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The importance of a self-governing organization in informing people with HIV/AIDS.

Van den Berg D; International Conference on AIDS.

Int Conf AIDS. 1998; 12: 741 (abstract no. 34285).

ISSUES: 18 months after the introduction of protease-inhibitors, more became known about the effect of these drugs in combination with other anti-retroviral medication. Apart from more information on side-effects and (non) options to switch, this new-found knowledge included the various problems people encountered with keeping up treatment, and the treatment's impact on their social life. It was also found that some information provided by various care givers to people with HIV/AIDS was completely contradictory, and moreover, it was noted that there are regional differences in treatment options. METHOD: The Dutch HIV Association, an interest group run for and by people with HIV, decided to inform its members and those directly involved about the latest medical developments, and to give the opportunity to share experiences. The HVN also thought it of equal importance to provide care givers with the same information. The HVN set up a program organized on eight locations. Both its preparation and realization was completely carried out by the HIV Association, that is, by people with HIV/AIDS. During the course of the project, the various "center hospitals", the regional offices of the HVN, and other organizations worked closely together. The exchange of information and experiences took place by way of lectures, panel discussions, and workshops. There were separate workshops for people with HIV/AIDS and care givers so as to give everyone the opportunity to speak as openly as possible. People with HIV/AIDS could opt for four workshops concerned with experiencing sexuality, therapy support, medical questions, and psychosocial aspects. In the workshops for care givers, a variety of disciplines was represented, which made it possible to get an insight into the problems various care givers are confronted with. Every day was evaluated, and the evaluations will serve as a basis for future activities in the areas in question. RESULTS: In a relatively short period of time it proved possible to provide both people with HIV/AIDS and care givers on various locations with the same information. Moreover, center hospitals, self-governing organizations, and regular institutions are now closely cooperating. And, based on the evaluations, it is now possible to organize activities that answer the needs of people with HIV/AIDS, and those directly involved, in a number of areas.

Publication Types:
  • Meeting Abstracts
Keywords:
  • Acquired Immunodeficiency Syndrome
  • HIV Infections
  • HIV Seropositivity
  • Health Services
  • Health Services Needs and Demand
  • Organizations
  • Personality
  • Public Opinion
  • Sexual Behavior
  • education
  • methods
  • organization & administration
  • therapy
Other ID:
  • 98401286
UI: 102230651

From Meeting Abstracts




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