Telephone support groups for HIV-positive mothers whose children have died of AIDS.

Abstract

The telephone was first used as an outreach tool in 1953 for suicide prevention by the Samaritans (Grumet, 1979). Since then telephone support has been used for crisis intervention (Hornblow & Sloane, 1980), outreach for physically disabled people (Evans, Fox, Pritzl, & Halar, 1984; Evans & Jaureguy, 1985), ongoing psychotherapy (Shepard, 1987), elderly individuals with visual impairments (Evans & Jaureguy, 1982), and for those HIV-infected people living in rural communities (Rounds, Galinsky, & Stevens, 1991). From 1990 to 1992 and several of my colleagues conducted a study on the effectiveness of telephone support groups (Wiener, Spencer, Davidson, & Fair, 1993). We ran telephone support groups for children with HIV and well children living in families affected by AIDS. We also ran these groups for mothers and fathers with HIV and well parents, adoptive and foster parents, and grandparents. The telephone support groups were a creative and therapeutic way to help children with HIV and their family members, who did not have access to or did not feel comfortable attending a face-to-face group, to cope with the effect this disease had on their lives. The telephone groups provided a sense of confidentiality not afforded in a face-to-face group and helped create a climate of acceptance and support for individuals who often were isolated because of the stigma associated with HIV/AIDS and the lack of adequate support networks in their communities. Our telephone support groups were short-term, meeting once a week for one hour and 15 minutes and lasting no more than six weeks. The leader provided basic structure to the groups by opening the first session with an explanation of the purpose of the group and then asking the members to introduce themselves. In each subsequent group session, the leader began by summarizing the previous group session and then opening the discussion to the group members. For the last group session, the members were asked to prepare a story, poem, or prayer that had been a comfort to them. The leader remained an active participant by sharing a poem as well. During the last group, the members also were invited to discuss their feelings about the group experience. In each group session conducted during the study, as well as the many telephone groups conducted since the study was complete, members chose to share their names and telephone numbers either during or at the end of the last group session. In the midst of the HIV epidemic, one of the greatest challenges to social work is finding the time, energy, and skills to help the bereaved. In a medical setting, social workers often find themselves immersed in a multitude of medical, social, financial, and emotional crises. When a moment is found where a practitioner can take a deep breath - no one is standing at the office door, the phone is not ringing, and the list of phone calls to return is manageable - he or she cherishes that moment. But for me, that moment frequently has been filled with guilt, because the people who often need me the most are the parents of children who have died. The parents are no longer surrounded by their child's medical emergencies, but often wish they were. As horrific as the child's course of illness might have been, most report wanting to go back to those days, even just for a day, to hold their child once more. During the flurry of activity and complex care that often precede the child's death, the quiet that follows can be deafening. Parents frequently report feeling abandoned by medical staff. As one parent stated, I know that people need to go on helping the living, but what about me? How can they go from being here all the time, to not even calling. This is just one more loss that parents need to adjust to and mourn. Being acutely aware of this sense of isolation, try to keep in touch with those parents weekly, for at least the first few months. However, between 1994 and 1995 it seemed that at least a fourth of my days were spent on the phone with bereaved parents. …