Understanding HIV disclosure: a review and application of the Disclosure Processes Model.
TL;DR: This paper applies a new theoretical framework to HIV disclosure in order to review the current state of the literature, identify gaps in existing research, and highlight the implications of the framework for future work in this area.
About: This article is published in Social Science & Medicine.The article was published on 2011-05-01 and is currently open access. It has received 297 citations till now. The article focuses on the topics: Truth Disclosure.
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TL;DR: An evidence-based, theory-informed, and pragmatic framework to help predict and evaluate the success of a technology-supported health or social care program, which has several potential uses and could be applied across a range of technological innovations in health and social care.
Abstract: Background: Many promising technological innovations in health and social care are characterized by nonadoption or abandonment by individuals or by failed attempts to scale up locally, spread distantly, or sustain the innovation long term at the organization or system level. Objective: Our objective was to produce an evidence-based, theory-informed, and pragmatic framework to help predict and evaluate the success of a technology-supported health or social care program. Methods: The study had 2 parallel components: (1) secondary research (hermeneutic systematic review) to identify key domains, and (2) empirical case studies of technology implementation to explore, test, and refine these domains. We studied 6 technology-supported programs-video outpatient consultations, global positioning system tracking for cognitive impairment, pendant alarm services, remote biomarker monitoring for heart failure, care organizing software, and integrated case management via data sharing-using longitudinal ethnography and action research for up to 3 years across more than 20 organizations. Data were collected at micro level (individual technology users), meso level (organizational processes and systems), and macro level (national policy and wider context). Analysis and synthesis was aided by sociotechnically informed theories of individual, organizational, and system change. The draft framework was shared with colleagues who were introducing or evaluating other technology-supported health or care programs and refined in response to feedback. Results: The literature review identified 28 previous technology implementation frameworks, of which 14 had taken a dynamic systems approach (including 2 integrative reviews of previous work). Our empirical dataset consisted of over 400 hours of ethnographic observation, 165 semistructured interviews, and 200 documents. The final nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework included questions in 7 domains: the condition or illness, the technology, the value proposition, the adopter system (comprising professional staff, patient, and lay caregivers), the organization(s), the wider (institutional and societal) context, and the interaction and mutual adaptation between all these domains over time. Our empirical case studies raised a variety of challenges across all 7 domains, each classified as simple (straightforward, predictable, few components), complicated (multiple interacting components or issues), or complex (dynamic, unpredictable, not easily disaggregated into constituent components). Programs characterized by complicatedness proved difficult but not impossible to implement. Those characterized by complexity in multiple NASSS domains rarely, if ever, became mainstreamed. The framework showed promise when applied (both prospectively and retrospectively) to other programs. Conclusions: Subject to further empirical testing, NASSS could be applied across a range of technological innovations in health and social care. It has several potential uses: (1) to inform the design of a new technology; (2) to identify technological solutions that (perhaps despite policy or industry enthusiasm) have a limited chance of achieving large-scale, sustained adoption; (3) to plan the implementation, scale-up, or rollout of a technology program; and (4) to explain and learn from program failures.
990 citations
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TL;DR: A stigma complex is proposed, a system of interrelated, heterogeneous parts bringing together insights across disciplines to provide a more realistic and complicated sense of the challenge facing research and change efforts.
Abstract: Since the beginning of the twenty-first century, research on stigma has continued. Building on conceptual and empirical work, the recent period clarifies new types of stigmas, expansion of measures, identification of new directions, and increasingly complex levels. Standard beliefs have been challenged, the relationship between stigma research and public debates reconsidered, and new scientific foundations for policy and programs suggested. We begin with a summary of the most recent Annual Review articles on stigma, which reminded sociologists of conceptual tools, informed them of developments from academic neighbors, and claimed findings from the early period of “resurgence.” Continued (even accelerated) progress has also revealed a central problem. Terms and measures are often used interchangeably, leading to confusion and decreasing accumulated knowledge. Drawing from this work but focusing on the past 14 years of stigma research (including mental illness, sexual orientation, HIV/AIDS, and race/ethnici...
445 citations
Cites background from "Understanding HIV disclosure: a rev..."
...Disclosure carryover has been examined not only in mental illness but in areas such as infertility and HIV/AIDS (Chaudoir et al. 2011, Corrigan & Rao 2013, Martins et al. 2013, Rudolph et al. 2012, Wade et al. 2011)....
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...Interventions to reduce HIV/AIDS stigma: What have we learned?...
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...“You’re awfully old to have this disease”: experiences of stigma and ageism in adults 50 years and older living with HIV/AIDS....
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...Yet at the same time, other NIH Institutes (e.g., the Fogarty International Center) supported a pioneering effort during this period to understand stigma across many disease categories (e.g., cleft palate, as well as mental illness and HIV/AIDS), different groups (e.g., the public, employers, “people with”), and countries where little was known (e.g., the Global South; Keusch et al. 2006)....
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...Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil....
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DOI•
01 Jan 2013TL;DR: Men and women experience different kinds of mental health problems as mentioned in this paper, while women exceed men in internalizing disorders such as depression and anxiety, men exhibit more externalizing disorders, such as substance abuse and antisocial behavior, which are problematic for others.
Abstract: Men and women experience different kinds of mental health problems. While women exceed men in internalizing disorders such as depression and anxiety, men exhibit more externalizing disorders such as substance abuse and antisocial behavior, which are problematic for others. These differences also vary by race and social class: for example, African Americans possess better mental health and, thus, a smaller gender gap in psychiatric problems. What explains these differences? We concentrate on conceptions of gender and gender practices. Research on gender and mental health suggests that conceptions of masculinity and femininity affect major risk factors for internalizing and externalizing problems, including the stressors men and women are exposed to, the coping strategies they use, the social relationships they engage in, and the personal resources and vulnerabilities they develop. This chapter investigates explanations in these areas for gender differences both in general and by race and class.
365 citations
DOI•
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TL;DR: In this article, the authors discuss the development of thinking about labeling and stigma over the past half century within the field of the sociology of mental health, and discuss the steps people take to avoid, mitigate, or overcome stigma, drawing in particular on Thoits' theoretical statements about this issue.
Abstract: The chapter addresses the stigma associated with mental illnesses. It begins by summarizing the development of thinking about labeling and stigma over the past half century within the field of the sociology of mental health. This background leads to our consideration of recent advances in the conceptualization of stigma as we ask: What is stigma? How do different stigmatizing circumstances (mental illness, obesity, facial disfigurement) resemble and differ from one another? We also ask: Why do people stigmatize? In keeping with the Handbook’s emphasis on social class and socioeconomic status (SES), we introduce the concept of “stigma power” and apply this new concept to the questions of “What do people gain by stigmatizing others?” and “How is stigma power exercised?” Finally, we consider the steps people take to avoid, mitigate, or overcome stigma, drawing in particular on Thoits’ (Soc Psychol Q 74:6–28, 2011) theoretical statements about this issue. The conceptual growth that has taken place over time opens enormous possibilities for advancing the sociological understanding of mental illness stigma and by doing so helps to illuminate ways in which the effects of stigma might be mitigated.
271 citations
TL;DR: Using social media to bridge communication among a diverse range of users, in various geographic and social contexts, may be leveraged through pre-existing platforms and with attention to the roles of anonymity and confidentiality in communication about HIV prevention and treatment.
Abstract: Background: Social media, including mobile technologies and social networking sites, are being used increasingly as part of human immunodeficiency virus (HIV) prevention and treatment efforts. As an important avenue for communication about HIV, social media use may continue to increase and become more widespread. Objective: The objective of this paper is to present a comprehensive systematic review of the current published literature on the design, users, benefits, and limitations of using social media to communicate about HIV prevention and treatment. Methods: This review paper used a systematic approach to survey all literature published before February 2014 using 7 electronic databases and a manual search. The inclusion criteria were (1) primary focus on communication/interaction about HIV/acquired immunodeficiency syndrome (AIDS), (2) discusses the use of social media to facilitate communication, (3) communication on the social media platform is between individuals or a group of individuals rather than the use of preset, automated responses from a platform, (4) published before February 19, 2014, and (5) all study designs. Results: The search identified 35 original research studies. Thirty studies had low or unclear risk of at least one of the bias items in the methodological quality assessment. Among the 8 social media platform types described, short message service text messaging was most commonly used. Platforms served multiple purposes including disseminating health information, conducting health promotion, sharing experiences, providing social support, and promoting medication adherence. Social media users were diverse in geographic location and race/ethnicity; studies commonly reported users aged 18-40 years and users with lower income. Although most studies did not specify whether use was anonymous, studies reported the importance of anonymity in social media use to communicate about HIV largely due to the stigma associated with HIV. The ability to share and receive information about HIV was the most commonly reported benefit of social media use and the most common challenges were related to technology. Measures of frequency of use, satisfaction, and effects of use varied across studies. Conclusions: Using social media to bridge communication among a diverse range of users, in various geographic and social contexts, may be leveraged through pre-existing platforms and with attention to the roles of anonymity and confidentiality in communication about HIV prevention and treatment. More robust research is needed to determine the effects of social media use on various health and social outcomes related to HIV. [J Med Internet Res 2015;17(11):e248]
139 citations
References
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TL;DR: In this article, the authors discuss the relationship between information control and personal identity, including the Discredited and the Discreditable Social Information Visibility Personal Identity Biography Biographical Others Passing Techniques of Information Control Covering.
Abstract: CONTENTS 1. Stigma and Social Identity Preliminary Conceptions The Own and the Wise Moral Career 2. Information Control and Personal Identity The Discredited and the Discreditable Social Information Visibility Personal Identity Biography Biographical Others Passing Techniques of Information Control Covering 3. Group Alignment and Ego Identity Ambivalence Professional Presentations In-Group Alignments Out-Group Alignments The Politics of Identity 4. The Self and Its Other Deviations and Norms The Normal Deviant Stigma and Reality 5. Deviations and Deviance
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Book•
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TL;DR: In this article, the authors discuss the relationship between information control and personal identity, including the Discredited and the Discreditable Social Information Visibility Personal Identity Biography Biographical Others Passing Techniques of Information Control Covering.
Abstract: CONTENTS 1. Stigma and Social Identity Preliminary Conceptions The Own and the Wise Moral Career 2. Information Control and Personal Identity The Discredited and the Discreditable Social Information Visibility Personal Identity Biography Biographical Others Passing Techniques of Information Control Covering 3. Group Alignment and Ego Identity Ambivalence Professional Presentations In-Group Alignments Out-Group Alignments The Politics of Identity 4. The Self and Its Other Deviations and Norms The Normal Deviant Stigma and Reality 5. Deviations and Deviance
13,742 citations
TL;DR: In this paper, the authors describe two different ways in which the hedonic principle operates, one with a promotion focus and the other with a prevention focus, called regulatory focus.
Abstract: Publisher Summary The hedonic principle that people approach pleasure and avoid pain has been the basic motivational principle throughout the history of psychology. This principle underlies motivational models across all levels of analysis in psychology from the biological to social. However, it is noted that the hedonic principle is very basic and is limited as an explanatory variable. Almost any area of motivation can be discussed in terms of the hedonic principle. This chapter describes two different ways in which the hedonic principle operates—namely, one with a promotion focus and other with a prevention focus. These different ways of regulating pleasure and pain, called “regulatory focus,” have a major impact on people's feelings, thoughts, and actions that is independent of the hedonic principle per se. The chapter also presents some background information about another regulatory variable, called the “regulatory reference.” A self-regulatory system with a positive reference value essentially has a desired end state as the reference point.
2,887 citations
Book•
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2,471 citations