The UnSeen,

The UnCounted,

The Undiagnosed Network

Prisons-the Epicenter of Infectious Diseases

"Conditions in society which are not defined as a problem and for which alternatives are never proposed, never become policy issues. Government does nothing and conditions remain the same." T.R.Dye, Policy Analyst
(From the book "Understanding Public Policy"

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Hepatitis & Stigma

Topics and/or research reports can be found near the bottom of this page. Thank you

For the care giver -- family member, spouse, lover or partner, friend, or volunteer buddy -- providing informal support and assistance to a patient throughout the course of the illness can be particularly stressful. Care giving involves a restructuring of care givers' personal and social lives, adversely affecting their outside employment, leading to feelings of fatigue, emotional and physical exhaustion, and imposing severe financial burdens. When an illness is long and extended, such as AIDS, care givers are at risk for becoming over-extended and depleting their physical, emotional, and financial resources. Consequently, patients may find that when their needs are greatest, they may have exhausted their informal resources for assistance, placing themselves at high risk for unmet needs. Read more

"Hepatitis C (Hepatitis C Virus) is a highly stigmatized disease. Revealing a diagnosis of Hepatitis C Virus can cause anxiety on a number of levels. The ramifications of this disclosure can impact medical, marital, family, insurance and other area of one's life. Common feelings that people experience when considering disclosing their Hepatitis C Virus status include:

Fear of disclosure to family and friends as well as disclosure in the employment environment
Fear of seeking medical treatment and having Hepatitis C Virus documented in their medical records
Fear of denial of health and life insurance
Fear of infecting loved ones
Fear of dying
Fear of being viewed as a disease rather than as an individual
Fear of losing control over bodily functions and life
Fear of losing employment

Most of these issues can be helped by telling family, friends or business acquaintances and seeking either professional or peer support. However, people have to be careful who and what they tell people because of potential consequences in their personal and business life.

ADDITIONAL ARTICLES:

Document Name & Link to Document

Description

Attitudes About Hepatitis C Education Campaign for People Newly Diagnosed with Hepatitis C	This report presents the results of five focus groups conducted by Market Street Research, Inc. among people recently diagnosed with hepatitis C, including people in recovery and those who contracted the virus through a blood transfusion or organ transplant	226 kb pdf
Burden of Infectious Disease among Inmates of and Releases from US Correctional Facilities, 1997	Although some figures have been published, comprehensive statistics demonstrating the burden of infectious disease among inmates have been lacking.	119 kb pdf
Caregivers	Despite calls for a shift from hospital to community based care for people with HIV infection there has been some speculation about whether the facilities will actually be available. One central element of community care is informal care.
Changing the Stigma of and Levels of Awareness for Hepatitis and HIV/AIDS	Many people believe that there are just a few ways to acquire either of these diseases and that they occur due to specific life-style behaviors. This is why, in constructing the survey we attempted to reveal the possibility of other sources in lieu of basic blood-to-blood or sexual preferences
Conceptualizing Stigma	We define stigma as the co-occurrence of its components—labeling, stereotyping, separation, status loss, and discrimination—and further indicate that for stigmatization to occur, power must be exercised	213 kb pdf
COUPLES' PERCEPTIONS OF WIVES' CFS SYMPTOMS, SYMPTOM CHANGE, AND IMPACT ON THE MARITAL RELATIONSHIP	The purpose of this descriptive correlational study was to describe the differences in couples' perceptions of wives' Chronic Fatigue Syndrome (CFS) symptoms and to describe the relationship between changing symptoms and the marital relationship
Cure versus care	The term 'Quality of Life' is often heard... and said at the Hospice to remind us of our main aim and purpose. As most of our patients have been diagnosed with a terminal disease, further treatment is often inappropriate and cure is not always an option.
Current Practice Patterns of Primary Care Physicians in the Management of Patients With Hepatitis C	We administered a survey to 1,233primary care physicians in a health maintenance organization (HMO)in April 1997 to assess their knowledge of the risk factors forHepatitis C Virus infection and approach to the management of 2 hypotheticalHepatitis C Virus antibody-positive patients
Differences in Knowledge of Hepatitis B Among Vietnamese, African- American, Hispanic, and White Adolescents in Worcester, Massachusetts	Adolescent knowledge about risk of infection was low in this study. Attention should be directed at providing health education on hepatitis B to adolescents, particularly to Vietnamese. Health care providers, community health educators, and others engaged in the effort to control and eradicate hepatitis B should be sensitive to the unique educational and cultural needs of high-risk southeast Asian adolescent populations.
DISABILITY AWARENESS AND CHANGING ATTITUDES	Finds that volunteer college students who have had previous contact with individuals who have a physical disability are more at ease with their peers who are disabled than those who have had no contact. Suggests that contact may alter the pattern of thoughts concerning interaction with people who have a disability.
Disclosure	The ramifications of this disclosure can impact medical, marital, family, insurance and other area of one’s life.
Fear of dying and HIV infection vs. hepatitis B Infection	Fear of certain death seems to account for the greater concern about exposure to HIV than to Hepatitis B.
Hepatitis C…Overcoming the Barriers	Presentation concerning HCV	534 kb pdf
HIV and Hepatitis C in non-MSM Rural Communities: Issues and Interventions	Power Point presentation-Rural communities struggle with issues of stigma and lack of information	219 kb
On Stigma and its Public Health Implications	In addition to variability in its definition the stigma concept and research based on it have been criticized for the narrow and biased vision it has allowed. Two critical challenges can be identified. The first is that many social scientists who do not belong to stigmatized groups and who study stigma, do so from the vantage point of theories that are uninformed by the lived experience of the people they study
PHENOMENOLOGY	Phenomenology is a movement in philosophy that has been adapted by certain sociologists to promote an understanding of the relationship between states of individual consciousness and social life. As an approach within sociology, phenomenology seeks to reveal how human awareness is implicated in the production of social action, social situations and social worlds
Preventing Discrimination and Reducing Stigma and Isolation	In order to provide better access to health services for people with hepatitis C, it is particularly important that the discrimination common in health care settings is acknowledged and actively challenged	413 kb pdf
Promoting health, reducing stigma: Closing the inequality gap in access to primary health care for women living with Hepatitis C	One of the major challenges facing women diagnosed with hepatitis C is overcoming the stigma attached to this illness which frequently acts as a barrier to appropriate and timely primary health care.
Report of the enquiry into hepatitis C related discrimination	Concepts of health and illness, well-being and disease are cultural constructs—they vary with time and place, with ideology and belief. Over the course of history our views about health and illness have changed	465 kb pdf
REFRAMING WOMEN'S RISK	These women have been disproportionately poor, African-American, and Latina. Their neighborhoods have been burdened by poverty, racism, crack cocaine, heroin, and violence.
Stigma of Hepatitis C and Lack of Awareness Stops Americans From Getting Tested and Treated	Americans' misunderstanding of the potential dangers of hepatitis C is causing many with risk factors to forgo testing and treatment, according to a landmark survey commissioned by the American Gastroenterological Association (AGA).
Through the Looking Glass: The health and socio-economic status of hepatitis C positive Transfusion Recipients	This study deals with the socio and economic impact of transfusion recipients and what occurs to them over time	305 kb pdf
WHEN FAMILY MEMBERS JUST CAN'T UNDERSTAND	There are probably few things in life that are more hurtful than being rejected by family members when we need them most. Unfortunately, many patients find that a diagnosis of hepatitis C not only causes friends to scatter, but also contributes to some families literally splitting apart.
Why conduct an enquiry into hepatitis C related discrimination	In recognition of the seriousness of the issue of hepatitis C related discrimination, the dearth of research, and the need for improved strategies to prevent and eliminate such discrimination…the anti-Discrimination Board of NWS undertake a statewide inquiry into Hepatitis C related discrimination to examine the nature and extent of hepatitis C related discrimination, and recommend legal and administrative changes across a wide range of activities.	442 kb pdf

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