The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 16: Grief and BereavementThe primary aim of grief support at this task is to help people accept the reality of the loss intheir own time and at their own pace. It may take days or weeks for the reality to be accepted,even longer for it to be fully absorbed.TASK II:EXPERIENCE THE PAIN OF GRIEFThe second task of mourning is for the bereaved to allow the pain of grief some form of healthyexpression. The pain of grief includes physical, emotional, behavioral, cognitive, spiritual, andsocial responses to the loss (see Table 16-2). This task is crucial because if the bereaved cannot,or does not, acknowledge the pain of grief in some way, these responses could manifest themselvesin unhealthy ways. 8Coping with the pain of grief will be unique to every individual. These responses are commonthemes that occur during bereavement; not every person will experience every response.People do experience actual physical responses to a loss. Although Stroebe reports that thephysical health of the bereaved is at risk after a loss, many of the symptoms reported to physiciansduring bereavement are normal, expected responses to grief, not pathological. 24 This canlead to inappropriate use of health care services. 25As noted earlier, in AIDS-related deaths, often the survivors may be HIV positive and experienceboth normal physical responses to loss, as well as symptoms of AIDS 19 and appropriate medicalevaluation is warranted.Emotionally, people tend to experience a wide range of feelings. The initial shock and numbnessusually subside after a few weeks or months and thoughts and feelings that were present allalong begin to surface. Many bereaved report significant emotional responses 6 months afterthe loss as the reality is fully absorbed:“I thought everything was fine but now I feel like thingsare worse.” While some people need to express their feelings and talk about the loss repeatedly,others do not experience grief emotionally as their primary response and therefore do not needto process their feelings. Some may even experience dissonance if painful feelings are experiencedbut are unable to be expressed: “I may appear normal on the outside but on the inside,I’m screaming.” 11Sleep disturbances and appetite changes are the most common behavioral responses. Behavioralresponses may vary due to cultural and gender factors, 8 but most cultures include crying asan acceptable response to death. 16 The bereaved should be wary of the risk of increased use ofalcohol, tobacco, and tranquilizers. 25Recent grief theories are emphasizing the cognitive responses to loss. 5, 23 This may be the primaryway some people experience grief (the “instrumental griever” 17 ). Initially many bereavedreport a fear of “going crazy;” education and normalization of the grief process may help assuagethis fear.Spiritual responses to loss are also highly individual. Even those who have a strong spiritual orreligious belief system may not be comforted by their beliefs. One of the crucial aspects of the23, 26spiritual response to loss is the ability to make meaning from the experience.An aspect of grief that is often ignored is the social response to loss. In AIDS-related deaths,people may be coping with social isolation due to stigmatization. 1 Neimeyer highlights the importanceof the social unit in his work on using constructivism to facilitate the grief process. 27336U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau