The Presence of Absence: The Effect of HIV Sero-Status on the Bereavement Experiences of Long-Term Survivors of Multiple AIDS-Related Losses

AIDS (Acquired immunodeficiency syndrome)has emerged as an enduring and complex medical and social reality in Canada. With each AIDS-related death, an extensive network of family, friends, colleagues, neighbours, and health care providers is left behind to grapple with the losses. This research study examines one facet of the human experience of HIV/AIDS: the bereavement experiences of HIV-infected and HIV-affected loss survivors within an AIDS-impacted community in Canada. From in-depth interviews and 3 dialogue groups with 27 AIDS-bereaved long-term survivors, this study presents a rich description of the complex dimensions of AIDS-related multiple losses. Regardless of HIV sero-status, bereaved survivors face the stigma associated with the illness itself and the continued marginalization of communities most impacted by HIV. However, the experiences of these survivors also point to creative strategies of resiliency and coping through constructing meaning, recreating an assumptive world and re-engaging the heart. The Presence of Absence offers organizational and leadership strategies for building effective and relevant community-based responses for this bereaved population.