Bereavement is an emotional and physiological response to loss such as the death of a person or to the loss of independence, mobility, occupation, vitality, home, or culture. In most cases, bereavement is considered a healthy, expected response to a significant life change. Bereavement outcomes may be influenced by an array of factors, such as the survivor s personality traits, coping styles, relationship with the deceased, social support, and early experiences with attachment and loss. Mourning can produce deleterious effects such as compromised immunity, depressive and anxious symptomatology, panic, and increased mortality. These symptoms may be manifested by disturbances in sleep and appetite, depression, anxiety, and illness. Complicated grief may occur in the form of protracted mourning that lasts for longer than one year and is often confounded by major depression, panic disorder, or psychosis.
The AIDS epidemic has created a sizable population of bereaved individuals. With each AIDS-related death, an extensive network of family, friends, colleagues, neighbors, and health care providers is left behind to grapple with the loss. A culture of mourning has emerged in which multiple and chronic loss has become the environmental norm for individuals in high-risk groups. As of 1994, up to 60 percent of gay men reported annual losses, and a third of these bereaved individuals described the multiple loss of family, friends, and neighbors. Some bereaved survivors have witnessed the extinction of their entire social support network, thereby reaching a level of isolation uncommon to most other bereaved groups. By 1988 gay males had already on average lost six lovers, friends, and/or family members. The spread of the epidemic has tangled losses so that the grief of one loss intertwines with the grief of another.
Beyond the sheer volume of loss, AIDS-related bereavement differs from other forms of mourning in several distinct and important ways. First, the stigma associated with AIDS persists and, in turn, impacts the survivor. AIDS-related loss has been shrouded with shame, guilt, and fears surrounding transmission, sexuality, and society s inability to concede the sense of loss experienced by survivors.
During the initial years of the epidemic, fear of contagion led to an unprecedented refusal of services by many funeral homes to survivors seeking burial arrangements for friends and family members who had died of AIDS. Word quickly traveled throughout the HIV community regarding which funeral homes were "HIV friendly" and would accept infected bodies for burial or cremation. Some funeral homes developed policies restricting services for those who had died of AIDS to cremation only owing to fear of HIV exposure during the embalming process. Frustrations over the refusal of burial options for the deceased further confounded the bereavement for many survivors throughout these early years.
For some survivors, bereavement has entailed a complicated code of silence. This silent mourning blocks lovers, spouses, family, and friends from openly acknowledging the true circumstances of death and the special nature of the relationship shared with the deceased, and it leaves survivors feeling more alone and bereft. The grief process becomes further burdened when the survivor is excluded from burial and memorial rites by the deceased's biological family. Bereavement rituals have been shown to encourage the resolution of grief, and exclusion from these rituals can disrupt the bereavement process, leading to a delayed adaptation to the loss, protracted depression, feelings of invalidation, and anger.
Second, most who die are either young adults or children. Deaths at these early developmental stages are typically deemed unusual and premature. These losses violate the societal assumption of natural order: death, in most cases, is expected to occur later in life. Premature loss is always shocking and, therefore, traumatic.
A third unique feature of AIDS bereavement concerns the HIV serostatus of the bereaved. HIV-seropositive bereaved individuals have shown higher levels of distress associated with loss when compared with their HIV-seronegative counterparts. As many as 30 percent of seropositive individuals have reported unresolved grief, as compared with 12 percent of their seronegative counterparts. For the seropositive person, the complexity of such a loss is understandable: an AIDS-related death may serve as a symbol of the bereaved's impending destiny, mirroring the survivor's personal mortality and eventual fate. Surviving spouses must prepare for life alone without their partner and must face their own dying process without the support of the deceased. This finding is of particular concern because unresolved grief has been associated with a poorer quality of well-being, psychiatric morbidity, increased loneliness, and immune suppression. Given the health implications of unresolved grief and its potential damage to an already compromised immune system, aggressive treatment to ameliorate distress is recommended. Social support in the form of support groups and grief counseling has been shown to be particularly effective in promoting grief resolution.
A fourth distinctive feature of HIV loss is that entire families may be infected. Within seropositive couples, the death of an entire couple may be inevitable. When one spouse precedes the partner in death, the surviving spouse must prepare for life without the partner, bracing to face his or her own dying process without the support of the deceased lover. For couples who are serodiscordant (i.e., those who have different HIV serostatuses), the dynamics differ as one spouse prepares for death and the other prepares for life alone without the significant other. Families face an even greater challenge when one or more children are also HIV infected and survivors must learn to deal with losing members of two generations of a family.
An important part of the anticipatory loss process for HIV-impacted families with children are the arrangements for adoption, guardianship, or single parenting made prior to the death of the seropositive parent(s). In this process, the seropositive family members help prepare for the well-being of the surviving children and adults. Although difficult, such efforts to ensure the reasonable placement of surviving children often initiate a process of adaptation critical to the grief resolution process for both the bereaved children and any surviving parent. Bereaved children often express a need for reassurance and validation of emotional security during all phases of the grief process. Encouraging the child to ask questions and providing simple and concrete responses can help foster an open atmosphere that promotes the mourning process.
"Survivor guilt" can ensue when survivors blame themselves for the death of a loved one or friend. This is particularly relevant to HIV because transmission can occur sexually, from mother to child, or through shared drug paraphernalia. In AIDS-related survivor guilt, the survivor may feel responsible for transmission issues related to the death and ultimately may feel responsible for the death itself. Survivor guilt may manifest itself by feelings of self-loathing and remorse and an over-ascribing of blame for the death of a loved one or friend. It is not surprising that these acute grief reactions occur more often in spouses and lovers than in other survivors. In fact, more than 25 percent of lovers and spouses experience a major depressive episode following the death of their partner. Seronegative survivors with survivor guilt are left searching for the existential or spiritual meaning of their survival in the midst of significant losses.
The gay community, the U.S. group impacted first by the epidemic, has created powerful resources to support the healthy and adaptive processing of AIDS-related bereavement. In the early 1980s, support groups and grassroots AIDS organizations emerged as resources for individuals who are seropositive, afraid, or bereaved. These organizations flourished across the nation, providing an array of services such as education, referrals, counseling, meals, transportation, in-home support services, and friendship through "buddies." In the 1990s, these support organizations diversified services for the newly emerging risk groups of women, children, and people of color. The availability of support groups and peer counseling surfaced as a cornerstone of support for those infected and affected by HIV.
In response to the burden of loss, communal rituals also have emerged. These ceremonies have been designed to acknowledge and mediate the potent emotions connected with AIDS-related death and dying. For example, annual candlelight vigils and the traveling AIDS Memorial Quilt have been designed to celebrate the lives of the deceased as well as the strength of the survivors. The red ribbon for AIDS awareness has adorned many articles of clothing and has also materialized into a commemorative symbol of empowerment, love, and resiliency in the face of AIDS.
AIDS-related bereavement has become an ongoing event in many communities impacted by HIV. Although patterns of bereavement can be discerned in particular groups, individual grief responses remain as diversified as the lives of the deceased themselves. The healing and strength of survival can be derived from acknowledging the special qualities of the shared relationship with the deceased, participating in private as well as communal rituals, and recognizing the value and worth of being a survivor.
Counseling; Couples; Death and Dying; Families; Mental Health; Ministries; Religious Faith and Spirituality; Suicide and Euthanasia; Support Groups; Symbols
bereavement, grief, loss, mourning, support groups, survivor guilt, survivors, widowhood
Martin, J., and L. Dean, "Effects of AIDS-Related Bereavement and HIV-Related Illness on Psychological Distress Among Gay Men: A 7-Year Longitudinal Study, 1985-91," Journal of Consulting and Clinical Psychology 61 (1993), pp. 94-103.
Schwartzberg, S., "AIDS-Related Bereavement Among Gay Men: The Inadequacy of Current Theories of Grief," Psychotherapy 29 (1992), pp. 422-429.
Siegel, K., and E. Gorey, "Childhood Bereavement Due to Parental Death from Acquired Immunodeficiency Syndrome," Developmental and Behavioral Pediatrics, 15 (1994), pp. S66-S70.
Summers, J., S. Zisook, et al., "Psychiatric Morbidity with Acquired Immune Deficiency Syndrome-Related Grief Resolution," Journal of Nervous and Mental Disease 193 (1995), pp. 384-389.
The Encyclopedia of AIDS: A Social, Political, Cultural, and Scientific Record of the HIV Epidemic, Raymond A. Smith, Editor. Copyright © 1998, Raymond A. Smith. Carried by permission of Fitzroy Dearborn Publishers.
Encyclopedia of AIDS $25 US/832 pp/Illustrated
For more about this book, or to order, click here.