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 Table of Contents  
REVIEW ARTICLE
Year : 2016  |  Volume : 3  |  Issue : 4  |  Page : 324-334

Correlates of hepatitis b virus-related stigmatization experienced by Asians: A scoping review of literature


1 College of Nursing and Health Sciences, University of Massachusetts Boston, Boston, USA
2 Department of Nursing, University of Massachusetts Boston, Boston, MA, USA
3 Department of Nursing, School of Medicine, Inje University, Busan, South Korea

Date of Submission17-Jun-2016
Date of Acceptance25-Jul-2016
Date of Web Publication22-Dec-2016

Correspondence Address:
Haeok Lee
Professor, College of Nursing and Health Sciences; University of Massachusetts Boston, Boston, MA; 100 Morrissey Blvd, Boston, MA 02125 3393
USA
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/2347-5625.195896

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  Abstract 

Objective: Although remarkable progress in the pharmacological components of the prevention and treatment of hepatitis B virus (HBV) and liver cancer has been achieved, HBV-related stigma is recognized as a major barrier to HBV management. The purpose of this Revised Social Network Model (rSNM)-guided review was to examine the existing research literature about HBV-related stigma among Asians and Asian immigrants residing in other countries. Methods: A scoping review of literature was conducted to determine the depth and breadth of literature. Totally, 21 publications were identified. The review findings were linked with the concepts of rSNM to demonstrate how individual factors and sociocultural contexts shape and affect the experience of HBV-related stigma. Results: Most studies were quantitative cross-sectional surveys or qualitative methods research that had been conducted among Chinese in China and in the USA. The three concepts in rSNM that have been identified as important to stigma experience are individual factors, sociocultural factors, and health behaviors. The major factors of most studies were on knowledge and attitudes toward HBV; only three studies focused on stigma as the primary purpose of the research. Few studies focused on the measurement of stigma, conceptual aspects of stigma, or interventions to alleviate the experience of being stigmatized. Conclusions: The scoping review revealed the existing depth and breadth of literature about HBV-related stigma. Gaps in the literature include lack of research address group-specific HBV-related stigma instruments and linkages between stigma and stigma-related factors.

Keywords: Asian, barriers to health services, hepatitis B virus, Revised Social Network Model, scoping review, socioculture, stigma


How to cite this article:
Lee H, Fawcett J, Kim D, Yang JH. Correlates of hepatitis b virus-related stigmatization experienced by Asians: A scoping review of literature. Asia Pac J Oncol Nurs 2016;3:324-34

How to cite this URL:
Lee H, Fawcett J, Kim D, Yang JH. Correlates of hepatitis b virus-related stigmatization experienced by Asians: A scoping review of literature. Asia Pac J Oncol Nurs [serial online] 2016 [cited 2019 Nov 19];3:324-34. Available from: http://www.apjon.org/text.asp?2016/3/4/324/195896


  Introduction Top


Although Asian Americans are at lower risk for the most prevalent cancers, such as breast, lung, and colon cancers, experienced by most non-Asian Americans, they experience a significantly higher prevalence of chronic hepatitis B virus (HBV) infection and the subsequent development of hepatocellular cancer. [1],[2] Asian people with the HBV infection usually become infected during birth or from close family contact during early childhood and are at greater risk of developing long-term complications from the infection approximately 20 years earlier than people who become infected during adulthood. [3],[4],[5] Findings from studies of Asian Americans indicate that the prevalence of chronic HBV infection ranges from 4% to 15%, [1],[2],[6],[7] which is more than 30 times the rate of 0.11% for non-Hispanic Whites. [8] Furthermore, HBV is responsible for 75%-90% of primary hepatocellular carcinoma cases worldwide. [8],[9]

Due to the remarkable progress of the pharmacological prevention and treatment of HBV and liver cancer, great strides have been made in HBV and liver cancer management in the last three decades. [2],[3] However, results of studies of HBV and other infectious diseases point to the fact that the health-related stigma associated with these diseases has a direct negative impact on quality of life as well as the process of health-care delivery and medical decision-making. [10],[11],[12],[13] There is a long history of social discrimination against patients with such infectious diseases as leprosy, tuberculosis, and HIV. [10],[11],[12],[13] Research findings have revealed that people living with infectious diseases frequently are marginalized and experience considerable stigmatization. [10],[11],[12] Hepatitis carriers have been described as modern-day "lepers" [14] or "AIDS," [15] and individuals with HBV as well as their families have felt ashamed about having HBV. [14]

In his seminal work, Goffman initially defined stigma as "the situation of the individual who is disqualified from full social acceptance" (p. 9). [16] As the work about the concept of stigma has evolved, theorists and researchers have concluded that stigmatization not only applies to the stigmatized person but also manifests in the social context that defines an attribute as devaluating [17] and discriminating. [18] The devaluation of one's social identity can be a major cause of the individual's low self-esteem, particularly in his or her family. [14],[15],[18] Moreover, health-related stigmatization often results in social and financial marginalization and withholding of treatment or denial of services, [10],[19] thereby violating the human rights of people with the HBV infection. HBV-related stigmatization may occur at family, community, or institutional level and may be perceived or expressed visibly or invisibly. Research that informs our understanding of the attributes and the consequences of HBV-related stigma is important. However, there are no literature reviews evaluating the effect of stigmatization related to HBV infection among Asians. Therefore, the purpose of this paper is to report the results of a Revised Social Network Model (rSNM)-guided scoping review designed to examine the existing research literature about HBV-related stigma among Asians and Asian immigrants residing in other countries.

Conceptual model

The rSNM was selected to guide our understanding of how different sociocultural contexts shape and affect HBV-related stigma experiences. The concepts of this conceptual model are individual factors, sociocultural factors, health behavioral factor, and illness experiences. Individual factors account for person-centered influences such as knowledge, attitudes, or health belief. Sociocultural factors refer to characteristics including demographic, social, and cultural settings that form the background for people's lives. Health-related behaviors are action taken by a person which affect his or her health status. [20],[21] Illness experience refers to the individual's experience of HBV infection, and HBV-related stigma is considered a part of the HBV illness experience. Stigmatization and stigma-related factors were extracted from the studies, and the findings were categorized as stigma experiences (such as social exclusion or discrimination) that caused from individual and sociocultural factors and resulted in health behavioral changes. These linkages are found in the results section of this paper.


  Methods Top


A scoping review of literature was conducted to determine the depth and breadth of literature about HBV-related stigma. A scoping review is based on iterative, conceptual, and interpretative approaches that encompass both empirical and conceptual literature about broadly framed questions. A scoping review emphasizes the importance of developing a critique based on the relevance, credibility, and contribution of evidence rather than by rigidly determined methodological considerations of analysis and synthesis that is a hallmark of other types of systematic reviews of literature. [22],[23] We identified two research questions for our scoping review: (1) What is HBV-related stigmatization? And (2) What are the correlates of HBV-related stigmatization among Asians?

Identifying relevant studies

To identify studies as comprehensively as possible, we searched for research evidence not only from electronic databases but also from the reference lists of all retrieved articles. Furthermore, a Google Scholar search and a search of the websites of several HBV-related organizations, including the WHO and the Hepatitis B Foundation were conducted.

Our electronic searches encompassed literature published between 1988 and 2016 and were conducted using PubMed, Medline, the Cochrane Library, the Cumulative Index to Nursing and Allied Health Literature, Health and Psychosocial Instruments, PsycINFO, SocINDEX, and the Educational Resources Information Centre. The search terms were "stigma* or stigmatization or marginalization or shame AND hepatitis B AND Asia," "stigma* or stigmatization or marginalization or shame or discrimination AND hepatitis B AND (various Asian countries)."

Inclusion criteria in search of both qualitative and quantitative studies were: (1) published as full text in the English language; (2) included Asian Americans or people from various Asian countries; (3) all age groups; (4) focused on HBV patients, families, communities, and health care providers; (5) focused on HBV-specific stigma.

Study selection

[Figure 1] is a flow diagram of the search and selection of papers for the review. Although scoping review methodology does neither limit the reviews to research trials nor require quality assessment, we decided to carefully develop a selection process. Our initial perusal of the citations indicated that our search strategy yielded a large number of irrelevant studies. For example, we found many search results for HIV and HCV infections-related stigma. However, we did not want to filter out these articles in case, some of the articles focused on coinfections of HBV. Titles and abstracts were reviewed by two independent reviewers (Haeok Lee and Deogwoon Kim) to determine eligibility based on the inclusion criteria. Duplicated papers and papers that were commentaries, summary reports, or media reports were excluded. Full-text articles were obtained for 21 papers and were read in full by three authors (Haeok Lee, Jin Yang, and Deogwoon Kim).
Figure 1: Scoping review flow diagram

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Process of scoping: Narrative review and charting data

Based on preliminary trial charting and sorting according to key concepts/factors and themes, the literature was categorized according to the aims of the study, the type of study design, the study population, stigma definition, and stigma-related findings.

Collecting and summarization

The findings of the scoping review of literature are documented in [Table 1] and [Table 2] and in the narrative text. A descriptive-analytical method was utilized to present a narrative account of the existing literature. The tables include the distribution of studies geographically, research methods, definition and measures used, participants, and dimensions of stigma or stigma-related factors; the studies are listed in the chronological order of publication date, from the most recent publication to the earliest. Categorization of findings was performed by the authors (Haeok Lee, Jin Yang, and Deogwoon Kim) and checked, and discrepancies were resolved through discussion among the three authors (Haeok Lee, Jin Yang, and Deogwoon Kim). Data charting tables [Table 1] and [Table 2] were developed to sort the extracted data and included charting of key features, and literature review was organized based on rSNM. For example, recording information about the dimension or definition of stigma or correlates of stigma or the impact of stigma on health or stigma intervention so that the findings were more contextualized and more understandable to readers. [22] Moreover, the findings of the literature review were organized and are depicted in [Figure 2] based on rSNM to help better understanding of HBV-related stigma phenomenon.
Figure 2: Conceptual framework for HBV-Related stigma

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Table 1: Summary of quantitative studies

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Table 2: Summary of qualitative studies

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  Results Top


Research methods

[Table 1] presents the quantitative studies and [Table 2] presents qualitative studies. As can be seen by reviewing both tables, most studies were cross-sectional surveys that had been conducted in China, Hong Kong, Japan, Korea, Malaysia, Taiwan, USA, Canada, and Australia; the majority of the studies was conducted outside Asia. As shown in [Table 2], various qualitative methods were used, including open-ended interviews, focus groups, grounded theory, semi-structured and in-depth interviews, and ethnography. Most studies focused on knowledge of and attitudes about HBV. Only three studies [24],[25],[26] focused on stigma as the primary purpose of the research. In the cross-sectional surveys reviewed, only three studies [24],[26],[27] included dimensions of stigma. The other studies did not include an explicit definition of stigma or a theoretical frameworks that might have guided the research, including the way in which stigma was measured. HIV- or HCV-related stigma, rather than, HBV-related stigma, was the main focus of the studies that included the coinfections of HIV, HCV, and HBV. Only two articles report of experimental research of the effects of interventions on overall management of HBV; both studies were conducted in the USA and by the same research group.

Participants

Participants were convenience samples of patients utilizing Asian-serving clinics, people who were members of Asian serving community organizations, or people attending community events. Chinese people in China and in the USA were the most studied groups. [24],[25],[26],[27],[28],[29],[30],[31],[32],[33],[34],[35] The participants were HBV-infected patients, members of the general community, health-care providers, or community leaders [Table 1] and [Table 2]. All participants were adults. Only seven studies [24],[26],[27],[28],[31],[34],[36] included a report of the response rate and one study [34] included a report of response rates below 40%. None of the researchers used online recruitment methods.

Stigma experiences

Literature revealed that HBV-related stigma is subjective and internalized, perceived, or experienced by individuals, in interpersonal interactions (or face-to-face) or in the larger society. A general consensus exists about the definition of stigma as a negative perception with fear of rejection at both personal and family levels and which cause harm to both the family and the society. Stigma prevented both individuals and their family members to disclose the presence of HBV infection because they feared discrimination from the society. [15],[25],[28],[31],[32],[33],[34],[37],[38] Reports of indicators of stigma ranged from 24% [36] to 70%. [39] In most studies, stigma was regarded as a dimension of knowledge of and/or attitude about HBV. Community members, community leaders, health care providers, and college students were identified as groups who stigmatize the HPV-infected persons. Only two studies [24],[26] included multidimensional measures of stigma and only one study [26] was a report of the development of stigma measures, including psychometric properties but only for Chinese Americans.

Public or societal stigma related to HBV infection status is commonly found in Asian countries and Asian communities in the US and has been perceived and/or experienced as social exclusion or discrimination. Stigma may be experienced when family or social norms are internalized. For example, in some qualitative studies, the participants perceived themselves as being referred to in terms such as having "bad blood" or having "bad gene" or "being contaminated" or "misconductedness." [15],[37],[40],[41] This self-devalued quality of one's social identity inflicts damage on one's self-esteem. [15] Interpersonal or face-to-face stigma may be experienced through encounters with the family or through interpretation of family experiences. Despite the heterogeneity of Asian ethnicities, most Asian cultures have common several cultural values such as interdependence, collectivism, and family centeredness. [15],[42] Given the collective nature of Asian cultures, having HBV is a reflection on the family rather than the individuals, and families with an HBV-infected member may perceive or encounter public stigma or losing family face. [15] The threat of social stigma may prevent people living with HBV from revealing their status to others.

The definition of HBV-related stigma found in the literature was varied reflecting the different perspectives of the stigma found in different sociocultural contexts and/or with different populations that were the focus of the particular study. HBV-related stigma was reported by patients, community members, and health-care professionals. Based on the literature review, HBV-related stigma has been defined as a multidimensional concept including social, interpersonal, and personal stigma. It is a perceived and experienced (enacted) phenomenon and results from a perception of how others (including family members) view the stigmatized person and can result from and it related to poor health behavior.

The causes of stigma

The causes of stigma were attributed to both individual and sociocultural factors in various studies [Table 1] and [Table 2]. Maxwell et al. found that knowledge and awareness levels of HBV infection were associated with stigma across 4 community-based surveys from 38% to 70%. [39] Fear of HBV infection is the most common cause of HBV stigma. [24],[27],[33],[35],[38],[43] A lack of knowledge and awareness of HBV often resulted in a misunderstanding of the disease and results in the stigmatization of one's own self or stigmatization of people infected with HBV. [15],[24],[27],[28],[29],[32],[41] The findings of both quantitative and qualitative studies revealed that most Asian or Asian Americans including health-care providers stated that sharing of contaminated food and eating utensils was the most common route of HBV transmission. [15],[27],[31],[32],[33],[34],[37] Between 38% and 70% respondents believed that HBV carriers put others at risk, expressed their intention to avoid them, and supported their isolation. [24],[39] Similarly, HBV-infected participants expressed fears of transmitting the virus to loved ones through casual contact. [43]

Furthermore, culture influences the meaning or beliefs that individuals attach to HBV and can cause stigma experiences. [29],[33],[41] In Asian sociocultural context, HBV is often viewed as harmful to society or to the family, and HBV-positive status wrongly stigmatizes family members and increases the fear of "loss of face." [15] A person who "loses face" can no longer function well in his or her social network and, for example, can influence other's beliefs about the social acceptance of an individual or his/her family for marriage or employment. [35],[38]

Health outcome of stigma

Participants in both qualitative and quantitative studies experienced HBV-related stigma both personally and socioeconomically. The stigma affected admission to certain schools or parental rejection at schools and resulted at a time in loss of employment. [30],[43] Another outcome is that HBV-related stigma on both personal and family levels acts as an impediment to marriage and having children. [15],[35] The findings of qualitative studies indicated that HBV-related stigma is a serious barrier to accessing services. [25],[33] It was found that HBV-positive individuals were more likely to disclose to the family but reluctant to disclose their condition to friends and coworkers. [28],[32] Two studies reported that the individuals who did not disclose their HBV status to others reported higher perception of stigma. [38],[39] Only two quantitative studies included examination of the relation between HBV stigma and health care including blood screening and other health behaviors. [26],[27]

In summary, the review suggests that HBV-related stigma is a part of the illness experiences resulting from a perception of how others (including family members) view them. Stigma can also negatively affect the health and health behaviors [Figure 2]. The three concepts in rSNM that have been identified as important to the stigma experience are individual factors, sociocultural factors, and health behaviors and confirms that the way people perceive or respond to HBV is as much as a sociocultural process as it is a result of individual actions.


  Discussion Top


Our findings point to the fact that stigmatization is caused by individual and sociocultural factors, and that stigmatization not only occurs for the HBV-infected person but also is manifested in a social context in which discrimination against or devaluation of both patients and family occurs. In addition, institutional disadvantages caused by societal stigmatization are placed on stigmatized persons creating barriers to their receiving HBV blood screening and HBV management. The studies in China confirmed that HBV-infected individuals are regarded by the society as having a disgraced moral status and are banned from the society including workplaces and schools. [26],[30],[35] Clearly, we need to examine the experience of stigma not only among individuals with HBV infection but also among HBV-infected families and health-care professionals within their sociocultural contexts.

The outcomes of stigma for HBV-infected people are important to understand because they will become not only obstacles for liver cancer prevention and treatment of infected individuals but also risks for others. If infected individuals are not aware of their infection or misunderstand how HBV is transmitted, they will unintentionally infect others as well as not receive appropriate health management. The loss of family, friends, community, and health care and the loss of employment result in infected individuals feeling rejection, marginalization, and discrimination. For example, in China and Korea, there is pervasive discrimination against people who suffer from chronic HBV infection. HBV-infected children are frequently expelled from schools and adults fired from jobs. [2] They are shunned by other community members despite recent national antidiscrimination efforts. [44],[45] In a 2007 survey covering 10 major cities in China, hepatitis B was cited as one of the top three reasons for job discrimination. [46]

The scoping review is a novel approach to provide a rigorous and transparent method for mapping areas of research including the volume, nature, and characteristics of the primary research. It allows us to identify the gaps in the evidence, summarizing and disseminating findings as Arksey and O'Mally claimed. [22] The results of our scoping review of literature suggest that there is a great need for more research to increase our understanding of the phenomenon of stigma among Asian HBV-infected people and their family members. For example, the correlational and longitudinal evidence is now needed to establish linkage and causality between stigma and HBV and liver cancer management behaviors. This will open a new line of research in liver cancer prevention and HBV management that will benefit the substantially underserved and understudied Asians in both Asian countries and where Asian immigrants reside more broadly. Since HBV requires a relatively long course of treatment and regular screening, stigma constitutes an obstacle to continuing or remaining in treatment. [33] Quantitative measures used in studies are largely attitude or knowledge scales or contain one item measuring the broad and general negative feeling toward HBV-positive people. Thus, to more accurately explore the sources and consequences of HBV stigma, it is imperative to develop a culture-specific multidimensional HBV stigma instrument. Data collected from the use of this instrument will prepare the way for effective HBV stigma interventions.

Both individual and community-level interventions to reduce the burden of HBV-related stigma are necessary in both Asian countries and where Asian immigrants reside. Given the deeply ingrained HBV-related stigma among many Asians in Asia, it is not surprising that many Asian immigrants remain reluctant to undergo testing or to seek medical attention for a positive test result even after moving to the USA or another Western country. [33] Because avoidance of HBV testing and management is due largely to a lack of knowledge about the routes of HBV transmission and means of prevention as well as social stigmatization of the disease, [15],[33],[40] it is imperative to develop and implement targeted group-specific public health educational interventions.


  Conclusion Top


HBV-related stigma presents as a part of the HBV illness experience and is a perceived and experienced multidimensional phenomenon and is a complex social process. It is likely to impede participation in health care. There are significant gaps in the literature. The majority of the studies included in our review were descriptive or cross-sectional. Studies of stigma from other infectious diseases revealed that different sociocultural contexts contribute substantial variation in the construction of stigma. However, only one study to date has focused on studying the HBV-stigma from the perspective of the Chinese subgroup of Asians. [24] Future longitudinal and multi-Asian subgroup level research is needed and should be based on target-group-specific stigma definitions and measures as well as relevant theory. Thus, the development of a culturally relevant and acceptable psychometric instrument that measures HBV-related stigma and stigma-related factors among other Asians is a critical step for understanding the mechanisms that underlie relation between HBV-related stigma, culture, and health behavior.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

 
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Haeok Lee


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