JAIDS Journal of Acquired Immune Deficiency Syndromes:
Epidemiology and Social Science
Mental Health and Disclosure of HIV Status in Zambian Adolescents With HIV Infection: Implications for Peer-Support Programs
Menon, Anitha BA, MA*; Glazebrook, Cristine PhD†; Campain, Nicholas BMed, Sci†; Ngoma, Mary MBChB, FRCP, MRCP‡
From the *Department of Psychology, University of Zambia, Lusaka, Zambia; †Division of Psychiatry, University of Nottingham, Nottingham, United Kingdom; and ‡University Teaching Hospital, Lusaka, Zambia.
Received for publication April 16, 2007; accepted July 24, 2007.
Correspondence to: Cris Glazebrook, PhD, Division of Psychiatry, A Floor, South Block, Queens Medical Centre, Nottingham, NG7 2UH UK (e-mail: firstname.lastname@example.org).
Objectives: To examine emotional and behavioural difficulties in HIV positive Zambian adolescents and to determine the relationship between disclosure of HIV status and mental health.
Design: A cross-sectional survey.
Methods: Participants were 127 HIV positive adolescents aged 11 to 15 years recruited through clinics in the Lusaka region. Mental health was assessed using the youth report version of the Strengths and Difficulties Questionnaire (SDQ). Caregivers completed the parent SDQ. Sixty-two participants were invited for a semi-structured interview which probed views on attending a peer support group.
Results: Compared to a British community sample participants had increased mental health problems (OR, 2.1), particularly emotional symptoms (OR = 3.6) and peer problems (OR = 7.1). The majority of children (n = 94) were receiving antiretroviral (ARV) treatment, but only 48 children (37.8%) had their HIV status disclosed. Those who had not had their HIV status disclosed were younger (P < 0.001) and less likely to be receiving ARV treatment (P < 0.001). Controlling for these factors they were also more likely to score in the abnormal range of the emotional difficulties subscale (OR = 2.63, 95% CI: 1.11 to 6.26). Of 38 interviews transcribed, content analysis showed that only 3 children were opposed to participation in a peer-group program, with the majority (23/38) expressing reasoned and positive responses, regardless of disclosure status.
Conclusion: High rates of emotional and peer problems were found in this sample but disclosure of HIV status did not have a negative effect on mental health. Interventions to promote disclosure could facilitate access to emotional and peer support.
Young people in Zambia have an estimated 50% chance of dying from AIDS,1 and although increased availability and quality of antiretroviral (ARV) medication have substantially reduced this risk,2 the social consequences for young people living with HIV remain to be addressed.3 Evidence from developed countries suggests that children with HIV are at increased risk of developing psychiatric disorders.4,5 For example, one study found that 30% of HIV-positive children and adolescents had been treated with antidepressants in the previous 4 years and 25% had been treated with stimulant-type medication, indicating high rates of behavioral and emotional disturbance.6 Because stress affects disease progression in HIV-infected individuals7 and psychosocial factors have been shown to have clinically significant relations with immune-related outcomes,8 this clearly is a cause for concern. Indeed, recent reviews have highlighted the need for research that examines the psychosocial impact of HIV-AIDS on young people in developing countries.3,9
Arguably, the stigma and secrecy that frequently surround a diagnosis of HIV infection in developing countries are potential barriers to psychologic support. Although the evidence is inconclusive,10 it has been argued that children who are aware of their HIV status have better psychologic adjustment.11,12 Disclosure can facilitate social support from friends and family, which has been shown to play an important role in enhancing coping, self-esteem, and involvement in health-promoting behavior.5,13 Sharing the diagnosis with others has been associated with fewer intrusive disease-related thoughts14 and may directly benefit health. Young people who had recently disclosed their HIV status to friends showed greater improvement in CD4 cell counts at follow-up than those who had self-disclosed before the study or had kept their HIV status secret.15
Disclosure of HIV status remains a controversial issue,16-18 however, and research suggests that deciding if, when, and how to disclose positive HIV serostatus to a child is a significant dilemma for parents, professionals, and other caregivers.19 Consequently, rates of disclosure have been found to be low, and partial or inaccurate disclosure is common.16,20 A recent study in Thailand found that according to caregivers, less than a third of children aged 6 to 15 years had been told their HIV status.21 This is of concern, because knowledge of HIV status provides access to health education and may encourage adherence to treatment.22 A Ugandan study of 42 children aged 5 to 17 years found that in the 12 cases in which there was agreement by caregivers and children that disclosure of positive HIV status had taken place, three quarters of the children were fully adherent to medication.23 In comparison, where disclosure had not taken place, only a fifth of the children were fully adherent. Qualitative data from the same study illustrated how disclosure facilitated adherence, with children identifying the importance of medication and also reporting strategies to overcome barriers to adherence. Furthermore, caregivers in the nondisclosure group clearly acknowledged the difficulty of ensuring adherence when children were unaware of their HIV status. Understandably, however, concerns about the emotional impact of disclosure have proved a strong barrier to informing children of their positive HIV status.23 Disclosure of HIV status in developing countries represents a particular challenge, because resources may not be available to support the provision of appropriate information or to help the child cope with stigma. Group-based interventions seem to offer promising benefits for HIV-positive adolescents,24 but it is not clear whether peer support would prove acceptable in an African context.
This study aimed to examine emotional and behavioral difficulties in HIV-positive Zambian adolescents and to determine the relation between disclosure of HIV status and mental health. It further aimed to explore the acceptability of a peer group intervention in a developing country.
The study was a cross-sectional survey that used qualitative and quantitative methods.
Children were recruited from the Family Support Unit (FSU) at University Teaching Hospital in Lusaka and from 5 clinics in the Lusaka area. Inclusion criteria for the study were HIV-positive status and age from 11 to 15 years. Health care workers identified children meeting the inclusion criteria from clinic lists and approached parents or guardians for consent.
Strengths and Difficulties Questionnaire
A brief screening instrument was administered to parents or caregivers to assess emotional and behavioral problems in children aged 4 to 16 years.25 It consists of 25 items rated on a 3-point scale, with higher scores indicating more problems. The scale comprises 5 subscales (emotional symptoms, conduct problems, hyperactivity/inattention, peer relationship problems, and prosocial behavior). Total Strengths and Difficulties Questionnaire (SDQ), parent version (P), scores (excluding the prosocial subscale) range from 0 to 40. Subscale and total scores can be classified as normal, borderline, or abnormal according to predetermined cutoffs. Internal consistency ranged from 0.82 for the total difficulties score to 0.57 for the peer problems subscale,26 and test-retest reliability was 0.72.26 It has been effective in detecting emotional and behavioral difficulties in pediatric outpatient clinics27 and has been used in a range of cultural settings, including urban African children in Kinshasa.28 The UK English version and a translated version in Nyanja, the local dialect (back translated for verification), were used in the present study.
The SDQ, youth version (Y), can be self-completed by children aged 11 to 15 years and has been shown to discriminate between a community sample of adolescents and those attending a mental health clinic.29 Correlations between the SDQ-P and the SDP-Y of 0.4826 and 0.4630 have been reported, which compares favorably with other self-report measures of adolescent psychopathology.30 Cronbach α-scores ranged from 0.8 for total difficulties to 0.41 for peer problems. The US English version and a Nyanja version were used in the present study.
Demographic and Clinical Information
A structured interview with the child was used to obtain data on age, gender, and family circumstances. Children were also asked whether they thought that they had any health problems. Additional information was obtained from the participants' medical records, and this was used to categorize the child's health status, using a modified version of the World Health Organization (WHO) Clinical Staging of HIV/AIDS for infants and children.31 Stage 1 included absent, mild, or occasional symptoms. Stage 2 included skin disorders, nail infections, and chronic or recurrent symptoms. Stage 3 included tuberculosis (TB), oral thrush, and diarrhea. Stage 4 included symptoms requiring frequent hospitalizations and Kaposi sarcoma.
Feelings About Health
Face-to-face semistructured interviews were used to collect qualitative data exploring participants' feelings about their health and the possibility of participation in a group program with other young people. Only feelings concerning the peer support group have been analyzed for this study.
The study was explained to the caregiver and child, and signed consent was obtained from each by the researcher. The caregiver was asked to complete the SDQ-P, and the child completed the SDQ-Y. The translated versions were used if participants did not have sufficient understanding of English. Caregivers and children were given the option of having the SDQ administered orally. Zambian education is in English, but literacy may be poor and Nyanja is primarily a spoken language. Children recruited in the first month of the study were also asked to participate in a face-to-face interview. Consenting children were interviewed using a semistructured interview schedule. Interviews lasted between 10 and 20 minutes and were recorded using a digital voice recorder.
Statistical analysis was carried out using SPSS version 14.0 for Windows (SPSS, Chicago, IL). SDQ scores were compared using Mann-Whitney U tests for ordinal data and χ2 tests for categoric data. The Spearman ρ was used to test for associations between ordinal variables. Interviews were transcribed in full and subjected to content analysis, where qualitative data are classified according to predetermined categories.32 The children's responses to the question about how they felt about attending a group program with other young people were coded into 1 of 3 responses (definitely like to attend, possibly like to attend, or do not wish to attend). To establish the reliability of the coding, a code book was prepared with examples of the 3 ratings. A second rater was asked to recode 15 of the 38 transcripts. The κ-value was calculated, with a resulting value of 0.792 indicating good interrater reliability.
Ethical approval was obtained from the University of Zambia Research Ethics Committee.
Of the 143 children identified as meeting the inclusion criteria, 127 (89%) were included in the study. No child refused to participate, but consent could not be obtained for 6 cases, 8 children were missed because of time constraints, and demographic information was unavailable for 2 children. Characteristics of the sample are shown in Table 1.
Mental Health Status and Factors Influencing the Strengths and Difficulties Questionnaire
For the SDQ-Y, Cronbach α-scores were acceptable (ie, >0.5)33 for the total score (α = 0.51), the emotional difficulties subscale (α = 0.51), and the conduct problems scale (α = 0.614). The Cronbach α-score was low for the peer problems scale (α = 0.312) and the hyperactivity scale (α = 0.18). For the SDQ-P, the Cronbach α-scores were acceptable for the total score (α = 0.541), emotional difficulties (α = 0.514), and conduct disorders (α = 0.561) but low for peer problems (α = 0.342) and hyperactivity (α = 0.244). There were no significant differences between SDQ-Y and SDQ-P scores (Table 2). There was a modest but significant correlation between the SDQ-Y and SDQ-P total difficulties scores (r = 0.35, n = 126; P < 0.001). In view of the range of caregivers used to complete the SDQ-P, the SDQ-Y was used as the outcome measure in this study.
The proportions of SDQ-Y scores in the borderline or abnormal range were compared between the Zambian sample and an age- and gender-matched British community sample of 4228 children. Young people in the Zambian sample were more than twice as likely to score outside the normal range for the total difficulties score (odds ratio [OR] = 2.1, 95% confidence interval [CI]: 1.4 to 3.1) compared with the UK sample. They were also 3 times more likely to have extreme scores for emotional symptoms (OR = 3.6, 95% CI: 2.5 to 5.4) and 7 times more likely to score in the abnormal range for peer problems (OR = 7.1, 95% CI: 4.9 to 10.2). Rates of conduct disorders were comparable between the groups, but the Zambian sample had less than half the rates of hyperactivity (OR = 0.4, 95% CI: 0.2 to 0.7; Table 3).
Factors Influencing Mental Health
Participants who reported that they had health problems (n = 54, 42.5%) had higher total SDQ-Y scores, indicating more emotional and behavioral difficulties (median = 12.0) compared with those who did not report health problems (median = 9.0). This was found to be significant (z = −2.027; P < 0.05). There was, however, no relation between WHO clinical staging and mental health. Children who had had their HIV status disclosed were older (z = 2.62; P = 0.009) and more likely to be receiving ARV treatment (χ2 = 11.6, df = 1; P = 0.003; Table 4).
Univariate analyses showed no differences in continuous SDQ-Y scores between children who had had their HIV status disclosed and those who were unaware of their status. There were fewer participants in the disclosed group with extreme scores in the borderline or abnormal range for emotional difficulties (18.8% vs. 38.8%, χ2 = 4.1, df = 1; P = 0.04), however. To control for possible confounding factors, a logistic regression analysis was performed with emotional difficulties in the borderline or abnormal range (yes/no) as the dependent variable and age, gender, and disclosure status as the independent variables. Only disclosure status entered into the analysis, with children in the nondisclosure group being more than twice as likely to experience concerning levels of emotional difficulties as those in the disclosed group (OR = 2.63, 95% CI: 1.11 to 6.26).
Acceptability of a Peer-Support Group
Sixty-two children were asked to consent to be interviewed. None refused, but 3 children did not have sufficient facility with English; 1 interview was stopped at the child's request; 7 interviews could not be transcribed because of language difficulties, such as use of local dialect or a strong regional accent; and 13 interviews were discarded because of poor technical quality. Content analysis revealed that 23 of the 38 children were clearly in favor of attending a support group. Some children particularly identified the value of a talking with other children who were HIV-positive. Only 3 children (7.9%) explicitly stated that they did not wish to attend such a group, but none of these children explained their response. The remaining children (12 of 38) expressed some agreement; for example, they said that they would like to participate but gave no justification for response. Preference for attendance was unrelated to disclosure status, with 9 (64%) of 14 children who knew their status definitely wishing to participate compared with 14 (58.3%) of 24 children in the nondisclosed group.
Zambian adolescents with HIV had higher emotional difficulties than found in the age- and gender-matched UK sample. This is in line with previous research in developed countries indicating that children with HIV are at increased risk of mental health problems.4-6,18,34,35 It does not necessarily follow, however, that the emotional difficulties found in this sample result directly from the children's health status. Although a longitudinal study of 96 children infected with HIV found high rates of emotional and behavioral problems, these rates were comparable to those found in the control group of children with similar economic and social disadvantages.36 Emotional difficulties may simply reflect the pressures of life and history of loss in this group. Less than a fifth of children lived with both parents, and most were cared for by another family member, although parental loss was not related to the child's mental health status. A previous study has also found that bereavement was not associated with higher rates of psychologic disorder,17 and it may be that other factors, such as quality of foster care, may be more important determinants of psychologic outcome. Although self-reported health problems were associated with a greater level of total difficulties, it is possible that those with emotional symptoms were more likely to report worries about health, because more objective measures of health status (adapted WHO grading) did not predict mental health. The low rates of externalizing problems, particularly hyperactivity, are at odds with studies of young disadvantaged groups in developed countries37,38 and may represent cultural differences in responses to stress.
Zambian adolescents seemed to have particular problems with relationships with other young people, with more than 7 times the risk of experiencing peer problems as assessed by the SDQ. This may be an artifact of the assessment, because the SDQ has not been previously validated for use in a Zambian sample. Indeed, as in previous studies, the internal consistency for the peer problems subscale was low.28 Although the use of British norms as a comparison is an obvious limitation of the study, there were no significant differences between parental and child scores for peer problems and no evidence of generalized overreporting of difficulties, because the conduct problems and prosocial scores were comparable to UK scores. Peer problems may be exacerbated by stigma associated with HIV.
This study found low rates of disclosure in young adolescents with HIV regardless of whether they were receiving ARV therapy. Studies in other developing countries have also reported low levels of disclosure.21,23,39 In developed countries, estimates of rates of disclosure vary, depending to some extent on the age of the children studied.9,10 For example, one North American study found that although only a quarter of younger children were aware of their HIV status, only 1 child (5%) in the age range from 11 to 17 years had not been informed.40 There is evidence that the belief that knowledge of HIV status would be psychologically damaging can act as a barrier to disclosure.39 Concern to protect the child and the family from associated stigma is another potential barrier.41
There is no evidence in this study that knowledge of HIV status had a negative impact on mental health. Indeed, those who were aware of their status were more than 2.5 times less likely to score in the abnormal range for emotional difficulties, even after controlling for age, gender, and medication. There has been little previous research concerning the impact of disclosure of HIV status to young people within sub-Saharan Africa,42 and results from studies in developed countries are inconclusive.43 Although some previous findings from the United States have also provided evidence that disclosure does not represent a risk to mental health,11,18 other studies have suggested poorer outcomes. A recent study of 57 children aged 6 to 12 years found a higher incidence of internalizing and externalizing symptoms in children who were aware of their status.37 Another US study found a 6-fold increase in rates of admission for psychiatric disorders in children who knew their HIV status.4
There is a strong presumption in the medical literature that adolescents, in particular, should be informed of their HIV status to promote adherence to treatment and to encourage safe sexual practices.41,44,45 The role of disclosure in promoting access to psychologic support has received less attention. Although self-disclosure to others has been shown to enhance well-being11,15 and peer support interventions have also shown promising results,24 the potential role of peer support within developing countries has not been explored. Regardless of disclosure status, only 3 young people in our study would not have been prepared to take part in a group intervention, with most giving reasoned and clearly affirmative responses. These results suggest that the development of peer group programs would be an acceptable strategy for promoting mental health in Zambian adolescents. Arguably, the availability of such programs could also provide the impetus and support for disclosure of HIV status.
Strengths and Weaknesses of the Study
The strengths of this study are its relatively large sample size and use of standardized measures to assess emotional well-being. As with previous research, however, this is cross-sectional study; thus, it is not possible to infer that disclosure of HIV status confers psychologic advantages. It may be that more psychologically stable children are more likely to have their HIV status disclosed or that families who choose to disclose have children with fewer emotional difficulties. Lester and colleagues17 found that children with higher IQs and families rated higher on expressiveness experienced earlier disclosure. The SDQ has not been validated for use in a Zambian population, which is a further limitation; thus, the findings from this screening tool must be treated with some caution.
This study found evidence of high rates of emotional difficulties and peer problems in HIV-positive adolescents. Rates of disclosure were low, but those who had been informed about their HIV status were less likely to have emotional problems. Young people were positive about participation in a peer group program, and such an intervention could promote disclosure by providing access to psychologic support.
The authors thank Pauline Siawenabo, Yugi Simambwe, and Charity Vule for help with data collection and translation. They also gratefully acknowledge the assistance of staff at the FSU, University Teaching Hospital, and Lusaka District community clinics. Most importantly, they thank the young people and their caregivers who so willingly gave up their time to take part in the study.
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