Understanding AIDS-related bereavement and multiple loss among long-term survivors of HIV in Ontario.(Report)

Abstract: AIDS-related bereavement has been linked in recent studies with rapid HIV-symptom onset and increased mortality among people living with HIV. Social support and social environments are important elements in grief resiliency and hastened recovery. This study examined the impact of retreats conducted by the AIDS Bereavement Project of Ontario to address these issues. Participants (N = 67, M = 53, F = 13, Trans = 1) were primarily HIV+ (86%), self-identified as gay (64%) or straight (19%), and were between 34-63 years of age. Those who were HIV+ had been living with HIV for an average of 12 years (6-18). Participants had experienced an average of 157 AIDS-related deaths, 76 non-AIDS-related deaths and multiple non-AIDS related losses. Measures of AIDS-related bereavement, social relationships, sexual relationships, psychosocial well-being and resiliency indicated some improvements over baseline in each domain at three week and/or three month follow-up. The policy and community-based partnerships that shaped this program of research are described, as are possible implications for HIV prevention.

Introduction

Communities across Canada have experienced tremendous loss of life from the human immunodeficiency virus (HIV). As of June 30, 2007 a total of 63,604 positive HIV test results have been reported to the Public Health Agency of Canada (PHAC, 2007). For the same period, Acquired Immune Deficiency Syndrome (AIDS), the condition ascribed to the effect HIV has upon the human immune system, has been reported for a total of 20,799 people in Canada (PHAC, 2007). As of December, 2006 a total of 13,347 have died from AIDS (PHAC, 2006a). Of the 18,560 adult male AIDS cases reported, 76.1% (14,105) have been gay, bisexual or other men who have sex with men (PHAC, 2006a). In the absence of a cure, AIDS-related loss and bereavement is ongoing; and based on current HIV test reports, losses in Canada will continue to be most centred in the gay and bisexual male community (PHAC, 2006b). For people, primarily gay and bisexual men, who continue to survive the first era of AIDS (1983-1995), we use the term long-term survivors (LTS). These individuals have experienced the cumulative loss of partners, lovers, spouses, friends, brothers, and acquaintances. For some, the number of deaths experienced has been in the hundreds, equating to an entire decimation of individual social networks and their known communities.

AIDS-related bereavement has been cited as multiple, repetitive and complex, and directly related to the psychological and physical health of people living HIV-positive (Sikkema, Hansen, Meade, Kochman, & Lee, 2005). A growing number of studies report that AIDS-related loss among HIV-positive persons is strongly and significantly associated to early onset and/or frequency of HIV symptomatology, poor cellular immune measures, and faster progression to AIDS (Bower, Kemeny, Taylor, & Fahey, 1998, 2003; Goodkin et al., 1996; Goodkin et al., 1998; Goodkin et al., 1999; Kemeny & Dean, 1995; Martin & Dean, 1993; Reed, Kemeny, Taylor, & Visscher, 1999; Sikkema et al., 2000). In addition, psychosocial factors, such as negative affect, depression, stress, and limited social support have also been significantly associated with HIV disease progression and mortality (Farinpour et al., 2003; Leserman et al., 2000; Leserman et al., 2002; Moskowitz, 2003; Theorell et al., 1995). AIDS-related multiple loss has also been shown to affect the psychological and physical health of HIV-negative gay men, who are also long-term AIDS-related multiple loss survivors (Mallinson, 1999).

Bereavement services assist people in response to past, current and anticipated bereavement, and have the potential to improve individual resiliency and health-related quality of life amidst ongoing AIDS-related loss (Sikkema et al., 2005). Supportive bereavement services were recently noted in an analysis of qualitative interviews from a large Canadian cohort study as an essential service for both HIV-positive and HIV-negative gay and bisexual men (Haubrich et al., 2006). In particular, the contribution of bereavement support to sustaining resiliency in a reality of ongoing loss and community devastation is also being recognized as important from a service provision, occupational health, employment satisfaction and staff retention perspective for both people living HIV-positive and those providing care (Demmer, 2001; PBCHRWG, 2003).

Two comprehensive intervention studies have examined the effectiveness of bereavement support in the address of psychological trauma, distress, psychosocial impact, bereavement symptoms and health outcomes for people who have experienced AIDS-related loss (Goodkin et al., 1999; Sikkema et al., 2005; Sikkema, Hansen, Kochman, Tate & Difranceisco, 2004; Sikkema, Kalichman, Kelly, & Koob, 1995). Longitudinal findings from Sikkema and colleagues' (2004) randomized control trial represent solid scientific evidence for the effectiveness of group-based bereavement support upon health, well-being and quality of life outcomes for people living HIV-positive. Reports from the study found that general and HIV-specific quality of life, personal coping strategies, resiliency across the longitudinal course of grief; and, psychiatric and psychosocial distress all improved for participants assigned the group-based bereavement intervention. Participants assigned to individual psychotherapy remained the same or deteriorated across these domains (Hansen et al., 2006; Sikkema et al., 2004; 2005).

AIDS-related bereavement and HIV prevention