HIV in Newark: women and Kleinman's Nine Questions

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How did women understand HIV once they were diagnosed?
  • despite knowing of and knowing people with HIV, they were surprised at the diagnosis
  • questions allow you to understand the attitudes toward HIV infection, AIDS symptoms, and the experience of illness for each individual and as a whole.
What do you call your problem?
  • Medical terminology
    • HIV, HIV positive or SIDA (spanish)
    • "the virus" (support groups and SS agencies
  • Folk terminology
    • the monster/the green monster/pac man-little agency
    • I am infected/HIV positive/infermita//-the sick role
    • this thing/un descuidado -not naming, the result of careless neglect
  • Alternative Model of illness
    • use the AA/NA framework to understand HIV
    • the second disease
    • in the process of learning to practice "self care"
What do you think caused your problem?
  • Personal explanations
    • from husbands or boyfriends-levels of anger
    • from unprotected sex/trading sex for money -regret
  • Structural explanations
    • personal life structure (addiction, neglect, prostitution)
      • SAVA syndemic: intertwines substance absuse, violence and HIV/AIDS as a cause for the urban HIV epidemic
      • farmer: structural violence
    • virus as a government plot/human creation/experiment to target disenfranchised
      • women of color
Why di your symptoms start when they did?
  • Physiological explanations
    • only after taking HIV medication
    • medication side effects as the problem
  • Psychological
    • trauma of diagnosis
    • imagining worst case scenarios (stress)
  • Spiritual
    • wake up call
    • higher power sent them a message
    • symptoms are not all negative
What does it do to you? How does it work?
  • Physical symptoms
    • low energy/fatigue
    • swelling
    • migranes
    • lypodystrophy
    • rashes
    • infections (toxoplasmosis snd/ thrush)
    • neuropathy
    • confusion and memory loss
    • pneumonia
    • nose bleeds
  • Depression
    • rare but present (surprising to researcher)
  • Radical life change
    • loss of hope
    • radical change in life situation
    • some saw this as a source of depression, others as a positive outcome
How severe is it? Will it have a long or a short course?
  • Guarded Optimism
    • ways to meet the challenge
    • finding support systems
    • looked to low viral loads -not serious
    • oopions might change daily
  • Visions of a Limited Future
    • how much time do they have left?
    • turned to faith
    • resignation
    • avoidance
What do you fear most about it?
  • Parenting anxieties
    • fear of having to abandon children
  • Stigma and fear of becoming grotesque
    • worst case AIDS death
    • rejection by loved ones
    • wear illness on their faces and bodies

  • Individual fears
    • medications more than disease
    • confinement
    • loss of mobility and independence
    • loss of future love/relationships/sex
What are the chief problems it causes?
  • Coping with discrimination
    • stigmatization
    • economic deprivation
    • firing
    • public humiliation
    • humiliation and fear which accompanied "passing" (stress of lying)
  • Economic hardship and household management
    • inability to work
    • expensive drug regimen
    • strategies
      • dependence on SS agencies
      • took childrens leftover medicines
      • rent control/HUD apartments (housing the biggest challenge)
      • chronic exhaustion
What kinds of treatments do you think you should receive?
  • Satisfaction with standard care
    • healing relationships and collaborative, nonjudgmental
  • Expanding treatment options
    • dissatisfaction with medication options
    • looking toward alternative medicine
    • herbal traditions of parents

Comments

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