Assisted community living draws attention of communication researchers

When Mara Adelman traveled to Washington, DC, last October for the final showing of the entire NAMES Project AIDS quilt, she, like many others, was on a spiritual as well as a physical journey. Adelman specifically wanted to see and pay tribute to a panel dedicated to a group of people she had worked with, studied, and come to know and love.

Adelman began to volunteer at Bonaventure House in 1989 while a communication studies faculty member at Northwestern University; she thought it would be a good way of doing community service. Eight years later, with the publication of The Fragile Community: Living Together With AIDS (Lawrence Erlbaum Associates, 1997), Adelman is at the end of a project she had no idea would consume so much of her life when it began.

Bonaventure House is an assisted group living facility for people with AIDS. It is located in Chicago and is operated by The Alexian Brothers of America, a Catholic order. Its mission is to provide a place for people with AIDS to live when they have no other place to go. Many of the residents have no family or have been rejected by their families. Bonaventure House deliberately sets out to provide the atmosphere of an extended family for its residents.

Any group living arrangement is fraught with tensions and difficulties that need to be resolved. When the group consists of people who are in the last stages of a fatal disease, the tensions can be even greater. When administrators at Bonaventure House learned that Adelman specialized in social support, they invited her to study the community to help them learn how better to serve the needs of their residents.

And so, Adelman became a participant in the Bonaventure House community while studying it ethnographically. She decided early on that the best way of showing the community to itself would be to videotape interviews with the residents about their perceptions of how Bonaventure House constitutes a community, how people enter and leave the community, and how the community is maintained. With the collaboration of Peter Shultz, of Northwestern's Radio-Television-Film department, Adelman's interviews became The Pilgrim Must Embark: Living in Community. This half-hour video was shown on public television in Chicago as well as marketed commercially.

The major themes of the research emerged in the video. The community was formed through interaction among all of the participants: residents, staff, administrators. The basis for the community was expressed in rules and rituals-rules that covered how the community would maintain itself physically and rituals that covered how the community would maintain itself emotionally and spiritually. There were noticeable phases of entry and exit, and there were behaviors associated with entry and exit that were well recognized by the residents.

Larry Frye, a communication professor at Loyola University of Chicago, joined the project in 1991. He brought an expertise in group communication and a penchant for combining research traditions to the project. Larry helped to collect quantitative data about the residents' perceptions of various aspects of the Bonaventure House community, as well as contributing to the ongoing analysis of the qualitative and ethnographic data. Adelman and Frye's research resulted in publications that were aimed not only at the communication discipline but also more pragmatic work aimed at health care professionals and those who manage assisted living facilities.

Perhaps the major factor contributing to the uniqueness of Bonaventure House was the fact that its residents were dying. In fact, the average stay as of 1995 was 233 days, a little over seven months. While some of the residents moved on to be with family, friends, or to other facilities, many of them died. It was this continual need to cope with death that confronted the residents' ongoing lives most acutely. Adelman and Frye learned that nonverbal rituals proved to be the best means of coping. When someone had died, a burning candle set in a small wreath of flowers was placed in strategic locations in the house. While staff attempted to inform each resident individually of the death, the candle was immediately noticed. Memorial services were held in accordance with the wishes of the resident, but no matter what kind of service had been scheduled, the community gathered within a week of the death to remember the person who had "passed" (the word "died" was never used) and to release balloons with personal messages addressed to the person as a means of "letting go" of that individual from the community. The community also maintained an AIDS quilt panel with the names of those who had died, and it was that panel that Adelman, who is now on the communication faculty at Seattle University, visited on the National Capital Mall last October.

In the process, Adelman became committed to doing research that matters, not just to the discipline, but also to those being studied. "We consciously tried to produce research that empowers residents at Bonaventure House," she said. "We also wanted to give the community at large and the practitioners who work with people living with AIDS a framework for understanding how people struggle and sustain community in a group life environment. It seems to me that if we can understand the community process in this very fragile, tenuous, marginated community, then perhaps we can understand how we build community in our more enduring environments."