Researching the effects of AIDS on families.

Abstract

The epidemic of acquired immunodeficiencysyndrome(AIDS) has beenspreadingin theUnitedStatesfor sevenyearsnow. As a result, a great dealhasbeenwritten abouttheillness, andits effectson personswith AIDS (PWAs). But,thefactis that“AIDS affectsand is affectedby the responses of importantothersin thePWA’s context.” Yet, we know next to nothing abouttheactualresponsesof theseimportantothers,especiallythe families of PWAs. How do families interact with their loved ones,onceAIDS is detected?What are their resources when AIDS hits home?Does AIDS changerelationshipsin families? Are thelivesof PWAsextendedin families conveyingstrongsupporto thePWA? Thesequestionsareat the heartof my longitudinal,qualitative study of PWAfamiliesinthetn-state,NewYork area, which began in Novemberof 1987andisnowinprogress.Otherkey questionsI am examiningare: How openis family conununicationabout the PWA’s lifestyle?Which stagecontainsthe greatestemotionalupheaval andanguishfor families:thediagnosis of AIDS, the period of living with AIDS, the dying stage,or deathand bereavement?What, if any, familial falloutoccursin thesestages?If atall, how do familiesdisclosethe diseaseto extendedfamilyandfriends?Whatare patternsof social support,social distanceandstigmashownby families andfriends?And, after the deathsof PWAs, how do familiesgrieve,utilize mourningrituals,andendure?This investigationissupportedinpartby aresearchgrantand a scholarlyresearch awardfrom PaceUniversity.