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Few attempts have been made to address how to assist clients who are grieving multiple AIDS-related deaths. However, a recent book by Nord (1997) has provided thoughtful guidelines for counseling individuals who have experienced multiple losses to AIDS. According to Nord (1997), grief responses vary widely, and how one copes with multiple loss will depend on a number of factors including one's level of social support, availability and use of resources, what one deems as supportive and unsupportive, and how one relates to others (Nord, 1997). In addition, it is important that individuals who have experienced multiple losses realize that the disaster is something that will not go away. If later losses are being submerged due to the grieving for an earlier important loss, gentle encouragement by the counselor to recognize and resolve additional losses might be necessary. It may even be useful to grieve the fact that there is so much to grieve.
Of the factors that affect coping with AIDS and AIDS-related loss, social support is an integral variable (Cherney & Verhey, 1996; Nord, 1997). Those who tend to isolate themselves from others will have a much more difficult time adjusting to the loss. Thus, individuals who are grieving multiple losses should be encouraged to seek support. There are many potential sources of support, including counseling and social support networks in the gay community. Clients may be unaware of these resources, and it is the counselor's role to be comfortable with the community resources and knowledgeable about how to access them. Counselors' levels of comfort raises another important issue. Counselors who work with gay clients experiencing AIDS-related losses must examine their own belief systems about gay men and HIV and ascertain whether they are working on the basis of misinformation; stereotypes about the sexuality of gay men, especially minority gay men (Nettles & Scott-Jones, 1989); or religious or moral beliefs (Holt, Houg, & Romano, 1999; House & Walker, 1993) that would be counterproductive to their work with clients (Croteau, Nero, & Prosser, 1993). Counselors must also prepare themselves to address themes of death and dying, topics that are often difficult for many counselors (Britton, Cimini, & Rak, 1999; Gutierrez & Perlstein, 1992).
Clients may also have to address their own internalized homoprejudice, homophobia, and beliefs about HIV and AIDS. HIV-related illnesses continue to bear a social stigma (Herek & Glunt, 1988; Holt et al., 1999) and clients, even those who have lost loved ones to the disease, may blame their friends for not being "careful enough" and then feel guilt over their anger. Clients who are HIV- may experience guilt over their own continued health (McKusick, 1988). It is important that counselors facilitate the client's acknowledgment of these emotions and assist the client in recognizing them as reasonable reactions to the situation so clients' emotional reactions do not undermine their own health-related behaviors. HIV+ gay men might also need to explore feelings of guilt or shame over earlier behaviors and the societally prevalent belief that they are responsible for the disease (Barrett, 1989). If clients are mourning former lovers, they may be suffering guilt over the possibility that they infected their lovers (Dworkin & Pincu, 1993) and will need to resolve this issue as well as concerns over their own health status. Gay relationships are often not recognized and validated in the same manner as heterosexual relationships. Therefore, the loss of a partner is often not marked by the same societal rituals designed to aid the resolution of grief (i.e., memorial services, time off from work, support from family and friends) experienced by a heterosexual individual whose spouse dies. The survivor will require support and validation of his loss (Schoen & Schindelman, 1989).
Families of origin can also be a supportive system (Winiarski, 1991) but may not always be a viable source of support, particularly for those whose families have rejected them (Nord, 1996). Again, counselors may be of assistance in providing family counseling to help rejoin families or to facilitate grieving the loss of family support if that has not previously been resolved (Holt et al., 1999; Nord, 1996; Strommen, 1990).
Although seeking individual counseling may be beneficial in providing support and validation of the survivor's feelings, Nord (1996,1997) suggested that because AIDS and AIDS-related loss is a community problem, adaptation to multiple loss can only occur if there is a community effort. Thus, counselors might take an advocacy role in facilitating the development of social support networks that can help the survivors realize that they are not alone. In addition, promoting involvement in community activities such as making a Names Project AIDS Memorial Quilt la quilt composed of panels, each commemorating someone who died from AIDS) and promoting participation in community gatherings that commemorate collective losses is important (Nord, 1996). Ironically, those who do become involved with social support networks are also putting themselves at risk for exposure to additional losses (Nord, 1997). However, the benefits of becoming connected to others in the community help to buffer the impact of loss and lead to better adaptation than would isolation in order to avoid loss.
Another way survivors can help themselves adapt to loss is to help others (Nord, 1997). There are many AIDS-related volunteer opportunities that will assist survivors in further developing their social support network. These activities may also result in a decrease in feelings of depression and learned helplessness and an increase in sense of empowerment and self-esteem. Furthermore, volunteer work might help ameliorate survivor guilt. Certainly, these activities will not be appropriate for all clients or at all stages of grief. When clients are experiencing intense grief emotions, they will be unlikely to be beneficial as supportive volunteers. However, in later stages of the grieving process, the sense of giving back to the community and taking a proactive stance against the disease that has caused so much pain can be a powerful healing experience. Thus, counselors can inform appropriate clients about community activities.
The process of grief resolution often includes helping individuals deal with the emotions they have about the losses (Holt et al., 1999; Nord, 1997). It is common for individuals to experience rage about the loss of so many close friends, and this rage may manifest itself in inappropriate behaviors. Although anger may be a positive response, it is important to help individuals learn to express anger in appropriate ways. It is also important to assist survivors in recognizing and dealing with emotions other than anger. Anger is often an easier emotion to recognize and express and may be used to avoid other emotions such as fear, sadness, grief, helplessness, and loss of control (Britton et al. 1999; Nord, 1997). Survivors need to recognize and express these emotions in a safe and validating environment. Counselors can be helpful in assisting survivors to deal with the emotional consequences of multiple losses through imagery, journaling, art, movement therapy, and various other expressive techniques.
Because the loss of loved ones can result in feelings of depression, worthlessness, and withdrawal (Jansen, 1985), counselors must be alert for symptoms of self-destructive behaviors and attitudes and assist clients in changing these behaviors and attitudes (Nord, 1997). Among the behaviors exhibited by individuals who experience multiple loss are alcohol/drug use, suicidal behavior, aggressive behavior, and risky sexual practices. Self-destructive attitudes might include bitterness, rage, self-hatred, or hatred directed at others. Alcohol and other drug use and engaging in risky sexual behaviors increases the client's own chances of being infected or reinfected. These behaviors and their implications must be discussed with clients because they, too, can be a way of expressing hopelessness and suicidal intent. Counselors can assist survivors in understanding the reasons for and negative consequences of their self-destructive behaviors and attitudes and assist clients in overcoming them through cognitive behavioral approaches (Nord, 1997). Of course, counselors should assess for suicidal ideation as appropriate and take necessary steps to ensure the safety of their clients.
Finally, clients must be assisted in accepting the experience of multiple loss as irrevocable. Although it is common to attempt to avoid feelings of being overwhelmed by denying the experience of multiple loss, survivors often benefit from a direct confrontation of the reality of the loss (Nord, 1997) that precedes the grieving process. Bower, Kemeny, Taylor, and Fahey (1998) studied the effects of finding meaning in the experience of bereavement through deliberate processing of the loss. They reported that recently bereaved HIV+ men who discovered personal meaning in their loss showed a plateau in the decline of CD4T cell levels (an immunological marker of HIV progression) and had a lower rate of AIDS-related mortality over a 4- to 9-year follow-up period. When working with survivors of multiple loss, support should be provided, and clients should be encouraged to express emotions associated with the loss and be empowered to find a way to regain a sense of control and mastery in order to prevent feelings of helplessness or "shattered meaning" (i.e., an inability to find meaning in the losses or impact of AIDS on the gay community, Schwartzberg, 1993). Many of the suggested counseling techniques discussed here are equally applicable to group settings. Supportive group therapy has been found to be an effective technique for addressing the emotional impact of AIDS-related concerns, both for those who are HIV seropositive and for bereaved survivors who may or may not be HIV+ (McKusick, 1988).
Unfortunately, clients are likely to be faced with additional losses (Nord, 1997). Grief work will be interrupted by new losses, inhibiting the process of working through accumulated grief. However, anticipating these losses can be reframed as an opportunity to start the grieving process early. Proper good-byes can be said and unfinished business can be resolved. Thus, although the grief process never actually "ends," survivors can find a sense of peace in knowing they took a proactive stance in dealing with loss rather than a passive, helpless stance.
Shame and HIV: Strategies for Addressing the Negative Impact Shame
- Hutchinson, P. and Dhairyawan, R. (2017). Shame and HIV: Strategies for Addressing the Negative Impact Shame has on Public Healh and Diagnosis and Treatment of HIV. Wiley Bioethics, 32. p. 68-76. doi: 10.1111/bioe.12378
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“I don’t know a single Black person who is sleeping properly these days” tweeted Dr Crystal Fleming in New York City the other night. As a black British woman this is my new reality. Each morning I wake up with a twist of fear about how I’ll keep my family safe and what new horrors I’ll hear about being unleashed on my community.
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