Original ArticlePerceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China
Introduction
AIDS is the leading cause of death in China when compared with other infectious diseases and has drawn much attention. The China AIDS Response Progress Report of 2012 estimated 780,000 people living with HIV/AIDS (PLWH) in China at the end of 2011, with a prevalence rate of 0.058% in the general population (Ministry of Health of China, 2012). Highly active antiretroviral therapy (HAART) is the standard treatment for HIV infection in the world and has decreased mortality and morbidity among PLWH (Kushnir & Lewis, 2011). By the end of 2011, almost 155,000 PLWH received HAART in China, with adults increasing from 67.2% in 2011 to 76.1% (Ministry of Health of China, 2012). Currently, counseling and monitoring services sponsored by the government are being expanded in most provinces in China to control the spread of HIV/AIDS. HIV infection has become a chronic and manageable disease as diabetes and high blood pressure (Oguntibeju, 2012).
In China, several studies reported that the QOL of PLWH worsened when people’s HIV status was notified, especially for those infected through sexual contact (Sun et al., 2012, Sun et al., 2013). Meng et al. (2008) reported poor QOL of PLWH measured with short form SF-36. Another study showed that the mean score of overall QOL in Hubei was 25.8 by WHOQOL-BREF instrument (Chinese version) (Mkangara et al., 2009). HIV positive individuals reported poor QOL in groups such as the widowed or separated women, people with lower levels of education and the needy. A report found out that in Thailand PLWH had a moderate QOL (Munsawaengsub, Khair, & Nanthamongkolchai, 2012). But in Nepal, the QOL of PLWH was low with a mean score of 4 measured by the World Health Organization Quality of Life Questionnaire, and psychological domain was also the lowest (Giri et al., 2013).
In the era of HAART, a majority of patients are now on the life prolonging treatment globally. HAART has improved the QOL of PLWH by reducing the morbidity and mortality that were previously associated with AIDS, but the adverse reactions such as fatigue, anemia and digestive tract disorders are to blame for the low QOL of some patients (Adane et al., 2012, Mandorfer et al., 2013). In China, many patients have been diagnosed at advanced stages of the disease with severe symptoms, lower CD4 count and higher viral load, which mean that they have to deal with problems such as chronic clinical symptoms, heavy economic burden for health care, and loss of labor due to illness, and eventually poor QOL (He et al., 2012).
HIV-related discrimination and stigma impact negatively on the QOL of PLWH (Fuster-Ruizdeapodaca et al., 2014, Herrmann et al., 2013). HIV/AIDS is highly stigmatized in China with PLWH trying to cope with daily discrimination, in despite of the introduction of “Four Free, One Care” policy and increased knowledge and understanding of HIV/AIDS. For the public, AIDS is associated with “horror”, “drug abuse”, “metamorphosis”, and “sexual promiscuity (Goffman, 1963). “Sex” has always been an obscure topic in China and the public considered PLWH as sexual perverts who suffer for sexual immorality and deserve no mercy. Public discrimination makes them feel guilty, afraid of normal interaction with friends, lose social support, and denied job opportunities. Moreover, perceived stigma and discrimination may prevent PLWH from disclosing their status and treatment, causing non-adherent therapy, low self-esteem and poor QOL (Charles et al., 2012, Li et al., 2011). PLWH are beset with various psychological problems, such as depression (Charles et al., 2012), anger (Archibald, 2010), despair and hatred, which all negatively affect their QOL directly or indirectly.
Social support has a significant effect on the QOL of PLWH. Previous studies reported that social support was correlated with the QOL (Bajunirwe et al., 2009, Gielen et al., 2001, Yadav, 2010). People with good social support reported better mental health and QOL. In Colombia, satisfaction with family support was significantly associated with patients’ QOL (Cardona-Arias, Pelaez-Vanegas, Lopez-Saldarriaga, Duque-Molina, & Leal-Alvarez, 2011). Social support provides psychological boost for PLWH which in turn ensures a good mental state, a necessity for good health.
Previous studies have reported the relationships between stigma, social support, and QOL. But in China, researches on the QOL of PLWH mainly focus on exploring the relationship between different factors and finding the mediation effect (Li et al., 2011, Rao et al., 2012), while studies on relationships between the physical index, medical social support, stigma and QOL are rare. To recommend new interventions to improve QOL and help PLWH manage the chronic disease, we applied a cultural grounded stigma scale and certain physical indexes to explore the relationships among these factors.
Section snippets
Participants and setting
We used a cross-sectional descriptive design in this study. Data were collected from July 2011 to September 2012. The study included 190 PLWH. Participants were PLWH who received medical care at the HIV clinics of 2 hospitals in Hunan: the Third Hospital of Hengyang and Changsha Hospital of Infectious Diseases. Participants were included if they met the following criteria: 1) age 18 years or older; 2) confirmed diagnosis of HIV/AIDS; 3) physically able to answer questions in the questionnaires
Sample
We recruited 190 participants (137 males and 53 females) in the study. The average age of the participants was 38.3 years (21–68 years, SD = 9.4 years). A total of 166 participants (87.4%) received antiretroviral therapy (ART), and 49 participants (26%) used drugs and the average drug use lasted 24.2 months (0–74 months, SD = 19.9). The average HIV diagnosis took 30.3 months (0–98 months, SD = 23.1). Other demographic information was presented in Table 1.
Descriptive analysis of QOL, perceived stigma and social support
The basic descriptive statistics of perceived
Discussion
This study investigated the relationships among perceived stigma, medical social support and QOL in PLWH in China.
Compared with the previous studies (Gielen et al., 2001, Rao et al., 2012), our subjects had a relatively higher level of QOL, with the mean QOL score of 61.67. The top 3 high scores were pain, physical function, and cognitive function, while the general health perception scored the lowest. The probable explanation for the relatively higher QOL in this sample is increased annual
Limitation
The main limitation of this study is its small sample size. Subsequent studies should use a bigger sample, path analysis and structural equation modeling to analyze the relationships among variables. Furthermore, to observe the change of QOL, human interventions may be taken into consideration.
Conclusion
Perceived stigma and social support are correlated with PLWH’s QOL. Other factors, including CD4 cell counts, drug abuse, and ART, are also associated with patients’ QOL. Internalized stigma and family stigma are important factors for patients’ QOL. Future intervention studies are needed to help patients’ form positive attitude towards AIDS and HIV-related problems, and equip them with new knowledge to manage the chronic disease.
Acknowledgments
This project was supported by Hunan Provincial Natural Science Foundation of China (11JJ6090) and China Global Fund for AIDS Programs (12-167). We owe our gratitude to the health providers and participants in the AIDS clinics of Hengyang and Changsha hospitals dfor their participation.
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Grant support: This project was supported by Hunan Provincial Natural Science Foundation of China (11JJ6090) and China Global Fund for AIDS Programs (CSO-2012-Yan06).
Disclosure of potential conflicts of interest: No potential conflicts of interest were disclosed.