;25(1):41-58.,2222 Cunha GH, Fiuza MLT, Gir E, Aquino VER, Pinheiro AKB, Galvão MTG. Quality of life of men with AIDS and the model of social determinants of health. Rev Latino Am Enfermagem. 2015;23(2):183-91.,2727 Garcia C, Albuquerque G, Drezett J, Adami F. Health of sexual minorities in north-eastern Brazil: representations, behaviours and obstacles. Rev Bras Crescimento Desenvolv Hum. 2016;26(1):95-100.

We found that interruption of ART was not predominant in this study. However, we are aware that the fear of being stigmatized and being excluded from their affective relationships lead many to abandon treatment as a way to omit disclosure of their HIV positive status55 Sousa PKR, Torres DVM, Miranda KCL, Franco AC. Vulnerabilidades presentes no percurso vivenciado pelos pacientes com HIV/AIDS em falha terapêutica. Ver Bras Enferm. 2013;66(2):202-7.,1616 Andrade RFV, Araújo MAL, Vieira LJES, Reis CBS, Miranda AE. Violência por parceiro íntimo após diagnóstico de doenças sexualmente transmissíveis. Ver Saúde Pública [Internet]. 2015 [citado 2016 abr. 10];49:3. Disponível em: Disponível em: http://www.scielo.br/pdf/rsp/v49/pt_0034-8910-rsp-S0034-89102015049005424.pdf
http://www.scielo.br/pdf/rsp/v49/pt_0034...
.

Conclusion

The results show that being aged between 40 and 49 years and having been hospitalized for HIV complications were positively associated predictors for increased stigmatization, while not presenting comorbidities and not being aware of HIV exposure were predictors associated with decreased perceived stigmatization.

Thus, the analyzes suggest that stigmatization can impact the lives of people living with HIV by generating feelings of guilt and inferiority that can lead to depression and social isolation, impacting adherence to treatment and clinical follow-up of these people.

Thus, in addition to the possibility of sensitizing health professionals directly linked to the care of people living with HIV, studies of this nature can also contribute to reforming the work process organization of health professionals, subsidizing policies for user embracement and health promotion of HIV positive people, and offering a new perspective of the problems faced, thus helping to minimize stigma and positively impact the improvement of ART adherence.

Although some studies address the impact of stigmatization on the lives of people living with HIV, only a few use instruments to assess this construct in the population. Thus, despite investigating stigmatization in four important domains, the use of specific scales such as the scale used in this study do not consider a recent period which can have repercussions on responses tainted by memory bias.

The results presented portray the reality of the study population, and therefore due to the scarcity of studies of this nature in the national literature, further studies on HIV-related stigmatization in various social contexts are needed

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    Mesquita AC, Chaves ECL, Avelino CCV, Nogueira DA, Panzini RG, Carvalho EC. The use of religious/spiritual coping by cancer patients on chemotherapy. Ver Latino Am Enfermagem. 2013;21(2):539-45.
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    Villela WV, Barbosa RM. Prevenção da transmissão heterossexual do HIV entre mulheres: é possível pensar estratégias sem considerar suas demandas reprodutivas? Rev Bras Epidemiol. 2015;18 Supl.1:131-42.
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Publication Dates

  • Publication in this collection
    2017

History

  • Received
    17 Dec 2016
  • Accepted
    11 Apr 2017
Universidade de São Paulo, Escola de Enfermagem Av. Dr. Enéas de Carvalho Aguiar, 419 , 05403-000 São Paulo - SP/ Brasil, Tel./Fax: (55 11) 3061-7553, - São Paulo - SP - Brazil
E-mail: reeusp@usp.br