Applied Nursing Research xxx (2014) xxx–xxx
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Original Article
Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China Xiaohua Wu, RN, MSN a, Jia Chen, RN, MSN b,⁎, Huigen Huang, RN, MPH a, Ziping Liu, MD, MMS c, Xianhong Li, RN, PhD b, Honghong Wang, RN, PhD b a b c
Guangdong General Hospital, 510080, Guangzhou, China School of Nursing of Central South University, 410013, Changsha, China The First Hospital of Li Wan, 510370, Guangzhou, China
a r t i c l e
i n f o
Article history: Received 23 May 2014 Revised 26 September 2014 Accepted 26 September 2014 Available online xxxx Keywords: China HIV Perceived stigma Medical social support Quality of life
a b s t r a c t Purpose: The present study aimed at examining the relationships among perceived stigma, social support, and quality of life (QOL) in people living with HIV (PLWH). Methods: We recruited 190 participants meeting the inclusion criteria from two HIV clinics in Hunan, China. HIVrelated Stigma Scale, the Chinese Version of the Medical Outcomes Study — Social Support Survey (MOS-SSS-C), and the Medical Outcomes Study-HIV (MOS-HIV) were used to measure the perceived stigma, social support and QOL in PLWH. Results: The mean scores of the perceived stigma, social support, and QOL were 104.32, 53.63, and 61.97 respectively, which were in moderate range. Stepwise multivariate regression analysis showed (R2 = .49, p b .01) a low score of internalized stigma and family stigma, a high score of tangible support for non-drug use and antiretroviral treatment, and high CD4 count predicted better QOL. Conclusion: Perceived stigma and social support are correlated with the QOL in PLWH. Interventions designed to decrease perceived stigma and strengthen social support from family are necessary to improve the QOL in PLWH. © 2014 Published by Elsevier Inc.
1. 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). 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. ⁎ Corresponding author at: School of Nursing of Central South University, 172 Tong Zi Po Road, Changsha 410013, Hunan, China. Tel.: +86 731 826502266; fax: +86 731 82650262. E-mail address: [email protected] (J. Chen).
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, Li, Zhao, & Lu, 2012; Sun, Wu, Qu, Lu, & Wang, 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, Desta, Bezabih, Gashaye, & Kassa, 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).
http://dx.doi.org/10.1016/j.apnr.2014.09.011 0897-1897/© 2014 Published by Elsevier Inc.
Please cite this article as: Wu, X., et al., Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China, Applied Nursing Research (2014), http://dx.doi.org/10.1016/j.apnr.2014.09.011
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HIV-related discrimination and stigma impact negatively on the QOL of PLWH (Fuster-Ruizdeapodaca, Molero, Holgado, & Mayordomo, 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 nonadherent 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, McDonnell, Wu, O'Campo, & Faden, 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, PelaezVanegas, 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. 2. Methodology 2.1. 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 and clearly convey their advice; 4) receiving treatment with care and support. Patients who had the following traits were excluded: 1) failed to understand the aim of the study and communicate with researchers; 2) failed to finish the study due to physical diseases; 3) enrolled in other similar studies. All participants signed informed consent before the study. 2.2. Measurements 2.2.1. General information questionnaire The general information questionnaire provided demographic data such as participants’ age, gender, residence (rural or urban), marital/partner status, average household income, education, and employment status. Other information about HIV/AIDS status is also included, such as the date of HIV diagnosis, CD4 cell count, mode of infection, and drug abuse. 2.2.2. HIV/AIDS-related stigma scale HIV/AIDS-related stigma scale is a culturally sensitive Chinese scale developed by Li, G., and H. (2010), including 5 domains (disclosure concern, public rejection, family stigma, internalized stigma and health professional
stigma) and 34 items in total. It is a 5-point Likert scale, of which each item is from Strongly Disagree to Strongly Agree scoring 1 to 5. The total score is 100 and high scores imply severe degree of perceived stigma and discrimination. Cronbach’s alpha of the scale was 0.90, the content validity index was 0.88, and the evaluation results were acceptable (Li et al., 2010). 2.2.3. The Chinese version of the Medical Outcomes Study — Social Support Survey (MOS-SSS-C) The MOS-SSS-C is a multidimensional measure of perceived social support developed for patients with chronic diseases (Yu, Lee, & Woo, 2004). It contains 19 items and each item is scored on a 5-point Likert scale format indicating how often a patient receives the needed support, with “1” representing none of the time and “5” all of the time. The 4 subscales consist of tangible support, affectionate support, positive social interactive support and emotional–informational support, and measure different domains of medical social support. The total score of MOS-SSS-C ranges from 0 to 100, in which the higher score indicates better perceived social support. The Cronbach’s alpha of the scale was 0.98, with good validity and reliability (Li, 2012). 2.2.4. The Medical Outcomes Study-HIV (MOS-HIV) The Chinese simplified version of MOS-HIV (Yang, Liu, Jia, & Xun, 2007) was used to measure the QOL of PLWH, containing 10 domains and 35 items, which is a valid measure used globally (Bajunirwe et al., 2009; Huang, Tian, Dai, & Ye, 2012; Ichikawa & Natpratan, 2004; Lau, Tsui, Patrick, Rita, & Molassiotis, 2006; Wu, Revicki, Jacobson, & Malitz, 1997). The score for each subscale was calculated by summing each score and transformed with a standard formula (Wu, 1996).The total score of the scale ranged from 0 to 100, in which high score predicted better QOL. 2.3. Ethical considerations The study was approved by Institutional Review Committee in School of Nursing of Central South University. An informed consent was signed by every participant after we explained the purpose, procedure, risk, and benefit about the study to the participants, who were given codes instead of names on the questionnaires to ensure anonymity and confidentially. The participants were assured that their participation or non participation or withdrawal from the study would not affect the care they would receive from the clinic. Upon completing the questionnaire, a box of multivitamins (cost of 20–30 RMB) was provided to each participant as a gift for participating in the study. 2.4. Data analysis Statistical Package for Social Sciences (SPSS) 16.0 was used to analyze the data. The participants’ demographic information was reported with measures of central tendency and percentages. Scores of perceived stigma, social support, and QOL were presented as mean and standard deviation. Bivariate relationships between subscales of each variable and all domains of QOL were examined with Pearson coefficients. Stepwise logistic regression was used to analyze the relationships among the independent variables (perceived stigma, social support and demographic variables) and dependent variable (QOL). 3. Results 3.1. 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.
Please cite this article as: Wu, X., et al., Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China, Applied Nursing Research (2014), http://dx.doi.org/10.1016/j.apnr.2014.09.011
X. Wu et al. / Applied Nursing Research xxx (2014) xxx–xxx
3.2. Descriptive analysis of QOL, perceived stigma and social support The basic descriptive statistics of perceived stigma, social support and QOL were shown in Tables 2–4. The mean score of perceived stigma was 104.32 (SD = 22.89, mean = 3.07), which was lower than that in a previous study (Li et al., 2011). Most participants were afraid of disclosure, and the mean of the subscale was 25.21 (SD = 5.9, mean = 4.32). The mean score of social support was 53.63 (SD = 24.32). The average number of close relatives of participants’ was 4 and that of familiar friends was 2. The total mean score of QOL was 61.97 (SD = 19.55) and the domain of general health perceptions scored the lowest. 3.3. Bivariate analysis of correlations among perceived stigma, social support and quality of life The correlation between subscales of QOL and subscales of main variables was shown in Tables 5–6. Among all the domains of QOL, all subscales were negatively associated with perceived stigma. Participants who reported higher health distress had lower level of perceived stigma (r = − 0.581, p b .01), especially patients’ internalized stigma (r = −0.644, p b .01). The subscales of QOL were positively associated with medical social support except for role functioning and pain. Participants who reported better mental health had more medical social support (r = 0.448, p b .01), particularly in positive social interaction support (r = 0.458, p b .01). 3.4. Multivariate regression analysis of QOL The results of multivariate regression analysis were shown in Table 7. Stepwise regression analysis was conducted with the QOL score as the dependent variable, and related factors as independent variables, including all subscales of perceived stigma and social support, drug use, CD4 cell counts, and received ART. Only internalized stigma, family stigma, tangible support, abuse, received ART and CD4 cell counts were input into the regression model (R = 0.70, R 2 = 0.49, F = 27.67, p b .01). Participants who had lower levels of internalized stigma (β = − 0.45, p = .00) and family stigma (β = − 0.18, p = .01) had more Table 1 Demographic data and HIV-related information (N = 190). Variable
Type
Frequency
Percentage
Age (year)
20–37 38–55 N55 male female married/with stable partner single/divorced/widowed unemployed employed occasionally stable work others owning a house renting a house not owning a house primary school middle school high school/vocational school college or university heterosexual homosexual needle-sharing blood transfusion unknown yes yes b200 200–350 351–500 N500
92 88 10 137 53 106 84 96 34 51 9 130 58 2 24 88 50 28 76 15 41 6 52 49 166 75 47 40 17
48.4 46.3 5.3 72.16 27.9 55.8 44.2 50.5 17.9 26.8 4.8 68.4 30.5 1.1 12.6 46.3 26.3 14.7 40.0 7.9 21.6 3.2 27.4 25.8 87.4 39.5 24.7 21.1 8.9
Gender Marital status Employment
Living status
Education background
Mode of infection
Drug abuse Received ART CD4 counts
3
Table 2 Descriptive statistics of MOS-HIV (N = 190). Dimension
Item
Minimum
Maximum
Mean ± SD
General health perception Physical function Role function Social function Cognitive function Pain Mental health Energy Health distress Quality of life Health transition total
5 6 2 1 4 2 5 4 4 1 1 35
0 0 0 0 0 0 0 0 0 0 0 12.06
100 100 100 100 100 100 100 100 100 100 100 98.58
39.63 78.60 71.32 65.58 74.50 79.06 61.01 54.03 64.13 56.05 54.34 61.97
± ± ± ± ± ± ± ± ± ± ± ±
24.90 21.79 37.58 33.62 22.96 25.93 25.54 25.65 30.11 19.20 26.93 19.55
tangible support (β = 0.17, p = .01), available ART (β = 0.12, p = .03), and were free from drug abuse (β = −0.17, p = .00), suggesting better QOL. 4. 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 income, stable work, feasible antiretroviral therapy, better medication adherence, and stronger social support system. Evidence showed that patients who had HAART for longer time had higher QOL (Bello & Bello, 2013). HAART is able to limit and control the replication of HIV and reduce the viral load to undetectable levels. With scaling up of ART program, PLWH are assured that they will have continued and regular supply of life sustaining drugs, learn more about HAART, and accept the fact that ART is just like other therapies for chronic diseases and requires a lifelong commitment. At the same time, improved living standards and increasing annual income have ensured PLWH to be able to afford quality health services to improve their QOL. Whereas, the poor perception of general health in PLWH is worth much attention, and it is possibly associated with HIV-related symptoms such as fatigue, fever, depression, or other potential complications or comorbidities. For PLWH with low level of general health perception, further assessment is needed to rule out other possibilities. The study findings have shown that participants had a moderate level of perceived stigma. These findings were consistent with those by Li et al. (2011). Among all domains the higher scores were internalized stigma, public stigma and disclosure concerns. In fact, HIV-related stigma and discrimination are a global concern. In China, 41.7% of the 2000 HIV patients investigated reported experience of HIV-related discrimination, and more than 76% reported that their family members were being discriminated (UNAIDS, 2009). In Ethiopia, a quantitative and qualitative study indicated that stigmatization was the main reason for extra precaution scale for service providers (Feyissa, Abebe, Girma, & Woldie, 2012). In India, a study reported that more than 80% of non-HIV patients considered HIV-infected individuals to be “people who got Table 3 Descriptive statistics of HIV/AIDS-related stigma and discrimination (N = 190). Dimension
Item
Minimum
Maximum
Mean ± SD
Disclosure concern Public rejection Family stigma Internalized stigma Health professional stigma total
6 6 10 10 2 34
6 10 6 10 2 34
69 50 30 50 10 170
25.21 22.98 18.20 32.13 5.69 104.32
± ± ± ± ± ±
5.90 8.37 6.20 9.36 2.08 22.89
Please cite this article as: Wu, X., et al., Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China, Applied Nursing Research (2014), http://dx.doi.org/10.1016/j.apnr.2014.09.011
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Table 4 Descriptive statistics of medical social support scale (N = 190).
Table 6 Correlation between medical social support and QOL measures (N = 190).
Dimension
Minimum
Maximum
Mean ± SD
Tangible support Affectionate support Positive social interaction Emotional–informational total
0 0 0 0 2.34
100 100 100 100 100
60.56 56.14 52.40 45.41 53.63
± ± ± ± ±
30.24 27.06 27.46 24.06 24.33
what they deserved”; while half of the interviewees stated that they would not accept treatment at a clinic that served PLWH (Ekstrand, Bharat, Ramakrishna, & Heylen, 2012). Meanwhile, HIV-related stigma would lead to depression, poor medication adherence and bad QOL (Li, Lee, Thammawijaya, Jiraphongsa, & Rotheram-Borus, 2009; Sumari-de, Sprangers, Prins, & Nieuwkerk, 2012). This study showed that all participants had high scores of disclosure concern and public discrimination. Much attention was paid to the problem of disclosure, and PLWH would not disclose their HIV status due to the fear of isolation and job loss. Multivariable regression analysis found that factors including drug abuse, ART, low CD4 cell counts, internalized stigma, family stigma and tangible support were associated with the QOL. Internalized stigma, family stigma and drug abuse were negatively correlated with the QOL, while ART, high CD4 cell counts and tangible support were positively correlated with the QOL. Internalized stigma was the most important factor to impact the QOL. Several studies have also explored these factors associated with patients’ QOL (Khumsaen, Aoup-Por, & Thammachak, 2012; Sun et al., 2013). Additionally, study participants who reported lower levels of internalized stigma and family stigma presented higher levels of QOL. Internalized stigma has a great impact on the QOL of PLWH, and is negatively correlated with all subscales of the QOL, which is similar to South African study (Peltzer & Ramlagan, 2011). Family stigma is also correlated with most of the QOL domains. Since culturally most activities are family centered in China, most patients get or require support from their families. Once a patient is sick, they will seek care and support from their family first. However, patients’ fear of disclosure, family indifference and negative attitude made them distressed, guilty, depressed, despair, and disowned. All these negative emotions prevent patients from seeking for professional health care services, and become major obstacles for HIV prevention and control. It takes a long time to change the negative public attitude of and bias on AIDS, and effort is needed from the whole society to deal with AIDS-related stigma. It is not easy to reduce social discrimination quickly; however, it would be effective to reduce the internalized stigma and family stigma to improve the QOL of PLWH. Specific intervention is necessary to improve the recognition of HIV in PLWH and their family members, to reconcile their
Table 5 Correlation between perceived stigma and QOL measure (N = 190).
GHP PF RF SF CF Pain MH Energy HD QOL HT
Disclosure concern
Public rejection
Family stigma
Internalized stigma
Health professional stigma
−0.090 0.036 −0.060 −0.104 −0.038 −0.010 −0.108 −0.203⁎⁎ −0.204⁎⁎ −0.078 −0.225⁎⁎
−0.259⁎⁎ −0.283⁎⁎ −0.146⁎ −0.362⁎⁎ −0.298⁎⁎ −0.236⁎⁎ −0.367⁎⁎ −0.302⁎⁎ −0.396⁎⁎ −0.283⁎⁎
−0.314⁎⁎ −0.331⁎⁎ −0.139 −0.377⁎⁎ −0.332⁎⁎ −0.307⁎⁎ −0.316⁎⁎ −0.325⁎⁎ −0.396⁎⁎ −0.180⁎
−0.140 −0.086 −0.084 −0.214⁎⁎ −0.166⁎
−0.142
−0.116
−0.503⁎⁎ −0.270⁎⁎ −0.216⁎⁎ −0.440⁎⁎ −0.367⁎⁎ −0.296⁎⁎ −0.641⁎⁎ −0.523⁎⁎ −0.644⁎⁎ −0.370⁎⁎ −0.232⁎⁎
−0.083 −0.163⁎ −0.083 −0.166⁎ −0.063 −0.158⁎
Notes: GHP: general health perception instead; RF: role function; SF: social function; CF: cognitive function; MH: mental health; HD: health distress; QOL: quality o life; HT: health transition. ⁎ p b0.05. ⁎⁎ p b 0.01.
GHP PF RF SF CF Pain MH Energy HD QOL HT
Tangible support
Affectional support
Social action support
Emotional support
0.259⁎⁎ 0.183⁎ 0.069 0.192⁎⁎ 0.200⁎⁎
0.166⁎ 0.109 −0.004 0.129 0.148⁎ 0.079 0.353⁎⁎ 0.243⁎⁎ 0.257⁎⁎ 0.194⁎⁎
0.282⁎⁎ 0.181⁎ 0.017 0.234⁎⁎ 0.191⁎⁎
0.147⁎ 0.148⁎ −0.020 0.136 0.150⁎ 0.047 0.327⁎⁎ 0.227⁎⁎ 0.238⁎⁎
0.100 0.450⁎⁎ 0.350⁎⁎ 0.383⁎⁎ 0.186⁎ 0.156⁎
0.080
0.077 0.458⁎⁎ 0.347⁎⁎ 0.358⁎⁎ 0.276⁎⁎ 0.180⁎
0.139 0.113
⁎ p b0.05. ⁎⁎ p b 0.01.
internalized guilt and shame, and finally empower them to manage their disease and life. It also indicates the need for further research on exploring strategies focusing on individual and family level of fighting stigma. The participants’ medical social support score reported in our study was higher than that of a similar study in China by Rao (Rao et al., 2012); however, it was lower than the one done in Canada (Burgoyne & Renwick, 2004). Possible reasons for the difference could be cultural differences in the 2 countries and the improvement in people’s lifestyle. Participants now have more access to useful information and more support from various ways than before. Among all the subscales of social support, most subscales of the QOL are correlated with social support domain, and tangible support is an important factor to affect the QOL. Social support that serves as a protection for patients’ QOL (Emlet, Fredriksen-Goldsen, & Kim, 2013), has an obvious direct effect on the QOL (Bekele et al., 2013). Participants with better social support indicate less depression and loneliness (Zhao et al., 2011) and predicted better QOL (Charles et al., 2012). Our results indicated that QOL was positively correlated with social support and negatively correlated with perceived stigma, which is consistent with that of previous studies (Bekele et al., 2013; Rao et al., 2012). As reported in these previous studies, social support was negatively predicted by HIV-related stigma (Colbert, Kim, Sereika, & Erlen, 2010; Prachakul, Grant, & Keltner, 2007). HIV-related stigma had an indirect effect on risk behaviors through social support and depression (Clum, Chung, & Ellen, 2009). Among these variables, we did not find the mediation effect. Nevertheless, Li’s study reported that HIV-related stigma totally mediated the relationships between self-efficacy and quality of life (Li et al., 2011), and Rao’s report found that social support was a full mediator of the impact of perceived stigma on both depressive symptoms and QOL (Rao et al., 2012). Studies found that social support had indirect effect on the QOL and was mediated by hope and depressive symptoms (Bekele et al., 2013; Peltzer & Ramlagan, 2011). In this study, 49 (25.8%) participants had a history of drug abuse. On a multivariable regression model, it was significantly negatively correlated with the QOL. Patients generally have a poor immunity state as compared with the public and need to maintain good nutrition, but drug use worsens their health outlook, increases clinical symptoms, and diminishes optimal medication adherence. Most drug users are Table 7 Stepwise regression analysis of QOL(N = 190).
Internalized stigma Family stigma Tangible support CD4 cell count Received ART Drug abuse
no = 0, yes = 1 no = 0,yes = 1
B
β
P
95% CI
−0.95 −0.58 0.11 0.01 8.03 −7.34
−0.45 −0.18 0.17 0.12 0.12 −0.17
.00 .01 .01 .03 .03 .00
−1.25 to −0.66 −0.98 to −0.17 0.03–0.19 0.00–0.03 0.78–15.28 −12.29 to −2.38
Please cite this article as: Wu, X., et al., Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China, Applied Nursing Research (2014), http://dx.doi.org/10.1016/j.apnr.2014.09.011
X. Wu et al. / Applied Nursing Research xxx (2014) xxx–xxx
jobless, which increases their financial burden. Most drugs have adverse effects on the users which in turn lead to poor QOL. Moreover, drug abusers are regarded as deserving the infection as a result of their habits and behaviors, are more likely to be confronted with severe public stigma and discrimination, and are distressed with poor QOL (Martin, Houston, Yasui, Wild, & Saunders, 2013; Te & Gaal, 2001). Many studies have demonstrated that CD4 cell counts were correlated with patients’ QOL (Ferreira, Oliveira, & Paniago, 2012). This study also reported that higher CD4 cell counts predicted better QOL. CD4 cell counts and viral load are common tests that indicate the immune status for PLWH. After receiving HAART, most HIV-infected patients had a stable CD4 cell counts and low viral load and better QOL. Fortunately, China’s care-free program has expanded to most hospitals. This study showed that being on ART predicted a better QOL, which was consistent with Trans B’s report (Rajeev, Yuvaraj, Nagendra, & Ravikumar, 2012; Tran, 2012). ART can effectively in control the spread of HIV, decrease clinical symptoms, and improve the QOL of PLWH. HAART regimens constitute a combination of 2 or 3 drugs. The study by Colomo reported that single-tablet regimen might result in better adherence and improved QOL for PLWH (Colombo, Di Matteo, & Maggiolo, 2013). Lower cost and convenience of the single-tablet regimen mean that it will be the preferred regimen at present and in the future. 5. 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. 6. 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. References Adane, A., Desta, K., Bezabih, A., Gashaye, A., & Kassa, D. (2012). HIV-associated anaemia before and after initiation of antiretroviral therapy at Art Centre of Minilik II Hospital, Addis Ababa, Ethiopia. Ethiopian Medical Journal, 50(1), 13–21. Archibald, C. (2010). HIV/AIDS-associated stigma among Afro-Caribbean people living in the United States. Archives of Psychiatric Nursing, 24(5), 362–364, http://dx.doi.org/ 10.1016/j.apnu.2010.04.004. Bajunirwe, F., Tisch, D. J., King, C. H., Arts, E. J., Debanne, S. M., & Sethi, A. K. (2009). Quality of life and social support among patients receiving antiretroviral therapy in Western Uganda. AIDS Care, 21(3), 271–279, http://dx.doi.org/10.1080/09540120802241863. Bekele, T., Rourke, S. B., Tucker, R., Greene, S., Sobota, M., Koornstra, J., et al. (2013). Direct and indirect effects of perceived social support on health-related quality of life in persons living with HIV/AIDS. AIDS Care, 25(3), 337–346, http://dx.doi.org/10.1080/ 09540121.2012.701716. Bello, S. I., & Bello, I. K. (2013). Quality of life of HIV/AIDS patients in a secondary health care facility, Ilorin, Nigeria. Proceedings (Baylor University. Medical Center), 26(2), 116–119. Burgoyne, R., & Renwick, R. (2004). Social support and quality of life over time among adults living with HIV in the HAART era. Social Science and Medicine, 58(7), 1353–1366, http://dx.doi.org/10.1016/S0277-9536(03)00314-9.
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Please cite this article as: Wu, X., et al., Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China, Applied Nursing Research (2014), http://dx.doi.org/10.1016/j.apnr.2014.09.011
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Original Article
Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China Xiaohua Wu, RN, MSN a, Jia Chen, RN, MSN b,⁎, Huigen Huang, RN, MPH a, Ziping Liu, MD, MMS c, Xianhong Li, RN, PhD b, Honghong Wang, RN, PhD b a b c
Guangdong General Hospital, 510080, Guangzhou, China School of Nursing of Central South University, 410013, Changsha, China The First Hospital of Li Wan, 510370, Guangzhou, China
a r t i c l e
i n f o
Article history: Received 23 May 2014 Revised 26 September 2014 Accepted 26 September 2014 Available online xxxx Keywords: China HIV Perceived stigma Medical social support Quality of life
a b s t r a c t Purpose: The present study aimed at examining the relationships among perceived stigma, social support, and quality of life (QOL) in people living with HIV (PLWH). Methods: We recruited 190 participants meeting the inclusion criteria from two HIV clinics in Hunan, China. HIVrelated Stigma Scale, the Chinese Version of the Medical Outcomes Study — Social Support Survey (MOS-SSS-C), and the Medical Outcomes Study-HIV (MOS-HIV) were used to measure the perceived stigma, social support and QOL in PLWH. Results: The mean scores of the perceived stigma, social support, and QOL were 104.32, 53.63, and 61.97 respectively, which were in moderate range. Stepwise multivariate regression analysis showed (R2 = .49, p b .01) a low score of internalized stigma and family stigma, a high score of tangible support for non-drug use and antiretroviral treatment, and high CD4 count predicted better QOL. Conclusion: Perceived stigma and social support are correlated with the QOL in PLWH. Interventions designed to decrease perceived stigma and strengthen social support from family are necessary to improve the QOL in PLWH. © 2014 Published by Elsevier Inc.
1. 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). 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. ⁎ Corresponding author at: School of Nursing of Central South University, 172 Tong Zi Po Road, Changsha 410013, Hunan, China. Tel.: +86 731 826502266; fax: +86 731 82650262. E-mail address: [email protected] (J. Chen).
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, Li, Zhao, & Lu, 2012; Sun, Wu, Qu, Lu, & Wang, 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, Desta, Bezabih, Gashaye, & Kassa, 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).
http://dx.doi.org/10.1016/j.apnr.2014.09.011 0897-1897/© 2014 Published by Elsevier Inc.
Please cite this article as: Wu, X., et al., Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China, Applied Nursing Research (2014), http://dx.doi.org/10.1016/j.apnr.2014.09.011
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HIV-related discrimination and stigma impact negatively on the QOL of PLWH (Fuster-Ruizdeapodaca, Molero, Holgado, & Mayordomo, 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 nonadherent 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, McDonnell, Wu, O'Campo, & Faden, 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, PelaezVanegas, 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. 2. Methodology 2.1. 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 and clearly convey their advice; 4) receiving treatment with care and support. Patients who had the following traits were excluded: 1) failed to understand the aim of the study and communicate with researchers; 2) failed to finish the study due to physical diseases; 3) enrolled in other similar studies. All participants signed informed consent before the study. 2.2. Measurements 2.2.1. General information questionnaire The general information questionnaire provided demographic data such as participants’ age, gender, residence (rural or urban), marital/partner status, average household income, education, and employment status. Other information about HIV/AIDS status is also included, such as the date of HIV diagnosis, CD4 cell count, mode of infection, and drug abuse. 2.2.2. HIV/AIDS-related stigma scale HIV/AIDS-related stigma scale is a culturally sensitive Chinese scale developed by Li, G., and H. (2010), including 5 domains (disclosure concern, public rejection, family stigma, internalized stigma and health professional
stigma) and 34 items in total. It is a 5-point Likert scale, of which each item is from Strongly Disagree to Strongly Agree scoring 1 to 5. The total score is 100 and high scores imply severe degree of perceived stigma and discrimination. Cronbach’s alpha of the scale was 0.90, the content validity index was 0.88, and the evaluation results were acceptable (Li et al., 2010). 2.2.3. The Chinese version of the Medical Outcomes Study — Social Support Survey (MOS-SSS-C) The MOS-SSS-C is a multidimensional measure of perceived social support developed for patients with chronic diseases (Yu, Lee, & Woo, 2004). It contains 19 items and each item is scored on a 5-point Likert scale format indicating how often a patient receives the needed support, with “1” representing none of the time and “5” all of the time. The 4 subscales consist of tangible support, affectionate support, positive social interactive support and emotional–informational support, and measure different domains of medical social support. The total score of MOS-SSS-C ranges from 0 to 100, in which the higher score indicates better perceived social support. The Cronbach’s alpha of the scale was 0.98, with good validity and reliability (Li, 2012). 2.2.4. The Medical Outcomes Study-HIV (MOS-HIV) The Chinese simplified version of MOS-HIV (Yang, Liu, Jia, & Xun, 2007) was used to measure the QOL of PLWH, containing 10 domains and 35 items, which is a valid measure used globally (Bajunirwe et al., 2009; Huang, Tian, Dai, & Ye, 2012; Ichikawa & Natpratan, 2004; Lau, Tsui, Patrick, Rita, & Molassiotis, 2006; Wu, Revicki, Jacobson, & Malitz, 1997). The score for each subscale was calculated by summing each score and transformed with a standard formula (Wu, 1996).The total score of the scale ranged from 0 to 100, in which high score predicted better QOL. 2.3. Ethical considerations The study was approved by Institutional Review Committee in School of Nursing of Central South University. An informed consent was signed by every participant after we explained the purpose, procedure, risk, and benefit about the study to the participants, who were given codes instead of names on the questionnaires to ensure anonymity and confidentially. The participants were assured that their participation or non participation or withdrawal from the study would not affect the care they would receive from the clinic. Upon completing the questionnaire, a box of multivitamins (cost of 20–30 RMB) was provided to each participant as a gift for participating in the study. 2.4. Data analysis Statistical Package for Social Sciences (SPSS) 16.0 was used to analyze the data. The participants’ demographic information was reported with measures of central tendency and percentages. Scores of perceived stigma, social support, and QOL were presented as mean and standard deviation. Bivariate relationships between subscales of each variable and all domains of QOL were examined with Pearson coefficients. Stepwise logistic regression was used to analyze the relationships among the independent variables (perceived stigma, social support and demographic variables) and dependent variable (QOL). 3. Results 3.1. 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.
Please cite this article as: Wu, X., et al., Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China, Applied Nursing Research (2014), http://dx.doi.org/10.1016/j.apnr.2014.09.011
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3.2. Descriptive analysis of QOL, perceived stigma and social support The basic descriptive statistics of perceived stigma, social support and QOL were shown in Tables 2–4. The mean score of perceived stigma was 104.32 (SD = 22.89, mean = 3.07), which was lower than that in a previous study (Li et al., 2011). Most participants were afraid of disclosure, and the mean of the subscale was 25.21 (SD = 5.9, mean = 4.32). The mean score of social support was 53.63 (SD = 24.32). The average number of close relatives of participants’ was 4 and that of familiar friends was 2. The total mean score of QOL was 61.97 (SD = 19.55) and the domain of general health perceptions scored the lowest. 3.3. Bivariate analysis of correlations among perceived stigma, social support and quality of life The correlation between subscales of QOL and subscales of main variables was shown in Tables 5–6. Among all the domains of QOL, all subscales were negatively associated with perceived stigma. Participants who reported higher health distress had lower level of perceived stigma (r = − 0.581, p b .01), especially patients’ internalized stigma (r = −0.644, p b .01). The subscales of QOL were positively associated with medical social support except for role functioning and pain. Participants who reported better mental health had more medical social support (r = 0.448, p b .01), particularly in positive social interaction support (r = 0.458, p b .01). 3.4. Multivariate regression analysis of QOL The results of multivariate regression analysis were shown in Table 7. Stepwise regression analysis was conducted with the QOL score as the dependent variable, and related factors as independent variables, including all subscales of perceived stigma and social support, drug use, CD4 cell counts, and received ART. Only internalized stigma, family stigma, tangible support, abuse, received ART and CD4 cell counts were input into the regression model (R = 0.70, R 2 = 0.49, F = 27.67, p b .01). Participants who had lower levels of internalized stigma (β = − 0.45, p = .00) and family stigma (β = − 0.18, p = .01) had more Table 1 Demographic data and HIV-related information (N = 190). Variable
Type
Frequency
Percentage
Age (year)
20–37 38–55 N55 male female married/with stable partner single/divorced/widowed unemployed employed occasionally stable work others owning a house renting a house not owning a house primary school middle school high school/vocational school college or university heterosexual homosexual needle-sharing blood transfusion unknown yes yes b200 200–350 351–500 N500
92 88 10 137 53 106 84 96 34 51 9 130 58 2 24 88 50 28 76 15 41 6 52 49 166 75 47 40 17
48.4 46.3 5.3 72.16 27.9 55.8 44.2 50.5 17.9 26.8 4.8 68.4 30.5 1.1 12.6 46.3 26.3 14.7 40.0 7.9 21.6 3.2 27.4 25.8 87.4 39.5 24.7 21.1 8.9
Gender Marital status Employment
Living status
Education background
Mode of infection
Drug abuse Received ART CD4 counts
3
Table 2 Descriptive statistics of MOS-HIV (N = 190). Dimension
Item
Minimum
Maximum
Mean ± SD
General health perception Physical function Role function Social function Cognitive function Pain Mental health Energy Health distress Quality of life Health transition total
5 6 2 1 4 2 5 4 4 1 1 35
0 0 0 0 0 0 0 0 0 0 0 12.06
100 100 100 100 100 100 100 100 100 100 100 98.58
39.63 78.60 71.32 65.58 74.50 79.06 61.01 54.03 64.13 56.05 54.34 61.97
± ± ± ± ± ± ± ± ± ± ± ±
24.90 21.79 37.58 33.62 22.96 25.93 25.54 25.65 30.11 19.20 26.93 19.55
tangible support (β = 0.17, p = .01), available ART (β = 0.12, p = .03), and were free from drug abuse (β = −0.17, p = .00), suggesting better QOL. 4. 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 income, stable work, feasible antiretroviral therapy, better medication adherence, and stronger social support system. Evidence showed that patients who had HAART for longer time had higher QOL (Bello & Bello, 2013). HAART is able to limit and control the replication of HIV and reduce the viral load to undetectable levels. With scaling up of ART program, PLWH are assured that they will have continued and regular supply of life sustaining drugs, learn more about HAART, and accept the fact that ART is just like other therapies for chronic diseases and requires a lifelong commitment. At the same time, improved living standards and increasing annual income have ensured PLWH to be able to afford quality health services to improve their QOL. Whereas, the poor perception of general health in PLWH is worth much attention, and it is possibly associated with HIV-related symptoms such as fatigue, fever, depression, or other potential complications or comorbidities. For PLWH with low level of general health perception, further assessment is needed to rule out other possibilities. The study findings have shown that participants had a moderate level of perceived stigma. These findings were consistent with those by Li et al. (2011). Among all domains the higher scores were internalized stigma, public stigma and disclosure concerns. In fact, HIV-related stigma and discrimination are a global concern. In China, 41.7% of the 2000 HIV patients investigated reported experience of HIV-related discrimination, and more than 76% reported that their family members were being discriminated (UNAIDS, 2009). In Ethiopia, a quantitative and qualitative study indicated that stigmatization was the main reason for extra precaution scale for service providers (Feyissa, Abebe, Girma, & Woldie, 2012). In India, a study reported that more than 80% of non-HIV patients considered HIV-infected individuals to be “people who got Table 3 Descriptive statistics of HIV/AIDS-related stigma and discrimination (N = 190). Dimension
Item
Minimum
Maximum
Mean ± SD
Disclosure concern Public rejection Family stigma Internalized stigma Health professional stigma total
6 6 10 10 2 34
6 10 6 10 2 34
69 50 30 50 10 170
25.21 22.98 18.20 32.13 5.69 104.32
± ± ± ± ± ±
5.90 8.37 6.20 9.36 2.08 22.89
Please cite this article as: Wu, X., et al., Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China, Applied Nursing Research (2014), http://dx.doi.org/10.1016/j.apnr.2014.09.011
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Table 4 Descriptive statistics of medical social support scale (N = 190).
Table 6 Correlation between medical social support and QOL measures (N = 190).
Dimension
Minimum
Maximum
Mean ± SD
Tangible support Affectionate support Positive social interaction Emotional–informational total
0 0 0 0 2.34
100 100 100 100 100
60.56 56.14 52.40 45.41 53.63
± ± ± ± ±
30.24 27.06 27.46 24.06 24.33
what they deserved”; while half of the interviewees stated that they would not accept treatment at a clinic that served PLWH (Ekstrand, Bharat, Ramakrishna, & Heylen, 2012). Meanwhile, HIV-related stigma would lead to depression, poor medication adherence and bad QOL (Li, Lee, Thammawijaya, Jiraphongsa, & Rotheram-Borus, 2009; Sumari-de, Sprangers, Prins, & Nieuwkerk, 2012). This study showed that all participants had high scores of disclosure concern and public discrimination. Much attention was paid to the problem of disclosure, and PLWH would not disclose their HIV status due to the fear of isolation and job loss. Multivariable regression analysis found that factors including drug abuse, ART, low CD4 cell counts, internalized stigma, family stigma and tangible support were associated with the QOL. Internalized stigma, family stigma and drug abuse were negatively correlated with the QOL, while ART, high CD4 cell counts and tangible support were positively correlated with the QOL. Internalized stigma was the most important factor to impact the QOL. Several studies have also explored these factors associated with patients’ QOL (Khumsaen, Aoup-Por, & Thammachak, 2012; Sun et al., 2013). Additionally, study participants who reported lower levels of internalized stigma and family stigma presented higher levels of QOL. Internalized stigma has a great impact on the QOL of PLWH, and is negatively correlated with all subscales of the QOL, which is similar to South African study (Peltzer & Ramlagan, 2011). Family stigma is also correlated with most of the QOL domains. Since culturally most activities are family centered in China, most patients get or require support from their families. Once a patient is sick, they will seek care and support from their family first. However, patients’ fear of disclosure, family indifference and negative attitude made them distressed, guilty, depressed, despair, and disowned. All these negative emotions prevent patients from seeking for professional health care services, and become major obstacles for HIV prevention and control. It takes a long time to change the negative public attitude of and bias on AIDS, and effort is needed from the whole society to deal with AIDS-related stigma. It is not easy to reduce social discrimination quickly; however, it would be effective to reduce the internalized stigma and family stigma to improve the QOL of PLWH. Specific intervention is necessary to improve the recognition of HIV in PLWH and their family members, to reconcile their
Table 5 Correlation between perceived stigma and QOL measure (N = 190).
GHP PF RF SF CF Pain MH Energy HD QOL HT
Disclosure concern
Public rejection
Family stigma
Internalized stigma
Health professional stigma
−0.090 0.036 −0.060 −0.104 −0.038 −0.010 −0.108 −0.203⁎⁎ −0.204⁎⁎ −0.078 −0.225⁎⁎
−0.259⁎⁎ −0.283⁎⁎ −0.146⁎ −0.362⁎⁎ −0.298⁎⁎ −0.236⁎⁎ −0.367⁎⁎ −0.302⁎⁎ −0.396⁎⁎ −0.283⁎⁎
−0.314⁎⁎ −0.331⁎⁎ −0.139 −0.377⁎⁎ −0.332⁎⁎ −0.307⁎⁎ −0.316⁎⁎ −0.325⁎⁎ −0.396⁎⁎ −0.180⁎
−0.140 −0.086 −0.084 −0.214⁎⁎ −0.166⁎
−0.142
−0.116
−0.503⁎⁎ −0.270⁎⁎ −0.216⁎⁎ −0.440⁎⁎ −0.367⁎⁎ −0.296⁎⁎ −0.641⁎⁎ −0.523⁎⁎ −0.644⁎⁎ −0.370⁎⁎ −0.232⁎⁎
−0.083 −0.163⁎ −0.083 −0.166⁎ −0.063 −0.158⁎
Notes: GHP: general health perception instead; RF: role function; SF: social function; CF: cognitive function; MH: mental health; HD: health distress; QOL: quality o life; HT: health transition. ⁎ p b0.05. ⁎⁎ p b 0.01.
GHP PF RF SF CF Pain MH Energy HD QOL HT
Tangible support
Affectional support
Social action support
Emotional support
0.259⁎⁎ 0.183⁎ 0.069 0.192⁎⁎ 0.200⁎⁎
0.166⁎ 0.109 −0.004 0.129 0.148⁎ 0.079 0.353⁎⁎ 0.243⁎⁎ 0.257⁎⁎ 0.194⁎⁎
0.282⁎⁎ 0.181⁎ 0.017 0.234⁎⁎ 0.191⁎⁎
0.147⁎ 0.148⁎ −0.020 0.136 0.150⁎ 0.047 0.327⁎⁎ 0.227⁎⁎ 0.238⁎⁎
0.100 0.450⁎⁎ 0.350⁎⁎ 0.383⁎⁎ 0.186⁎ 0.156⁎
0.080
0.077 0.458⁎⁎ 0.347⁎⁎ 0.358⁎⁎ 0.276⁎⁎ 0.180⁎
0.139 0.113
⁎ p b0.05. ⁎⁎ p b 0.01.
internalized guilt and shame, and finally empower them to manage their disease and life. It also indicates the need for further research on exploring strategies focusing on individual and family level of fighting stigma. The participants’ medical social support score reported in our study was higher than that of a similar study in China by Rao (Rao et al., 2012); however, it was lower than the one done in Canada (Burgoyne & Renwick, 2004). Possible reasons for the difference could be cultural differences in the 2 countries and the improvement in people’s lifestyle. Participants now have more access to useful information and more support from various ways than before. Among all the subscales of social support, most subscales of the QOL are correlated with social support domain, and tangible support is an important factor to affect the QOL. Social support that serves as a protection for patients’ QOL (Emlet, Fredriksen-Goldsen, & Kim, 2013), has an obvious direct effect on the QOL (Bekele et al., 2013). Participants with better social support indicate less depression and loneliness (Zhao et al., 2011) and predicted better QOL (Charles et al., 2012). Our results indicated that QOL was positively correlated with social support and negatively correlated with perceived stigma, which is consistent with that of previous studies (Bekele et al., 2013; Rao et al., 2012). As reported in these previous studies, social support was negatively predicted by HIV-related stigma (Colbert, Kim, Sereika, & Erlen, 2010; Prachakul, Grant, & Keltner, 2007). HIV-related stigma had an indirect effect on risk behaviors through social support and depression (Clum, Chung, & Ellen, 2009). Among these variables, we did not find the mediation effect. Nevertheless, Li’s study reported that HIV-related stigma totally mediated the relationships between self-efficacy and quality of life (Li et al., 2011), and Rao’s report found that social support was a full mediator of the impact of perceived stigma on both depressive symptoms and QOL (Rao et al., 2012). Studies found that social support had indirect effect on the QOL and was mediated by hope and depressive symptoms (Bekele et al., 2013; Peltzer & Ramlagan, 2011). In this study, 49 (25.8%) participants had a history of drug abuse. On a multivariable regression model, it was significantly negatively correlated with the QOL. Patients generally have a poor immunity state as compared with the public and need to maintain good nutrition, but drug use worsens their health outlook, increases clinical symptoms, and diminishes optimal medication adherence. Most drug users are Table 7 Stepwise regression analysis of QOL(N = 190).
Internalized stigma Family stigma Tangible support CD4 cell count Received ART Drug abuse
no = 0, yes = 1 no = 0,yes = 1
B
β
P
95% CI
−0.95 −0.58 0.11 0.01 8.03 −7.34
−0.45 −0.18 0.17 0.12 0.12 −0.17
.00 .01 .01 .03 .03 .00
−1.25 to −0.66 −0.98 to −0.17 0.03–0.19 0.00–0.03 0.78–15.28 −12.29 to −2.38
Please cite this article as: Wu, X., et al., Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China, Applied Nursing Research (2014), http://dx.doi.org/10.1016/j.apnr.2014.09.011
X. Wu et al. / Applied Nursing Research xxx (2014) xxx–xxx
jobless, which increases their financial burden. Most drugs have adverse effects on the users which in turn lead to poor QOL. Moreover, drug abusers are regarded as deserving the infection as a result of their habits and behaviors, are more likely to be confronted with severe public stigma and discrimination, and are distressed with poor QOL (Martin, Houston, Yasui, Wild, & Saunders, 2013; Te & Gaal, 2001). Many studies have demonstrated that CD4 cell counts were correlated with patients’ QOL (Ferreira, Oliveira, & Paniago, 2012). This study also reported that higher CD4 cell counts predicted better QOL. CD4 cell counts and viral load are common tests that indicate the immune status for PLWH. After receiving HAART, most HIV-infected patients had a stable CD4 cell counts and low viral load and better QOL. Fortunately, China’s care-free program has expanded to most hospitals. This study showed that being on ART predicted a better QOL, which was consistent with Trans B’s report (Rajeev, Yuvaraj, Nagendra, & Ravikumar, 2012; Tran, 2012). ART can effectively in control the spread of HIV, decrease clinical symptoms, and improve the QOL of PLWH. HAART regimens constitute a combination of 2 or 3 drugs. The study by Colomo reported that single-tablet regimen might result in better adherence and improved QOL for PLWH (Colombo, Di Matteo, & Maggiolo, 2013). Lower cost and convenience of the single-tablet regimen mean that it will be the preferred regimen at present and in the future. 5. 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. 6. 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. References Adane, A., Desta, K., Bezabih, A., Gashaye, A., & Kassa, D. (2012). HIV-associated anaemia before and after initiation of antiretroviral therapy at Art Centre of Minilik II Hospital, Addis Ababa, Ethiopia. Ethiopian Medical Journal, 50(1), 13–21. Archibald, C. (2010). HIV/AIDS-associated stigma among Afro-Caribbean people living in the United States. Archives of Psychiatric Nursing, 24(5), 362–364, http://dx.doi.org/ 10.1016/j.apnu.2010.04.004. Bajunirwe, F., Tisch, D. J., King, C. H., Arts, E. J., Debanne, S. M., & Sethi, A. K. (2009). Quality of life and social support among patients receiving antiretroviral therapy in Western Uganda. AIDS Care, 21(3), 271–279, http://dx.doi.org/10.1080/09540120802241863. Bekele, T., Rourke, S. B., Tucker, R., Greene, S., Sobota, M., Koornstra, J., et al. (2013). Direct and indirect effects of perceived social support on health-related quality of life in persons living with HIV/AIDS. AIDS Care, 25(3), 337–346, http://dx.doi.org/10.1080/ 09540121.2012.701716. Bello, S. I., & Bello, I. K. (2013). Quality of life of HIV/AIDS patients in a secondary health care facility, Ilorin, Nigeria. Proceedings (Baylor University. Medical Center), 26(2), 116–119. Burgoyne, R., & Renwick, R. (2004). Social support and quality of life over time among adults living with HIV in the HAART era. Social Science and Medicine, 58(7), 1353–1366, http://dx.doi.org/10.1016/S0277-9536(03)00314-9.
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Please cite this article as: Wu, X., et al., Perceived stigma, medical social support and quality of life among people living with HIV/AIDS in Hunan, China, Applied Nursing Research (2014), http://dx.doi.org/10.1016/j.apnr.2014.09.011
