Sage Journals: Discover world-class research

Abstract

HIV/AIDS-related stigma has been linked to poor adherence resulting in drug resistance and the failure to control HIV. This study used both quantitative and qualitative methods to examine stigma and its relationship to adherence in 30 HIV-infected Thai youth aged 14 to 21 years. Stigma was measured using the HIV stigma scale and its 4 subscales, and adherence was measured using a visual analog scale. Stigma and adherence were also examined by in-depth interviews. The interviews were to determine whether verbal responses would match the scale’s results. The mean score of stigma perception from the overall scale and its 4 subscales ranged from 2.14 to 2.45 on a scale of 1 to 4, indicating moderate levels of stigma. The mean adherence score was .74. The stigma scale and its subscales did not correlate with the adherence. Totally, 17 of the respondents were interviewed. Contrary to the quantitative results, the interviewees reported that the stigma led to poor adherence because the fear of disclosure often caused them to miss medication doses. The differences between the quantitative and the qualitative results highlight the importance of validating psychometric scales when they are translated and used in other cultures.

Keywords

stigma medication adherence youth living with HIV/AIDS Thailand qualitative methods

Introduction

Stigma was classically defined by Goffman as “the process by which the reaction of others spoils normal identity.”¹ Perhaps the most stigmatized disease in modern times is HIV/AIDS. It is stigmatized by both the means by which it is acquired and the morbidity and mortality with which it is associated. The HIV/AIDS-related stigma has been found throughout the world. It has been reported in Lesotho, Malawi, South Africa, Swaziland and Tanzania,² the United States,³ India,⁴ Botswana,⁵ and Ukraine.⁶ A 12-country study from the 5 continents found that HIV/AIDS stigma was a global phenomenon.⁷ Stigma has been found to be a barrier to individuals seeking HIV testing.^8
–10 Stigma has also been linked to poor adherence to antiretroviral (ARV) medication regimens in 5 African countries,¹¹ the United States,¹² India,¹³ Brazil,¹⁴ and elsewhere.¹⁵

Alonzo and Reynolds suggested that HIV/AIDS stigma was unique because the stigma was associated with undesirable behaviors as well as with the actual disease. They also state that learning of one’s infection creates an internalized stigma that is derived from the group norms even though the individual has not been recognized by the community as being stigmatized.¹⁶ Because HIV/AIDS-related stigma operates at both an internalized and an external level, it is difficult to study. The actual fact of the community’s stigmatization of the disease is not as important as the HIV-infected person’s beliefs about that stigma. Internalized stigma and an infected person’s perception of community stigma can only be discovered by direct contact with HIV-infected persons.

It has long been known that a particularly difficult group to access and study are HIV-infected youth. They are difficult to reach, often distrustful of adults, and experience stigma within the cultural norms of both the general culture and other young people.^17

–21 Youth living with HIV/AIDS have been shown to be stigmatized and to not disclose their sero-positive status to others and to isolate themselves from society.^22
–24 The stigma felt by the young people can also have implications for children that may be born to them. Teenagers in South Africa are known to cover up their HIV-positive status when pregnant even though they know that it may lead to giving birth to a HIV-infected baby.²⁵

So, it was deemed important to determine whether a commonly used HIV stigma scale was valid for use in the Thai cultural context and for young Thais. The latter was thought to be important because it was also recognized that stigma in youth must be measured in the context of both their culture and their perceptions of their peer group’s response to HIV infection. Therefore, a study was conducted to examine the level of perceived stigma among young people in an area of Northern Thailand and to determine whether there is a relationship between stigma and adherence in Thai youth as has been found in other countries.

Setting

The study was conducted in 2010 in Chiang Mai Thailand, a city that has an HIV prevalence rate that is similar to the rest of Thailand, the country with the highest prevalence rate in Asia.²⁶ Previous studies had shown that young people in Chiang Mai engaged in risky behaviors such as practicing unsafe sex and having multiple partners.²⁷ Thai youth also have been shown to have poor adherence to their antiretroviral therapy (ART) as shown in a study which demonstrated that more than one-third of the Thai youth living with HIV/AIDS had an adherence rate of less than 95%.²⁸ Stigma has been identified in Thailand.^23,29

–32 Thailand was one of the first countries in Asia to make ART available without charge to its HIV-infected population.^26,33 As a result, there are now a significant number of HIV-infected persons who have survived to adolescence and to young adulthood in Thailand.

Methods

This study used a combination of quantitative and qualitative approaches to explore stigma perception and medication adherence among Thai youth living with HIV/AIDS. A mixed method approach was taken because there was no validated instrument in the Thai language that measured stigma. The HIV stigma scale was developed by Berger, Ferrans, and Lashley.³⁴ This is a commonly used instrument (314 references in Google Scholar) for measuring the stigma and it has been used in many countries. This 40-item HIV stigma scale comprises 4 subscales measuring disclosure (8 items), public attitude (8 items), personalized stigma (16 items), and negative self-image (8 items). All items had possible responses using a 4-point ordinal scale from 1 = “strongly disagree” to 4 = “strongly agree,” with 38 positive items and 2 negative items. The full list of the questions used in the scales is shown in Table 3. It has been used in a variety of populations and settings.^13,35
–37 This scale had been previously translated into the Thai language and used by Suksatit²³ in Thai adults, but it had not been validated for use in the Thai culture or in the Thai youth.

Demographic information and risk behavior data were also collected. Adherence to medication regimens was determined using a visual analog scale that ranged from “I took none of my doses” to “I took all of my doses in the previous 30 days.” This scale had been developed by the Ministry of Health of Thailand and is the standard for measuring adherence in Thailand.³⁸ Other methods have been used to measure adherence, but a recent publication has suggested that none has been shown to be superior to any other one.³⁹

Procedures

After obtaining approval from the Institutional Review Board of the Faculty of Nursing of Chiang Mai University, potential participants were approached to participate in the study. Some participants were recruited from a network of people living with HIV/AIDS, which operates out of 4 community hospitals in Chiang Mai province. Those network members who agreed to participate in the study were asked to refer others to the study. During the time frame allotted for this study, it was possible to recruit 30 youth aged 14 to 21 years. This is the age range of youth members of the network. All had been diagnosed as being HIV sero-positive and had received ARV drugs for at least 1 month. All of the participants had been taking ARV drugs for many years (90% were perinatally infected), but some had stopped taking drugs for a while and then had restarted. So, the inclusion criteria were established as having been prescribed HIV medications for at least the past 30 days so that the adherence scale would be valid. Totally, 17 of the 30 informants volunteered for in-depth interviews that were recorded. The interview sessions were conducted by the same nurse researcher, who is a trained qualitative researcher and who followed a standardized interview guide. The interviews took 60 to 90 minutes.

Data Analysis

Descriptive statistics were used to examine demographic data. The relationships between adherence and the stigma scales were examined using correlation. Qualitative data were analyzed using thematic analysis developed by Miles and Huberman.⁴⁰ Themes from the data were identified by 3 of the coauthors for coding consistency, emergence of main themes, and extraction of statements to support the themes. In those instances where there was disagreement, a consensus was derived through discussion.

Results of Quantitative Survey

Respondent characteristics behaviors and adherence

The sample consisted of 17 male (56.7%) and 13 female (43.3%) participants, aged between 14 and 21 years. More than half (70.0%) were Buddhist, and they were well educated considering their ages, with 76.7% having graduated from high school. The period since their HIV status was revealed to them ranged from 2 to 13 years (mean [M], 7.00 years; standard deviation [SD], 3.30 years). Causes of HIV infection were mother to child (90.1%), sexual behavior (3.3%), blood transfusion (3.3%), and did not know (3.3%). About one-fourth of them reported drinking alcohol in the past 6 months. Only 4 respondents (13.3%) reported having sex in the past 6 months, and all 4 had multiple partners and none of them ever used a condom during these sexual intercourses. The duration of taking ARV drugs varied from 1 to 13 years (M, 6.37; SD, 2.95).

The mean medication adherence score as measured by the visual analog scale was 74.83, with a range of 0 to 100. Although only 8 (26.7%) of the respondents reported having trouble taking their ARV medications, almost all of them (93.3%) reported taking the drug irregularly. Only 2 individuals reported that they took all of their ARV doses in the past month. The most common reasons for failing to take their drug were forgetting and not taking the medication with them when they left home. When filling out the Ministry of Health’s adherence scale, only 3 persons reported that fear of others learning their status kept them from adhering. The most common reasons for not taking pills on time were sleeping through the time of taking the medications, failing to take the medication when they left home, and forgetfulness. When they did take their medications, a majority of them (60.0%) took their ARV drug within 30 minutes of the scheduled time. Again, only 3 individuals reported that fear of being discovered as HIV-infected kept them from taking the medication on time (see Table 1).

Table 1.

Respondent Characteristics, Behaviors, and Adherence (n = 30).

Variables	Frequency	Percentage
Sex
Male	17	56.7
Female	13	43.3
Religion
Buddhism	21	70.0
Christianity	8	26.7
Islam	1	3.3
Education
High school graduate	23	76.7
Did not graduate from high school	3	10.0
No education	4	13.3
Cause of HIV infection
Mother to child	27	90.1
Sexual behavior	1	3.3
Blood transfusion	1	3.3
Do not know	1	3.3
Had sex in the past 6 months
Yes	4	13.3
No	26	86.7
Multiple partners in the past 6 months
Yes	4	13.3
No	26	86.7
Used condoms
Never	4	13.3
Did not have sex	26	86.7
Drank alcohol in the past 6 months
Yes	8	26.7
No	22	73.3
Had a problem taking ARV drug
Yes	8	26.7
No	22	73.3
Antiretroviral drug always taken on time in 1 month
Yes	18	60.0
No	12	40.0
Reason for not taking ARV drug on time (more than 1 choice allowed)
Did not take the medicine when I left the house	7	58.3
Did not wake up	7	58.3
Forgot	6	50.0
Overslept	4	33.3
Busy in work	4	33.3
Feared that others would know their status	3	25.0
Thought that not necessary to take it on time	1	8.3
Antiretroviral drug taken as prescribed for the past month
Yes	2	6.7
No	28	93.3
Reason for not taking ARV drugs as prescribed in past month (more than 1 choice allowed)
Forgot	20	71.4
Did not take medicine with me	19	67.9
Bored	8	28.6
Not want to take it	4	14.3
Feared that others would know their status	3	10.7
Lost the pill	1	3.6
Playing games	1	3.6
Busy in work	1	3.6

Abbreviation: ARV, antiretroviral.

Stigma Perception

The stigma scale showed good scalability with a reliability coefficient (Cronbach α) of .95 for the full scale. The reliability coefficient of disclosure, public attitude, personalized stigma, and negative self-image subscales were .62, .85, .94, .80, respectively. The overall stigma perception ranged from 1.25 to 3.40, with a mean of 2.24. Disclosure subscale had the highest mean score (M, 2.45; SD, .46), followed by public attitude subscale (M, 2.26; SD, .52), negative self-image subscale (M, 2.22; SD, .53), and personalized stigma subscale (M, 2.14; SD, .56), respectively (see Table 2). Table 3 shows the intercorrelations between the overall stigma scale and its subscales. They all show sufficiently low correlations to suggest that they are examining different aspects of stigma. It also shows that there was no discernible relationship between the adherence scale and the overall stigma scale or any of its subscales.

Table 2.

Range, Mean, and Standard Deviation of Scores on the HIV Stigma Perception Scales (n = 30).

Variables	Range	Mean	SD
Stigma perception (total score)	1.25-3.40	2.24	0.46
Disclosure subscale	1.50-3.50	2.45	0.39
Public attitude subscale	1.13-3.38	2.26	0.52
Personalized stigma subscale	1.00-3.50	2.14	0.56
Negative self-image subscale	1.50-3.88	2.22	0.53

Abbreviation: SD, standard deviation.

Table 3.

Correlation Between Stigma Scale, Stigma Subscales, and Medication Adherence (N = 30).

		Adherence	Total Stigma Scale	Personalized Stigma Subscale	Disclosure Subscale	Negative Self-Image Subscale	Public Attitudes Subscale
Adherence	Pearson correlation	1	−.017	.017	.042	−.125	−.014
	Sig (2-tailed)		.931	.930	.827	.509	.940
	N	30	30	30	30	30	30
Total stigma scale	Pearson correlation	−.017	1	.953^a	.707^a	.890^a	.886^a
	Sig (2-tailed)	.931		.000	.000	.000	.000
	N	30	30	30	30	30	30
Personalized stigma subscale	Pearson correlation	.017	.953^a	1	.611^a	.791^a	.751^a
	Sig (2-tailed)	.930	.000		.000	.000	.000
	N	30	30	30	30	30	30
Disclosure subscale	Pearson correlation	.042	.707^a	.611^a	1	.457^b	.553^a
	Sig (2-tailed)	.827	.000	.000		.011	.002
	N	30	30	30	30	30	30
Negative self-image subscale	Pearson correlation	−.125	.890^a	.791^a	.457^b	1	.832^a
	Sig (2-tailed)	.509	.000	.000	.011		.000
	N	30	30	30	30	30	30
Public attitudes subscale	Pearson correlation	−.014	.886^a	.751^a	.553^a	.832^a	1
	Sig (2-tailed)	.940	.000	.000	.002	.000
	N	30	30	30	30	30	30

^a Correlation is significant at the .01 level (2-tailed).

^b Correlation is significant at the .05 level (2-tailed).

Qualitative Findings: Stigma

Findings from the qualitative results provided a more detailed description about the participant’s stigma perception that indicated a high level of concern about stigma. The issues raised by the respondents paralleled the areas examined by the quantitative scale: (1) disclosure issues; (2) public attitude toward HIV/AIDS; (3) personalized stigma reflected in being disappointed and lonely, and (4) negative self-image. However, the feelings expressed by the respondents in the interviews were more pervasive and intense. The comments also reflected a great deal of concern about the reactions of other youths to their infection.

Disclosure issues

Although the quantitative scale indicated a below-the-mid-point concern about the disclosure, most of the interviewees did not want to reveal their status to their friends, especially boyfriend/girlfriend or partner because of a worry about being rejected. Moreover, they had a fear that revealing to others would result in their status being disclosed to the public. They were afraid that their friends would be disgusted and/or they would be humiliated among their peer group. Therefore, some informants chose to be isolated and to not socialize with other people. They disclosed their HIV status only to their family members or to the people they trusted. As some participants expressed:

I am afraid that my friends will be disgusted with me. So I don’t tell them (about an infection result) . . because I’m afraid that they’d tell other people. I do not want to go out . . . I want to be alone . . . Don’t want to meet anybody . . . . (participant #3)

People around my area usually gossip about things. I believe if they know that I have HIV they will gossip about me for sure. (participant #17)

Only my family members know. My girlfriend doesn’t know. I don’t want her to know. (participant #11)

Public attitude to HIV/AIDS

Most informants perceived that people in society still did not accept people living with HIV/AIDS. People expressed their disgust through their eye contact, their behavior, and the way they talked about people living with HIV. Various marginalizing acts were found such as making fun of people living with HIV and refusing to allow them to be involved in a peer group or its activities. Some respondents reported families separated personal care items and food of people living with HIV from other family members. Some participants who were known to be positive were not allowed to join school activities. Examples of the comments that were made included:

If people know anyone who has HIV, they usually express their disgust through a weird eye contact. (participant #17)

Some people express their disgust against people living with HIV obviously . . .my girlfriend’s family for instance. . . . We used to share soap. . . .But after they know that I have HIV, they separate soap and put in different baskets. . . . We used to share soup in the same bowl. But now we dine using bowl and spoon separately. (participant #14)

My friends don’t want to play with me. They are all disgusted with me. Once I was a member in a group in cooking class but they told me not to cook, not to do anything. They were afraid (of getting infection from me). (participant #3)

Moreover, some informants said that they were rejected while applying for work because of their HIV infection. Therefore, they failed to get a job that they wanted. Generally, the only jobs that they could get were relatively low paying ones.

I want to have a job but I don’t know where I could apply. A medical certificate is always required. . . . I don’t understand why people living with HIV are not qualified in applying for those jobs . . .except being construction worker and waiter/waitress. . . .This is one of the obstacles I’ve faced. (participant #14)

I’ve been feeling hopeless until now, and this feeling is still going on. It’s even worse when I’m unemployed. It’s painful when I’ve found myself not be able to die and not be able to work either. (participant #17)

Personalized stigma as expressed in being disappointed and lonely

Informants felt disappointed and feared being rejected or being teased about having HIV infection. They were also aware of disgusted reactions toward HIV/AIDS by their peers. They felt hurt and stressed when someone who knew their HIV status expressed his or her disgust toward them. According to these, some informants did not want to go to school. Some of them felt that they were lonely because no one understands them and what they are experiencing.

Since my friends discovered that I have HIV, they stay away from me. I don’t know what to do. I just let them do what they want to. I can stay by myself. (participant #1)

I’m disappointed about myself. I don’t want them to look at me like a weirdo. (participant #14)

I used to see people being disgusted by someone with HIV and I don’t want to be like that . . . I don’t want to feel lonely even when I am among my family or when my boyfriend/girlfriend is beside me. (participant #17)

Because of the negative attitude that they had toward themselves, 4 of the respondents reported having suicidal ideation. One tried to commit suicide because of the intense stress of having HIV and making his family upset.

They discovered that I have HIV when I began taking medication. Since then I have had trouble with my cousins. It was so stressful for me that the idea of suicide came into my mind. (participant #9)

I used a knife to slit my wrist because I had a fight with my mom and I was so stressed about getting HIV. I can’t stand living like this. My mom is very upset and I feel sorry too. (participant #1)

Personalized stigma as expressed in feeling guilty and sinful

When they discovered that they had HIV the respondents said that they had trouble in accepting it. They felt upset, disappointed, like a failure, and were disgusted with themselves for getting HIV infection. Some of them felt that having HIV was a sin caused by bad karma for actions that they had done in past lives. As a result, they tended to think of themselves as a bad person. This is remarkable in that all but 2 of these young people were infected at birth or through a blood transfusion. Here are some example comments.

I am disgusted with myself for getting HIV. Why I have to live with this disease. I don’t want to be infected. (participant #3)

I think I am a bad daughter for getting HIV. No one wants to be a friend of mine because it is an incurable disease. Why do these things happen to me? Why does it happen to someone else? (participant #8)

I can’t accept the truth that I have HIV. It makes me feel being sinful by doing bad things . . . I might have done bad karma in my previous lives so I have to pay back in this life. (participant #17)

Qualitative Findings: Medication Adherence

In the quantitative data, the overall medication adherence score was at a moderately high level (M, 74.83; SD, 22.91). However, the responses to the questionnaire showed that the visual analog scale may not have reflected the true level of adherence. The qualitative findings supported the questionnaire responses, suggesting that adherence may have been at a lower level than was indicated by the visual analog scale. Most informants did not take the ARV on time. They frequently forgot to bring the pill when they went out or were involved with their work or other activities. The qualitative findings also suggested that stigma had an impact on the taking of their medications.

That time I forgot my ARV at home while hanging out. I didn’t plan to go back home late, only around 5 pm, in the first place. My friend dragged me to go out until late at night. But I took ARV immediately after I recalled. (participant #3)

I forget sometimes. Sometimes I’m too obsessed with a particular activity, such as homework, till late. But when I recall… I take it immediately. (participant #4)

I’m not very punctual in taking ARV. Sometimes I arrive home late from school. Sometimes I don’t wake up when my mom wakes me up in the morning. I don’t realize that I should be taking my ARV that much. (participant #7)

Some informants did not let their friends and other people know that they have HIV by taking medication behind these individual’s backs. This further demonstrated that these individuals felt more stigma than was shown by the quantitative scale.

I have to take (ARV) behind their backs. I’m afraid that, if they’d ask what kind of pill I take, I’d have no idea how to reply them. (participant #6)

If they know that I take a pill, they will tease me. It makes me feel humiliated so I skip taking it and hide it. (participant #16)

I intended (not to take ARV) . . . I didn’t bring my pill when I was staying at my girlfriend’s place. I stopped taking it for few days so they didn’t know that I have HIV. (participant #1)

In addition, most of the informants reported that they missed some doses because they forgot to carry the pill when they went out to school, play, or work. Some of them feared being ashamed and teased for being HIV infected.

I go out to study in the city and sometimes I don’t take pill. Sometimes I go out to work early or play with friends and I leave my pill at home so I don’t take it. (participant #5)

As was revealed by the quantitative data, a few respondents mentioned having some difficulty in taking the medication and 1 of them had to skip the ARV while taking other drugs for treating an opportunistic infection because she could not tolerate the strong dosage.

This pill is so hard to swallow. It makes me want to throw up so I stop taking it . . . When I was sick and admitted in the hospital, I had to take ARV and other drugs together. Each of them had a strong dosage and made me get worse. So I chose to cure an opportunistic infection first by taking other drugs except ARV. (participant #15)

Discussion

The results from the stigma scales would suggest that the respondents were not feeling a high level of internalized or external stigma in as much as that mean scores on the stigma questions were almost exactly in the middle of the potential scores. Also, only 3 of the mean scores on the 40 individual questions were outside the range of 2.17 and 2.60, indicating a remarkable consistency in the responses (data not shown). This may indicate that the study population considered themselves to not be stigmatized or that the instrument was inappropriate for use in this population. The qualitative data were helpful in resolving which of these explanations was likely. Findings from qualitative results provided a more detailed description about the participant’s stigma perception, and they indicated a high level of concern about the stigma. The issues raised by the respondents paralleled the areas examined by the quantitative scale: (1) disclosure issues; (2) public attitude toward HIV/AIDS; (3) personalized stigma reflected in being disappointed and lonely; and (4) negative self-image. However, the feelings expressed by the respondents in the interviews were more pervasive and intense. The comments also reflected a great deal of concern about the reactions of other youths to their infection.

There were also inconsistencies within the quantitative material. Although the adherence scale indicated a relatively high degree of adherence (74.83 on a 0-100 scale), the responses to the other adherence questions in the quantitative section indicated a significant number of missed doses, late doses, and difficulties in taking the medications. The qualitative responses also indicated a discrepancy with the visual analog scale suggesting that it may not be an appropriate measurement tool in this population.

These study results show the importance of using qualitative methods to understand whether a scale that is developed for use in one culture is applicable in another culture or age group. Although the usual process of translating and back translating is important to make certain that the same words are used, it is equally important to show that the interpretation of the words is the same in the new culture or group. This study demonstrated the utility of qualitative information in verifying the validity of a scale that was developed for use in a different language and culture. The scores of total stigma perception scale and all of its subscales were relatively low with none of them reaching the mid-point on the 1 to 4 scale. The results were consistent with the previous Thai study which also found that the scores of total stigma perception and all subscales of the Thai participants with HIV/AIDS experienced low-to-moderate levels of stigma.²³ However, the qualitatively obtained data suggested that many of the respondents felt high levels of both internal and external stigma. It is important to realize that these results were obtained using a stigma scale that had been previously used in both Thailand and throughout the world.

The qualitative data also show that stigma was a source of missed doses of medications. This was consistent with other studies which have reported that stigma is a barrier to medication adherence and that HIV-infected persons delayed or skipped doses because of fear of exposure and personal or family humiliation.^22,41

The stigma scale showed good scalability characteristics as evidenced by the high Cronbach α scores of the overall scale and its subscales. However, good scalability does not necessarily mean that the resulting scores are validly measuring the concept. This seems to be the case as revealed by the qualitative findings which revealed that stigma was a major concern among the informants. They feared that others would be disgusted with them and that they might be humiliated in front of their friends if others knew of their HIV status. As a result, many of them were afraid to disclose their HIV status and some chose to isolate themselves. The fear of being stigmatized is consistent with previous studies in Thailand, which showed that people living with HIV/AIDS perceived that they would be rejected by friends and relatives, be found to be disgusting, or be fired or forced to resign from their job when others found out that they were HIV infected.^23,42

Study Limitations

The respondents who participated in this study were youth living with HIV/AIDS who were willing to share their experiences so they may not reflect all individuals of this status. Also this was a very small sample in 1 location in Thailand, and it is not clear whether the results will be applicable in other locations. Only 17 of the original 30 respondents agreed to be interviewed, so they may feel more strongly about these issues. A comparison of the average scores on the overall stigma scale and its subscales showed that the interviewees had marginally higher scores than those who refused to be interviewed, with 2 of the differences on subscales being at the .04 level of significance (see Table 4). This may indicate that there were differences between those who were interviewed and those who refused to be interviewed. However, the study has raised significant concerns about the validity of the scale, so these differences may not be meaningful. Those who were interviewed had stigma scores that did not go beyond the mid-point of the stigma scale, so while they could have been potentially more stigmatized than those who refused to be interviewed, they were still reporting relatively low levels of stigma. Another potential bias may be that the qualitative interviews were conducted after the questionnaires had been completed. This may have given the respondents more time to think about these issues before they were interviewed. It may also be that they had developed a level of trust with the investigators that allowed them to be more open in the interviews. This could be very important when they were discussing their adherence to medications as poor adherence is a behavior that an HIV-infected person usually does not wish to reveal to health professionals whom they do not trust.

Table 4.

Comparison of HIV Stigma Perception Between the 17 Interviewees and the 13 Who Refused to be Interviewed (n = 30).

	17 Cases		13 Cases
Variables	Mean	SD	Mean	SD	t	P Value
Stigma perception (total score)	2.39	.52	2.05	.26	2.14	.04
Disclosure subscale	2.54	.44	2.36	.32	1.25	.22
Public attitude subscale	2.40	.56	2.08	.40	1.78	.09
Personalized stigma subscale	2.31	.63	1.91	.38	2.00	.06
Negative self-image subscale	2.40	.60	2.00	.29	2.17	.04

Abbreviation: SD, standard deviation.

Conclusion

Further research to understand the scope of psychosocial problems among Thai youth living with HIV/AIDS is needed. The quantitative and the qualitative results both suggest that adherence is at a sufficiently poor level in this age group that most of the respondents will soon develop drug-resistant virus if they have not already done so. This should be of great concern for the future health of these individuals and for the future of the epidemic among youth in Thailand, given that all 4 of the respondents who reported being sexually active said that they had sex with multiple partners and they never used a condom. One would assume that similar behaviors might occur as the other members of this group become sexually active.

Footnotes

Acknowledgments

The authors would like to thank the Thai youth living with HIV/AIDS who participated in the study.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: We wish to thank the National Research University Project under Thailand's Office of the Higher Education Commission for financial support (WF62). This publication resulted (in part) from research supported by the Baylor-UTHouston Center for AIDS Research (CFAR), an NIH funded program (AI036211).

References

Goffman

. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliff, NJ: Prentice-Hall. 1963:9–10.

Holzemer

Uys

Chirwa

Validation of the HIV/AIDS Stigma Instrument - PLWA (HASI-P). AIDS Care. 2007;19(8):1002–1012.

Andrinopoulos

Clum

Murphy

Health related quality of life and psychosocial correlates among HIV-infected adolescent and young adult women in the US. AIDS Educ Prevent. 2011;23(4):367–381.

Nambiar

Ramakrishnan

Kumar

Knowledge, stigma, and behavioral outcomes among antiretroviral therapy patients exposed to Nalamdana's radio and theater program in Tamil Nadu, India. AIDS Educ Prevent. 2011;23(4):351–366.

Keleitse

Bussman

Gaolaithe

Marlink

Wester

. Psychological factors affecting medication adherence among HIV infected adults receiving combination antiretroviral therapy (cART) in Botswana. AIDS Res Hum Retroviruses. 2010;28(6):685–691.

Mimiaga

Safren

Dvoryak

Reisner

Needle

Woody

. We fear the police, and the police fear us: structural and individual barriers and facilitators to HIV medication adherence among injection drug users in Kiev, Ukraine. AIDS Care. 2010;22(11):1305–1313.

Nachega

Morroni

Zuniga

HIV related Stigma, isolation, Discrimination, and Serostatus Disclosure: A Global Survey of 2035 HIV-Infected Adults. J Int Assoc Physicians AIDS Care. 2012;11(3):172–178.

Wolfe

Weiser

Bangsberg

Effects of HIV-related stigma among an early sample of patients receiving antiretroviral therapy in Botswana. AIDS Care. 2006;18(8):931–933.

Bwambale

Ssali

Byaruhanga

Kalyango

Karamagi

CAS

. Voluntary HIV counseling and testing among men in rural western Uganda: implications for HIV prevention. BMC Public Health. 2008;8:263.

10.

Khumalo-Sakutukwa

Morin

Fritz

Project Accept (HPTN 043): a community-based intervention to reduce HIV incidence in populations at risk for HIV in sub-Saharan Africa and Thailand. J Acquir Immune Defic Syndr. 2008;49(4):422–431.

11.

Dlamini

Wantland

Makoae

HIV stigma and missed medications in HIV-positive people in five African countries. AIDS Patient Care STDS. 2009;23(5):377–387.

12.

Sayles

Wong

Kinsler

Martins

Cunningham

. The association of stigma with self-reported access to medical care and antiretroviral therapy adherence in persons living with HIV/AIDS. J Gen Intern Med. 2009;24(10):1101–1108.

13.

Thomas

Rehman

Suryanarayanan

How stigmatizing is stigma in the life of people living with HIV: a study on HIV positive individuals from Chennai, South India. AIDS Care. 2005;17(7):795–801.

14.

Abadia-Barrero

Castro

. Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil. Soc Sci Med. 2006;62(5):1219–1228.

15.

UNAIDS. HIV-related stigma and discrimination: A summary of recent literature. 2009. http://data.unaids.org/pub/Report/2009/20091130_stigmasummary_en.pdf. Accessed July 24, 2012.

16.

Alonzo

Reynolds

. Stigma HIV and AIDS: an exploration and elaboration of stigma trajectory. Soc Sci Med. 1995;41(3):303–315.

17.

Romer

Hornik

. HIV Education for youth: the importance of social consensus in behavior change. AIDS Care. 1992;4(3):285–303.

18.

Romer

Black

Ricardo

Social

influences on the sexual

behavior

youth

at risk for

HIV

exposure. Am J Public Health. 1994;84(6):977–985.

19.

Anderson

Cheney

Clatts

HIV risk behavior, street outreach, and condom use in eight high-risk populations. AIDS Educ Prev. 1996;8(3):191–204.

20.

LaRue

Herrman

. Adolescent stress through the eyes of high-risk teens. Pediatr Nurs. 2008;34(5):375–380.

21.

Elliott

Larson

. Adolescents in mid-sized and rural communities: foregone care, perceived barriers, and risk factors. J Adolesc Health. 2004;35(4):303–309.

22.

Rao

Kekwaletswe

Hosek

Martinez

Rodriguez

. Stigma and social barriers to medication adherence with urban youth living with HIV. AIDS Care. 2007;19(1):28–33.

23.

Suksatit

Stigma Perception and Health Promoting Self-Care Ability of Young Adults With Hiv/Aids [Dissertation]. Bangkok, Thailand: Mahidol University; 2004.

24.

Varas-Diaz

Serrano-Garcia

Toro-Alfonso

AIDS-related stigma and social interaction: Puerto Ricans living with HIV/AIDS. Qual Health Res. 2005;15(2):169–187.

25.

Varga

Brookes

Factors influencing teen mothers' enrollment and participation in prevention of mother-to-child HIV transmission services in Limpopo Province, South Africa. Qual Health Res. 2008;18(6):786–802.

26.

AVERT. Southeast Asia HIV & AIDS statistics. http://www.avert.org/aids-hiv-south-east-asia.htm. Accessed September 1, 2012.

27.

Settheekul

Fongkaew

Soivong

Viseskul

. Health behaviors among young adults living with HIV. Nurs J. 2011;38(2):32–45.

28.

Rongkavilit

Naar-King

Chuenyam

Wang

Wright

Phanuphak

Health risk behaviors among HIV-infected youth in Bangkok, Thailand. J Adolesc Health. 2007;40(4):358.e1–e8.

29.

Apinundecha

Laohasiriwong

Cameron

Lim

A community participation intervention to reduce HIV/AIDS stigma, Nakhon Ratchasima province, northeast Thailand. AIDS Care. 2007;19(9):1157–1165.

30.

Prachakul

Grant

Keltner

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(6):67–76.

31.

Rithpro

Grimes

Senaratana

. HIV positive but not in care: a follow-up study from Thailand. J Int Assoc Physicians AIDS Care. 2012;11(2):91–93.

32.

Rithpho

Grimes

Senaratana

. Known to be positive but not in care: a pilot study from Thailand. J Int Assoc Physicians AIDS Care. 2009;8(3):202–207.

33.

Chasombat

Lertpiriyasuwat

Thanprasertsuk

Suebsaeng

. The National Access to Antiretroviral Program for PHA (NAPHA) in Thailand. Southeast Asian J Trop Med Public Health. 2006;37(4):704–715.

34.

Berger

Ferrans

Lashley

. Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Res Nurs Health. 2001;24(6):518–529.

35.

Ostrom

Serovich

Lim

Mason

. The role of stigma in reasons for HIV disclosure and non-disclosure to children. AIDS Care. 2006;18(1):60–65.

36.

Steward

Herek

Ramakrishna

HIV-related stigma: adapting a theoretical framework for use in India. Soc Sci Med. 2008;67(8):1225–1235.

37.

Dowshen

Binns

Garofalo

. Experiences of HIV-related stigma among young men who have sex with men. AIDS Patient Care STDS. 2009;23(5):371–376.

38.

Bureau of Epidemiology, Department of Disease Control Ministry of Public Health. Annual Epidemiological Surveillance Report 2009. Nonthaburi, Thailand: Department of Disease Control Ministry of Public Health;2010.

39.

Grimes

DE.

Readiness, Trust, and Adherence: A Clinical Perspective. J Int Assoc Physicians AIDS Care. 2012;Epub ahead of print

40.

Miles

Huberman

Qualitative Data Analysis: An Expanded Sourcebook. 2nd ed. Thousand Oaks, CA: Sage; 1994:245-287.

41.

Sabin

DeSilva

Hamer

Barriers to adherence to antiretroviral medication among patients living with HIV in southern China: a qualitative study. AIDS Care. 2008;20(10):1242–1250.

42.

Senaratana

Limtragool

Suwanprapisa

Potjanamart

Tapinta

Development Ability of Individual Family and Community Coping With Death and Dying From AIDS. Chiang Mai, Thailand: Faculty of Nursing, Chiang Mai University; 1999:32-35.

Verifying Quantitative Stigma and Medication Adherence Scales Using Qualitative Methods among Thai Youth Living with HIV/AIDS

Abstract

Keywords

Introduction

Setting

Methods

Procedures

Data Analysis

Results of Quantitative Survey

Respondent characteristics behaviors and adherence

Stigma Perception

Qualitative Findings: Stigma

Disclosure issues

Public attitude to HIV/AIDS

Personalized stigma as expressed in being disappointed and lonely

Personalized stigma as expressed in feeling guilty and sinful

Qualitative Findings: Medication Adherence

Discussion

Study Limitations

Conclusion

Footnotes

Acknowledgments

Declaration of Conflicting Interests

Funding

References