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HIV: Effective Tools & Techniques for the Caregiver
6 CEUs HIV: Effective Tools & Techniques for the Caregiver

Section 16
Helping Caregivers Understand AIDS-Related Loneliness

Question 16 | Test | Table of Contents | HIV/AIDS CEU Courses
Psychologist CEs, Counselor CEUs, Social Worker CEUs, MFT CEUs

Research investigating the psychosocial experience of persons with the Human Immunodeficiency Virus (HIV) and AIDS indicates that these patients suffer not only from the physical disease process but also from the emotional agony that is created because there is no known cure for AIDS, as well as because of the public frenzy that results in blaming the victim (Frierson & Lipmann, 1987). There are public beliefs that infected persons will infect others, either intentionally, or through an inability to remain abstinent (Hellman, 1994).

The social stigma attached to HIV and AIDS leads to the social rejection of these patients. Sontag (1988) stated that in the North American culture, cancer was once the disease of fear and shame. Today, cancer has been replaced by HIV and AIDS, and many HIV/AIDS patients' experiences parallel those of cancer patients. As Cherry and Smith (1993) observed, "The body of social knowledge that explains cancer as a dreaded disease, a curse, or a punishment now has been transferred to HIV [and AIDS] patients" (p. 189).

Seventy-five percent of AIDS patients reported that they live alone (Christ, Wiener, & Moynihan, 1986). In many cases, patients may not have an ongoing intimate relationship, or they have reported that their partner died of the disease (Nokes & Kendrew, 1990). The individual frequently loses both a job and the social contacts associated with employment. In many cases, alienation from the self and society intensifies the pain of loneliness (Cherry & Smith, 1993).

People in the North American culture have been socialized into fearing the process of death and dying so that as the patient comes closer to death, one endures the ultimate aloneness; neither mortal nor faith in God can save the patient from death (Bascom, 1984; Cherry & Smith, 1993). This experience is common to both cancer and AIDS patients, let alone to all individuals with terminal diseases in their final stages of illness (Bascom, 1984). Kaye (1991,quoted by Vachon) further stated that "ultimately one is alone with the diagnosis, with the need to receive treatment, and with the reality of one's life being threatened. Nothing another contributes, no matter how valuable, can change this" (Vachon, 1998, p. 37).

As Friedman, Florian, and Zernitsky-Shurka (1989) observed, HIV/AIDS patients are particularly prone to loneliness. Koopman, Hermanson, Diamond, Angell, and Spiegel (1998) noted that the increase of social support during periods of significant life stresses may ward off, or at least lessen, mood disturbances and loneliness. Unfortunately, they maintained, cancer and HIV/AIDS patients "must often curtail their social activities, resulting in limited opportunities to maintain supportive interactions and receive support . . . such a disruption in support occurs at a time when the potential buffering effects of social support are most needed and most likely to have an impact" (p. 102).

The present results demonstrated that those with HIV/AIDS cope with loneliness very differently from individuals in the other two groups. Significant differences were found in the Self-Development and Understanding, Social Support Network, Distancing and Denial, and the Increased Activity subscale scores of the three samples.

An explanation of the unexpected finding that those with HIV/AIDS cope with loneliness in a unique manner, whereas cancer patients do not differ, by and large, from the general population in their coping strategies, may be provided by Christ (1988), who maintained that "the complexity of the problems confronting people with AIDS and the terror it invokes set this disease apart from virtually every other contemporary health problem" (p. 84).

In an examination of the subscales in which the three samples' scores were not significantly different, Rokach and Brock (1998) found that the most salient coping strategy--and the factor that accounted for the highest variance in their study--was Acceptance and Reflection. Moustakas (1972) and Mayer Gaev (1976) described loneliness as including a feeling of inner void, a detachment from one's self, and an alienation from one's core identity. As such, Reflection and Acceptance highlights the inability to deal effectively with loneliness without having an encounter with one's self that involves the direct straightforward facing of one's loneliness.

Such an encounter requires a willingness to experience fear, anger, agony, and disillusionment. In light of the present findings, it appears that, regardless of one's health, turning loneliness into solitude is experienced as highly beneficial across samples, because it precipitates "a joyous experience of self discovery, a real meeting of self-to-self . . . it includes a sense of harmony and well being . . . [and a way] of advancing life and coming alive in a relatively dead or stagnant world" (Moustakas, 1972, p. 21).

The HIV/AIDS sample scored significantly higher than the cancer and general population samples on the remaining four subscales. Factor 2, Self-Development and Understanding, addressed the increased self-intimacy, renewal, and growth that are often the results of active participation in organized focus groups (i.e., AA, AIDS, or cancer support groups, or dating clubs) or of receiving professional help and support, or receiving guidance from the clergy. Although it has been repeatedly documented that cancer patients need, depend on, and actually receive--in liberal doses--support from the clergy or from organized support groups, it is the HIV/AIDS patients who find it most helpful in warding off loneliness.

Referring to the importance of support groups in battling disease and loneliness, Ornish (1998) pointed out that "when you can share your darkest secrets and mistakes with another person who listens without judgment it is like shining a light in the darkness . . . a support group helps heal isolation, alienation and loneliness" (pp. 119 & 127; see also Vachon, 1998; Koopman et al., 1998; U.S. Department of Health and Human Services, the National Cancer Institute, Bethesda, Maryland, and the Canadian Cancer Society, 1996).

Cherry and Smith (1993) observed that "people with AIDS face not only the disease process itself, but also the emotional turmoil generated both by HIV's incurability and by a public hysteria that has led to blaming the victims" (p. 181). The HIV/AIDS patients who participated in the present study were mostly recruited during weekly support group meetings. It is quite clear that, particularly in the light of the public's terrified reaction to AIDS, these patients find support groups very helpful in dealing with their life-threatening disease, the loneliness they experience, and the self-understanding and growth they gain in their battle to live.

"Many [AIDS] patients described their social world as 'us vs. them' . . . [suffering from the] stigmatization and separation from society demonstrated by an overzealous rejection of AIDS" (Cherry & Smith, 1993, p. 188).  Additionally, Sontag (1988) pointed to the "war" being waged by medicine on the disease that invaded the body, with the goal of destroying the enemy. Consequently, physicians end up viewing their patients not as persons but as a disease--an objectification that dehumanizes HIV patients and makes them feel like numbers rather than the sick and suffering people they are.

As anyone who has been afflicted by a life-threatening disease such as cancer or AIDS can attest, once the shock of the diagnosis fades, denial sets in, hopefully temporarily. Having been afflicted with HIV or AIDS, and in light of the public's negative reaction to that disease, it is quite natural for the patient--who is afraid of losing not only life but also friends, employment, and social support networks--to keep a distance from the situation by denial (see also Vachon, 1998).

Rokach and Brock (1998) found that some individuals are unable to face loneliness and experience an overwhelming need to deny it and avoid full awareness of its pain. The authors suggested that although this approach may successfully block the pain of loneliness in the short run, it would probably not suffice to deal with loneliness on an ongoing basis. It is quite conceivable that, in tandem with denying the diagnosis, HIV/AIDS patients will temporarily deny its accompanying loneliness. And although cancer patients as well as the general population may see some benefits in distancing and denial, it is not as helpful to them as it has been reported to be for HIV/AIDS patients.

Based on the present findings, it appears that HIV/AIDS patients, rather than being immersed in pain, helplessness, and sadness, seek to "re-enter society" and behave as other healthy members do by continuing to pursue their daily activities, thus creating new opportunities for social contact and belonging. They do so to a greater extent than patients of the other two samples. For, as Billings (quoted in Ornish, 1998) so eloquently pointed out, "we have a world full of people who have a genetic predisposition to affiliation, the need to belong" (p. 225), and that predisposition is felt most acutely when social alienation, rejection, and even blaming are expressed, such as is the case with HIV/AIDS patients.

The present findings suggest that with the exception of the Reflection and Acceptance and the Religion and Faith subscales, HIV/AIDS patients scored very differently from patients with cancer and from those participants from the general population. Given that cancer has been so widely dealt with and accepted by the public, and because the public seems to have transferred its horror of cancer to AIDS, it stands to reason that cancer patients may see themselves as an integral part of society (much more than HIV/AIDS patients do) and therefore cope with loneliness in a way similar to that of the general population.
- Rokach, Ami; Terminal Illness and Coping With Loneliness; Journal of Psychology; May 2000; Vol. 134 Issue 3

Personal Reflection Exercise #9
The preceding section contained information about treating the traumatizing process in HIV positive clients.  Write three case study examples regarding how you might use the content of this section in your practice.

In Rokach’s study, on what two coping with loneliness subscales do AIDS patients score similarly to those with other terminal illnesses? Record the letter of the correct answer the Test

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