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International Journal of Nursing Practice 2014; ••: ••–••
RESEARCH PAPER
HIV/AIDS stigma among older PLWHA in south rural China Yu-Jing Zhang MD* Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Yin-Guang Fan MD* Lecturer, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Lecturer, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Se-Ying Dai MD Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Bao-Zhu Li MD Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Wang-Dong Xu MD Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Lin-Feng Hu MM Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Juan Liu MD Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Correspondence: Dong-Qing Ye, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, 81 Meishan Road, Hefei 230032, Anhui, China. Email: [email protected] *Yu-Jing Zhang and Yin-Guang Fan contributed equally to this work and should be considered co-first authors. Conflict of interest: The authors have no conflict of interest to disclose. doi:10.1111/ijn.12254
© 2014 Wiley Publishing Asia Pty Ltd
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Hong Su PhD Professor, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China
Dong-Qing Ye PhD Professor, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Professor, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Accepted for publication June 2013 Zhang Y-J, Fan Y-G, Dai S-Y, Li B-Z, Xu W-D, Hu L-F, Liu J, Su H, Ye D-Q. International Journal of Nursing Practice 2014; ••: ••–•• HIV/AIDS stigma among older PLWHA in south rural China Stigma is a common problem among people living with HIV/AIDS (PLWHA). However, little is known about HIV/ AIDS-related stigma in older PLWHA over the age of 50. This study described the stigma of HIV/AIDS and its factors based on 120 PLWHA aged 50 or older in an area of high HIV prevalence in south rural China. Each participant completed a face-to-face questionnaire that collected information on demographic characteristics, AIDS-related events and experience of HIV/AIDS-related stigma. Finally, only 18.1% reported experiencing external stigma compared with 64.3% feeling internal stigma. Regression analysis indicated that social support and health status were the two variables that were significantly predictive of both external and internal stigma. Whatever, the more support were received from family members by PLWHA, the less external stigma was perceived. Negative marital situation was also related to external stigma. Reducing HIV/AIDS stigma requires a supportive environment, positive attitude and correct knowledge of AIDS. Health workers and policy makers should take practical approaches to reduce prejudice. Key words: HIV/AIDS, nursing, old patient, south rural China, stigma.
INTRODUCTION At the 59th World Health Assembly in Geneva in 2006, Johnson Mwakazi, a young HIV/AIDS activist from Kenya, spoke of his experience through a poem, ‘Underneath the Veil’: ‘This one thing has destroyed families. This one thing has destroyed marriages. This one thing has killed men. It is not HIV. It is not AIDS . . . It is stigmatization’.1 Goffman, who pioneered the concept of stigma as ‘an attribute that is deeply discrediting’, pointed out that stigma generated from three sources: abominations of the body, tribal identities and blemishes of character.2 With in-depth research on illnesses, stigma has been recognized and reflected in various types of diseases including cancer, leprosy, schizophrenia and HIV/AIDS.3–6 Nevertheless, comparative studies reported that higher levels of stigma exist with HIV than with either cancer or leprosy.3,4 Stigma remains a significant contributor to the burden of HIV/AIDS disease. AIDS-related stigma can inhibit PLWHA from HIV counselling and testing, disclosing results to others and keeping medical regimens.7–11 Current study also reported stigma and discrimination as a barrier to HIV prevention and vaccine research partici© 2014 Wiley Publishing Asia Pty Ltd
pation.12 AIDS-related stigma can influence patients’ quality of life and attitudes towards health policies.13,14 Moreover, it might cause depression, life-stressor burden and so on. Despite of this, stigmatization as a widespread phenomenon exists in the world regardless of the ethnicity, gender or age. In recent years, the HIV/AIDS number on old adults over 50-year age was soaring in China. For the group aged between 50 and 60 years, the proportion has increased 7.5 times in the last 11 years, whereas the constitute ratio was 1.6% in 2000 and 13.6% in 2011. The increases were more prominent for older PLWHA with the age of 65 years and over; the proportion had increased 20-fold from 0.34% to 7.0% in the same period.15 Both new infections and highly active antiretroviral therapy (ART) were contributing to this rapid growth.6,16 Currently, both mixed-methods and qualitative researches reflected that stigma was common among PLWHA aged 50 or older.6,16,17 Nokes et al. reported that older adults were more likely to hide their HIV status compared with younger adults.18 A research on 83 HIV/ AIDS cases 50-plus years of age revealed that stigma were
Stigma among HIV/AIDS patients in China
associated with psychological symptoms.19 Evidence was also provided that older PLWHA had to handle the diploid stigma of having the disease and being old. All of this made the older PLWHA more vulnerable to discrimination than the younger. Most studies regarding HIVrelated stigma targeted mostly non-infected people such as students, nurses and urban market workers in Chinese population, whereas a few papers were regarding on PLWHA living in the shadow of stigma. A research conducted among 322 PLWHA in south central China reported that 51% of the participants experienced social rejection and 70% felt self-devaluated.20 However, limited literatures focused on the vulnerable 50-plus old HIV/AIDS subgroups. The HIV-related stigma among the PLWHA aged 50 years or older remain understudied in China. To enhance understanding of stigma and various factors contributing to stigmatization among older PLWHA in China, we conducted this cross-sectional survey among 120 rural inhabitants in Luzhai rural county, south rural China; site selection was made because this county was one of the areas with the highest prevalence of HIV infection in Guangxi Province and confronted with serious burden of HIV/AIDS in south China.
METHOD Sample and setting From September to December 2011, a cross-sectional study was conducted among the confirmed diagnoses of HIV/AIDS people 50 years or older in Luzhai rural county, Guangxi Zhuang Autonomous Region. In the study, participants were recruited if they were adults registered in the database of the local Center for Diseases Control and Prevention (CDC), age 50 or older, and were participating in the national free ART programme regularly in the people’s hospital of Luzhai county. Due to the limited potential PLWHA over 50 years old and absent presence of some people, purposive sampling techniques were used to obtain the target people. One hundred twenty-six older PLWHA were involved in this programme. However, six people were excluded because they were under 50 years old. Finally, 120 eligible people were enrolled.
Procedure Participants were recruited from the People’s Hospital of Luzhai County by the workers of CDC, nurses and research team. Researchers were stationed at the hospital
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treatment site when the patients were notified by nurses to get the medicine. If someone was eligible, the investigator would ask for his consent to conduct a face-to-face interview at a separate room for participants’ confidentiality after introducing the purpose of the survey. The visit approximately lasted 20–25 min. After the interview, each participant received 20 Renminbi ($2.65 USD).
Measurement Demographic and background information Participants were asked to report on individual information including age, gender, race, marital status, education, occupation, yearly individual income, religion, health status, and support by family and social members. The health status was a self-feeling, with answers from ‘very well’ to ‘very poor’. Meanwhile, two items were used to weigh the support and care from family and social members (i.e. health-care workers, neighbours, society organizations, etc.).
AIDS-related events Participants were asked the most likely route of transmission (sexuality, sharing syringe or blood-borne) for themselves, the length of time after diagnosis, their disclosure status and the person who they were willing to tell (spouse, parents, siblings, children, friends or colleagues).
Stigma HIV/AIDS-related stigma was measured using a 24-item instrument by Fife and Wright.3 The development of the scales was described in Li’s team by which the questionnaire was translated into Chinese and used among 322 PLWHA in south central China, with a total Cronbach’s alpha of 0.86.20 We applied for Li’s Chinese scale for this study. So perception of stigma was indexed using the 20-item with five scales: social rejection, financial insecurity, negative self-worth, perceived interpersonal insecurity and discretionary disclosure. All items were designed to be assessed using a 5-point Likert-type response scale, where 1 = completely disagree and 5 = completely agree. Total scores ranged from 20 to 100, with the highest score indicating the strongest sense of feeling stigmatized. The Cronbach’s alpha was 0.4–0.9 for subscales in Li’s.20
External stigma Social rejection and financial insecurity belonging to external stigma posit stigmatizing behaviours and ostracizing © 2014 Wiley Publishing Asia Pty Ltd
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attitude directed by others. Social rejection (nine items) assesses the attitude towards HIV/AIDS of other people and the acts shown by family members. Financial insecurity (three items) measures the negative consequences brought about by the economic burden related to disease.
Internal stigma Internal stigma refers to the psychic process of accepting negative behaviours and stereotypes, and incorporating them into the self-concept which contains negative selfworth, perceived interpersonal insecurity and discretionary disclosure.21 Four-item scale measures self-worth levels about social interaction, change of work ability, responsibility for this disease and so on. Perceived interpersonal insecurity (two items) and discretionary disclosure (two items) assess patients’ defensiveness, how much they care about others’ opinions and disclosure avoidance, respectively.
Data analysis Descriptive statistics were used to delineate stigma and background characteristics in this sample. Then two steps of regression analysis were conducted to assess the contribution of demographic, background information and HIV/AIDS-related events to HIV/AIDS stigma (external scores, internal scores and total scores), using SPSS 17.0 (SPSS Inc., Chicago, IL, USA). First, simple linear regression was used to examine each of independent variables in predicting stigma. All variables that were statistically significant with a P-value of less than 0.2 were retained for further consideration. Finally, the predictors were assessed by multiple linear regression analysis using stepwise method. Meanwhile, dummy coding variables
were needed to be created to represent the categorical variable (education, occupation, annual income, family support, social support and health status) in the process.
RESULTS Demographic characteristics The ages of 120 participants ranged from 50 to 78 years (M = 61.7 years, SD = 6.42). Seventy-six (63.3%) were men. The majority of participants reported marital status/cohabitating (55.9%), Han ethnicity (61.7%) and individuals’ annual incomes less than $1000 (60%). Seventy-seven (64.2%) respondents were farmers and 25 (20.8%) were retirees. Meanwhile, 16 (13.4%) and 51 (42.86%) of the participants had never or seldom received support from their families and social members, respectively. In this area, the knowledge rate of AIDS was only 10.1% (12/119) before HIV/AIDS infection.
HIV/AIDS-related events There were 77.5% of participants who had been exposed to HIV through heterosexual sex, including commercial heterosexual sex (40.0%), spouse/regular sexual partners’ sex behaviour (30.8%) and one night stand sex (6.7%). The remaining (22.5%) self-identified through non-sexuality (sharing syringe, blood-borne). The median length of time since HIV/AIDS diagnosis was 14 months (range = 0–87 months). Majority (91.7%) had not revealed their HIV/AIDS status to any other people except their family members.
HIV stigma The summated total and subscale stigma score was provided in Table 1. Most common forms of social rejection were disrespect, deliberate avoidance, disposal from
Table 1 Descriptive statistics on measures of scale stigma
External stigma Social rejection Financial insecurity Internal stigma Negative self-worth Perceived interpersonal insecurity Discretionary disclosure Total
© 2014 Wiley Publishing Asia Pty Ltd
Item
Score range
Mean (SD)
Minimum
Maximum
13 9 2 7 4 3 2 20
13–65 9–45 2–10 7–35 4–20 3–15 2–10 20–100
35.21 (6.89) 22.98 (5.59) 8.33 (1.68) 25.90 (3.93) 12.23 (3.08) 8.56 (2.75) 9.02 (1.75) 61.11 (8.99)
18 11 4 14 4 3 2 39
61 44 10 34 19 14 10 95
Stigma among HIV/AIDS patients in China
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Table 2 Linear regression analysis of stigma for people with HIV/AIDS 50 years or older Dependent variable
Independent variable
B
SE
P
External stigma
Adjusted R2 0.457
†
Family support Usually vs. never Social support† Rarely vs. never Sometimes vs. never Usually vs. never Health status† Poor/very poor vs. fair Marital situation
−2.634
1
0.010
−4.02 −5.138 −11.341
1.514 1.39 1.376
0.009 0.000 0.000
4.996 2.434
1.397 0.007
0.001 0.017
Internal stigma
0.199 Social support† Usually vs. never Health status† Poor/very poor vs. fair
−3.545
0.717
0.000
1.895
0.925
0.043
Total stigma
0.470 Social support† Rarely vs. never Sometimes vs. never Usually vs. never Health status† Poor/very poor vs. fair
†
−4.64 −6.29 −15.356
1.869 1.755 1.75
0.015 0.001 0.000
6.239
1.782
0.001
Dummy coding variables were created.
family members and so on. In this sample, only 18.1% suffered from external stigma, whereas 64.3% reported having internalized stigma. Over half of the participants (51.3%) agreed or strongly agreed that they had negative self-worth, 65.8% reported perceived interpersonal insecurity, and 88.8% feared someone telling others their HIV/AIDS status or did not feel they could be open with others about their illness.
Regression analysis for the impact of stigma
Simple linear regression analysis (P < 0.2 were used for statistically significance) indicated that the three variables associated with external stigma subscale, internal stigma, and total stigma were social support (P = 0.000, 0.000, 0.000), health status (P = 0.000, 0.038, 0.000) and route of transmission (P = 0.170, 0.154, 0.093). In addition, marital situation (P = 0.152) and family support (P = 0.032) were related to external stigma. Education (P = 0.023) and length of time since HIV/AIDS diagnosis
(P = 0.048) were associated with internal stigma. Likewise, family support (P = 0.152) and length of time since HIV/AIDS diagnosis (P = 0.123) were connected to the total stigma. All of significant variables in the simple liner regression were included in multiple regression analyses. Table 2 shows the ending. Seldom social support and poor health status were related to high levels of external and internal stigma. However, the more patients were supported by family members, the less external stigma was perceived. Negative marital situation was also related to external stigma.
DISCUSSION This is the first study to investigate the HIV-related stigma among the PLWHA aged 50 years or older in China. We conducted this survey in Luzhai rural county, where older adults represented 18.1% of HIV/AIDS patients in 2004, and increased by 33% and accounted for more than half of the HIV/AIDS cases in 2011 (Liuzhou CDC, unpublished © 2014 Wiley Publishing Asia Pty Ltd
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data). The older adults had low levels of AIDS knowledge and awareness before their infection, with only 10.1% of them correctly answering six of eight items about HIV knowledge scale. Therefore, they did not perceive themselves to be at risk when high-risk behaviours had been done, and in turn they did not recognize how to take measures to protect themselves and their partners. Older PLWHA in south China experienced HIVrelated stigma. Negative self-worth, perceived interpersonal insecurity and discretionary disclosure were the major forms of stigma in this region, whereas fewer respondents experienced social rejection. Our finding showed that only 10.4% participants reported social rejection, which differed from the prior studies in south central China that reported 51% of objects suffered rejection by others. Likewise, a few of the older African American patients in the Foster and Gaskins study stated that they experienced stigma.16 A survey conducted by Nattabi et al. among 476 PLWHA in northern Uganda also showed that internal stigmatization was a more salient dimension than external stigmatization.22 External stigma is not prevalent. A key reason was that older PLWHA did not speak out disease status to their colleagues, neighbours and other people around, so that they were treated as normal. The finding of older adults to be less willing to disclose their HIV status than younger adults is consistent with prior studies.6,18 Another reason might be their children who, after realizing they have HIV/AIDS, would not isolate and marginalize them. Evidence for high level of internal stigma was provided in that a larger proportion of the sample had negative self-worth (51.3%), perceived interpersonal insecurity (65.8%) and discretionary disclosure (88.8%). In a mixed-methods study on stigma in older adults, internalized shame was reported as the major source of stigma.16 A study on HIV/AIDS and cancer-related stigma among 206 Indian supported that older age was also associated with stronger reports of internalized shame.3 Age had a direct association with disclosure worries and health worries, too.23 Base on Emlet’s work, PLWHA aged 50 years and older had shown that the common mechanism for managing the fear of anticipated stigma of HIV was protective silence.17 Internal stigma might result from internal perceptions, beliefs, emotions and values about which a person holds in light of a stigmatizing condition.24 Almost 78% of the participants’ transmission modes in this region were sexual contacts. The older adults blushed for their misconduct and age, so they accepted © 2014 Wiley Publishing Asia Pty Ltd
Y-J Zhang et al.
the negative views from others and thought they deserved to have this disease. The data in the current study supported that social support and physical health situation of older PLWHA were highly associated with internal and external problems, suggesting the importance of social care and an iron constitution for old HIV cases. Social support was a significant predictor of total stigma. Those who reported the more they received support from community voiced the lower levels of stigma. Thanks to the social support from friends, peers, medical staff and other social groups, older PLWHA can seek health care and medical treatment positively. Care from social networks also can buffer against disruptive life events.25 Nevertheless, discretionary disclosure and prejudice of public were the barriers to social support as they prevented patients from seeking social support and other needed resources.26 Our study confirmed a relationship between levels of health status and stigma scores, which is consistent with previous studies that reported that the more severe the illness bought the more obvious the differences from others, and the greater economic hardships, the more isolation and the less self-confidence.20 Combined with old age, leading to worse outcomes, the older adults had higher scores. In turn, stigma had a negative effect on physical health situation. Both external and internal stigma negatively affected health situation because of the way they caused older PLWHA to bear heavy psychological pressure and had more negative sense of self-worth. Thus, a vicious cycle was formed. Family support is generally a stronger predictor of external stigma. In this sample, 60.8% and 76.7% of the participants revealed their illness to spouse and children who were the source of family support. The stigma scores of several items about attitudes and actions of family members in social rejection subscale reflected the fact that major older PLWHA in this region were not rejected, ostracized and isolated by their family members. This was contrary to previous literature.9 Thanks to the medical staff, who carefully shared knowledge on AIDS, the children of PLWHA knew how to protect themselves against infection, rather than distancing from their parents. The data in the current study suggested that marital situation was associated with external stigma. Matrimony might, in a way, be identified as a source of emotional support. The evidence from previous studies suggested that marital situation might have an effect on health and marital disruption, and caused poor mental depression as
Stigma among HIV/AIDS patients in China
well.27,28 Spouses could be best friends who can share sorrow with each other, so they would not have to disclose their HIV status to others, protecting them from external stigma. Several limitations of the current research must be noted. First, the findings cannot be generalized to the experiences of all older PLWHA 50-plus years in rural China because the limited sample size and older adults were recruited from a limited geographical area using purposive sampling method. Second, the cross-sectional study design does not allow us to verify the information. Third, it is unfortunate that psychological depression, an important concept that is associated with heightened HIV stigma, was not included. Research on a sample of more representation of older PLWHA and a better study design with more indicators, including biological status and psychological variables, will address this limitation and predict stigma validity. The study of stigmatization among older PLWHA was conducted in rural south China for the first time. We learned that the stigma caused by HIV/AIDS is more frightening than the disease itself to older people in some degree. So what we can do to reduce patients’ negative emotion and people’s discriminatory attitudes is the most urgent thing right now.
ACKNOWLEDGEMENTS This work was supported by Liuzhou Centre for Disease Control and Prevention, Luzhai County Centre for Disease Control and Prevention, and The People’s Hospital of Luzhai County, Guangxi Zhuang Autonomous Region.
REFERENCES 1 World Health Organization. World Health Assembly opens, mourns death of WHO DirectorGeneral, 2006. Available from URL: http://www.who.int/mediacentre/ news/releases/2006/wha01/en/. Accessed 22 May 2012. 2 Goffman E. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ, USA: Prentice-Hall, 1963. 3 Fife BL, Wright ER. The dimensionality of stigma: A comparison of its impact on the self of persons with HIV/AIDS and cancer. Journal of Health and Social Behavior 2000; 41: 50–67. 4 Stevelink SA, van Brakel WH, Augustine V. Stigma and social participation in Southern India: Differences and commonalities among persons affected by leprosy and persons living with HIV/AIDS. Psychology, Health and Medicine 2011; 16: 695–707.
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5 Raguram R, Raghu TM, Vounatsou P, Weiss MG. Schizophrenia and the cultural epidemiology of stigma in Bangalore, India. The Journal of Nervous and Mental Disease 2004; 192: 734–744. 6 Emlet CA. Experiences of stigma in older adults living with HIV/AIDS: A mixed-methods analysis. AIDS Patient Care and Stds 2007; 21: 740–752. 7 Darrow WW, Montanea JE, Gladwin H. AIDS-related stigma among Black and Hispanic young adults. AIDS and Behavior 2009; 13: 1178–1188. 8 Nyamathi A, Ekstrand M, Zolt-Gilburne J et al. Correlates of stigma among rural indian women living with HIV/AIDS. AIDS and Behavior 2013; 17: 329–339. 9 Ma W, Detels R, Feng Y et al. Acceptance of and barriers to voluntary HIV counselling and testing among adults in Guizhou province, China. AIDS (London, England) 2007; 21: S129–S135. 10 Ford K, Wirawan DN, Sumantera GM, Sawitri AA, Stahre M. Voluntary HIV testing, disclosure, and stigma among injection drug users in Bali, Indonesia. AIDS Education and Prevention 2004; 16: 487–498. 11 Wolfe WR, Weiser SD, Leiter K et al. The impact of universal access to antiretroviral therapy on HIV stigma in Botswana. American Journal of Public Health 2008; 98: 1865– 1871. 12 Nyblade L, Singh S, Ashburn K, Brady L, Olenja J. ‘Once I begin to participate, people will run away from me’: Understanding stigma as a barrier to HIV vaccine research participation in Kenya. Vaccine 2011; 29: 8924–8928. 13 Li X, Huang L, Wang H, Fennie KP, He G, Williams AB. Stigma mediates the relationship between self-efficacy, medication adherence, and quality of life among people living with HIV/AIDS in China. AIDS Patient Care and Stds 2011; 25: 665–671. 14 Herek GM, Capitanio JP, Widaman KF. Stigma, social risk, and health policy: Public attitudes toward HIV surveillance policies and the social construction of illness. Health Psychology 2003; 22: 533–540. 15 Ministry of Health of the People’s Republic of China, United Nations Programme on HIV/AIDS, World Health Organization. Estimates for the HIV/AIDS epidemic in China, 2011. Available from URL: http://www.chinaaids .cn/fzdt/zxdd/201201/t20120129_1745902.htm. Accessed 29 January 2012. 16 Foster PP, Gaskins SW. Older African Americans’ management of HIV/AIDS stigma. AIDS Care 2009; 21: 1306–1312. 17 Emlet CA. ‘You’re awfully old to have this disease’: Experiences of stigma and ageism in adults 50 years and older living with HIV/AIDS. The Gerontologist 2006; 46: 781–790. 18 Nokes KM, Holzemer WL, Corless IB et al. Health-related quality of life in persons younger and older than 50 who are
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living with HIV/AIDS. Research on Aging 2000; 22: 290– 310. Heckman TG, Heckman BD, Kochman A, Sikkema KJ, Suhr J, Goodkin K. Psychological symptoms among persons 50 years of age and older living with HIV disease. Aging and Mental Health 2002; 6: 121–128. Li X, Wang H, Williams A, He G. Stigma reported by people living with HIV in south central China. The Journal of the Association of Nurses in AIDS Care 2009; 20: 22–30. Phillips KD. Conceptual development of an instrument to measure the internalized stigma of AIDS based on the Roy adaptation model. Nursing Science Quarterly 2011; 24: 306– 310. Nattabi B, Li J, Thompson SC, Orach CG, Earnest J. Factors associated with perceived stigma among people living with HIV/AIDS in post-conflict northern Uganda. AIDS Education and Prevention 2011; 23: 193–205. Nokes KM, Coleman CL, Hamilton MJ et al. Age-related effects on symptom status and health-related quality of life
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in persons with HIV/AIDS. Applied Nursing Research 2011; 24: 10–16. Phillips KD, Moneyham L, Tavakoli A. Development of an instrument to measure internalized stigma in those with HIV/AIDS. Issues in Mental Health Nursing 2011; 32: 359– 366. Kang E, Rapkin BD, Remien RH et al. Multiple dimensions of HIV stigma and psychological distress among Asians and Pacific Islanders living with HIV illness. AIDS and Behavior 2005; 9: 145–154. Serovich JM. A test of two HIV disclosure theories. AIDS Education and Prevention 2001; 13: 355–364. Waldron I, Weiss CC, Hughes ME. Marital status effects on health: Are there differences between never married women and divorced and separated women? Social Science and Medicine 1997; 45: 1387–1397. Aseltine RH Jr, Kessler RC. Marital disruption and depression in a community sample. Journal of Health and Social Behavior 1993; 34: 237–251.
International Journal of Nursing Practice 2014; ••: ••–••
RESEARCH PAPER
HIV/AIDS stigma among older PLWHA in south rural China Yu-Jing Zhang MD* Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Yin-Guang Fan MD* Lecturer, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Lecturer, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Se-Ying Dai MD Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Bao-Zhu Li MD Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Wang-Dong Xu MD Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Lin-Feng Hu MM Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Juan Liu MD Student, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Student, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Correspondence: Dong-Qing Ye, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, 81 Meishan Road, Hefei 230032, Anhui, China. Email: [email protected] *Yu-Jing Zhang and Yin-Guang Fan contributed equally to this work and should be considered co-first authors. Conflict of interest: The authors have no conflict of interest to disclose. doi:10.1111/ijn.12254
© 2014 Wiley Publishing Asia Pty Ltd
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Hong Su PhD Professor, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China
Dong-Qing Ye PhD Professor, Department of Epidemiology and Biostatistics, School of Public Health, Anhui Medical University, Hefei, Anhui, China Professor, Anhui Provincial Laboratory of Population Health & Major Disease Screening and Diagnosis, Anhui Medical University, Hefei, Anhui, China
Accepted for publication June 2013 Zhang Y-J, Fan Y-G, Dai S-Y, Li B-Z, Xu W-D, Hu L-F, Liu J, Su H, Ye D-Q. International Journal of Nursing Practice 2014; ••: ••–•• HIV/AIDS stigma among older PLWHA in south rural China Stigma is a common problem among people living with HIV/AIDS (PLWHA). However, little is known about HIV/ AIDS-related stigma in older PLWHA over the age of 50. This study described the stigma of HIV/AIDS and its factors based on 120 PLWHA aged 50 or older in an area of high HIV prevalence in south rural China. Each participant completed a face-to-face questionnaire that collected information on demographic characteristics, AIDS-related events and experience of HIV/AIDS-related stigma. Finally, only 18.1% reported experiencing external stigma compared with 64.3% feeling internal stigma. Regression analysis indicated that social support and health status were the two variables that were significantly predictive of both external and internal stigma. Whatever, the more support were received from family members by PLWHA, the less external stigma was perceived. Negative marital situation was also related to external stigma. Reducing HIV/AIDS stigma requires a supportive environment, positive attitude and correct knowledge of AIDS. Health workers and policy makers should take practical approaches to reduce prejudice. Key words: HIV/AIDS, nursing, old patient, south rural China, stigma.
INTRODUCTION At the 59th World Health Assembly in Geneva in 2006, Johnson Mwakazi, a young HIV/AIDS activist from Kenya, spoke of his experience through a poem, ‘Underneath the Veil’: ‘This one thing has destroyed families. This one thing has destroyed marriages. This one thing has killed men. It is not HIV. It is not AIDS . . . It is stigmatization’.1 Goffman, who pioneered the concept of stigma as ‘an attribute that is deeply discrediting’, pointed out that stigma generated from three sources: abominations of the body, tribal identities and blemishes of character.2 With in-depth research on illnesses, stigma has been recognized and reflected in various types of diseases including cancer, leprosy, schizophrenia and HIV/AIDS.3–6 Nevertheless, comparative studies reported that higher levels of stigma exist with HIV than with either cancer or leprosy.3,4 Stigma remains a significant contributor to the burden of HIV/AIDS disease. AIDS-related stigma can inhibit PLWHA from HIV counselling and testing, disclosing results to others and keeping medical regimens.7–11 Current study also reported stigma and discrimination as a barrier to HIV prevention and vaccine research partici© 2014 Wiley Publishing Asia Pty Ltd
pation.12 AIDS-related stigma can influence patients’ quality of life and attitudes towards health policies.13,14 Moreover, it might cause depression, life-stressor burden and so on. Despite of this, stigmatization as a widespread phenomenon exists in the world regardless of the ethnicity, gender or age. In recent years, the HIV/AIDS number on old adults over 50-year age was soaring in China. For the group aged between 50 and 60 years, the proportion has increased 7.5 times in the last 11 years, whereas the constitute ratio was 1.6% in 2000 and 13.6% in 2011. The increases were more prominent for older PLWHA with the age of 65 years and over; the proportion had increased 20-fold from 0.34% to 7.0% in the same period.15 Both new infections and highly active antiretroviral therapy (ART) were contributing to this rapid growth.6,16 Currently, both mixed-methods and qualitative researches reflected that stigma was common among PLWHA aged 50 or older.6,16,17 Nokes et al. reported that older adults were more likely to hide their HIV status compared with younger adults.18 A research on 83 HIV/ AIDS cases 50-plus years of age revealed that stigma were
Stigma among HIV/AIDS patients in China
associated with psychological symptoms.19 Evidence was also provided that older PLWHA had to handle the diploid stigma of having the disease and being old. All of this made the older PLWHA more vulnerable to discrimination than the younger. Most studies regarding HIVrelated stigma targeted mostly non-infected people such as students, nurses and urban market workers in Chinese population, whereas a few papers were regarding on PLWHA living in the shadow of stigma. A research conducted among 322 PLWHA in south central China reported that 51% of the participants experienced social rejection and 70% felt self-devaluated.20 However, limited literatures focused on the vulnerable 50-plus old HIV/AIDS subgroups. The HIV-related stigma among the PLWHA aged 50 years or older remain understudied in China. To enhance understanding of stigma and various factors contributing to stigmatization among older PLWHA in China, we conducted this cross-sectional survey among 120 rural inhabitants in Luzhai rural county, south rural China; site selection was made because this county was one of the areas with the highest prevalence of HIV infection in Guangxi Province and confronted with serious burden of HIV/AIDS in south China.
METHOD Sample and setting From September to December 2011, a cross-sectional study was conducted among the confirmed diagnoses of HIV/AIDS people 50 years or older in Luzhai rural county, Guangxi Zhuang Autonomous Region. In the study, participants were recruited if they were adults registered in the database of the local Center for Diseases Control and Prevention (CDC), age 50 or older, and were participating in the national free ART programme regularly in the people’s hospital of Luzhai county. Due to the limited potential PLWHA over 50 years old and absent presence of some people, purposive sampling techniques were used to obtain the target people. One hundred twenty-six older PLWHA were involved in this programme. However, six people were excluded because they were under 50 years old. Finally, 120 eligible people were enrolled.
Procedure Participants were recruited from the People’s Hospital of Luzhai County by the workers of CDC, nurses and research team. Researchers were stationed at the hospital
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treatment site when the patients were notified by nurses to get the medicine. If someone was eligible, the investigator would ask for his consent to conduct a face-to-face interview at a separate room for participants’ confidentiality after introducing the purpose of the survey. The visit approximately lasted 20–25 min. After the interview, each participant received 20 Renminbi ($2.65 USD).
Measurement Demographic and background information Participants were asked to report on individual information including age, gender, race, marital status, education, occupation, yearly individual income, religion, health status, and support by family and social members. The health status was a self-feeling, with answers from ‘very well’ to ‘very poor’. Meanwhile, two items were used to weigh the support and care from family and social members (i.e. health-care workers, neighbours, society organizations, etc.).
AIDS-related events Participants were asked the most likely route of transmission (sexuality, sharing syringe or blood-borne) for themselves, the length of time after diagnosis, their disclosure status and the person who they were willing to tell (spouse, parents, siblings, children, friends or colleagues).
Stigma HIV/AIDS-related stigma was measured using a 24-item instrument by Fife and Wright.3 The development of the scales was described in Li’s team by which the questionnaire was translated into Chinese and used among 322 PLWHA in south central China, with a total Cronbach’s alpha of 0.86.20 We applied for Li’s Chinese scale for this study. So perception of stigma was indexed using the 20-item with five scales: social rejection, financial insecurity, negative self-worth, perceived interpersonal insecurity and discretionary disclosure. All items were designed to be assessed using a 5-point Likert-type response scale, where 1 = completely disagree and 5 = completely agree. Total scores ranged from 20 to 100, with the highest score indicating the strongest sense of feeling stigmatized. The Cronbach’s alpha was 0.4–0.9 for subscales in Li’s.20
External stigma Social rejection and financial insecurity belonging to external stigma posit stigmatizing behaviours and ostracizing © 2014 Wiley Publishing Asia Pty Ltd
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attitude directed by others. Social rejection (nine items) assesses the attitude towards HIV/AIDS of other people and the acts shown by family members. Financial insecurity (three items) measures the negative consequences brought about by the economic burden related to disease.
Internal stigma Internal stigma refers to the psychic process of accepting negative behaviours and stereotypes, and incorporating them into the self-concept which contains negative selfworth, perceived interpersonal insecurity and discretionary disclosure.21 Four-item scale measures self-worth levels about social interaction, change of work ability, responsibility for this disease and so on. Perceived interpersonal insecurity (two items) and discretionary disclosure (two items) assess patients’ defensiveness, how much they care about others’ opinions and disclosure avoidance, respectively.
Data analysis Descriptive statistics were used to delineate stigma and background characteristics in this sample. Then two steps of regression analysis were conducted to assess the contribution of demographic, background information and HIV/AIDS-related events to HIV/AIDS stigma (external scores, internal scores and total scores), using SPSS 17.0 (SPSS Inc., Chicago, IL, USA). First, simple linear regression was used to examine each of independent variables in predicting stigma. All variables that were statistically significant with a P-value of less than 0.2 were retained for further consideration. Finally, the predictors were assessed by multiple linear regression analysis using stepwise method. Meanwhile, dummy coding variables
were needed to be created to represent the categorical variable (education, occupation, annual income, family support, social support and health status) in the process.
RESULTS Demographic characteristics The ages of 120 participants ranged from 50 to 78 years (M = 61.7 years, SD = 6.42). Seventy-six (63.3%) were men. The majority of participants reported marital status/cohabitating (55.9%), Han ethnicity (61.7%) and individuals’ annual incomes less than $1000 (60%). Seventy-seven (64.2%) respondents were farmers and 25 (20.8%) were retirees. Meanwhile, 16 (13.4%) and 51 (42.86%) of the participants had never or seldom received support from their families and social members, respectively. In this area, the knowledge rate of AIDS was only 10.1% (12/119) before HIV/AIDS infection.
HIV/AIDS-related events There were 77.5% of participants who had been exposed to HIV through heterosexual sex, including commercial heterosexual sex (40.0%), spouse/regular sexual partners’ sex behaviour (30.8%) and one night stand sex (6.7%). The remaining (22.5%) self-identified through non-sexuality (sharing syringe, blood-borne). The median length of time since HIV/AIDS diagnosis was 14 months (range = 0–87 months). Majority (91.7%) had not revealed their HIV/AIDS status to any other people except their family members.
HIV stigma The summated total and subscale stigma score was provided in Table 1. Most common forms of social rejection were disrespect, deliberate avoidance, disposal from
Table 1 Descriptive statistics on measures of scale stigma
External stigma Social rejection Financial insecurity Internal stigma Negative self-worth Perceived interpersonal insecurity Discretionary disclosure Total
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Item
Score range
Mean (SD)
Minimum
Maximum
13 9 2 7 4 3 2 20
13–65 9–45 2–10 7–35 4–20 3–15 2–10 20–100
35.21 (6.89) 22.98 (5.59) 8.33 (1.68) 25.90 (3.93) 12.23 (3.08) 8.56 (2.75) 9.02 (1.75) 61.11 (8.99)
18 11 4 14 4 3 2 39
61 44 10 34 19 14 10 95
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Table 2 Linear regression analysis of stigma for people with HIV/AIDS 50 years or older Dependent variable
Independent variable
B
SE
P
External stigma
Adjusted R2 0.457
†
Family support Usually vs. never Social support† Rarely vs. never Sometimes vs. never Usually vs. never Health status† Poor/very poor vs. fair Marital situation
−2.634
1
0.010
−4.02 −5.138 −11.341
1.514 1.39 1.376
0.009 0.000 0.000
4.996 2.434
1.397 0.007
0.001 0.017
Internal stigma
0.199 Social support† Usually vs. never Health status† Poor/very poor vs. fair
−3.545
0.717
0.000
1.895
0.925
0.043
Total stigma
0.470 Social support† Rarely vs. never Sometimes vs. never Usually vs. never Health status† Poor/very poor vs. fair
†
−4.64 −6.29 −15.356
1.869 1.755 1.75
0.015 0.001 0.000
6.239
1.782
0.001
Dummy coding variables were created.
family members and so on. In this sample, only 18.1% suffered from external stigma, whereas 64.3% reported having internalized stigma. Over half of the participants (51.3%) agreed or strongly agreed that they had negative self-worth, 65.8% reported perceived interpersonal insecurity, and 88.8% feared someone telling others their HIV/AIDS status or did not feel they could be open with others about their illness.
Regression analysis for the impact of stigma
Simple linear regression analysis (P < 0.2 were used for statistically significance) indicated that the three variables associated with external stigma subscale, internal stigma, and total stigma were social support (P = 0.000, 0.000, 0.000), health status (P = 0.000, 0.038, 0.000) and route of transmission (P = 0.170, 0.154, 0.093). In addition, marital situation (P = 0.152) and family support (P = 0.032) were related to external stigma. Education (P = 0.023) and length of time since HIV/AIDS diagnosis
(P = 0.048) were associated with internal stigma. Likewise, family support (P = 0.152) and length of time since HIV/AIDS diagnosis (P = 0.123) were connected to the total stigma. All of significant variables in the simple liner regression were included in multiple regression analyses. Table 2 shows the ending. Seldom social support and poor health status were related to high levels of external and internal stigma. However, the more patients were supported by family members, the less external stigma was perceived. Negative marital situation was also related to external stigma.
DISCUSSION This is the first study to investigate the HIV-related stigma among the PLWHA aged 50 years or older in China. We conducted this survey in Luzhai rural county, where older adults represented 18.1% of HIV/AIDS patients in 2004, and increased by 33% and accounted for more than half of the HIV/AIDS cases in 2011 (Liuzhou CDC, unpublished © 2014 Wiley Publishing Asia Pty Ltd
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data). The older adults had low levels of AIDS knowledge and awareness before their infection, with only 10.1% of them correctly answering six of eight items about HIV knowledge scale. Therefore, they did not perceive themselves to be at risk when high-risk behaviours had been done, and in turn they did not recognize how to take measures to protect themselves and their partners. Older PLWHA in south China experienced HIVrelated stigma. Negative self-worth, perceived interpersonal insecurity and discretionary disclosure were the major forms of stigma in this region, whereas fewer respondents experienced social rejection. Our finding showed that only 10.4% participants reported social rejection, which differed from the prior studies in south central China that reported 51% of objects suffered rejection by others. Likewise, a few of the older African American patients in the Foster and Gaskins study stated that they experienced stigma.16 A survey conducted by Nattabi et al. among 476 PLWHA in northern Uganda also showed that internal stigmatization was a more salient dimension than external stigmatization.22 External stigma is not prevalent. A key reason was that older PLWHA did not speak out disease status to their colleagues, neighbours and other people around, so that they were treated as normal. The finding of older adults to be less willing to disclose their HIV status than younger adults is consistent with prior studies.6,18 Another reason might be their children who, after realizing they have HIV/AIDS, would not isolate and marginalize them. Evidence for high level of internal stigma was provided in that a larger proportion of the sample had negative self-worth (51.3%), perceived interpersonal insecurity (65.8%) and discretionary disclosure (88.8%). In a mixed-methods study on stigma in older adults, internalized shame was reported as the major source of stigma.16 A study on HIV/AIDS and cancer-related stigma among 206 Indian supported that older age was also associated with stronger reports of internalized shame.3 Age had a direct association with disclosure worries and health worries, too.23 Base on Emlet’s work, PLWHA aged 50 years and older had shown that the common mechanism for managing the fear of anticipated stigma of HIV was protective silence.17 Internal stigma might result from internal perceptions, beliefs, emotions and values about which a person holds in light of a stigmatizing condition.24 Almost 78% of the participants’ transmission modes in this region were sexual contacts. The older adults blushed for their misconduct and age, so they accepted © 2014 Wiley Publishing Asia Pty Ltd
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the negative views from others and thought they deserved to have this disease. The data in the current study supported that social support and physical health situation of older PLWHA were highly associated with internal and external problems, suggesting the importance of social care and an iron constitution for old HIV cases. Social support was a significant predictor of total stigma. Those who reported the more they received support from community voiced the lower levels of stigma. Thanks to the social support from friends, peers, medical staff and other social groups, older PLWHA can seek health care and medical treatment positively. Care from social networks also can buffer against disruptive life events.25 Nevertheless, discretionary disclosure and prejudice of public were the barriers to social support as they prevented patients from seeking social support and other needed resources.26 Our study confirmed a relationship between levels of health status and stigma scores, which is consistent with previous studies that reported that the more severe the illness bought the more obvious the differences from others, and the greater economic hardships, the more isolation and the less self-confidence.20 Combined with old age, leading to worse outcomes, the older adults had higher scores. In turn, stigma had a negative effect on physical health situation. Both external and internal stigma negatively affected health situation because of the way they caused older PLWHA to bear heavy psychological pressure and had more negative sense of self-worth. Thus, a vicious cycle was formed. Family support is generally a stronger predictor of external stigma. In this sample, 60.8% and 76.7% of the participants revealed their illness to spouse and children who were the source of family support. The stigma scores of several items about attitudes and actions of family members in social rejection subscale reflected the fact that major older PLWHA in this region were not rejected, ostracized and isolated by their family members. This was contrary to previous literature.9 Thanks to the medical staff, who carefully shared knowledge on AIDS, the children of PLWHA knew how to protect themselves against infection, rather than distancing from their parents. The data in the current study suggested that marital situation was associated with external stigma. Matrimony might, in a way, be identified as a source of emotional support. The evidence from previous studies suggested that marital situation might have an effect on health and marital disruption, and caused poor mental depression as
Stigma among HIV/AIDS patients in China
well.27,28 Spouses could be best friends who can share sorrow with each other, so they would not have to disclose their HIV status to others, protecting them from external stigma. Several limitations of the current research must be noted. First, the findings cannot be generalized to the experiences of all older PLWHA 50-plus years in rural China because the limited sample size and older adults were recruited from a limited geographical area using purposive sampling method. Second, the cross-sectional study design does not allow us to verify the information. Third, it is unfortunate that psychological depression, an important concept that is associated with heightened HIV stigma, was not included. Research on a sample of more representation of older PLWHA and a better study design with more indicators, including biological status and psychological variables, will address this limitation and predict stigma validity. The study of stigmatization among older PLWHA was conducted in rural south China for the first time. We learned that the stigma caused by HIV/AIDS is more frightening than the disease itself to older people in some degree. So what we can do to reduce patients’ negative emotion and people’s discriminatory attitudes is the most urgent thing right now.
ACKNOWLEDGEMENTS This work was supported by Liuzhou Centre for Disease Control and Prevention, Luzhai County Centre for Disease Control and Prevention, and The People’s Hospital of Luzhai County, Guangxi Zhuang Autonomous Region.
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