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Supporting Caregivers Community Providing Palliative care to PLWHA

As the HIV/AIDS epidemic continues to intensify and evolve in Irkutsk, there is a growing need to improve the knowledge and capacity of caregivers engaged in the care and support of people living with HIV/AIDS (PLWHA). In Russia, health care providers are still more likely to stigmatize PLWHA rather than accept them, and family members are ill-equipped to cope with the range of needs loved ones with HIV/AIDS have. Stress, burn out, lack of coping skills, and ignorance about how the virus spreads is common among caregivers. In response, the Russian Red Cross/Irkutsk is implementing a project aimed at improving the knowledge, skills, and coping mechanisms of professional and informal caregivers involved in the care and support of PLWHA thereby improving the well-being of PLWHA, including HIV+ pregnant women and their children. The project is based on four guiding principles of community participation, stakeholder involvement, strengthening and broadening the partnerships, and documenting the best practices and lessons learned.

Implementation Period: 2006 – 2007

Project purpose: Improve quality of life of people living with HIV/AIDS (PLWHA) through increased quality of care and support services by care professionals and immediate surroundings of PLWHA.

Target group: People providing care and support to PLWHA (care professionals -medical workers; informal caregivers-family members within the household and friends).

Project Objectives:
Objective 1: Improved professional skills of both care professionals, formal and non formal caregivers.
Objective 2: Reduced stigma and discrimination directed towards caregivers and PLWHA.
The anticipated outcomes of the project include 1) Improved attitudes of professional caregivers toward themselves and PLWHA; 2) Improved knowledge of caregivers in HIV/AIDS and home-based care of PLWHA; and 3) Improved capacity and coping skills of informal caregivers working with PLWHA.
The program is targeted over 150 informal caregivers, family members, including immediate/extended family members and volunteers. The program is also targeted over 1400 professional caregivers, including health care workers from medical/health facilities. Emphasis is placed on health care providers because in Irkutsk, and Russia in general, many health care providers are misinformed and afraid of patients with HIV/AIDS. This poses a major obstacle in recruiting health care workers and psychologists to provide care and support for people with HIV/AIDS. In order to decrease stigma in a community, it is important to start with professionals who work with PLWHA. To this end, the program involve a greater number of medical workers, including gynecologists, pediatricians, and AIDS Center specialists. Through mass media and informational campaigns, the project is expected to reach almost 200,000 beneficiaries in Irkutsk Oblast, including over 11,500 PLWHA who stand to benefit from better care and support from their caregivers. Indirect beneficiaries of the project also include over 150 HIV+ pregnant women and and children born to HIV+ women.

Main Achievements:

  • Trainings on reduction of stigma and discrimination (129 people)
  • Trainings on palliative care (8 people)
  • Trainings on development of self-regulation and empathy (61 people)
  • Trainings on prevention of HIV among PLWHA (68 people)
  • Trainings on prevention and reduction of the professional “burnout” syndrome for the care professionals and immediate surroundings of PLWHA (66 people)
  • Establish support groups for PLWHA and their immediate surroundings (83 people)
  • Psychological counseling sessions for family members of PLWHA and the care professionals (245 people)
  • Establish Balint groups (37 people)
  • Publish information materials, promoting development of skills on care and support for PLWHA:
  • Manual “Care and support for PLWHA” (2000 copies)
  • Leaflet “Prevention of the emotional “Burnout” syndrome” (1000 copies)
  • Manual “Counseling of HIV infected people” (500 copies)

Financial donor: United States Agency for International Development (USAID) through Pact’s Community REACH program.
Dr. Anna Zagainova, Project Manager
Tel. (3952) 200393 

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