Abstract

This article aims to estimate the prevalence of self-reported discrimination against people with hearing loss in Brazilian health services and analyze associated factors. We conducted a cross-sectional population-based study using data from the 2013 National Health Survey. The final study sample comprised 1,464 individuals with self-reported hearing loss. Poisson regression was used to calculate crude and adjusted prevalence ratios (PR) and respective 95% confidence intervals. The overall prevalence of discrimination was 15%. Prevalence was higher among black people and respondents who reported experiencing limitations in activities of daily living. Prevalence of discrimination in Brazilian health services was highest in black people with limitations in activities of daily living. The implementation of policies and actions to address this problem is recommended, including strategies during the education and training of health professionals.

Key words:
Hearing loss; Prejudice; Social discrimination; Unified Health System; Cross-sectional studies

Introduction

According to the World Health Organisation, it is estimated that 1.1 billion people worldwide are at risk of hearing loss¹1 World Health Organization (WHO). World report on disability. Geneva: WHO; 2011.^,22 Organização Mundial da Saúde (OMS). CIF: Classificação Internacional de Funcionalidade, Incapacidade e Saúde. São Paulo: EDUSP; 2004.. In Brazil, 1.1% of the population have some degree of hearing loss and it is estimated that 21% of people with hearing loss experience severe or very severe limitations in activities of daily living³3 Brasil. Instituto Brasileiro de Geografia e Estatística (IBGE). Pesquisa Nacional de Saúde [Internet]. 2015. p. 2015. [citado 2020 jul 13]. Disponível em: https://memoria.ebc.com.br/noticias/2015/08/ibge-62-da-populacao-tem-algum-tipo-de-deficiencia
https://memoria.ebc.com.br/noticias/2015... . Hearing loss in adults is associated with cognitive decline, depression, and reduced functional status, especially among individuals who have not received proper assessment or rehabilitation. Hearing impairment can have a particularly deep social impact when compared to other handicaps⁴4 Nordvik Ø, Laugen Heggdal PO, Brännström J, Vassbotn F, Aarstad AK, Aarstad HJ. Generic quality of life in persons with hearing loss: a systematic literature review. MC Ear Nose Throat Disord 2018; 18:1..

Hearing loss can restrict participation in social activities, often leading to far-reaching social consequences such as social exclusion⁵5 Mick P, Kawachi I, Lin FR. The association between hearing loss and social isolation in older adults. Otolaryngol Head Neck Surg 2014; 150(3):378-384.. Social exclusion can be understood as discrimination, as the latter can be understood as exposure to a social experience that has a discriminatory effect on a person leading to stress. Based on this assumption, it can be understood that discrimination is a social construct that reflects the idea of injustice⁶6 Bastos JL, Faerstein E, Celeste RK, Barros AJ. Explicit discrimination and health: development and psychometric properties of an assessment instrument. Rev Saude Publica 2012; 46(2):269-278..

Social discrimination is a process by which a member of a socially defined group is treated differently because he/she is part of this group⁷7 Krieger N. A glossary for social epidemiology. J Epidemiol Community Health 2001; 55(10):693-700.. It can be viewed as the act of makingunjustified distinctionsbetween different groups of people or implicit bias toward a person. With regard to health services, discrimination is generally expressed in the form of appointment delays, inappropriate communication, refusal to provide treatment, hostile attitudes to a patient, and even harassment⁸8 FitzGerald C, Hurst S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics 2017; 18(1):19.. People may be discriminated against because of their sex, age, physical appearance, race, skin color, ethnicity, and social class, among other socially ascribed characteristics⁶6 Bastos JL, Faerstein E, Celeste RK, Barros AJ. Explicit discrimination and health: development and psychometric properties of an assessment instrument. Rev Saude Publica 2012; 46(2):269-278.. Within this context, discrimination against individuals with hearing loss is an important research topic and one that is underexplored in the literature.

Understanding the context underlying discrimination in health services and that personal traits or characteristics such as hearing impairment can either enhance or be a barrier to health care access is important for health professionals, managers, and researchers alike. The aim of this study was therefore to estimate the prevalence of discrimination against people with hearing loss in health services in Brazil and analyze possible associated factors.

Methods

We conducted a cross-sectional study using secondary data from the 2013 National Health Survey (NHS)⁹9 Szwarcwald CL, Malta DC, Pereira CA, Vieira ML, Conde WL, Souza Júnior PR, Damacena GN, Azevedo LO, Azevedo E Silva G, Theme Filha MM, Lopes Cde S, Romero DE, Almeida WS, Monteiro CA. Pesquisa Nacional de Saúde no Brasil: concepção e metodologia de aplicação. Cien Saude Colet. 2014;19(2):333-342.. Conducted by the Ministry of Health in partnership with the Brazilian Institute of Geography and Statistics (IBGE), the aim of the NHS is to assess population health status, lifestyles, health service access and utilization, preventive actions, continuity of care, and health care funding⁹9 Szwarcwald CL, Malta DC, Pereira CA, Vieira ML, Conde WL, Souza Júnior PR, Damacena GN, Azevedo LO, Azevedo E Silva G, Theme Filha MM, Lopes Cde S, Romero DE, Almeida WS, Monteiro CA. Pesquisa Nacional de Saúde no Brasil: concepção e metodologia de aplicação. Cien Saude Colet. 2014;19(2):333-342..

The NHS uses a three-stage stratified cluster sampling design, where the primary sampling units (PSU) are census tracts or tract clusters, the secondary units are households, and the tertiary units are household members. One household member is selected to answer a questionnaire from a list of members aged 18 years and over using simple random sampling¹⁰10 Holman JA, Drummond A, Hughes SE, Naylor G. Hearing impairment and daily-life fatigue: a qualitative study. Int J Audiol 2019; 58(7):408-416.. Sampling weights were defined for the PSU, households and all household members, and the selected member. The weighting for the latter was calculated based on the weight of the corresponding household and probability of selecting the member, adjusted for non-response by sex, and calibrated to the population by sex and age group, estimated using the weight of all household members¹¹11 Quevedo ALAD, Leotti VB, Goulart BNG. Análise da prevalência de perda auditiva autodeclarada e fatores associados: informante primário versus proxy. Cad Saude Publica 2017; 33:e0076216.. The survey interviewed 60,202 adult household members. The final sample of the present study was 1,464 individuals with hearing loss.

The questionnaire was divided into three parts: household characteristics; socioeconomic and health status; and individual questions.

The present study analyzed data from household members who reported having hearing loss, focusing on the following sociodemographic variables: sex (male and female); age (18-29; 30-44; 45-64; > 65 years); color/race (white, black, other - brown, yellow, and indigenous); marital status (married/cohabiting, separated, widowed, single); education level (illiterate, secondary education, degree or post-graduate degree).

The hearing loss variables were as follows: 1) Type of hearing loss (congenital or acquired) based on the following questions: “Were you born with hearing loss?” (yes/no); or “Was it acquired?” (yes/no). The individuals who answered yes to these questions were considered to have hearing loss; 2) Degree of hearing loss, classified as follows: total deafness; deafness in one ear and normal/hearing loss in the other ear; and hearing loss in one or both ears; and 3) Activities of daily living limitations, based on the following question: “Do you experience any limitation in activities of daily living?” (“Does hearing loss limit your activities of daily living?”) (yes/no).

We calculated absolute and relative frequencies and performed the chi-square test. A test was performed to detect multicollinearity using the variance inflation factor (VIF). Cut-off was adequate (close to one 1), indicating that multicollinearity was not present. Poisson regression with robust variance estimates was used to calculate crude and adjusted prevalence ratios for discrimination in health services. The outcome was derived from the following question: “Have you ever felt discriminated against or treated worse than other people in health services by a doctor or other health professional because of your hearing impairment?”. A “yes” answer indicated a positive outcome for discrimination in health services. Confidence intervals were computed for means and proportions of the outcome of interest. The association between the outcome and socioeconomic and hearing loss variables was tested adopting a significance level of 0.05 and adjusted to the sample weights from the complex sample of the population survey. The variables with a p-value of < 0.10 were included in the adjusted model. Goodness of fit was measured using the Hosmer-Lemeshow test. The data were analyzed using the Statistical Package for Social Sciences (SPSS) for Windows, version 19.0 (Chicago: SPSS Inc).

The NHS was approved by the National Research Council’s ethics committee in June 2013 (approval number 10853812.7.0000.0008). All survey participants signed an informed consent form. Ethical approval was not required for the present study because it used secondary data in the public domain that does not reveal the identity of the respondents. The present study was conducted in accordance with the ethical norms and standards set out in National Research Council Resolution 466/2012.

Results

Table 1 shows the prevalence of self-reported discrimination in health services and distribution of the sociodemographic and hearing loss variables. Of the 1,464 respondents with hearing loss, 15% (n = 219; p = 0.150; 95%CI: 0.132-0.168) reported having felt discriminated against in health services. The prevalence of discrimination was higher among women aged 30-44 years (19%), black people (22.1%), people who were single (18.6%), and individuals who had completed secondary education (15.4%). Most of the respondents who reported having felt discriminated against had congenital hearing loss, deafness in one ear and normal/hearing loss in the other ear, and reported that hearing loss limited activities of daily living.

Prevalence of self-reported discrimination was 58% higher in black people (PR = 1.58; 95%CI: 1.06-2.34) than in white people and 52% higher in respondents who reported having limitations in activities of daily living (PR = 1.52; 95%CI: 1.15-2.00) than among those without limitations n9, as shown in Table 2.

Discussion

The prevalence of self-reported discrimination was 15% and prevalence was higher among black people and respondents who reported experiencing limitations in activities of daily living. Social discrimination is reproduced among people with hearing impairment, meaning that this group needs special attention⁴4 Nordvik Ø, Laugen Heggdal PO, Brännström J, Vassbotn F, Aarstad AK, Aarstad HJ. Generic quality of life in persons with hearing loss: a systematic literature review. MC Ear Nose Throat Disord 2018; 18:1.^,55 Mick P, Kawachi I, Lin FR. The association between hearing loss and social isolation in older adults. Otolaryngol Head Neck Surg 2014; 150(3):378-384.. Limitations in activities of daily living among people with hearing impairment may be associated with daily-life fatigue from coping with this problem¹²12 Pérez-Garín D, Recio P, Magallares A, Molero F, García-Ael C. Perceived discrimination and emotional reactions in people with different types of disabilities: a qualitative approach. Span J Psychol 2018; 21:E12..

A cost-effective subjective measure, self-reporting is influenced by personal, cultural and socioeconomic factors. It is commonly used to measure real health status, being an important predictor of morbidity and mortality, health service utilization, and the health status of different populations, including people with disabilities¹1 World Health Organization (WHO). World report on disability. Geneva: WHO; 2011.. Self-report data has been widely used around the world for different populations. An important population-based survey estimated that the prevalence of hearing loss among the Spanish population was 22.5%¹³13 Jiménez A, Huete A. La discriminación por motivos de discapacidad: análisis de las respuestas recibidas al Cuestionario sobre Discriminación por motivos de Discapacidad promovido por el CERMI Estatal. Madrid: CERMI; 2002..

A study investigating social discrimination against people with different disabilities found that people with hearing impairment mainly reported barriers to participating in leisure activities and feelings of helplessness, supporting the findings of the present study regarding limitations in activities of daily living¹⁴14 Ologe FE, Akande TM, Olajide TG. Occupational noise exposure and sensorineural hearing loss among workers of a steel rolling mill. Eur Arch Otorhinolaryngol 2006; 263(7):618-621.. A study in Spain with 494 people with different disabilities reported that 60% of the respondents said they had suffered discrimination at some time in their lives and 15% mentioned that they had experienced it often. Most of the respondents (60%) believed that discrimination was directly related to the fact that they had a handicap and in 34% of cases discrimination was associated with inadequate conditions in environments of daily living for performing daily activities¹⁵15 Jamison DT, Breman JG, Measham AR, Alleyne G, Claeson M, Evans DB, Jha P, Mills A, Musgrove P, editors. Disease control priorities in developing countries. New York: Oxford University Press; 2006..

The International Classification of Functioning, Disability and Health (CIF) establishes that activity limitations are assessed according to accepted population standards and may range from a slight to a severe deviation from the population norm, having a negative effect on quality of daily activities. It also states that the use of devices can reduce limitations and help improve daily functioning for people with disabilities²2 Organização Mundial da Saúde (OMS). CIF: Classificação Internacional de Funcionalidade, Incapacidade e Saúde. São Paulo: EDUSP; 2004.. The present study showed that the prevalence of discrimination was higher in respondents who reported having limitations in activities of daily living, revealing that, in addition to the negative effects of hearing loss on daily living, these individuals are more likely to be discriminated against in health services.

The perception of prejudice and rejection has a negative impact on well-being and can also affect the physical health of members of stigmatized groups. Emotional and behavioral consequences include reduced self-esteem, psychological suffering, and loneliness¹⁶16 Rogers SE, Thrasher AD, Miao Y, Boscardin WJ, Smith AK. Discrimination in healthcare settings is associated with disability in older adults: health and retirement study, 2008-2012. J Gen Intern Med 2015; 30(10):1413-1420.^,1717 Hawkes S, Buse K. Gender and global health: evidence, policy, and inconvenient truths. Lancet 2013; 381(9879):1783-1787.. These consequences can also be found in individuals with hearing impairment, given that it can severely impair communication, restricting social interaction and activities of daily living. It is known that hearing loss, which is substantially underestimated and untreated¹⁸18 Baumgarten A, Peron TB, Bastos JL, Toassi RFC, Hilgert JB, Hugo FN, Celeste RK. Experiências de discriminação relacionadas aos serviços de saúde: análise exploratória em duas capitais do Sul do Brasil. Epidemiol Serv Saude 2015; 24(3):353-362., can often lead to lifelong disability and severely affect the development of speech, language, and cognitive skills, depending on the severity and vocal frequency affected¹⁹19 Villela WV, Vianna LAC, Lima LFP, Sala DCP, Vieira TF, Vieira ML, Oliveira EM. Ambiguidades e contradições no atendimento das mulheres que sofrem violência. Saude Soc 2011; 20(1):113-123..

Institutional or social discrimination against people with self-reported hearing impairment and access to health services has been underexplored worldwide and in Brazil. Brazil’s public health system, the Sistema Único de Saúde (SUS) or Unified Health System, seeks to provide universal access to health care and supports policies to promote hearing health. However, the high prevalence of self-reported discrimination reported in the literature suggests that the latter require more research and improvement¹⁶16 Rogers SE, Thrasher AD, Miao Y, Boscardin WJ, Smith AK. Discrimination in healthcare settings is associated with disability in older adults: health and retirement study, 2008-2012. J Gen Intern Med 2015; 30(10):1413-1420..

The findings show that prevalence of self-reported discrimination was higher among women, which is a reality in various countries. Gender issues in health should be mainstreamed into global health policies¹⁷17 Hawkes S, Buse K. Gender and global health: evidence, policy, and inconvenient truths. Lancet 2013; 381(9879):1783-1787.. Studies point to several different issues, including health care-seeking¹⁸18 Baumgarten A, Peron TB, Bastos JL, Toassi RFC, Hilgert JB, Hugo FN, Celeste RK. Experiências de discriminação relacionadas aos serviços de saúde: análise exploratória em duas capitais do Sul do Brasil. Epidemiol Serv Saude 2015; 24(3):353-362., with gender having a significant effect on access to care, dismissal of women’s health problems by certain health professionals, and stereotypes¹⁹19 Villela WV, Vianna LAC, Lima LFP, Sala DCP, Vieira TF, Vieira ML, Oliveira EM. Ambiguidades e contradições no atendimento das mulheres que sofrem violência. Saude Soc 2011; 20(1):113-123. and stigma, which can hinder help-seeking and lead to delays in certain types of diagnosis, adversely affecting health outcomes²⁰20 Weiss M, Ramakrishna J, Somma D. Health-related stigma: rethinking concepts and interventions. Psychol Health Med 2006; 11(3):277-287.. In addition to prejudice, women with hearing loss often suffer from stigmas surrounding disability due to hearing aid use²¹21 Villela WV, Monteiro S. Gênero, estigma e saúde: reflexões a partir da prostituição, do aborto e do HIV/aids entre mulheres. Epidemiol Serv Saude 2015; 24(3):531-540..

Our findings show that more than half of the respondents who reported having felt discriminated against were women. To the best of our knowledge, this is the first study to explore this issue in health services in Brazil. Other studies show that hearing loss can affect the incidence of dementia in women in association with other variables and that women with some type of disability are more likely to report humiliation and discrimination²²22 Ruusuvuori JE, Aaltonen T, Koskela I, Ranta J, Lonka E, Salmenlinna I, Laakso M. Studies on stigma regarding hearing impairment and hearing aid use among adults of working age: a scoping review. Disabil Rehabil 2021; 43(3):436-446.^,2323 Fritze T, Teipel S, Ovari A, Kilimann I, Witt G, Doblhammer G. Hearing impairment affects dementia incidence. An analysis based on longitudinal health claims data in Germany. PLoS One 2016; 11(7):e0156876..

Self-report data reveal that being black was associated with discrimination in health services. Racism can be said to be the assignment of negative characteristics to certain social groups and is reinforced on a daily basis by the relationships established between individuals and in the organization and functioning of institutions²⁴24 Dammeyer J, Chapman M. A national survey on violence and discrimination among people with disabilities. BMC Public Health 2018; 18(1):355.. Regarding health, it is important to highlight that institutional discrimination based on skin color can be a cause of inequality in the distribution of services, benefits, and opportunities²⁵25 Taquette SR, Meirelles ZV. Discriminação racial e vulnerabilidade às DST/Aids: um estudo com adolescentes negras. Physis 2013; 23(1):129-142..

A study showed that one tenth of the Brazilian population reported feeling discriminated against in health services and that non-white people are more likely to feel discriminated against²⁶26 López LC. O conceito de racismo institucional: aplicações no campo da saúde. Interface (Botucatu) 2012; 16(40):121-134.. Black people therefore face disparities in the quality of health care, which can contribute significantly to social injustice in health care.

The debate surrounding racial health inequalities has concentrated on innate genetic differences, disparities in the distribution of health behavior (cultural traits such as diet, exercise and smoking), and the overrepresentation of certain racial groups in lower socioeconomic status groups, suggesting that these factors are the leading causes of racial inequalities in morbidity and mortality²⁷27 Boccolini CS, Boccolini PMM, Damacena GN, Ferreira APS, Landmann SC. Fatores associados à discriminação percebida nos serviços de saúde do Brasil: resultados da Pesquisa Nacional de Saúde, 2013. Cien Saude Colet 2016, 21(2): 371-378.^,2828 Rivera LM. Ethnic-racial stigma and health disparities: from psychological theory and evidence to public policy solutions. J Soc Issues 2014; 70(2):198-205.. Alternative perspectives that can help explain this type of health inequality include structural-constructivist and psychosocial stress models²⁹29 Dressler WW, Oths KS, Gravlee C. Race and ethnicity in public health research: models to explain health disparities. Annual Review of Anthropology, 2005; 34:231-252.. The former emphasizes the intersection of racially stratified social structures and the cultural construction of goals and aspirations, while the latter focuses on experience of racism and discrimination, suggesting that they are important factors, but not the only contributors to racial health inequalities²⁷27 Boccolini CS, Boccolini PMM, Damacena GN, Ferreira APS, Landmann SC. Fatores associados à discriminação percebida nos serviços de saúde do Brasil: resultados da Pesquisa Nacional de Saúde, 2013. Cien Saude Colet 2016, 21(2): 371-378.^,38,3030 Krieger N. Stormy weather: race, gene expression, and the science of health disparities. Am J Public Health 2005; 95(12):2155-2160..

Our findings and the pressing nature of this problem suggest that there is a need to explore intersecting factors when studying hearing loss discrimination. It is important to examine the correlation between discrimination and variables such as color, gender and socioeconomic characteristics, as it is known that discrimination is likely to disproportionately affect black people, women, and socioeconomically vulnerable groups⁶6 Bastos JL, Faerstein E, Celeste RK, Barros AJ. Explicit discrimination and health: development and psychometric properties of an assessment instrument. Rev Saude Publica 2012; 46(2):269-278.. In some cases, these factors may intersect and overlap to create unique effects in certain individuals.

One of the limitations of this study is that it did not assess income and the combined effect of the other study variables. However, it is important to highlight that despite this limitation this study has a strong element of originality. Another limitation is that we did not assess hearing aid use. The use of a hearing aid can be an important factor influencing daily living, facilitating the performance of activities of daily living and potentially influencing discrimination. This opens the opportunity for new studies including these variables and using different models of analysis. It is important to stress however that the findings raise important issues that need to be discussed, such as the possibility of institutional racism and gender differences in discrimination in health services in Brazil. In addition, the results also reinforce the existence of socioeconomic inequalities in health care access and utilization related to individual characteristics.

Conclusion

Our findings show that the prevalence of discrimination against adults with hearing loss was 15% and that prevalence was higher among black people and respondents who reported experiencing limitations in activities of daily living.

The implementation of policies and actions to address this problem is recommended, including strategies during the education and training of health professionals. In addition, actions should be implemented to empower patients in order to ensure equitable access to health services. Further, more in-depth research into how discrimination occurs and how to prevent this problem should also be conducted.

References

Publication Dates

History