The Role of Social Support in Coping with HIV/AIDS

This essay will discuss the role of social support in coping with HIV/AIDS. After identifying the particular health-related and social stressors associated with HIV/AIDS, an analysis will be made on how individuals adapt to and cope with those stressors and the implications for their social network. An understanding will be drawn on the relationship between how social support is used as a coping strategy and how social networks respond to the sufferer. The possible advantages and disadvantages of social support and the different methods of social support will be discussed.

HIV/AIDS is a disease carried by millions of people in South Africa, affecting their livelihoods and those of people connected to them. Other than an increased susceptibility to opportunistic infections, the disease affects the individual’s self-esteem, relationships, capacity to work and psychological health. These social consequences of being infected with HIV/AIDS are largely due to imbedded prejudices in society, which results in the sufferer being stigmatized. The nature of the chronic illness requires increased social support due to added stressors, so the increased isolation that results from a diagnosis is unfavourable.

The health-related stressors presented by HIV/AIDS are similar to any chronic illness, such as pain and fear of death. However, HIV/AIDS presents particular uncertainty due to its recent discovery, the unpredictable nature of the disease, its capacity to affect multiple organs, the high mortality rate and the unknown side-effects of treatment drugs (Weitz, 1989 as cited in Green, 1993). These unique stressors add to the necessity for support.

The social stressors presented by HIV/AIDS are mostly unique to this disease. The disease impacts directly and negatively on the support that the person with HIV/AIDS receives due to the stigma that the disease carries in society (Friedland, Renwick & McColl, 1996). There is evidence that existing support structures can erode when one is diagnosed with a chronic illness (Peters-Golden, 1982; Bloom & Spiegel, 1984 as cited in Green, 1993). Livelihood stressors may arise with the loss of employment, refusal of medical treatment, denial of insurance and even eviction from housing (Green, 1993). The HIV-positive person is less likely to have healthy supporters in their social network and because of the erratic progression of the disease, those who offer support are less able to for a long period of time at the high level of care which is required (Folkman et al., 1994). Furthermore, people with HIV/AIDS are often isolated from the natural support mechanism of their families (Green, 1983). Relationships change to accommodate new needs. Sexual relationships change – many people with HIV have sexual problems (Donlou et al., 1985; Catalan, 1990; Catalan et al., 1990 as cited in Green, 1993). Looking at this evidence, one can identify a conflict arising between an increased need for social support due to the stressors of the disease, and a decreased availability of social support. Social support is dependent on the extent which the infected person appears to cope - they should try to cope with their disease in a balanced way in order to maximize social support (Shreurs & Ridder, 1997).

There are various psychological models for explaining how people cope: involvement coping versus detachment coping, or emotion-oriented coping, problem-oriented coping and perception-oriented coping (Friedland et al., 1996). Involvement coping occurs when the sufferer actively tries to find solutions for their problems, and detachment coping is exemplified when the person refuses to come up with solutions and tries to remove themselves from their problems. Social activity can be used in both these cases – both with finding solutions to problems by talking about them with others, or by using social activity as a way of distancing oneself from challenges (Mizuno, Purcell, Dawson-Rose, Parsons, et al., 2003). Naturally, it is better for the infected person to seek out social support in order to help with adapting, and not to distance oneself from problems. Emotion-oriented coping occurs when the person focuses on their emotional response to stressors and attempts to find solutions to negative emotions directly (for example, through meditation). Emotion-oriented coping has generally been found to be an incomplete solution to coping with a chronic disease (Rabkin, Remien, Katoff, & Williams, 1993). People who do not accept their disease or consider it to be controllable engage in emotion-oriented coping strategies (Schussler, 1992). Perception-oriented coping involves changing the way one thinks about challenges by altering goals and values. Problem-oriented coping occurs when the person focuses on the cause of the stressor, finds out information about it and tries to eliminate the stressor by addressing the source of the stress. This could include learning new skills. A study done by Friedland et al. (1996) found that problem-oriented coping, along with perception-oriented coping, improves the quality of life of people with HIV/AIDS.

Cohen & Wills (1985) identified two main theories in this field as to how social support can help a person to cope – the buffering hypothesis and the main effects hypothesis. The buffering hypothesis states that social support is beneficial only for those who are experiencing stressful situations and serves to protect those people from adverse situations. The main effect hypothesis states that social interaction has a positive health effect for everybody, regardless of their stressors, due to increased feelings of predictability, stability, self-worth and due to the fact that extreme isolation has negative health effects.

The need for social support arises in the need for emotional, informational or instrumental (for example, monetary) support, and has been found to be one of the major coping resources for people with chronic illness or handling major life events (Thoits, 1995). Social support can even increase longevity (Reillo, 1990). Perceived support correlates negatively with reported physical symptoms (Zich & Temoshok, 1987). A person with little social support will cope with hardships less easily, as well as having a more vulnerable immune system (Kaplan, 1991). Friedland, et al. (1996) found in his study that emotional support is the most sought-after type of support for persons with HIV/AIDS, followed by practical support (of whom the most useful in this regard were lovers/spouses). It is interesting to note that support can be debilitative (Coyne & DeLongis, 1986; Coyne, Ellard & Smith, 1990; Coyne, Wortman & Lehman, 1988; Helgeson, 1993b; Thompson & Sobolow-Shubin, 1993 as cited in Schreurs, et al., 1997). This might be because the supporter makes the person with HIV feel rejected or infantilized (Friedland, et al., 1996). The perception that the supporter has of the person with the chronic illness can influence how the person with the illness perceives themselves and how they perceive their ability to control their disease (Mizuno, et al., 2003).

The different methods of social support includes formal, semi-formal and informal structures. Formal structures includes therapy/counselling and medical care. Semi-formal structures include the buddy system, home care, self-help groups and drop-in centres. Informal structures include family and friends. Semi-formal structures bridge the gap between what formal and informal structures provide and take the burden off them (for example, a buddy system takes the burden off emotional support provision by close friends).

To conclude, social support is instrumental to the livelihoods of people infected with HIV/AIDS. The support is difficult to come by because of prejudices against those who are infected, but semi-formal and formal structures have been put into place to address those gaps. Even so, the attitude of the supporter appears to have a major influence on the outcome for the infected person, so much so that the support can be perceived as unhelpful. How the HIV-positive person decides to cope with their disease determines their quality of life, and social support is usually a good coping strategy.

[1262 words]

March 2014

References

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