USD Magazine, Summer 2003

Linda Robinson keeps a reminder of the importance of her work on her office wall - a replica of her broth– er's patch on the AIDS quilt.

by Timothy McKernan I magine entering a profession dedicated ro preserving human life. Now imagine working to improve the quality of death. Welcome to the world of the AIDS hos- pice nurse. "It cakes a special person to even want to do chis," says USD nursing Professor Linda Robinson of nurses who care for patients in the final stages of AIDS. "In many ways, administering medical care is the easiest part. You work every day with people who are looking death in the eye. The psychological, social and cultural issues associated with chat are tremendous and vary from patient to patient. Dealing with chat can be very, very tough." To help prepare these caregivers for AIDS– care nursing - a specialization woefully short of experienced practitioners, yet one with an exploding patient population - Robinson chis summer is conducting a unique research project. She's equipping San Diego hospice nurses with tape recorders so they may easily document daily activities chat don't show up on medical records. With the results, she hopes to create a tern plate to more quickly prepare nurses for the highly specialized and emotionally stressful work AIDS-care demands. "There are factors associated with AIDS chat make it different from ocher chronic diseases such as diabetes or cancer, and, lee's face it, there is a stigma about AIDS and associated psychological problems for the victims," Robinson says. 'Tm hoping the nurses will put on tape the specific things they do to help in that regard, so nurses in the future will have a more clear idea of the things they can expect." Robinson says nurses can't be fully pre– pared for the final stages of AIDS care in a classroom setting. As patients live longer with the disease - and with medical insur– ers increasingly reluctant to absorb the

and complex it simply isn't possible to cake a generalise and say, 'do chis.' I'm hoping chis research will be a cool nurses can use to cut the learning curve." The project is the latest in a series of AIDS-related research projects conducted by Robinson, who serves as research chair of the Association of Nurses in AIDS Care. Her professional interest stems from a personal tragedy. Her brother, Matthew, died at age 28 of the disease in 1985, a time Robinson refers to as "the dark ages ofAIDS.'' She hopes chis rwo-year project will continue to shed light on the disease and chose affected by it. "There was so much fear of AIDS when Matt died, so much paranoia," she says. "Most of that came from a lack of good information, and chat's why I am so commit– ted to research in chis area. "People with AIDS are often blamed for having it, and it has repercussions for family members chat are much different than chose of any other disease," she adds. "AIDS can happen to anyone, and the best way to remove the stigma attached to it is through education - of the victims, their fami lies, health care providers and the public."

expense of extended hospital stays for chronic conditions -AIDS-care professionals are compelled to make house calls. "What chat means is chose who provide care for AIDS patients have to be prepared to deal with the emotional issues not only of the patient, but also of family members they encounter during home visits," Robinson says. "It truly is a one-of-a-kind type of nurs– ing, and there is simply not enough research in chat area." In documenting the role of home care– givers, Robinson also hopes to change health care policy and demonstrate chat in-home care - an approach many insurance compa– nies refuse to cover - is beneficial for the patient and cost-effective. "I believe what in-home nurses do has a profound effect on patient care and ought to be funded by health insurance, because health care is more than medicine," she says. "Managed care is a fact of life, and, unfortu– nately, AIDS doesn't appear to be going away any time soon." The nationwide nursing shortage is com– pounding the need to expedite the training for AIDS-care specialists, she adds. "There aren't enough nurses, period," Robinson says, "and the care is so specialized

SUMMER 2003

II