HIV stigma, disclosure and psychosocial distress ... - SAGE Journals

ORIGINAL RESEARCH ARTICLE

HIV stigma, disclosure and psychosocial distress among Thai youth living with HIV C Rongkavilit P Phanuphak

MD*,

K Wright

DO*,

X Chen

PhD*,

S Naar-King

PhD*,

T Chuenyam

RN†

and

MD PhD†

*Carman and Ann Adams Department of Pediatrics, Wayne State University School of Medicine, Children’s Hospital of Michigan, Detroit, MI, USA; † HIV Netherlands-Australia-Thailand Research Collaboration (HIV-NAT) and Thai Red Cross AIDS Research Center, Bangkok, Thailand

Summary: The objective of the present paper is to assess stigma and to create an abbreviated 12-item Stigma Scale based on the 40-item Berger’s Stigma Scale for Thai youth living with HIV (TYLH). TYLH aged 16– 25 years answered the 40-item Stigma Scale and the questionnaires on mental health, social support, quality of life and alcohol/substance use. Sixty-two (88.6%) of 70 TYLH reported at least one person knowing their serostatus. Men having sex with men were more likely to disclose the diagnosis to friends (43.9% versus 6.1%, P , 0.01) and less likely to disclose to families (47.6% versus 91.8%, P , 0.01). Women were more likely to disclose to families (90.2% versus 62.1%, P , 0.01) and less likely to disclose to friends (7.3% versus 31%, P , 0.05). The 12-item Stigma Scale was reliable (Cronbach’s a, 0.75) and highly correlated with the 40-item scale (r ¼ 0.846, P , 0.01). Half of TYLH had mental health problems. The 12-item Stigma Scale score was significantly associated with mental health problems (b ¼ 0.21, P , 0.05). Public attitudes towards HIV were associated with poorer quality of life (b ¼ 21.41, P , 0.01) and mental health problems (b ¼ 1.18, P , 0.01). In conclusion, the12-item Stigma Scale was reliable for TYLH. Increasing public understanding and education could reduce stigma and improve mental health and quality of life in TYLH. Keywords: youth, Thailand, stigma, disclosure, HIV

INTRODUCTION Stigma is a discrediting social label that changes the way individuals look at themselves and disqualifies them from full social acceptance.1 The stigmatized person tends to internalize the negative values placed on them by society, and may end up with shame, isolation and self-hatred.2 HIV infection is associated with socially undesirable behaviours, such as illicit drug use, multiple sex partners and homosexuality,3,4 and the disease is prevalent among marginalized populations with lower socioeconomic status, such as commercial sex workers or minority poor populations especially disenfranchised women or women of colour.3,5 – 7 These factors compound social stigmatization and internalized shame.2,3,8 Stigmatization is worsened when HIV transmission is seen as the responsibility of the individual and the infected individual is perceived as a threat to the community health.4,9 – 11 As a result, stigmatization often leads to lowered self-esteem, depression, dysfunctional problem solving and lack of social support.12 – 17 It is one of the barriers for an HIV-infected person to disclose his or her HIV status to family members or partners, to practice safer sex, to receive medical care and to be compliant with medical appointments and medications.7,15,18 – 20 This ultimately thwarts efforts to prevent further HIV transmission. Correspondence to: C Rongkavilit, Division of Pediatric Infectious Diseases, Children’s Hospital of Michigan, 3901 Beaubien Blvd, Detroit, MI 48201, USA Email: [email protected]

Even in countries such as Thailand, which has a wellestablished epidemic and is widely cited as a model response,21 considerable stigmatization and discrimination by communities or family members against people living with HIV still occur.16,22,23 Fear of physical appearance of AIDS and fear of infection were commonly expressed toward Thais living with HIV.24 Those with inaccurate beliefs about HIV transmission reacted with fear and irritation towards HIV-positive persons, and they also showed more stigmatized reactions towards commercial sex workers and men who have sex with men (MSM), the two marginalized groups associated with HIV and multiple sexual partners in Thailand.11 Furthermore, there was a strong interaction between HIV stigma and drug abuse-related stigma in Thai setting.25 This may reflect the severe social opposition attached to the co-stigma of drug abuse and how HIV/AIDS in Thailand had come to be stigmatized because of the symbolic negative meaning derived from drug abuse, which was intensified by the recent Thai government’s ‘War on Drugs’ campaign.26 The prevalence of HIV infection in Thailand is estimated to be 0.8–2.8%.27 Approximately 10% were between 15 and 25 years of age.28 The highest percentage of people with AIDS in Thailand are aged 25–29, indicating that the time of greatest HIV acquisition occurs in adolescence and young adulthood.29 Therefore, it is important to evaluate stigma in Thai youth living with HIV (TYLH) because they tend to place their fragile self-esteem in the eyes and judgement of others. This external locus of control compounds their fear of HIV disclosure and adherence to medications, clinical visits and healthy behaviours. Since stigma is a reflection of the culture and social environment in

International Journal of STD & AIDS 2010; 21: 126 –132. DOI: 10.1258/ijsa.2009.008488

Rongkavilit et al. Stigma in HIV-positive Thai youth

127

................................................................................................................................................

which the youth live, one might expect stigma to be defined or experienced differently by different cultures. A critical assessment of stigma within a cultural context will allow us to better understand how stigma is defined so that culturally relevant interventions can be appropriately implemented for youth. The present study was conducted to examine stigma among TYLH in Bangkok. To our knowledge, no published studies have specifically investigated stigma among TYLH. In addition, we aimed to create an abbreviated stigma scale for Thai youth based on the Berger’s 40-item HIV Stigma Scale.30 The Berger’s scale contains four subscales including personalized stigma, disclosure, negative self image and public attitudes. In our prior study,31 we modified the Berger’s 40-item scale to a 10-item scale to make it less time consuming for the US youth. Our abbreviated 10-item scale includes at least two of the highest loading variables to each subscale. The scale showed internal consistency and validity among predominantly African-American youth aged 16 –25 years living with HIV. We also assessed whether stigma is correlated differently with specific psychosocial variables including mental health, social support, quality of life and alcohol/drug use in TYLH.

METHOD Population TYLH aged 16 –25 years were enrolled in the study in 2004.32 The participants were a convenient sample of patients who were being followed at an HIV clinic at King Chulalongkorn Hospital and two clinics at the Thai Red Cross AIDS Research Center in Bangkok. Youth were informed by their care providers about the study and those who were interested in participation were referred to the study team. Eligibility criteria were kept at minimum and included HIV-infected status, ages 16–25 years, and being able to complete questionnaires within one visit. The study protocol was approved by the Human Investigation Committee of Wayne State University in the US and by the Institutional Review Board of the Faculty of Medicine at Chulalongkorn University in Thailand. Informed consent was obtained from all participants, and a waiver of parental consent was permitted for participants aged 16–17 years.

Procedures Assessments were completed immediately after consent or at a mutually agreed upon time. Youth were assured that their responses would be kept confidential from their providers. Unless the youth insisted on completing the measures without assistance, the interviewer read questions to participants and then recorded their responses on paper.

Measures All participants completed a one-time administration of a demographic form and the measures listed below. All measures that were originally in English were translated to Thai. Back-translation to English by a different bilingual translator was conducted to ensure accuracy of translation. Stigma scale Youth completed the Berger’s Stigma Scale, which includes 40 items rated on a 4-point Likert-type scale (strongly disagree,

disagree, agree and strongly agree).30 This scale (Cronbach’s a ¼ 0.96) consists of four factors explaining 46% of the total variances.30 The four factors are defined as the following subscales: (1) personalized stigma: consequences of other people knowing their status; (2) disclosure concerns; (3) negative self-Image: not as good as others, shame, guilt; and (4) public attitudes: what people think about HIV. Social support Youth reported how much they agreed with 12 items from a shortened Social Provision Scale regarding their relationship and support with people in their lives including their families, friends or other acquaintances.33 The scale was shortened during previous pilot work and showed good internal consistency in the US youth (a ¼ 0.86) as well as in Thai youth in this study (a ¼ 0.90). Mental health symptoms Youth completed the 12-item Thai General Health Questionnaire (Thai GHQ-12). This was developed from the full version (Thai GHQ-60) which covers four major mental health problems, including depression, anxiety, social impairment and somatic complaints. Reliability and validity of the Thai GHQ-12 has been reported in Thailand, with Cronbach’s a of 0.84 and the sensitivity and specificity of 78.1% and 85.3%, respectively.34 Scores of 2 and above are considered clinically significant. Quality of life Quality of life was assessed using the 26-item abbreviated version of the Thai Version of World Health Organization Quality-of-Life Assessment Instrument (WHOQOL-BREF-THAI). The abbreviated version (WHOQOL-BREF) is derived from the full version (WHOQOL-100).35 WHOQOL-BREF has been shown to be a valid and reliable brief assessment of quality of life.36 It has the ability to discriminate between subjects with different health conditions including HIV infection,37 and good responsiveness in detecting the quality of life change over time.38,39 WHOQOLBREF-THAI is a 26-item scale with 5-point Likert responses, having four subscales measuring four broad domains of quality of life, including physical health, psychological wellbeing, social relationships and satisfaction with the environment. It has been tested for its psychometric properties in a large Thai population against the WHOQOL-100 and found to be more convenient to use, with better comprehensibility.40 It was found to have acceptable internal consistency and validity.41,42 The reliability was good (a ¼ 0.81) in our current study. Alcohol/substance use Alcohol and substance use were measured using the timeline follow-back procedure.43 Interviewers used a calendar to assist participants in recalling the number of days they used a particular substance or alcohol in the previous 30 days. The amount of alcohol and substances used and the amount of money spent were obtained for each event.

Data analysis Demographic data were analysed using descriptive statistics. Means + standard deviations were reported when appropriate.

128

International Journal of STD & AIDS

Volume 21

February 2010

................................................................................................................................................

Comparisons of categorized variables were performed using x 2 test or Fisher’s exact test, and comparisons of continuous variables were performed using the independent t-test. Correlation analysis and Exploratory Factor Analysis (EFA) of the 40-item Berger’s Stigma Scale were conducted. We then created the abbreviated 12-item Thai Youth HIV Stigma Scale by selecting three items for each subscale using the greatest factor loading as the criterion. The construct validity of the 12-item Thai Youth HIV Stigma Scale and its four subscales was assessed using confirmatory factor analysis (CFA) and the internal consistency and reliability was determined using Cronbach’s a. To assess validity of the 12-item Thai Youth HIV Stigma Scale, we analysed the correlations of the total score and the subscale scores from the 12-item Thai Youth HIV Stigma Scale with the total score and the subscale scores from the 40-item Berger’s scales. Multivariate analysis was conducted to examine the association between stigma scores and mental health, social support, quality of life and alcohol/substance use in TYLH. The statistical analyses were performed using the commercial software SAS version 9.13 (SAS Institute, Cary, NC, USA).

RESULTS Demographics Seventy-four TYLH were referred to the study team by their care providers after they were informed about the study. Seventy (95%) agreed to participate and were enrolled in the study between April and December 2004. There were 26 men, 41 women and three male-to-female transgendered persons (Table 1). Their age ranged from 17 to 25 years, with the mean age of 22.8 + 2.1 years. The participants had been living with the HIV diagnosis for an average of 1.9 + 1.8 years prior to study participation and 40% were currently on antiretroviral therapy. Thirty-two (45.7%) participants were currently living with their spouses, 17 (24.3%) were living with their parents, 12 (17.1%) were living by themselves, and the remaining nine were living with siblings, friends or relatives. Almost two-thirds were currently employed. Of 29 biological men, 12 (41.4%) reported having sex with men only, eight (27.6%) reported having sex with women only, and nine (31.0%) reported having sex with both in their lifetime. All 41 women except one reported having sex with men only in their lifetime. Alcohol use and substance use in the past 30 days were reported in 17 (24.3%) and five (7.1%) youth, respectively.

HIV disclosure Sixty-two participants (88.6%) reported that at least one person knew about their HIV status; the rates were not statistically different between male and female participants (89.7% versus 87.8%, respectively, P ¼ 1.0). The duration of living with HIV diagnosis was comparable between those with at least one person knowing their HIV status and those with no one knowing their HIV status (2.0 + 1.8 versus 1.0 + 1.8 years, P ¼ 0.18). Fifty-two (74.3%) reported that at least one immediate family member (i.e. parents, spouses or siblings) knew about their HIV status. Fourteen (20%) stated that their friends knew about their HIV status. No one knew about their HIV status in eight (11.4%) participants. Male youth who ever had sex with men were more likely to disclose their

Table 1 youth

Demographic characteristics of HIV-positive Thai

Age (mean + SD, years) Highest education (%) Grade 1 –6 Grade 7 –9 Grade 10 –12 Bachelor degree or higher Employment (%) Having children (%) Living alone (%) Living with a spouse (%)

All (n 5 70)

Males (n 5 29)

Females (n 5 41)

22.8 + 2.1

23.1 + 1.3

22.6 + 2.4

17.1 35.7 40.0 7.1 62.9 45.7 17.1 45.7

17.2 20.7 55.2 6.9 69.0 13.8 31.0 24.1

17.1 46.3 29.3 7.3 58.5 68.3 7.3 61.0

SD, standard deviation Significantly different from men at P , 0.05

diagnosis to their friends (43.9% versus 6.1%, P , 0.01) and were less likely to disclose their diagnosis to their immediate families (47.6% versus 91.8%, P , 0.01) when compared with other groups of TYLH. Female youth were more likely to disclose to their immediate families (90.2% versus 62.1%, P , 0.01) and were less likely to disclose to friends (7.3% versus 31.0%, P , 0.05) than male youth. HIV disclosure to sexual partners in the past 30 days was significantly lower in men (63.2%) than in women (96.2%) (P , 0.05).

Mental health, social support and quality of life TYLH in this study had a high prevalence of mental health symptoms, with 53% of the study population scoring at the clinically significant mental health problem range (2 based on Thai GHQ-12). Their mean quality-of-life score was 90.2 + 11.4 (range, 65–114), which fell in the average quality-of-life range of 61 –95 based on WHOQOL-BREF-THAI.40 Their mean social support score was 71.7 + 9.2 (range, 44–88). Mental health, social support and quality of life were not associated with gender or employment status in this study. We found that having at least one person knowing their HIV status or not was not associated with mental health, social support or quality of life. Furthermore, mental health, social support and quality of life in male youth who ever had sex with men was not statistically different from that in other youth.

HIV stigma and stigma scale Correlation analysis indicated that the Cronbach’s a of the 40-item Berger’s stigma scale in TYLH in this study was 0.89, suggesting excellent reliability of the instrument for use to assess stigma among TYLH. EFA of the 40-item stigma scale suggested a five-factor structure, of which four were consistent with the original Berger’s stigma scale. The four-factor model explained 50% of the total variance; this is greater than 46% reported by Berger et al. 30 However, items by factor group in this study differed from those in Berger’s study. Based on the findings from EFA, we created the abbreviated 12-item Thai Youth HIV Stigma Scale by selecting three items for each of four factors with the greatest factor loading, corresponding to the four stigma subscales ( personalized stigma, disclosure, public attitudes and negative self-image) in Berger’s study (Table 2). To be consistent with Berger’s original four subscales, the two items in the fifth factor (‘I never feel ashamed of having HIV’ and ‘Having HIV makes me feel I’m a bad person’) were

Rongkavilit et al. Stigma in HIV-positive Thai youth

129

................................................................................................................................................

Table 2 Abbreviated 12-item HIV Stigma Scale for HIV-positive Thai Youth Factor loading

a

Some people act as though it’s my fault I have HIV I have stopped socializing with some people because of their reactions to my having HIV Have lost friends by telling them I have HIV

0.675

0.77

In many areas of my life, no one knows I have HIV I regret having told some people that I have HIV People I cared about stopped calling after learning have HIV

0.813

People who know I have HIV tend to ignore my good points People seem afraid of me once they learn I have HIV When people learn you have HIV they look for flaws in your character

0.865

People’s attitudes make me feel worse about myself People with HIV are treated like outcasts Most people believe that a person who has HIV is dirty

0.794

Item Personalized stigma 34 35

36 Disclosure concerns 1 26 29

Negative self-image 38

39 40

Public attitude stigma 3 9 10

0.688

0.688

0.84

0.819 0.832

0.93

scores of the four subscales as well as the total score for the 12-item Thai Youth HIV Stigma Scale, and correlated these scores with the scores from the 40-item Berger’s Stigma Scale (Table 3). The four subscales of the 12-item Thai Youth HIV Stigma Scale were correlated with each other. In addition, the scores based on the 12-item Thai Youth HIV Stigma Scale was highly correlated with the score based on the 40-item Berger’s Stigma Scale (r ¼ 0.846, P , 0.01). Multiple regression analyses after controlling for age and gender indicated that total stigma scores from the 12-item Thai Youth HIV Stigma Scale were significantly associated with mental health problems (b ¼ 0.21, P , 0.05; Table 4). When the analysis was conducted for the four individual stigma subscales, public attitudes toward people with HIV/ AIDS were associated with poorer quality of life (b ¼ 21.41, P , 0.01) and mental health problems (b ¼ 1.18, P , 0.01); disclosure stigma was negatively associated with perceived social support (b ¼ 21.03, P , 0.01), and negative self-image was positively associated with perceived social support (b ¼ 0.92, P , 0.05). We found no association between alcohol or illicit drug use and any of the stigma subscales in this study.

0.870

DISCUSSION

0.868

0.80

0.653 0.673

excluded from the 12-item Thai Youth HIV Stigma Scale. Further analysis of the 12-item Thai Youth HIV Stigma Scale indicated that the Cronbach’s a was 0.75 for the 12-item scale, 0.77 for personalized stigma subscale, 0.84 for disclosure concern subscale, 0.80 for public attitudes subscale and 0.93 for negative self-image subscale. We found no difference in total stigma scores or stigma subscale scores between men and women. We also found no difference in total stigma scores or stigma subscale scores between male youth who ever had sex with men and other groups of youth in this study. In addition, there was no correlation between the duration of living with HIV diagnosis and the stigma scores. Findings from CFA indicated that a four factor measurement model fitted the data satisfactorily (x 2 test P . 0.5, GFI ¼ 0.90, x 2/df ¼ 1.07, and RMSEA ¼ 0.02). We then computed the

No data on HIV stigma and HIV disclosure among TYLH have been reported to date. In this study, almost 90% of TYLH reported that at least one person in their life was aware of their HIV status. This finding was unexpected to us given the fact that disclosing HIV status is an emotionally difficult task for any individual particularly youth. The reason for the high disclosure rate and how youth disclosed their status is unknown. It is possible that youth in this study may have received social support from their families, spouses or friends. It is also possible that disclosure to family members was set in context of filial obligation seen in Asian culture to inform family members about their health without looking for emotional support from them.44 Although not statistically significant, we observed a trend for a longer duration of living with HIV diagnosis among youth who had at least one person knowing their HIV status (i.e. 2 years versus 1 year). Having time to think about the impact of a positive HIV test may be an important part of the disclosure process. There is limited information on HIV disclosure among Thai persons, with most focusing mainly on women. In a study of HIV-positive pregnant Thai women 16– 48 years of age, 70–77% had disclosed their HIV status to partners, family and friends by the first 1–4 months postpartum.45 Those who disclosed were more likely to know the partner’s HIV status and to take antiretroviral therapy for prevention of mother-to-child transmission. In a study of Thai HIV-positive women who have recently given birth, 34% had disclosed to

Table 3 Correlations among stigma subscales of the 12-item Thai Youth HIV Stigma Scale and the correlation between the 12-item Thai Youth HIV Stigma Scale and the 40-item Berger’s Stigma Scale Scale

Mean

SD

Personalized stigma

Disclosure concerns

Negative self-image

Public attitude stigma

12-item scale

Personalized stigma Disclosure concerns Negative self-image Public attitude stigma 12-item scale 40-item scale

6.96 7.67 7.91 7.37 29.91 100.99

1.94 2.85 3.01 2.59 6.14 15.32

1 0.187 0.181 0.424 0.669 0.692

1 0.105 20.036 0.558 0.279

1 0.026 0.607 0.403

1 0.552 0.718

1 0.846

SD, standard deviation

130

International Journal of STD & AIDS

Volume 21

February 2010

................................................................................................................................................

Table 4 Association between HIV/AIDS stigma (total score and scores by subscale) and five outcome measures (regression coefficients from multivariate analysis)

Stigma Total sigma score Personalized stigma Disclosure concerns Negative self-image Public attitude stigma

Quality of life 20.22

Mental health 0.21

Social support 78.6

Illicit Alcohol drug use use in past in past 30 30 days days 1.64

10.93

20.21

0.25

20.05

0.15

0.64

20.07

21.03

20.06

20.07

0.53

20.03

0.92

20.09

0.7

20.05

0.11

21.03

21.41

1.18

20.19

One multiple regression model was used for each of the five outcome variables. The total stigma scores were analysed in one model independently and the four subscale scores were analysed simultaneously in one model. In these multivariate regression analysis, chronological age and gender were entered as control variables. P , 0.05 and P , 0.01

another person in addition to their partners. Disclosure was associated with lower HIV-related worry scores. It seems that disclosure may play an important role in partner HIV testing, uptake of antiretroviral treatment and psychological benefit in Thai setting. Thai female youth in the present study were more likely to disclose their HIV status to immediate family members than to friends. This is consistent with the report by Serovich et al. 46 who showed a high rate of disclosure to immediate family members, mainly mothers and sisters, among HIV-positive African-American adult women. In contrary, Simoni et al. 47 identified higher rates of disclosure among women, mostly Hispanic, to lovers and friends than to immediate family members. These differences suggest that cultural factors may play a role in HIV disclosure among women. We observed a difference in disclosure in Thai male youth who ever had sex with men when compared with other youth. They were more likely to disclose their HIV status to friends and less likely to disclose to immediate families. This finding is consistent with the findings from western countries and an Asian country that friends receive HIV diagnosis information from MSM more frequently and at greater rates than family members.48 – 52 Homosexuality is viewed in Asian culture as deviant, contrary to family values of which the expectation that the son will marry and continue the family name and progeny.53 The negative family attitudes around their sexual orientation and HIV-related risks may result in lower rates of disclosure to family among Thai male youth who had sex with men. In collectivistic societies such as Thailand, individuals are defined as part of groups such as families rather than as autonomous independent entities.54 Protecting the families from disgrace and shame related to HIV is critical as Thai society often treats an entire family discriminatorily because of one of its members is HIV positive.55,56 Thus this could be another reason for lower rates of disclosure to family among Thai male youth who had sex with men. It should be noted that we included spouses, parents and siblings in the immediate family category and we did not investigate physical proximity or degree of contact with family or friends, how disclosure was conducted, the reasons for disclosure or non-disclosure, the content of disclosure, and the outcomes of disclosure. This could be the future direction for research related to HIV disclosure in TYLH.

Reduction of HIV stigma is recognized as central to effective programmes across the HIV/AIDS prevention to care and treatment continuum.57 Evaluation of the impact of such programmes will require an understanding of stigma within a sociocultural context and a set of measures that capture the complexities of HIV-related stigma. Our study demonstrated reliability and validity of the abbreviated 12-item stigma scale and preliminary evidence for the association between stigma subscales and psychological factors including mental health, social support and quality of life in TYLH. We demonstrated the four stigma subscales (personalized stigma, disclosure concerns, negative self-image and public attitude stigma) previously identified by Berger et al. 30; this is similar to our prior study in the US youth living with HIV.31 However the items with highest factor loading for certain subscales are different between Thai youth and the US youth. Under disclosure concerns, the two items in the US youth which are ‘I am very careful who I tell that I have HIV’ and ‘I worry that people who know that I have HIV will tell others’ are quite different from the three items in Thai youth. The US youth were concerned that someone who knows their HIV status would tell others (i.e. they need to control those who knew their serostatus) while the Thai youth felt that that they need to hide their serostatus in general. One possible explanation for this difference is that in the US there is a protection for privacy and rights of an individual over the interests of the community. In Thailand, on the other hand, there appears to be a greater value on the protection of the community against HIV over the individual rights of the infected person, especially if there is an unfounded continuing fear of HIV transmission through casual contact.9 The differing correlations between the subscales and other psychosocial variables suggest the importance of maintaining subscales to reflect the complexity of the stigma construct. Total stigma was significantly associated with mental health problems among TYLH. Public attitude stigma towards people with HIV was associated with poorer quality of life and mental health problems; this finding is in contrast with our finding in the US youth.31 Therefore, it seems that perceived public attitudes (i.e. extrinsic stigma) may have a significant role in mental health in Thai youth while personalized stigma (i.e. intrinsic stigma) may have a negative influence on mental health in the US youth. Perceived social support among Thai youth was negatively associated with disclosure concerns but was positively associated with negative self-image. TYLH who have more social support either from their family members or from their friends may not need to be as concerned about HIV disclosure as those who have less social support. Furthermore, those with less social support may become even more isolated because of their concern or fear of disclosure. Regarding self-image, TYLH with more social support may experience more negative selfimage because there may be more people in their lives whom they have disappointed because of being HIV-positive. In our prior report, social support was found to be more important to sexual behaviour change than individual self-efficacy among TYLH compared with the US youth.58,59 This may be a reflection that the community or society rather than an individual may play a larger role in behaviour change among Thai youth. Although we need to work with both extrinsic and intrinsic nature of stigma, decreasing extrinsic stigma by increasing public understanding and compassion, family education, and decreasing public fear of the unfounded contagious nature of HIV through casual contact may have a significant impact on

Rongkavilit et al. Stigma in HIV-positive Thai youth

131

................................................................................................................................................

the reduction of stigma and the improvement in mental health and quality of life among TYLH. Limitations of this study exist. One limitation is the small sample size. It is possible that a larger sample size would reveal differences in stigma and other psychosocial variables based on gender and/ or sexual orientation that are not detected in our study. One could argue that just creating the subscales from the highest loaded items might not have captured all of the possible Thai variables; and that we should have used a tool that was initially developed within the Thai population. However, our Thai collaborators felt that the tool we used was relevant to Thai youth. We also wanted to create an abbreviated stigma measurement tool that is valid and reliable in order to decrease the time burden for youth. This is a single site study in an urban setting where resources are less limited; therefore. it may not reflect the stigma, disclosure and psychosocial distress experienced by TYLH in other regions or in the rural setting. Face-to-face interview may result in interviewer’s bias and may cause youth some discomfort in answering some personal questions or answering the questions honestly. The extent of counselling and support that participants might have received from the care providers is unknown and this may have affected the results seen in this study. In summary, it is critical to evaluate stigma and stigma-related psychosocial factors in youth within a social and cultural context and we need to understand how stigmatization may hinder the treatment and interventions in different cultural environments. We find that in order to improve mental health and quality of life in TYLH, we may need to provide interventions at both the societal and individual levels to release youth from the impact of stigma and the negative consequences to their lives. ACKNOWLEDGEMENT

This work was supported by the Children’s Research Center of Michigan Intramural Fund. We appreciate the contributions of study volunteers. We thank Jeeranan Sawatatat and Panus Rattakitvijun na Nakorn for conducting the interviews with the volunteers. REFERENCES 1 Goffman E. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster, 1963 2 Cadwell SA. Twice removed: the stigma suffered by gay men with AIDS. In: Cadwell SA, Burnham R, Forstein M, eds. Therapy in the front line: Psychotherapy with gay men in the age of AIDS. 1st edn. Washington DC: American Psychiatric Press, 1994:3 –24 3 Lawless S, Kippax S, Crawford J. Dirty, diseased and undeserving: the positioning of HIV positive women. Soc Sci Med 1996;43:1371 –7 4 Crandall CS. Multiple stigma and AIDS: illness stigma and attitudes toward homosexuals and IV drug users in AIDS-related stigmatization. J Commun Appl Soc Psychol 1999;1:165 –72 5 Black BP, Miles MS. Calculating the risks and benefits of disclosure in African American women who have HIV. J Obstet Gynecol Neonatal Nurs 2002;31:688– 97 6 Moneyham L, Seals B, Demi A, Sowell R, Cohen L, Guillory J. Experiences of disclosure in women infected with HIV. Health Care Women Int 1996;17:209 –21 7 Raveis VH, Siegel K, Gorey E. Factors associated with HIV-infected women’s delay in seeking medical care. AIDS Care 1998;10:549 –62 8 Hayes RA, Vaughan C, Medeiros T, Dubuque E. Stigma directed toward chronic illness is resistant to change through education and exposure. Psychol Rep 2002;90:1161 –73 9 VanLandingham MJ, Im-Em W, Saengtienchai C. Community reaction to persons with HIV/AIDS and their parents: an analysis of recent evidence from Thailand. J Health Soc Behav 2005;46:392 –410 10 Weiner B, Perry RP, Magnusson J. An attributional analysis of reactions to stigmas. J Pers Soc Psychol 1988;55:738 –48

11 Boer H, Emons PA. Accurate and inaccurate HIV transmission beliefs, stigmatizing and HIV protection motivation in northern Thailand. AIDS Care 2004;16:167– 76 12 Fife BL, Wright ER. The dimensionality of stigma: a comparison of its impact on the self of persons with HIV/AIDS and cancer. J Health Soc Behav 2000;41:50– 67 13 Lester P, Partridge JC, Chesney MA, Cooke M. The consequences of a positive prenatal HIV antibody test for women. J Acquir Immun Defic Syndr Hum Retrovirol 1995;10:341 –9 14 Hays RB, Turner H, Coates TJ. Social support, AIDS-related symptoms, and depression among gay men. J Consult Clin Psychol 1992;60:463 –9 15 Kang E, Rapkin BD, Remien RH, Mellins CA, Oh A. Multiple dimensions of HIV stigma and psychological distress among Asians and Pacific Islanders living with HIV illness. AIDS Behav 2005;9:145 –54 16 Paxton S, Gonzales G, Uppakaew K, et al. AIDS-related discrimination in Asia. AIDS Care 2005;17:413– 24 17 Prachakul W, Grant JS, Keltner NL. Relationships among functional social support, HIV-related stigma, social problem solving, and depressive symptoms in people living with HIV: a pilot study. J Assoc Nurses AIDS Care 2007;18:67– 76 18 Myers T, Orr KW, Locker D, Jackson EA. Factors affecting gay and bisexual men’s decisions and intentions to seek HIV testing. Am J Public Health 1993;83:701– 4 19 Stall R, Hoff C, Coates TJ, et al. Decisions to get HIV tested and to accept antiretroviral therapies among gay/bisexual men: implications for secondary prevention efforts. J Acquir Immune Defic Syndr Hum Retrovirol 1996;11:151– 60 20 Crandall CS, Coleman R. AIDS-related stigmatization and the disruption of social relationships. J Soc Pers Relationships 1992;9:163 –77 21 UNAIDS. 2004 Report on the Global HIV/AIDS Epidemic: 4th Global Report. 2004 22 Pradubmook P. Coping for Life Problem of Persons With AIDS. Nakhon Pratom: Mahidol University, 1994 23 Li L, Lee SC, Jiraphongsa C, Khumtong S, Rotheram-Borus MJ. Stigma and Social Support: Impact of Depression among People Living with HIV in Thailand. XVII International AIDS Conference. Mexico City, Mexico, 2008 24 Chan KY, Stoove MA, Reidpath DD. Stigma, social reciprocity and exclusion of HIV/AIDS patients with illicit drug histories: a study of Thai nurses’ attitudes. Harm Reduct J 2008;5:28 25 Chan KY, Stoove MA, Sringernyuang L, Reidpath DD. Stigmatization of AIDS patients: disentangling Thai nursing students’ attitudes towards HIV/AIDS, drug use, and commercial sex. AIDS Behav 2008;12:146 –57 26 Bureau for International Narcotics and Law Enforcement Affairs. Thailand: International Narcotics Control Strategy Report 2003. Department of State, Washington, DC, 2004 27 UNAIDS/WHO. Thailand: Epidemiological Fact Sheets on HIV/AIDS and Sexually Transmitted Infections Update, 2004 28 Thai Working Group on HIV/AIDS. Situations of AIDS in Thailand. Ministry of Public Health, Thailand, 2005 29 United Nations. Thailand’s Response to HIV/AIDS: Progress and Challenges. United Nations Developmental Programme, 2004 30 Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Res Nurs Health 2001;24:518– 29 31 Wright K, Naar-King S, Lam P, Templin T, Frey M. Stigma scale revised: reliability and validity of a brief measure of stigma for HIVþ youth. J Adolesc Health 2007;40:96 –8 32 Rongkavilit C, Naar-King S, Chuenyam T, Wang B, Wright K, Phanuphak P. Health risk behaviors among HIV-infected youth in Bangkok, Thailand. J Adolesc Health 2007;40:358.e1 –8 33 Cutrona CE, Russell D. The provisions of social relationships and adaptation to stress. In: Jones WH, Perlman D, eds. Advances in Personal Relationships, Vol. 1. Greenwich, CT: JAI Press, 1987:37 – 67 34 Nilchaikovit T, Sukying C, Silpakit C. Reliability and validity of the Thai version of the General Health Questionnaire. J Psychiatr Assoc Thailand 1996;41:1 –17 35 Power M, Kuyken W. The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc Sci Med 1998;46:1569 –85 36 Harper A, Power M. Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment. Psychol Med 1998;28:551 –8 37 Fang CT, Hsiung PC, Yu CF, Chen MY, Wang JD. Validation of the World Health Organization quality of life instrument in patients with HIV infection. Qual Life Res 2002;11:753 –62 38 Macalino GE, Celentano DD, Latkin C, Strathdee SA, Vlahov D. Risk behaviors by audio computer-assisted self-interviews among

132

International Journal of STD & AIDS

Volume 21

February 2010

................................................................................................................................................

39

40

41

42

43

44 45

46 47

48

HIV-seropositive and HIV-seronegative injection drug users. AIDS Educ Prev 2002;14:367– 78 O’Carroll RE, Smith K, Couston M, Cossar JA, Hayes PC. A comparison of the WHOQOL-100 and the WHOQOL-BREF in detecting change in quality of life following liver transplantation. Qual Life Res 2000;9:121 –4 Mahatnirunkul S, Tuntipivatanakul W, Pumpisanchai W. Comparison of the WHOQOL-100 and the WHOQOL-BREF (26 items). J Ment Health Thai 1998;5:4 –15 Phungrassami T, Katikarn R, Watanaarepornchai S, Sangtawan D. Quality of life assessment in radiotherapy patients by WHOQOL-BREF-THAI: a feasibility study. J Med Assoc Thai 2004;87:1459– 65 Taboonpong S, Suttharangsee W, Chailangka P. Evaluating psychometric properties of WHO quality of life questionnaire in Thai elderly. J Gerontol Geriatric Med 2001;2:6 –12 Sobell LC, Brown J, Leo GI, Sobell MB. The reliability of the alcohol timeline followback when administered by telephone and by computer. Drug Alcohol Depend 1996;42:49 –54 Yoshioka MR, Schustack A. Disclosure of HIV status: cultural issues of Asian patients. AIDS Patient Care STDS 2001;15:77 – 82 Skunodom N, Linkins RW, Culnane ME, et al. Factors associated with non-disclosure of HIV infection status of new mothers in Bangkok. Southeast Asian J Trop Med Public Health 2006;37:690 –703 Serovich JM, Craft SM, Yoon HJ. Women’s HIV disclosure to immediate family. AIDS Patient Care STDS 2007;21:970 –80 Simoni JM, Mason HR, Marks G, Ruiz MS, Reed D, Richardson JL. Women’s self-disclosure of HIV infection: rates, reasons, and reactions. J Consult Clin Psychol 1995;63:474 –8 Serovich JM, Esbensen AJ, Mason TL. Disclosure of positive HIV serostatus by men who have sex with men to family and friends over time. AIDS Patient Care STDS 2007;21:492 –500

49 Wolitski RJ, Rietmeijer CA, Goldbaum GM, Wilson RM. HIV serostatus disclosure among gay and bisexual men in four American cities: general patterns and relation to sexual practices. AIDS Care 1998;10:599– 610 50 Petrak JA, Doyle AM, Smith A, Skinner C, Hedge B. Factors associated with self-disclosure of HIV serostatus to significant others. Br J Health Psychol 2001;6:69 –79 51 Zea MC, Reisen CA, Poppen PJ, Echeverry JJ, Bianchi FT. Disclosure of HIV-positive status to Latino gay men’s social networks. Am J Community Psychol 2004;33:107 –16 52 Ko NY, Lee HC, Hsu ST, Wang WL, Huang MC, Ko WC. Differences in HIV disclosure by modes of transmission in Taiwanese families. AIDS Care 2007;19:791– 8 53 Matteson D. Bisexual and homosexual behavior and HIV risk among Chinese-, Filipino- and Korean-American men. J Sex Res 1997;34:93 –104 54 Triandis H. Individualism and Collectivism. Boulder, CO: Westview Press, 1995 55 Songwathana P, Manderson L. Stigma and rejection: living with AIDS in villages in southern Thailand. Med Anthropol 2001;20:1 – 23 56 Kittikorn N, Street AF, Blackford J. Managing shame and stigma: case studies of female carers of people with AIDS in southern Thailand. Qual Health Res 2006;16:1286–301 57 Nyblade LC. Measuring HIV stigma: existing knowledge and gaps. Psychol Health Med 2006;11:335 –45 58 Naar-King S, Rongkavilit C, Wang B, et al. Transtheoretical model and risky sexual behaviour in HIV þ youth in Thailand. AIDS Care 2008;20:198 –204 59 Naar-King S, Wright K, Parsons JT, Frey M, Templin T, Ondersma S. Transtheoretical model and condom use in HIV-positive youths. Health Psychol 2006;25:648– 52

(Accepted 21 January 2009)