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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

Hepatitis & Stigma

  


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        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.

        Three different attitude functions have been identified that serve these symbolic purposes.

  • Attitudes serving a value-expressive function enable heterosexuals to affirm their belief in and adherence to important values that are closely related to their self concepts.
  • When attitudes serve a social expressive function, expressing the attitude strengthens one's sense of belonging to a particular group and helps an individual to gain acceptance, approval, or love from other people whom she or he considers important (e.g., peers, family, neighbors).
  • Finally, attitudes serving an ego defensive function lower a person's anxiety resulting from her or his unconscious psychological conflicts, such as those surrounding sexuality or gender.
 


        Name-based surveillance cannot be properly considered, as a policy, by itself. Its significance is much better appreciated in the context of the social risks and symbolic politics of HIV, as these are subjectively experienced by people with and at risk of HIV. Although often talked about, the social risks of HIV infection are poorly understood. To the extent that these risks have been addressed by privacy and anti-discrimination laws, the solution has been less complete than many public health professionals appear to believe: developments in law and policy, including the increasing prevalence of criminal HIV transmission laws and proposed changes in HIV testing and counseling standards, are environmental phenomena that help explain the intensity of opposition to surveillance by name. This essay proposes a holistic heuristic for practical prevention policy making. Rather than focusing piecemeal on specific "barriers" to testing and care, the surveillance debate counsels public health policy makers to provide the conditions of opportunity, information, motivation, and confidence that people with HIV need to accept an effective program of early intervention.

 

 


 

 

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