Helping the Helpers: A Support Group for Family Members of Persons with AIDS

Abstract

AIDS is perceived as altering the life of one stepped by holding meetings just twice person. This is not the whole truth. As the a month. patient becomes slowly dependent upon someone else, finally needing help all day, all week, the disease slowly destroys the Participants quality of life for two people. The caregiver M . f , made to the m-onn of the AIDS patient is also held hostage by MoSt reterrals were made t0 the Ae diseas^ (Koehn, 1987, p 1) ' a family member called the AIDS Project of Los Angeles (APLA) m search of support. Individuals were referred to Despite the abundance of attention a group leader for screening. The in given to acquired immune deficiency dividuals were instructed that who was syndrome (AIDS), little has been seen and what was said in the group was focused on the problems facing families confidential. Individuals were asked to and significant others. The problems inattend at least two meetings before elude the overwhelming fear most famideciding to leave the group, ly members have in sharing the news of Since its establishment in 1985, the an AIDS diagnosis, the first-time exgroup has served 40 family members or posure to a family member's homosexsignificant others of 23 persons with uality, intravenous (IV) drug use, or AIDS and one person with AIDS-related both, and the caregivers' anger and complex. These include 10 sisters, eight fatigue. This article examines the formothers, three sisters-in-law, three mation and composition of a support wives, three fathers, two friends, one group for families and significant others stepdaughter, one fiance, two brothers, of persons with AIDS and shows how one aunt, one uncle, one grandmother, the group responded to its members' exone grandfather, one mother-in-law, one periences. It provides implications for father-in-law, and one lover. While all of practice, reveals the underserved the persons with AIDS were male, the populations affected by AIDS, and group served 32 females but only eight presents the need for supportive care males. The group has comprised for the AIDS family caregivers. predominantly white persons, but in cluded one Asian person and two ~ ^ Hispanic persons. In educational roup orma ion background, the members have ranged The group was designed to serve both from high school dropouts to graduate the relatives of persons with AIDS and degree-holders including a physician and significant others (originally defined as a dentist. Socioeconomically, they have either lovers or primary caregivers). The ranged from welfare mother to upper group met twice monthly in a San Fermiddle-class housewives to profes nando Valley hospital. The San Fernansionals. There have been three lesbians do Valley is a residential community and one male homosexual. Several of the north of Los Angeles. While group heterosexuals are widows, some di members sometimes expressed a desire vorced, some with long-term marriages, for more frequent meetings, weekly some never married. In age they have meetings might have become more burvaried from early twenties to late sixties, densome than helpful. More crucially, Members came from both stable and burnout of the cofacilitators was sidechaotic family backgrounds. Currently, the group has approx imately 12 active members, eight of whose loved ones with AIDS have died. Average attendance, excluding group leaders, has been between six and eight members. Some members attended other support groups. One mother at tended Mothers of AIDS Persons (MAP) and indicated that she would like to go again. Another mother, whose son has died, attended a bereavement group, but indicated that she was not entirely com fortable there because most of the group was composed of gay lovers.