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HIV: Therapeutic Strategies for Guilt, Uncertainty, Taking Control
Researchers incorporating specific providers of social support (e.g. family, friends) have suggested family members are not viewed as particularly helpful to HIV-positive persons. One explanation offered for friends being viewed as more supportive than family has been associated with mode of contraction. That is, individuals who contract HIV via homosexual sex or injection drug use are less likely to receive support from family than friends. For example, the support networks of injection drug users (IDUs) have found them to primarily consist of friends and fellow IDUs versus family members (Johnston et al., 1995; Stowe et al., 1993). These results are not unexpected as injection drug users may be similar to gay men in that they may be estranged from or have poor relationships with family members. Given the changing nature of the demographics of HIV infection (Centers for Disease Control (CDC), 1998), however, it is unclear whether this pattern of seeking support primarily from friends will remain.
Barrier theory: Explanations for why family members are perceived as less helpful than friends for HIV-positive gay men have also focused on a 'barrier theory' premise (Smith & Rapkin, 1996). This theory suggests there are obstacles individuals must traverse when seeking to access social support from family. Barrier theorists argue that such obstructions might include lack of access to family members, lack of acceptance, lack of intimacy, negative interactions, feeling smothered, and wanting to protect family members (Smith & Rapkin, 1996). Johnston and colleagues (1995) have proposed that HIV-positive gay men are not accustomed to asking for assistance, do not want to be a burden on family, feel stigmatized and isolated, and/or have elderly parents with many personal difficulties. Furthermore, it has been theorized that there is an inverse relationship between the number of barriers a person confronts and the amount of social support received. That is, individuals with fewer barriers theoretically should receive more social support than individuals with multiple barriers. If indeed this is the case, there are a number of obstacles for HIV-positive persons to overcome in order to receive social support from family members.
Lack of access to family members, as a barrier, has not been examined by researchers, yet many conclude having HIV strains the social network and, as such, limits the availability of family members. Frequently overlooked, however, is the possibility that family members could represent a small proportion of the total number of people in the social network. In fact, for some, family size may be quite small, members may live far away, be too few because of death or be unavailable because of illness or age. If this is true, then it is problematic when working with some social support data (e.g. only frequencies) to say that families are not helpful or available. In these instances, friends may be more plentiful resulting in the provision of more assistance.
Examples of this difficulty can be found in many studies. For instance, Hays and colleagues (1990) compared help-seeking behaviours of HIV-positive and HIV-negative gay men. They asked these men to indicate from whom they sought assistance in dealing with AIDS-related concerns. Respondents chose from a list including primary partner, friends, parents, siblings, counsellor/psychologist, medical doctor and clergy/spiritual leader. They found that both HIV-positive and negative men sought assistance from friends more often than any other source and concluded that friends were therefore most helpful. The fallacy in such a conclusion rests in the proportion of possible respondents in each category. That is, outside of the friends category each other category represents a limited number of people. For many people, friendship networks are plentiful, especially if they are defined to include support group members, co-workers, buddies and social acquaintances.
It is both curious and problematic that studies, to date, do not take this proportion/ availability issue into consideration when deriving conclusions about family support. However, in addition to availability, avoiding disclosure is also linked to the receipt of social support (Turner et al., 1993). Disclosure of one's HIV status to family has been found to be a significant predictor of receiving social support, and it has been suggested that those persons who were able to talk openly with family about their HIV infection received the most support (Turner et al., 1993). Given these findings, intuitively, it seems the opposite would also be the case. That is, the avoidance of disclosure would serve as an obstacle to social support receipt. Understanding hindrances to social support in the form of network density, disclosure or relationship satisfaction is especially important given the beneficial contribution of social support to the overall health and wellbeing of HIV-positive persons.
Social support and health: Generally, it is argued that people will fare better when faced with stressful life conditions if they have social support than if they do not (Cohen & Wills, 1985; McCubbin et al., 1981). More specifically, the link between social support and greater psychological wellbeing and lower incidence of physical illness has been well documented since the 1970s (Cobb, 1982; Cohen & Wills, 1985; Schaefer et al., 1981). Furthermore, the relationship between social support, depression and coping has been shown to be especially important for HIV-positive individuals. For example, Zich and Temoshok (1987), in their sample of 103 gay and bisexual men with AIDS or ARC, found evidence that HIV-positive persons with low levels of social support experienced more physical symptoms, more hopelessness and depression than those with high levels of social support. Hays et al. (1992) found social support, especially informational support, was significantly negatively correlated with depression for the gay men in their sample. Finally, a study by Leserman and colleagues (1992) found satisfaction with social support was also predictive of reduced helplessness, personal growth, seeking out religion for comfort, seeking out social support and having a 'fighting spirit' for their sample of 52 gay, asymptomatic HIV-positive men.
In sum, psychological wellbeing, as well as physical health can be linked to the receipt of social support. What we don't know, however, is the relative impact of obstructions to social support on health outcomes. Of particular interest for this study was the question: do barriers to perceived social support moderate the relationship between perceived social support and health outcomes?
Discussion: The results of this study indicate support for the principal assumption of barrier theory as proposed by Smith and Rapkin (1996). That is, the presence of barriers are significantly related to perceived social support from family. Interestingly enough, while barrier theory was offered as an explanation for family support, in this study, the theory fails to differentiate between friend and family support as originally proposed. Given this, barrier theory appears to be much more generic and cannot solely be used to explain reduced family support; thus, warranting other theories and/or explanations. As the results of this study indicate, one explanation for differential family support could rest in the level of satisfaction with family members. Level of satisfaction with family was a significant predictor of perceived social support for family but not for friends. Therefore, a relationship based theory for perceived social support may be a better explanation than barriers.
These results also call into question the previous focus on differences between family and friend support. Perhaps even more critical may be theories or explanations which do not illuminate differences between friends and family, but rather, highlight their similarities. Clearly, this would offer a unique perspective to social support within this context.
As mentioned earlier, while satisfaction with family was a very strong barrier to social support it was not significant for friends. There are a few explanations for this result. First, it may simply be a ceiling effect. That is, over half of the participants rated their satisfaction with friends as 'satisfied' or 'very satisfied'. The variance with this particular predictor is low, hence a statistically significant relationship with the criterion variable would not be found. Next, it seems likely that to be considered a friend the relationship would inherently be satisfactory. Family relationships, on the other hand, are non-volitional and unlike friend relationships, are less likely to be automatically satisfactory. More variance would logically be found with satisfaction between family members and this variance is conducive to finding a predictor relationship. Finally, it is also possible that if the individual is satisfied with a family member he is more likely to feel supported.
Although the barriers tested here supply valuable information, it is plausible there are other barriers which are equally or more important which were not tested. In fact, Smith and Rapkin (1996) suggested lack of acceptance by family, lack of intimacy, negative interactions, feeling smothered and wanting to protect family members were important barriers. In addition, others have proposed that not requesting assistance and not wanting to be a burden are also prohibitive factors (Johnson et al., 1995) not investigated here. While these family barriers should be investigated further by researchers, it might be more heuristic to categorize these barriers in some meaningful way. For example, these could be examined in terms of emotional and instrumental or self-focused and relationship-focused barriers. Classifications such as these which have been used to understand other relevant phenomenon, such as disclosure (Serovich et al., 1998) and reasons for disclosure (Mason et al., 1995), may offer researchers some parallelism with other areas of investigation.
Barriers previously offered by theorists and researchers have typically been family oriented. The barriers described above might also prove valuable in explaining friend support. For instance, are there barriers that discriminate between friend and family support? Seemingly, there may be barriers that are particular to friends, such as length of the relationship and level of intimacy, which may be important to explore. What remains essential is that barriers be investigated in terms of friends and family support. This is important so similarities and differences can emerge within a context that is helpful for the HIV-positive individual, and assist with theory development.
Finally, an interesting finding from this study was that barriers did not moderate the relationship between social support and health outcomes for family and friends. That is, health outcomes such as depression, symptom severity and disease progression were not impacted by the level of social support when moderated by the barriers of disclosure, relationship satisfaction and size of the network. It seemed logical to assume that an HIV-positive man's health outcomes would be better if he perceived his social support to be high and had few barriers to overcome, yet this was not the case, statistically. One reason for this may be few direct relationships between social support and health outcomes were found here. For instance, only a direct relationship between social support and depression for friends and depression and t-cell count for family was identified. It may be that there are a host of other health outcomes (e.g. level of functioning, empowerment) which are more germane to a moderating relationship. Another explanation may be the barriers examined in this study may not have been the most relevant to identifying a moderating relationship between social support and health outcomes. For instance, other barriers such as those identified previously or individual characteristics like personality, age or gender may be more significant.
Implications: Given these results, it would be important for helping professionals, such as nurses, health providers, therapists, educators and prevention workers, to assist HIV-positive men identify barriers that may be existing for them and devise strategies to overcome or traverse the more difficult obstructions. Helping professionals are in a unique position to assist with this activity, as they might help HIV-positive men brainstorm about who they could turn to for assistance, who they have interacted with that would be understanding and who may be able to handle this information in a non-detrimental way. For instance, helping professionals may encourage HIV-positive individuals to access supportive networks within their social community, faith community, employment community or community at large. Further, these professionals may also be able to provide resource information or aid an HIV-positive individual in enrolling in medical trials.
Because a significant barrier to social support was having few friends or family in the social network, it appears the quantity of persons within the network is as important as the quality of these relationships for HIV-positive men. Future researchers may wish to measure individual characteristics of the HIV-positive person, such as level of self-worth, to determine if this is indeed the case. Moreover, given the differing ways in which men and women disclose HIV information (Kimberly et al., 1995), future researchers should investigate whether this barrier serves a similar role for HIV-positive women.
Conclusions: As elucidated by this study, barriers for family and friend support are similar, but further investigation is necessary to illuminate nuances of each of these roles. In addition, the results of this study suggest quantity of friends and family members in the social network are as important as the quality of those relationships. Further work is necessary to determine if this is unique to the HIV-positive context or if this is a broader phenomenon. Regardless, the fact that for some HIV-positive men barriers to social support are relatively minimal is encouraging, as it may be indicative of a cultural shift in which HIV is becoming less stigmatized and more recognized as a chronic disease whose vectors are worthy of compassion, treatment and support.
Reflection Exercise #7
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