Impact of HIV/AIDS on Social Relationships in Rural China

INTRODUCTION

In the mid-1990s, the epidemic of HIV/AIDS spread to central China, primarily through unsafe practices of blood collection. In the following years, HIV transmission through blood and plasma donations and transfusion became effectively contained by new regulations for blood and plasma collection stations. By 2007, the main mode of transmission had shifted to heterosexual transmission (37.9%) [1]. Approximately 740,000 Chinese are now HIV positive indicating that one in every 50 People Living With HIV/AIDS (PLWHA) in the world are Chinese [2, 3].

Research in Western countries has shown that HIV/AIDS is associated with high rates of co-morbid health problems [4], disability [5, 6], and work discrimination [7]. In the United States, the estimated cost of 40,000 newly diagnosed individuals with HIV was $36.4 billion, including $6.7 billion in direct medical costs and $29.7 billion in productivity losses [8]. In China, the economic impact of HIV/AIDS is estimated to be between RMB 22.5 billion ($2.8 billion U.S.) and RMB 40 billion ($5 billion US) [9].

Rural migrants, who relocate to cities for work, are an emerging high-risk group. The link between population migration and spread of HIV/AIDS has been well established [10]. With an estimated 130 million rural migrant workers [11], China is experiencing the largest internal migration in the history of the world. Migrants often leave their spouses and children behind in their natal village and therefore return regularly for visits. Thus, the potential for the spread of HIV from urban to rural locations is substantial [12-14]. The Chinese government is now focusing much of its HIV/AIDS prevention interventions towards rural migrants.

Only recently has research on HIV/AIDS in China moved beyond a focus on prevalence and modes of transmission. Social scientists have documented that PLWHA in China suffer serious discrimination and stigmatization from the general public [15], health professionals [16, 17] and government officials [18]. The stigma is partly related to the fact that marginalized groups are at particularly high risk for HIV/AIDS (e.g. injection drug users, men who have sex with men and sex trade workers). Few researchers in China have examined the impact of HIV/AIDS on close personal relationships.

For a greater understanding of how HIV/AIDS affects social relationships and interactions, we must turn to the international literature. In addition to living with a potentially life-threatening and chronic disease, individuals who have an HIV infection face many challenges including the impact of the disease on their personal relationships with intimate partners, friends, family, co-workers and health care professionals [19]. Living with HIV/AIDS results in serious strains with sexual partners [7], often leading to rejection and termination of relationships [20]. AIDS stigma affects the whole family of PLWHA [21]. The social interaction of PLWHA with family members may become particularly difficult and communication problems within the family often arise [20]. HIV/AIDS also increases social isolation, rejection, and avoidance by friends [20, 21], segregation by co-workers [20, 22] and deterioration of productive relations with health professionals [22, 23].

The impact of HIV/AIDS on social relationships [23] and social support can have serious repercussions for the health of the PLWHA. The importance of social support in coping with HIV/AIDS has been widely documented. In general, strong social support has been associated with slower progression of AIDS [24], higher immune system functioning [24-26], and better medical treatment adherence [27-29]. PLWHA who have strong social support networks are more likely to have active coping strategies [30, 31], and better psychological well-being and mental health than those with less robust social support networks [32-36]. The negative impact of HIV/AIDS stigma appears to be buffered among those with strong social support networks [37]. Social support also plays a major role in improving the quality of life of HIV-positive individuals [34, 38-41]. This study reports on 866 PLWHA in Rural China’s perception of the impact of HIV/AIDS on two categories of social relationships 1) relatives and/or friends and 2) neighbors.

METHODS

RESULTS

A total of 866 PLWHAs were interviewed in this study. The majority of participants were female, married, had completed primary school and were 30-49 years of age (see Table 1). Most of participants were diagnosed with HIV three to six years ago (76%) and one-quarter of the respondents had full-blown AIDS.

Half of respondents (50.9%) perceived that HIV/AIDS had a substantial impact on their social relationships with relatives and/or friends and over one third (37.3%) perceived a substantial impact on social relationships with neighbors (see Table 1). PLWHA who reported HIV/AIDS had a substantial impact on their social relationships with relatives and/or friends and with neighbors were more likely to be aged 50-59, and were poorer than those who perceived that HIV/AIDS had limited impact on their social relationships. The perceived impact of HIV/AIDS on relationships with relatives and/or friends and with neighbors was greater among those who reported that their living conditions were much lower than that of others in their village. Individuals who reported a deterioration in their relationships with neighbors were less likely to report that neighbors currently provided regular assistance. Individuals who were diagnosed with AIDS as opposed to HIV were more likely to report a substantial impact on both relatives and/or friends and neighbors.

As shown in the logistic regression analyses (See Table 2), PLWHA had twice the odds of reporting that HIV/AIDS had an impact on their relationships with relatives and/or friends if they were aged 50-59 in comparison to those aged 20 to 29. Those in the lowest income bracket had twice the odds of those in the highest income category of reporting that HIV/AIDS had a substantial impact on their relationship with relatives and/or friends. In comparison to those who reported their living standard was average in their village, those who reported a much lower standard of living had twice the odds of reporting that HIV/AIDS substantially affected their relationship with relatives and/or friends. Respondents with AIDS had 53% higher odds of reporting that HIV/AIDS had a substantial impact on relationship with relatives and/or friends than respondents who were HIV positive but did not have AIDS.

Similarly, the odds of reporting that HIV/AIDS had a substantial impact on relationships with neighbors were higher among those with AIDS as opposed to HIV, and those who reported their living conditions were much lower than other villagers. In contrast to the bivariate findings, age and income level were not statistically significant factors in the multiple logistic regression analysis focused on relationship with neighbors.

DISCUSSION

Half of the respondents reported that they perceived that HIV/AIDS had a substantial impact on social relationships with relatives and/or friends. One third of the PLWHA in this study reported the disease had a substantial impact on their social relationships with neighbors. The poorest respondents and those with AIDS as opposed to HIV were the most likely to report social relationships were seriously affected by their illness.

The long-term consequences of such widespread perceived impact of HIV/AIDS on social relationships may be considerable. Previous research has demonstrated the importance of strong social support networks for PLWHA [30-36,42]. As was discussed above, social support promotes greater medical compliance, improves immune system functioning and slows the progress of HIV/AIDS [24-29,43]. Neighbors are an integral part of many rural Chinese’s social support network. Among those who reported limited impact of HIV/AIDS on relations with neighbors, almost one-half reported that neighbors regularly provided assistance to them. For those who claimed that HIV/AIDS had substantial impact on relationships with neighbors, only one in five relied on neighbors for regular assistance.

Our findings indicate that those with lower socioeconomic status were more likely to report that HIV/AIDS has had a substantial impact on their social relationships. The respondents’ subjective perspective of their living standard relative to other villagers was strongly associated with the perceived impact of HIV/AIDS on social relationships with relatives and/or friends and with neighbors. Income level was associated with the perceived impact of HIV/AIDS on social relationships with relatives and/or friends but not with neighbors. Poorer individuals may need to rely more intensely on extended family members, friends and/or neighbors to help with caregiving and/or financial assistance. In contrast, affluent AIDS households can often manage with no or minimal economic assistance or tangible support from relatives. It is possible that the additional demands on family and friends required by impoverished PLWHA may put undue strain on their relationships. If this is so, one potential strategy to mitigate the negative impact of HIV/AIDS on social relationships is to take measures to strengthen the economic status of AIDS households. Although the government provides financial assistance to PLWHA, the amount received is only approximately 10% of the average annual household income. Governments or Non-Governmental Organizations could develop programs or create supportive policies including micro-loan services, tax benefits, and support groups to assist PLWHA in finding employment suitable to their health status. Such a strategy could not only increase household income, but could decrease the negative impact of HIV/AIDS and improve quality of life.

PLWHAs were more likely to report that HIV/AIDS had a substantial impact on relationships both with relatives and/or friends and with neighbors if the disease had progressed to the AIDS stage. The caregiving demands on an individual’s social support network and the concomitant potential for strain in these relationships often increase as the illness progresses. Another hypothesis results from the fact that the disease is harder to conceal once it becomes symptomatic. North American literature suggests that those with AIDS symptomatology face greater AIDS stigma [44]. It may be this higher level of stigma that results in declining quality of some social relationships.

Individuals aged 50-59 were more than twice as likely to report an impact on their relationships with relatives and/or friends in comparison to PLWHA in their 20s. If the PLWHA’s perceived impact of HIV/AIDS on social relationships is primarily mediated through stigma, this study’s finding is not congruent with previous research. A meta-analysis based on 24 peer reviewed journal articles published since 2000 in North America shows that the stigma level was significantly higher in younger age groups [44]. Liu’s [15] study in rural China found that age did not play a role in the level of AIDS stigma. Differences in sampling strategy and ways of measuring stigma may have contributed to these conflicting findings. One possible explanation for our result is that PLWHA in this age group are often the main household breadwinner. It is possible through their employment outside the home that they are exposed to greater discrimination. In addition, as PLWHA become too ill to work as they get older, the presence of the disease may become more visible to others. An alternative explanation is due to cohort differences. PLWHA who are currently 50-59 years of age represent many of the first group of people infected with HIV in the mid-1990s (especially in central China). At that time, there was no public education on AIDS in China. Therefore, those who were infected during the middle 1990s were exposed to high levels of AIDS stigma and discrimination. Recently, however, there has been a decline in social stigma faced by PLWHA. Over the past decade, Chinese federal and provincial governments conducted public education campaigns to increase knowledge about HIV/AIDS and to decrease stigma [1]. Many respondents in our study in Henan and Anhui provinces mentioned that this government initiated campaign was extremely helpful in improving the social acceptance of PLWHA. In addition, the programs to provide financial assistance to PLWHA and free HAART indicate government’s support for PLWHA. These programs have eased the economic impact of the disease and made ill PLWHA less dependent on family, friends and neighbors. Other studies of rural Chinese PLWHA are needed to determine if the same age pattern in perceived impact of social relationships can be replicated and to investigate other possible mechanisms which might explain this perplexing finding.

Free provision of HAART and other drugs is an important policy for which the Chinese government should be commended. However, our finding that those with full-blown AIDS symptoms were more likely to report that illness negatively affected their social relationships underlines the need for better medication to slow the progress of the disease.

Although there are policies in China addressing the needs of those with HIV/AIDS, further outreach and public education is needed. Intervention research must investigate the impact of financial subsidies, rural home-health care programs, support groups and public education on the social relationships of Chinese PLWHA. Representative rural and urban samples of Chinese PLWHA will improve the generalizability of future studies. Such studies are necessary because of substantial economic disparities and cultural differences between urban and rural Chinese regions.

There are several limitations to this study. The sensitivity of AIDS as a topic of investigation and the challenge of locating a large sample of PLWHA to complete the study resulted in our use of non- random sampling. Due to our sampling strategy, the vast majority of respondents (over 70%), received government financial assistance for PLWHA. Furthermore, our sample was predominantly drawn from villages with a high prevalence of HIV/AIDS where the transmission mode was primarily through blood and plasma donations. It is possible that the social issues faced by PLWHA are more severe in villages with few PLWHA or with other modes of transmission. Thus, we cannot be confident that our findings are representative of the experience of rural Chinese PLWHA. Another major limitation is that the impact of HIV/AIDS on social relationships was measured by self-report. Although the subjective perception of the PLWHA of the impact of HIV/AIDS on their social relationships has some advantages, objective measurement of social support in longitudinal studies would provide a better measure of the impact of HIV/AIDS on the provision and availability of social support. We also do not have information about the transmission mode of the disease. Research indicated this is an important factor in stigma [45,46]. Other important factors to consider in future research would be ethnic minority status and history of internal migration by the PLWHA and their sexual partners.

Despite these limitations, this study provided the largest survey to date of rural Chinese PLWHA perception of the social impact of HIV/AIDS on their social relationships with friends, extended families and neighbors. The findings suggest the need for government policy and program attention to the issue of poverty and social marginalization among PLWHA.

REFERENCES