| Objectives1. To describe the HIV/AIDS-related stigma and discrimination among people living with HIV/AIDS (PLWHA) using a translated foreign stigma scale, explore its related factors, and evaluate the scale adaption among Chinese PLWHA.2. To explore the social process and personal perception of stigma and discrimination experienced by HIV positive injection drug users (IDUs), disentangle drug-related and HIV/AIDS-related stigma, and develop a culturally adaptive conceptual framework for HIV/AIDS-related stigma and discrimination.3. To develop a culturally adaptive HIV/AIDS stigma scale based on the cross-sectional study and the qualitative results, and evaluate its psychometric parameters.Methods1. A cross-sectional and multi-site study design was used to investigate the HIV/AIDS-related stigma and discrimination. Three Provinces were randomly selected from six central China Provinces. A total of 11 AIDS treatment sites were accessed by cluster sampling. An English stigma scale developed by Fife and Wright was translated and back-translated and was administered as the main measurement. It has 5 subscales and 20 items, with a total score from 20-80 points, the higher the score, the severer the stigma.2. A grounded theory study was designed in the qualitative study. A semi-structured interview was carried out to explore how the drug addiction and HIV infection affected their lives, how they evaluated themselves, and how they interpreted their stigma experiences among HIV positive IDUs in Hengyang city, Hunan Province. Interviewees were accessed by purpose sampling and theoretical sampling. In-depth interview, focus group and field notes were used to collect qualitative data. Data was analyzed during the data collecting process. Twenty-two (20 were intact interviews) persons were interviewed until the categories and codes were saturated. NVivo8.0 qualitative data management and analysis software was used to assist the data analyzed process.3. Based on the first two steps, the operational definition of HIV/AIDS-related stigma and discrimination was developed. And then the original item pool with 90 items was formulated through in-depth interview, focus group and literature references. Through two rounds of expert evaluation (brain storming) and HIV patients'consultation, we refined the original 90 items to 45 items scale, by reducing some unrelated and repeated items. The scale was tested among 307 PLWHA. The exploratory factor analysis (EFA) was used to psychometrically evaluate its construct validity, by the main methods of principal components analysis and direct oblimin. Criterion-related validity was assessed by using Social Support Rating Scale, Self Esteem Scale, and family APGAR index. Reliability was assessed by Cronbach a, split reliability and test-retest reliability.Results1. The cross-sectional study results(1) The content validity index (CVI) of the translated stigma scale was 0.87. The test-retest reliability after 2 weeks was 0.92. The Cronbachαof the total scale was 0.86, and the five subscales'were 0.93,0.71,0.39, 0.92 and 0.94. The a value of the third subscale was low because of the only two items and the culture differences.(2) The total score of the stigma scale was 55.4 (24-79). Over half (n=163,50.7%) reported experiencing stigma,77.7% (n=250) reported feelings of negative self-worth,74.5% (n=240) reported interpersonal insecurity,84.3% (n=271) experienced financial problems, and 58.1% (n=187) worried about disclosure of their HIV status.(3) High levels of self-perceived stigma were associated with subjects who were injection drug users (p=0.001), who were less satisfied with responses from family members (p=0.001), who had disclosed their HIV status widely (p= 0.001), and who reported poorer health status (p= 0.001).2. Grounded theory study results (1) The core category of the quality study was "struggling back to normal". The related key concepts were family responsibility, dual stigma and discrimination, and secret/disclosure. "Normal" was a condition of free from using drugs or HIV infected. It was a symbol by which HIV positive IDUs excluded themselves from society. They perceived themselves as "abnormal person", and it was hard for them to live normally. If HIV positive IDUs refrained from drugs, they could get family support, and also kept the secret of HIV infection, they might pretend to live normally. Otherwise, if they went on using drugs, they would lose family support, and also it was hard to keep the secret of using drugs and HIV infection, this might lead to negative coping, and then it was difficult to get back to normal life.(2) Dual stigma and discrimination came from drug abuse behavior and HIV infection. The diagnosis of HIV positive exacerbated the internalized stigma and self-discrimination. They perceived higher stress coming from HIV infection rather than drug abuse behavior.(3) "Family responsibility" enabled family members to take care of the HIV positive IDUs if they kicked off drugs; but if they went on using drugs, family members would give up the role of caregivers, because of the huge drug expenditure and the fact of HIV infection. On the other hand, HIV positive IDUs could adopt positive reaction to try to get back to normal life in order to fulfill their family responsibility. (4) HIV positive individuals initially kept the disease a secret to avoid discrimination according to what they had seen or heard other peers'stigma experiences. This self-protection behavior led to loss of health services and social security opportunities, and it became a huge psychological pressure for them.3. Stigma scale development and evaluation results(1) Item analysis:the value of Critical Ratio (CR) of item 27 and 42 were 1.73 and 1.80, there were no statistical significances (P>0.05), so we deleted both two items in the last version of the scale.(2) Factor analysis:deleted items which loading was lower than 0.4, such as item 28,43 and 24; deleted items if the factor had less than 3 items, such as item 7 and 32; deleted item 23,25,29 and 40 because they loaded on more than two factors. The final scale had 34 items, included 5 factors, namely disclosure concerns (6 items), internalized stigma (10 items), public rejection (10 items), family stigma (6 items) and health care providers'discrimination (2 items). The item responses fell into 5 categories from strongly disagree to strongly agree, with a point from 1 to 5, so the total score was from 34-170, the higher the score, the severer the stigma.(3) Reliability test:the Cronbach a of the whole scale was 0.90, and the five subscales were 0.88,0.88,0.89,0.89 and 0.91. The split reliability of the whole scale and subscales were 0.95,0.90,0.94,0.91 and 0.91 respectively. The test-retest reliability of the whole scale and subscales were 0.88,0.82,078,0.88,0.90 and 0.93 respectively.(4) Validity test:content validity evaluated using Content Validity Index (CVI) was 0.88.Criterion-related validity:the subscale of public rejection was negatively associated with objective support, subjective support and the total social support scores (r=0.29-0.33, P＜0.01); the subscale of family stigma was negatively associated with family APGAR scores (r=0.47, P＜0.01); the subscale of internalized stigma was also negatively associated with self esteem (r=0.65, P<0.01).Construct validity:EFA developed 5 factors, which was very close to the theoretical construct, and the 5 factors explained for 57.98% variances.(5) The total score of the developed stigma scale among the subject was (103.42±16.85), with a range from 45 to 150, the subscales were respectively (23.29±4.78), (18.85±4.14), (23.04±7.10), (32.67±8.34) and (5.87±1.86).76.6% PLWHA worried about their disease disclosure, but only 25.8% experienced stigma and discrimination in reality. More than half patients (68.4%) reported there was no discrimination from family members, and 57.4% showed internalized stigma. Around half of PLWHA(53.6%) did not know about the attitude of health care providers in non-AIDS treatment sites. Conclusion1. The translated HIV/AIDS-related stigma scale is not culturally adaptive to Chinese HIV/AIDS population.2. The level of HIV/AIDS-related stigma and discrimination experienced by Chinese PLWHA is higher than that in other countries. IDUs experience higher stigma than people infected by other routes.3. Transmission routes, family support, HIV disclosure status and perceived health status are associated with HIV/AIDS-related stigma and discrimination.4. HIV positive IDUs are struggling back to normal. Family support and secret are the positive factors for them to come back to normal; Lack of family support and disclosure are the impeding factors for them to come back to normal.5. The dual stigma and discrimination for HIV positive IDUs is not simple addition of the two kinds of stigma; the degree of dual stigma is different for different sources.6. There is almost no family rejection towards HIV/AIDS because of the family responsibility. Drug abuse is a key reason for family discrimination. A certain degree of family responsibility is the motivation of HIV positive IDUs to come back to normal.7. The developed Chinese HIV/AIDS-related stigma and discrimination scale has good reliability and validity, and culturally adaptive to Chinese population.8. The level of HIV/AIDS-related stigma and discrimination among Chinese PLWHA during past three months is moderate. Perceived stigma is much higher than enacted stigma; stigma from family members is low.
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