Dr. Tauseefullah Akhund M.B.B.S, MPH (Sydney), (Australia)

Executive Summary

The HIV epidemic has created a terrible burden for millions of individuals, families and communities worldwide. Relieving the suffering requires improved healthcare, better access to the treatment, more vigorous prevention efforts, more effective social outreach and support for those most vulnerable. However, stigma and discrimination blocks the march forward against HIV/AIDS.

This project aims to address stigma and discrimination against HIV/AIDS patients and formulate strategies / procedures / policies for improved management of these ill fated people.  

This project is combination of situation analysis through a scientific study to understand various dynamics of management of HIV/AIDS patients, followed by formulation of strategies / procedures based on findings of study and application of appropriate interventions at various levels. This study/project is spread over a period of two years.
TABLE OF CONTENTS

 BACKGROUND

RATIONALE

STUDY/PROJECT GOALS 

OBJECTIVES

RESEARCH QUESTIONS 

METHODOLOGY  

STUDY/PROJECT SETTING  

STUDY/PROJECT DESIGN  

SAMPLING FRAME  

SAMPLE SIZE 

VARIABLES 

BUDGET

BACKGROUND

Acquired immunodeficiency syndrome (AIDS) is the terminal visible event in the sequence of occurrence beginning with the entry of the human immunodeficiency virus (HIV) in the host. The most common mode of HIV transmission is sexual contact, and sexual transmission has become the conventional explanation for the HIV epidemic in several parts of the world (1). Above all, nearly decade after infection HIV causes no noticeable signs of disease in the human host. Such HIV infected persons, termed silent carriers, represent an important component in the transmission cycle. During this asymptomatic time, the virus has ample opportunities to spread from one unsuspecting host to another, thereby ensuring its survival. Most often HIV moves from infected to susceptible people by vaginal or anal intercourse, exchange of blood, intra venous drug or from an infected mother to child. As a result, the HIV pandemics raised a number of social, behavioral, legal, ethical and moral issues.

Management of AIDS is somewhat different from other diseases because, only clinical management is not sufficient, psychological and behavioral management is also necessary. Management of AIDS includes:

• Education about HIV.

• Assessment of Individual Needs.

• Community Outreach and Education.

• Advocacy.

• Translation Service.

• Coordination of Care Plan.

• Access to Medications and Clinical Trials.

• Support Groups.

• Access to Mental Health Therapists.

• Legal and Financial Assistance.

• HIV Counseling and Testing Referrals.

The management of AIDS also includes an intentional approach to remove certain barriers to compliance, such as, stigma and discrimination in different settings, especially in hospitals. Stigma often leads to discrimination and this, in turn, leads to human rights violations for people living with HIV/AIDS and their families. Stigma and discrimination fuels the HIV/AIDS epidemic. Such behaviors hamper prevention and care efforts by sustaining silence and denial about HIV/AIDS. This may reinforce the marginalization of people living with AIDS and particularly those who are vulnerable to HIV infection. Since HIV/AIDS is linked to social taboo, such as sex and drug use, there is an enormous level of disrespect, denial, fear and ignorance about the disease in most communities.  This may partly be due to these fears and prejudices that people stigmatize and discriminate. Discrimination occurs when negative thoughts lead people or institution take, or omit to take, action that treats a person unfairly and unjustly on the basis of their presumed or actual HIV/AIDS status. Some examples of discrimination include hospital or  prison staff denying health services to a person living with HIV/AIDS; employers terminating worker from his/her job on the grounds of his/her actual or presumed HIV status; or families/ communities rejecting those living with, or believed to be living with, HIV/AIDS. A series of interviews published in the 2001 South African health review underscore concerns that doctors and nurses in public hospitals and clinics are major culprits discriminating against people with HIV. Being tested without consent, broken confidentiality with HIV test results and callous treatment were some of complaints leveled by HIV positive patients against public health workers.

RATIONALE

This study/project aims at creating space for all people living with aids in different settings; especially in hospital environment, where most of them seek medical advice. This study/project shall improvise core framework for any change/s at the institutional and individual levels and across all sectors that in turn shall help create an environment of understanding, empathy, love, trust, hope, human rights and dignity for those most in need, that is, HIV/AIDS patients.

STUDY/PROJECT GOALS

• Educating the public and community regarding stigma and discrimination.

• Encouraging communities to support people with AIDS.

• Decrease stigma and discrimination against HIV/AIDS patients at healthcare and other settings.

OBJECTIVES

• To identify the factors leading to stigma, discrimination and human rights violations.

• To identify the roles of individuals and institutions in contributing to stigma and discrimination

• To increase self-awareness and understanding of individuals and institutions in hospital and community settings to combat stigma and discrimination, towards people living with HIV/AIDS, their partners and families, as well as marginalized groups.

•  To frame recommendations / interventions for policy makers and other influential groups for improvements in social wellbeing of HIV/AIDS patients.

RESEARCH QUESTIONS

• What are factors leading to of stigma and discrimination against HIV/AIDS patients?

• Who perpetuates discrimination?

• How serious is contribution of stigma and discrimination to manage AIDS?

METHODOLOGY

STUDY/PROJECT SETTING

This study/project shall be based at some major public and private hospitals and in communities in two major towns of province of Sindh, Pakistan. Duration of this study and project shall be approximately two years.

STUDY/PROJECT DESIGN

This study/project shall be based on:

• In-depth interviews of communities, friends and relatives regarding HIV/AIDS patients.

• Case studies of HIV/AIDS patients.

• Review of policies and procedures, safeguarding patient’s rights to confidentiality and impartiality.

SAMPLING FRAME

Samples for this study shall be taken from different groups who may have varying degree of roles. These roles may be contributory to perpetuating stigma, discrimination and human rights violations and/or groups working, one way or other, to address the stigma, discrimination and issues arising thereof. The target groups identified for this study/project are:

1. Healthcare workers, such as doctors, paramedics, nurses and orderlies.

2. People living with HIV/AIDS.

3. Organizations / Advocacy groups working in the field of HIV/AIDS.

4. The general public.

5. Vulnerable / high risk groups.

6. Teachers and students.

7. Government authorities, politicians and parliamentarians.

8. Journalists and media.

9. Legal system.

10. Workers and employers.

SAMPLE SIZE

• At least hundred patients who are diagnosed as HIV positive.

• Four major hospitals each in public and private sector.

• Health care providers directly linked to care of HIV positive cases.

VARIABLES

• Demographic/personal information of patients, community and relatives.

• Socio economic status of patients, friends and relatives.

• Perceptions of healthcare providers, patients and communities about disease.

• Policies and procedures in different settings.

 BUDGET