# Perceived stigma by children on antiretroviral treatment in Cambodia.

Hubert Barennes, Sovann Tat, Daniel Reinharz, Ung Vibol

► To cite this version:

Hubert Barennes, Sovann Tat, Daniel Reinharz, Ung Vibol. Perceived stigma by children on antiretroviral treatment in Cambodia. BMC Pediatrics, 2014, 14 (1), pp.300. 10.1186/s12887-014-0300-9. inserm-01122625

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# Perceived stigma by children on antiretroviral treatment in Cambodia

Hubert Barennes<fnref n="1" />,<fnref n="2" />,³,⁴*, Sovann Tat<fnref n="1" />,⁵, Daniel Reinharz<fnref n="2" />,⁶ and Ung Vibol⁷

**Abstract**

**Background:** HIV-related stigma diminishes the quality of life of affected patients. Little is known about perceived and enacted stigma of HIV-infected children in resources-limited settings. We documented the prevalence of perceived stigma and associated factors associated among children on antiretroviral therapy (ART) at a referral hospital in Cambodia.

**Methods:** After informed consent, a standardized pre-tested 47-item questionnaire was confidentially administered to consecutive children (7 to 15 years) or their guardians if the child was 18 months to 6 years, during their routine ART visits. The questionnaire explored the sociodemographics of the child and the parents, HIV history, adherence to ART, tolerance of ART and perceived stigma. Associations between perceived stigma and the children's characteristics were measured by bivariate and multivariate analyses.

**Results:** Of 183 children, 101 (55.2%) had lost at least one and 45 (24.6%) both parents; 166 (90.7%) went to school. Of 183 children (female: 84, 45.9%, median age 7.0 years, interquartile range: 2.0-9.6), 79 (43.2%) experienced perceived stigma, including rejection by others (26.8%), no invitations to social activities (18.6%) and exclusion from games (14.2%). A total of 43 (23.5%) children were fearful of their disease and 61 (53.9%) of 113 older than 6 years reported knowledge of their HIV status. Of 136 children over five years and eligible for education, 7 (3.8%) could not go to school due to perceived stigma. Incomplete adherence to ART was reported for 17 (9.2%) children. In multivariate analysis, school attendance (odds ratio [OR]: 3.9; 95% confidence interval [CI]: 2.0-7.9) and income of less than one dollar per person per day (OR: 2.2, 95% CI: 1.1-4.5) were associated with perceived stigma. Conversely, receipt of social support (OR: 0.4, 95% CI 0.2-0.9) was associated with lower risk of perceived stigma.

**Conclusion:** Perceived stigma in pediatric ART patients remains a significant issue in Cambodia. Psychological support and interventions should be developed in hospitals, schools, and underprivileged communities to prevent HIV-related stigma for affected children.

**Keywords:** AIDS, Cambodia, Children, Discrimination, Exclusion, HIV, Perceived stigma, School, Stigma, Stigmatization

**Background**

Stigma and discrimination associated with HIV and AIDS are complex concepts that result in a process of devaluation or loss of status and discrimination for people either living with or associated with HIV and AIDS [1]. Stigma contributes to the hidden burden of disease [2]. Discrimination refers to the unfair and unjust treatment of an individual based on his/her real or

perceived HIV status [1]. Different types of HIV/AIDS stigma have been described: perceived stigma, enacted stigma, internalized stigma, and associative stigma [1,3]. Perceived stigma corresponds to felt stigma and refers to all types of stigmatizing attitudes or behavior towards People Living with HIV/AIDS (PLWHA), as experienced or perceived by themselves or others. Enacted stigma refers to the real experience of discrimination experienced by the target of stigma. Internalized stigma involves thoughts and behavior stemming from a person's own negative perceptions about himself/herself because of their HIV status [1,3]. Associative stigma (also called secondary stigma) refers to stigma that results from a

<footnote>* Correspondence: barenneshub@yahoo.fr</footnote>

<footnote n="1">¹Agence Nationale de Recherche sur le VIH et les Hepatites, Preah Monyvong 5 Blvd, Phnom Penh, Cambodia</footnote>

<footnote n="2">²Institut Francophone pour la Mdecine Tropicale, Vientiane, Vientiane, Lao PDR</footnote>

<footnote>Full list of author information is available at the end of the article</footnote>
disease? Perceived stigmatization was recorded as positive if any of the questions were answered in the affirmative.

Incomplete adherence to treatment was evaluated by the recall of missed treatment in the preceding 4 days and the preceding 30 days, with both measures dichotomized as 100% vs. <100% adherent.

Data relating to the child's HIV status, disease history and treatment was retrieved from hospital records after the interview. The child's health status was confirmed by the physician on duty. The evolution of the child's health since the onset of treatment was reported by the parents/guardians (improved, deteriorated, stable).

## Definitions

Poverty was defined as earning less than one U.S. dollar per person per day. Single orphans were children whose mother or father had died and double orphans were those who had lost both parents to HIV/AIDS.

## Sample size

Using Stata Version 8 (Stata Cooperation, College Station, TX), a required sample size of 189 people was calculated. As no published data to calculate the sample size was available, we assumed that 50% of children knew about their disease and that half of the sample (40%) would report perceived stigma. To detect a perceived stigma rate between 30 and 40% we calculated that a total of 172 children was needed with 10% precision, $\alpha = 0.05$, power 80%. We added 17 children (10%) for non-exploitable files raising the total number to 189 children.

## Data management and analysis

Data were entered in Epidata freeware (www.epidata.dk, Odense, Denmark) and cross-checked against original data sheets. We used open-ended questions to determine occupations, reasons for missed appointments, difficulties in treatment, etc. All responses were recorded and eventually categorized by common themes. A new variable was created for each common theme using a 0-1 classification and tested in univariate analysis.

Analyses were carried out with Stata software, Version 8 (Stata Corporation, College Station, TX, USA). Chi² or Fisher's exact test were used to assess associations between categorical variables as appropriate, and Students t-test for two normally distributed continuous variables. $P \le 0.05$ was considered significant. Associations between perceived stigma and children's characteristics were initially measured using bivariate analyses (age over 7 and 10 years, sex, socio-economic conditions, death of one or both parents, schooling, time since diagnosis and ART, tolerance to ART, and adherence to treatment). Multivariate analyses between perceived stigma and children's characteristics were conducted initially by introducing into the model the variables significantly associated with

perceived stigma (those with *p*-values <0.2, Tables 1 and 2). Then, a back-step selection procedure using odd ratios (OR) was used to leave only those with a *p*-value <0.05 in the final model. Secondary multivariate analyses were conducted among children older than 10 years who had more knowledge about HIV-related diseases and psychosocial needs and among children living with parents, or without one or both of them.

## Ethics statement

The study was authorized by the National Pediatric hospital authorities. Ethical approval was granted by the Lao Medical Ethics Committee. The study complied with the Cambodian law on personal protection of PLWHA. Children and parents/guardians were informed about the study in Khmer language and given an information sheet describing the study. Children were included if they consented to participate and if their parents/guardians had given written informed consent. Confidentiality was guaranteed and interviews were conducted in a private room. Data was recorded anonymously.

## Results

There were no refusals to participate to the survey. A total of 183 children were enrolled in the survey and were interviewed with the help of 138 parents (75.4%) and 45 guardians (24.6%). Their social and treatment characteristics and their relationships with perceived stigma are shown in Table 1. Of 183 children, 101 (55.2%) had lost one parent and 45 had lost both (24.6%).

A total of 44 (24.0%) children was cared for by their grandmothers, 30 (16.4%) by some other member of the family, and 10 (5.5%) children by a non-governmental organization (NGO).

A total of 52 (28.4%) families and their children received some social support; 37 (20.2%) children received help for transportation to hospital, another 12 (6.6%) for food and transportation and 3 (1.6%) of them global assistance from an NGO.

All but two children were on first-line ART (152, 84.0% on 3TC + D4T + NVP; 23, 12.6% on 3TC + ZDV + NVP; 8, 4.3% on 3TC + D4T + EFV). Another two were on second-line ART (kaletra + DDI + ABC). The mean duration on ART was 36.8 [33.2-40.4] months. Median CD4 percentage was 9.0% (95% CI: 8.26-10.3) at initiation of ART, and 16.4% (95% CI: 15.0-17.7) at 6 months (n = 156), 19.5% (95% CI: 17.9-21.1) at 12 months (n = 104). The time since diagnosis, duration of ART of median CD4 at initiation of ART and after 12 months were not significantly associated with perceived stigma.

According to medical records and the ward physician, three children (1.6%) were in a severe condition (life threatening) and 10 (5.5%) children had opportunistic infections.
<table><caption>Table 1 Socio-demographic characteristics of children on ART and reports of or non report of perceived stigma at National Pediatric Hospital</caption><thead><tr><th></th><th>Perceived stigma<br>n = 79 (43.2%)</th><th>No perceived stigma<br>n = 104 (56.8%)</th><th>Odd ratio (95% CI)</th><th>p</th><th>Total<br>n = 183 (100%)</th></tr></thead><tbody><tr><td>Females</td><td>33 (41.7)</td><td>51 (49.0)</td><td>0.7 (0.3-1.4)</td><td>0.3</td><td>84 (45.9)</td></tr><tr><td>Median age in years (IQ range)</td><td>7.9<br>[6.0-9.8]</td><td>6.1<br>[3.5-9.0]</td><td>-</td><td>0.002</td><td>7.0<br>[2.0-9.6]</td></tr><tr><td><strong>Age over 7 years</strong></td><td>59 (74.6)</td><td>54 (51.9)</td><td>2.73 (1.4-5.4)</td><td>0.001</td><td>113 (61.7)</td></tr><tr><td><strong>Live in main city</strong></td><td>53 (67.0)</td><td>79 (75.9)</td><td>0.6 (0.3-1.3)</td><td>0.18</td><td>132 (72.1)</td></tr><tr><td>Single orphan, mother died</td><td>28 (35.4)</td><td>36 (34.6)</td><td>1.0 (0.5-2.0)</td><td>0.9</td><td>64 (34.9)</td></tr><tr><td><strong>Single orphan, father died</strong></td><td>39 (49.4)</td><td>43 (41.3)</td><td>1.3 (0.7-2.5)</td><td>0.2</td><td>82 (44.8)</td></tr><tr><td>Double orphans</td><td>21 (26.6)</td><td>24 (23.1)</td><td>1.2 (0.5-2.5)</td><td>0.5</td><td>45 (24.6)</td></tr><tr><td>Parents with HIV</td><td>67 (84.8)</td><td>83 (79.8)</td><td>1.4 (0.6-3.3)</td><td>0.3</td><td>150 (81.9)</td></tr><tr><td>-Mother with HIV</td><td>61 (77.2)</td><td>76 (73.1)</td><td>1.2 (0.6-2.6)</td><td>0.5</td><td>137 (74.9)</td></tr><tr><td>Parents occupation</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>-Low skill worker (Father)*</td><td>49 (62.0)</td><td>64 (61.5)</td><td>1.0 (0.5-1.9)</td><td>0.9</td><td>113 (61.7)</td></tr><tr><td>-Low skill worker (Mother)</td><td>70 (88.6)</td><td>93 (89.4)</td><td>0.9 (0.3-2.6)</td><td>0.8</td><td>163 (89.1)</td></tr><tr><td>Parents education (Father)</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>Illiterate</td><td>11 (13.9)</td><td>16 (15.4)</td><td>0.8 (0.3-2.1)</td><td>0.7</td><td>27 (14.7)</td></tr><tr><td><strong>Primary</strong></td><td>22 (27.8)</td><td>37 (35.6)</td><td>0.6 (0.3-1.3)</td><td>0.2</td><td>59 (32.2)</td></tr><tr><td>Parents education (Mother)</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>Illiterate</td><td>23 (29.1)</td><td>37 (35.6)</td><td>0.7 (0.3-1.4)</td><td>0.3</td><td>60 (32.8)</td></tr><tr><td>-Primary (Mother)</td><td>57 (72.1)</td><td>79 (75.9)</td><td>0.8 (0.3-1.6)</td><td>0.5</td><td>136 (74.3)</td></tr><tr><td><strong>Living on less than $1 US/day</strong></td><td>61 (77.2)</td><td>69 (66.3)</td><td>1.7 (0.8-3.5)</td><td>0.1</td><td>130 (71.0)</td></tr><tr><td><strong>Social support**</strong></td><td>16 (20.2%)</td><td>36 (34.6%)</td><td>0.4 (0.2-0.9)</td><td>0.03</td><td>52 (28.4%)</td></tr><tr><td>Go to school (over 5 yrs)***</td><td>60 (89.5)</td><td>51 (73.9)</td><td>3.0 (1.0-9.2)</td><td>0.01</td><td>111 (81.6)</td></tr><tr><td><strong>Go to school****</strong></td><td>67 (84.8)<br>[30.1-42.8]</td><td>69 (66.3)<br>[27.8-37.1]</td><td>2.8 (1.2-6.4)</td><td>0.004</td><td>136 (74.3)</td></tr><tr><td>Time since HIV diagnosis (months)</td><td>36.5<br>[30.1-42.8]</td><td>32.5<br>[27.8-37.1]</td><td>-</td><td>0.3</td><td>34.2<br>[30.4-38.0]</td></tr><tr><td>Duration of ART (months)</td><td>36.6<br>[31.1-42.0]</td><td>36.9<br>[32.0-41.9]</td><td>-</td><td>0.9</td><td>36.8<br>[33.2-40.4]</td></tr><tr><td>Mean CD4 at 12 months (N = 104)</td><td>19.4<br>[16.9-22.0]</td><td>19.5<br>[17.4-21.6]</td><td>-</td><td>0.9</td><td>19.5<br>[17.8-21.1]</td></tr><tr><td>Decreased ART adherence</td><td>8 (10.1)</td><td>9 (8.6)</td><td>1.1 (0.3-3.6)</td><td>0.7</td><td>17 (9.3)</td></tr></tbody></table>

Variables in bold with p < 0.2 were included in the multivariate analyses.

CI: Confidence interval. Numbers and (percentages). Median and (interquartile range), Mean and [95% confidence interval].

*Low skill workers were: farmers, workers or factory worker, moto-taxi driver, housework.

**Mostly transportation fees and food supplements.

***Of 136 children (67 with stigma and 69 no stigma) aged over 5 years eligible for education.

****All children included in the survey.

Only seven (3.8%) children took their dosage by themselves. Of 183 children, 18 (9.8%) had minor side effects (4 nausea, 5 rash and the others either fever or unspecific pain); 40 (21.9%) spat up their drugs: 8 frequently (4.4%); 32 rarely (17.5%). A 100% adherence to ART was reported among 166 children (90.7%). Decreased adherence was reported by 11 (6.0%) for the 4-day and 8 (4.4%) for the 30-day measures. Only 3 (1.6%) had

missed appointments at the hospital (2 forgot, one did not want to go). Decreased adherence was not associated with perceived stigma (The estimated power on this variable was only 32%). The main difficulties regarding treatment were related to: 1) going to the hospital (113, 61.7%), 2) swallowing drugs (23, 12.6%), 3) taste of the drugs (14, 7.6%), 4) lack of money and transportation means (13, 7.1%), and 5) child depression (3, 1.6%).
<table><caption>Table 2 Perception of disease and perceived stigma of children on ART at National Pediatric Hospital</caption><thead><tr><th></th><th>Perceived stigma</th><th>No perceived stigma</th><th>p</th><th>Total</th></tr></thead><tbody><tr><td></td><td>79<br>(43.2%)</td><td>104<br>(56.8%)</td><td></td><td>183</td></tr><tr><td><strong>Knows his disease*</strong></td><td>31 (39.2)</td><td>30 (28.8)</td><td>0.1</td><td>61 (53.9)</td></tr><tr><td><strong>Afraid of his/her disease</strong></td><td>23 (29.1)</td><td>20 (19.2)</td><td>0.2</td><td>43 (23.5)</td></tr><tr><td>Stigma</td><td></td><td></td><td></td><td></td></tr><tr><td>Because of his/her disease:</td><td></td><td></td><td></td><td></td></tr><tr><td>Does not play with others</td><td>26 (32.9)</td><td>0</td><td></td><td>26 (14.2)</td></tr><tr><td>Not integrated in the area</td><td>36 (45.6)</td><td>0</td><td></td><td>36 (19.7)</td></tr><tr><td>Not invited by others</td><td>34 (43.0)</td><td>0</td><td></td><td>34 (18.6)</td></tr><tr><td>Rejected by others</td><td>49 (62.0)</td><td>0</td><td></td><td>49 (26.8)</td></tr></tbody></table>

Variables in bold were included in the multivariate analyses. Numbers and (percentages).

A total of 166 (90.7%) children went to kindergarten or school. Among 136 children over 7 years, 7(3.8%) reported not going to school due to perceived stigma.

Of 113 children older than 6 years, 61 (53.9%) reported knowledge of their HIV status (Table 2). A total of 43 (23.5%) children were fearful of their disease. Fear of the disease was strongly associated with children who answered that they knew the name of their disease (1, 0.8% versus 42, 97.7%; p < 0.000). The precise reason for fear was not assessed by the interviewer.

A total of 53 children (28.9%) were over 10 years old and 28 (52.8%) reported perceived stigma.

Of 183 children, 79 (43.2%) reported perceived stigma (Table 2). Because of the child's current disease, 49 (26.8%) were rejected by others, 36 (19.7%) reported lack of integration into their community, 34 (18.6%) were not invited by others to join activities, 26 (14.2%) did not play with others. Among those aged over 7 years who attended school and answered the questions (n = 103), 43 (41.7%) complained of being rejected because of their disease. The HIV status of parents, the death of one or both parents, the knowledge or fear of the disease were not significantly associated with perceived stigma.

The multivariate regression analyses showed that receiving some kind of social support was an independent factor associated with a decreased risk of perceived stigma (OR: 0.44, 95% CI 0.2-0.9), while attending school (OR: 3.9, 95% CI 2.0-7.9), or living on less than one dollar a day (OR: 2.2, 95% CI 1.1-4.5) was associated with an increased risk of perceived stigma (Table 3).

For children over 10 years, the final multivariate regression analyses showed that only poverty (OR: 4.7, 95% CI 1.2-17.6, p = 0.02) was independently positively associated with perceived stigma. However, receiving support (OR: 0.2, 95% CI 0.8-1.2, p = 0.09) showed a trend of negative association with perceived stigma.

Receiving support was negatively associated with perceived stigma if the father (OR: 0.2, 95% CI 0.09-0.6,

p = 0.003) or mother was dead (OR: 0.3, 95%CI 0.1-1.0, p = 0.07).

For double orphans, the final multivariate analysis showed that having one parent with known HIV (OR: 4.2, 95% CI 1.0-16.3, p = 0.03) was independently positively associated with perceived stigma, and living in Phnom Penh (OR: 0.2, 95% CI 0.6-0.9, p = 0.03) was negatively associated with perceived stigma.

## Discussion

Surveys assessing stigma or stigma-related interventions in children living with HIV are uncommon in Asia [4,13,24-27]. This is the first study on this subject in Cambodia. This study was restricted to perceived stigma, and shows that 43.2% of children experienced HIV-related perceived stigma. This survey shows that perceived stigma and fear of being stigmatized are important social problems for children on ART in Cambodia.

However, despite the alarming rate of stigmatisation it is encouraging that most children (81.6%) of a school going age, could attend an educational institution. Only a minority 7 (5.14%) of interviewees stated that perceived stigma was the reason for being excluded from school. This figure is consistent with the recent *People Living with HIV Stigma Index Cambodia* study which reported that 4% of their children were excluded from

<table><caption>Table 3 Risk factors associated with perceived stigma in children, multivariate analysis, National Pediatric Hospital, Cambodia</caption><thead><tr><th>Stigma</th><th>Odds ratio</th><th>95% CI.</th><th>z</th><th>P > z</th></tr></thead><tbody><tr><td>Social support</td><td>0.44</td><td>0.2-0.9</td><td>-2.23</td><td>0.026</td></tr><tr><td>Go to school</td><td>3.99</td><td>2.0-7.9</td><td>3.95</td><td>0.000</td></tr><tr><td>Less than 1 US$/day</td><td>2.23</td><td>1.1-4.5</td><td>2.22</td><td>0.027</td></tr></tbody></table>

CI: Confidence interval.

Variables <0.02 in bold in Tables 1 and 2 were introduced into the model. ORs are only shown for variables forced into the model and those remaining in the model.

<footnote>*Of 113 children older than 6 years.</footnote>
school because of stigma and similar to figures described
in 25 provinces of China [28]. This is consistent with
UNAIDS report than showed that as a consequence of
stigma, some HIV-infected children still face restricted
access to school while the majority face some type of ex-
clusion [1].

Of concern is the fact that going to school was one of
three main factors associated with perceived stigma. In
fact, young children living with HIV are known to be
prone to rejection and are perceived as different but few
studies have explored stigma among schoolchildren [29].
In addition, fear of transmission, and misconceptions of
the disease have been reported as reasons for stigma-
tization at school [30]. The results of our study suggest
to further address enacted stigma and coping mecha-
nisms at school; two issues that were not addressed in
the study. Increasing children's knowledge and dispelling
myths about HIV/AIDS may reduce stigma and discri-
mination at school. In Thailand children's attitudes have
become more supportive of their HIV/AIDS affected
peers after the implementation of HIV/AIDS prevention
education at schools [31].

However, it has been suggested to start intervention
early in primary school before the challenging period of
adolescence [32]. Interestingly, among the 53 children
above 10 years, schools did not appear a significant fac-
tor in perceived stigma but this could be linked to our
limited subsample.

Our findings show that poverty and support were
diametrically associated with higher or lower perceived
stigma. Poverty has been frequently associated with
stigma [25,27]. In fact, privacy about a child's HIV status
[10] is virtually impossible when living in poor condi-
tions (10 were living in slums). Hence it is impossible to
avoid disease disclosure to neighbours and as a conse-
quence stigmatization is an issue highly feared by the
families. The issue of poverty is critical to mitigating the
negative impact of HIV and AIDS on children and
households but this area clearly needs intervention
[13]. Our results suggest developing an intervention to
decrease stigma in children by targeting particularly
underprivileged communities where HIV-affected chil-
dren live. For affected children some interventions such
as psychosocial support, education in coping strategies,
and peer support groups have been proposed and have
demonstrated a significant reduction in HIV-related
stigma [33]. For the community, emphasis has been on
education campaigns through provision of factual infor-
mation about children who suffer from HIV/AIDS. Since
the survey, an intervention including a psychosocial
support, peer groups and HIV education was developed
on a small scale for children attending the NPH and
showed promising results but had to be discontinued for
financial reasons (HB, personal communication).

The average adherence to treatment was over 90%.
Unlike adults, stigma did not negatively influence adhe-
rence to ART [8]. This can be explained by the fact that
treatment was mostly given by adults to 96.2% of the chil-
dren and a possible result of the communication strategies
of the Cambodias human immunodeficiency virus pro-
gram (NCHADS, National Center for HIV/AIDS, Derma-
tology and STD, Sexual Transmissible Disease) [17].

A group of three children reported depression as the
cause for missed hospital appointments. In fact the psy-
chosocial dimensions of children's depression and psy-
chological troubles were not specifically assessed in this
survey. These preliminary results point out the necessity
for evaluating psychological needs further and probably
to improve the offer of an integrated psychological care
at children's HIV clinics [27]. There is limited experience
on this issue in Cambodia which needs to be scaled up.
The vulnerability of HIV/AIDS affected children to psy-
chological disorders of various degrees has been pre-
viously shown, but rarely in Asia [27,34]. Internal stigma
may be associated with increased stress and psycho-
logical problems in children [35]. It was also shown that
experiencing stigma and the children's perception of the
public's stigma against PLWHA are generally stronger
predictors of psychological problems than their own
feelings or attitudes towards PLWHA [36]. Offering in-
tegrated psychological care will require the training of
psychologists, their integration into health facilities and
the development of psychosocial programs.

Unlike other children who had one parent dead, the
multivariate analysis showed that living in Phnom Penh
(OR: 0.2, 95% CI 0.6-0.9, p = 0.03) was negatively associa-
ted with perceived stigma for double orphans. To answer
this issue the Cambodias human immunodeficiency virus
program launched the 3.0 framework which target zero
discrimination. This included systematic linkages between
the community and health facilities through the in-
volvement of existing home based care teams and health
centers. This is considered to contribute greatly to the re-
duction of stigma and discrimination by increasing aware-
ness that AIDS is no longer a death sentence [37].

Despite 45 (24.5%) children being orphans (both parents),
only 10 (5.46%) of them were living in an institution. The
majority were being cared for by family members. This
result raises the question regarding the relationship bet-
ween care providers, families and perceived stigma. In fact,
the limited sample size did not allow comparing perceived
stigma differences between institutions or community-
based caregivers and families. A survey done in five low
income nations, including Cambodia, showed that HIV-
related stigma of orphans and abandoned children was
lower among institution-based caregivers than among
those who were community-based. It was also higher
amongst older but lower educated caregivers [38]. The
role of families as a barrier to stigma was not documented
in this multicentric survey. We previously showed that
stigma was lower among families with a patient suffering
from other stigmatized diseases (such as epilepsy) than
among the general population [35]. The contribution of
families in decreasing stigma and misconceptions through-
out the population is still to be addressed.

Perspectives

Our findings show that basic social support is a protective
factor against children's perceived stigma. This corrobor-
rates a few studies suggesting that social and psychological
support can decrease the burden of stigma in children, in-
cluding depression [14,25]. We provided some discussion
regarding target and priorities and future researches in the
previous paragraph. The literature shows that interven-
tions to reduce AIDS stigma are likely to be more effective
if they are context-specific and sensitive to the prevailing
sociocultural and economic environment of each country
[9]. Several community-based interventions with multiple
activities, including awareness raising, sensitization and
community participation and interaction, and peer sup-
port groups demonstrated significant changes in develop-
ping countries [1,39]. However, they rarely target children
in their community and are often implemented on a small
scale [1]. They also rarely address the impact of perceived
stigma and global stigma on children's adherence, clinical
outcomes, development and quality of life. Our results
and the literature suggest that in Cambodia, increasing so-
cial and psychosocial interventions, addressing stigma in
schools and among populations living below the poverty
line, should be considered [1,3,40]. A recent review sug-
gests that combining various strategies to reduce stigma
may have greater impact in enhancing participants under-
standing about the effect of HIV/AIDS stigma in at-risk
populations [13,41].

Limitations of the survey

This survey has several limitations. The limited sample
size, the restriction of the study to perceived stigma and
use of a non-validated scale for perceived stigma were
limits of the survey. The questionnaire and scale were
pre-tested only for accuracy and comprehension. We
adapted the Jacoby scale that was validated for another
disease. Its advantage was to allow a rapid assessment,
to be adapted to children and that we had some expe-
rience with it. This was considered important due to the
time frame and conditions of the study and also in order
not to impact on the children own perception of his/her
disease.

Hence, the questionnaire was not able to describe all
components of stigma or describe stigma experiences.
This brief and preliminary investigation of perceived

stigma in children will benefit from further in-depth
documentation [42-44].

Additionally, perceived stigma was possibly underesti-
mated by asking the questions of caregivers for orphaned
children below 7 years. Caregivers answers about the chil-
dren's feelings might be regarded as approximate and not
completely reflecting the opinion of the children.

Due to time and budget constraints it was not possible
to design a study with a representative population. This
is a limitation that was possibly minimized by the fact
than nearly half of the children (39.8%) came from va-
rious provinces.

The time frame of the study, which was conducted some
time ago, could also be considered a limitation. In fact,
according to Cambodian pediatricians and patients fa-
milies, fear of the stigmatization remains a major problem
for children in 2014 (Personal communications to H.
Barennes and Ung Vibol). This issue was recently docu-
mented, for adults, in the *People Living with HIV Stigma*
*Index Cambodia* study [19]. A majority of parents do not
wish to disclose their HIV status for fear of further stig-
matization, discrimination and potential harm to their
families.

Conclusion

Perceived stigma in pediatric ART patients remains a sig-
nificant issue in Cambodia. Social support for children
helps them to cope with perceived stigma. Community-
wide stigma reduction program and psychological support
should be part of the holistic care efforts for children living
with HIV. Education programs should focus on prevention
of stigma at school, in hospitals and in underprivileged
communities in Cambodia. Further research is required to
better understand other aspects of stigma within the chil-
dren's community and to identify key opinion groups and
effective strategies that would help decrease stigma among
children living with HIV.

Abbreviations

ART: Antiretroviral therapy; CI: Confidence interval; HIV: Human immunodeficiency virus; OR: Odds ratio; NPH: National Pediatric Hospital; NCHADS: National center for HIV/AIDS, Dermatology and STD, Sexual transmissible disease; PLWHA: People living with HIV/AIDS.

Competing interests

The authors declare that they have no competing interests.

Authors contributions

HB designed the study, supervised the study, performed the statistical analysis and drafted the manuscript. ST participated in the study design, performed the investigation and contributed to the primary statistical analysis. DR contributed to the supervision of the study and primary statistical analysis. UV contributed to the designed study, participated to the investigation. All authors read and approved the final manuscript.

Acknowledgements

This work was part of a master's study (ST) by Institut Francophone pour la Mdecine Tropicale (IFMT, Vientiane, Laos). We thank IFMT teachers for their help. We thank the National Pediatric Hospital staff in Cambodia for their
support. We thank all the families and children and people who participated in the surveys. We thank P Aaron, S Goyet and L Srour for advice and editing.

IFMT, the funding agency, had no role in the decision of preparing, analyzing and publishing the paper. Opinions expressed in the paper do not represent the opinion of funding agency.

## Author details

¹Agence Nationale de Recherche sur le VIH et les Hepatites, Preah Monyvong 5 Blvd, Phnom Penh, Cambodia. ²Institut Francophone pour la Mdecine Tropicale, Vientiane, Vientiane, Lao PDR. ³ISPD, Centre INSERM U897-Epidemiologie-Biostatistique, Univ. Bordeaux, F-33000 Bordeaux, France. ⁴Epidemiology Unit, Pasteur Institute, Phnom Penh, Cambodia. ⁵Stung Treng Regional Training Center for Nursing and Midwifery Cambodia, Stung Treng, Cambodia. ⁶Département de mdecine sociale et preventive, Universit Laval, Quebec, Canada. ⁷University of Health Science, Phnom Penh, Cambodia.

Received: 15 May 2014 Accepted: 19 November 2014

Published online: 10 December 2014

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doi:10.1186/s12887-014-0300-9

Cite this article as: Barennes *et al*. Perceived stigma by children on antiretroviral treatment in Cambodia. *BMC Pediatrics* 2014 **14**:300.

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