Skip to main content

HIV-Related Shame, Stigma and the Mental Health Functioning of Adolescents Living with HIV: Findings from a Pilot Study in Uganda

Abstract

This study examined the relationship between HIV-related shame, stigma and the mental health of adolescents (10–14 years) living with HIV in Uganda. Cross sectional data from a 2-year pilot study for adolescents living with HIV (N = 89) were analyzed. Multiple linear regression analyses were conducted to determine the relation between HIV-related shame, as measured by the Shame Questionnaire, stigma, and adolescents’ mental health functioning, including depressive symptoms, hopelessness, PTSD symptoms, loneliness and self-concept. The average age was 12.2 years, and 56% of participants were female. HIV-related shame was associated with higher levels of depressive symptoms (p < 0.05), hopelessness (p < 0.001), PTSD symptoms (p < 0.001), loneliness (p < 0.01), and low levels of self-concept (p < 0.01). HIV stigma was not associated with any of the outcomes. Findings support the need for the development of strategies to help adolescents overcome the shame of living with HIV and mitigate the effects of shame on adolescents’ mental health and treatment outcomes.

Introduction

Shame—defined as a self-conscious emotion resulting from negative self-evaluation following a perceived deviation from a social or moral code [1, 2], is a public health concern. Shame is characterized by a painful internalized emotion encompassing feelings that the self is damaged and defective [3, 4], and is accompanied by feelings of worthlessness, rejection, isolation and the desire to disappear [5]. Compared to stigma—which involves experiences of blame, exclusion and rejection due to other people’s negative social judgement [6,7,8], shame is an internally constructed emotional response that may be influenced by stigmatizing attitudes, especially once internalized [9]. Given that adolescence is a developmental period of multiple vulnerabilities marked by the onset of physical and emotional maturity [10], as well as the rise in social evaluations and self-consciousness concerns [11,12,13,14], adolescents living with HIV (ALHIV)—a highly stigmatized disease, are more prone to shame during this period.

Shame has been documented as a barrier to combating the spread of HIV, as well as undermining HIV treatment outcomes [15, 16]. Specifically, shame prevents individuals from disclosing their HIV status to family members, friends, sexual partners and service providers [15]. It prevents individuals from getting tested, including pregnant women—limiting them from engaging in prevention of mother to child transmission of HIV programs [17]. Moreover, shame prevents caregivers from disclosing HIV status to their perinatally infected children [18] and can prevent people from engaging in care and or being retained in care, which exacerbates the psychological impact of living positively with HIV [15].

Studies have documented the negative impact of shame on the behavioral, physical, clinical and psychosocial outcomes [1, 9]. Specifically, HIV-related shame has been associated with mental health challenges, including depressive symptoms [6, 19, 20], anxiety and post-traumatic stress disorder symptoms [6, 21,22,23]. In terms of care and treatment outcomes, HIV-related shame has been associated with non-disclosure, fear of HIV testing [15], non-adherence to medication [24] and a barrier to participating in HIV-related clinical trials [25]—pointing to reduced health care service utilization and lower quality of life [9, 26]. Studies have also linked shame to increased production of cortisol—a stress hormone [1], which in turn, is associated with higher viral load among people living with HIV, severe fatigue, depression and anxiety traits [27, 28]. Moreover, HIV-related shame has been associated with increased HIV risky sexual behaviors and linked to continued transmission of HIV among adult populations [5, 29]. In non-HIV related studies, shame has been documented to mediate the relationship between stigmatizing experiences (such as abuse and maltreatment) and internalizing symptoms in children and adolescents [30, 31].

Even with these documented negative effects of shame, fewer studies have investigated shame among people living with HIV in Sub-Saharan Africa (SSA), especially among children and adolescents [32]. Most studies have focused on HIV-related stigma and its impact on mental health functioning [7, 8, 33,34,35,36]. Yet, compared to stigma, shame is considered a more proximal predictor of mental health challenges [37]. Moreover, shame is usually examined as a component of internalized stigma, making it difficult to disentangle the specific components that are strongly associated with mental health outcomes [4]. Thus, this study contributes to the limited literature by examining the relationship between HIV-related shame, stigma and the mental health functioning of ALHIV in Uganda. Given that shame is a modifiable predictor through individually focused interventions [1, 38], findings may inform interventions aimed at addressing shame within this young vulnerable population as they transition through adolescence and into young adulthood.

Methods

Sample and Setting

Baseline data from adolescents participating in the Suubi4Stigma study (2020–2022), a 2-year pilot study aimed at addressing HIV related stigma among adolescents living with HIV and their caregivers in Uganda, were analyzed. The study recruited 89 child-caregiver dyads (N = 178) from 9 comparable health care clinics across four political districts of Masaka, Kyotera, Kalungu and Lwengo—with an HIV prevalence of 11.7% compared to 5.4% of the national average [39]. Inclusion criteria for adolescents: (1) living with HIV and aware of their status; (2) between 10 and 14 years; (3) enrolled on antiretroviral therapy in participating clinics; and (4) living within a family, including with extended family. All health care clinics were comparable in terms of number of adolescents served, facility level and availability of adolescents’ friendly services e.g., adolescent clinic days.

Participant Recruitment

Study participants were identified and recruited from government HIV health clinics providing HIV-related services within the study region. A clinic staff created a list of all eligible families from medical records, noting their eligibility to participate. Next, the clinic staff presented the project idea to adult caregivers of eligible children during appointments. If caregivers were interested, verbal consent to be contacted by research staff who was on site during the adolescent clinic days was requested. Following a meeting with the research staff, interested caregivers were taken through informed consent after which they provide written consent for themselves and for their child to participate. A total of 147 adolescents together with their caregivers from 9 health care clinics turned up for screening, 89 met the study inclusion criteria and were recruited into the study. Detailed description of the study is provided in the study protocol [40].

Ethical Considerations

All study procedures were approved by Washington University in St. Louis Institutional Review Board (IRB # 202009185), the Uganda Virus Research Institute (GC/127/20/10/792), and the Uganda National Council for Science and Technology (SS632ES). Prior to study participation, informed written consent and assent were obtained from caregivers and adolescents respectively. The study is registered in the Clinical trials.gov database (Identifier #: NCT04528732).

Data Collection

Data were collected using a 90-min interviewer-administered questionnaire. All study related materials were translated into Luganda—the widely spoken language in the study region, and back translated into English to ensure consistency. A certificate of translation was obtained from Makerere University. All interviewers received training in human subjects’ protection and completed Good Clinical Practice (GCP) trainings prior to engaging with study participants.

Measures

All measures utilized in this study have been adapted and tested among adolescents affected by HIV in the study region [32, 41,42,43]. Measures of mental health functioning include depressive symptoms, hopelessness, loneliness, child PTSD and self-concept. Depressive symptoms were assessed using the 14-item Child Depression Inventory (CDI) [44]. Items were adapted from the original long version scale, which measures both emotional and functional problems that correspond with depression in children, and have been tested in the study region among adolescents living with HIV [40, 43]. Respondents were asked to mark a statement that best described their feelings during the past 2 weeks, with three response options that correspond to varying levels of symptomology for clinical depression (Cronbach’s alpha 0.61). Hopelessness was measured using the Beck Hopelessness Scale (BHS) [45]. The 20-item scale measures children’s hopelessness and pessimistic attitudes toward the future, with true/false responses, with higher scores indicating higher levels of hopelessness (Cronbach’s alpha 0.68). Loneliness was assessed using the UCLA Loneliness Scale [46]. The 20-item scale measures one’s subjective feelings of loneliness as well as feelings of social isolation (3 = I often feel this way and 0 = I never feel this way), with high scores indicating higher levels of social isolation (Cronbach alpha = 0.88). Child PTSD was measured using 31 items from the abbreviated Childhood post-traumatic Stress Reaction Index (CPTS-RI) [47]. Participants were asked about reactions people sometimes have after very bad things happen and how this was applicable to them in the past month (0 = none (never) and 4 = Most(almost every day)), with higher scores indicating higher levels of child PTSD symptoms (Cronbach alpha = 0.92). Self-concept was measured using the Tennessee Self-Concept Scale [48], a 20-item scale that measures children’s perception of identity, self-satisfaction and other behaviors (1 = Always False, and 5 = Always True), with higher scores indicating higher levels of child self-concept (Cronbach’s alpha = 0.81).

The Shame Questionnaire [49], an 8-item scale, was used to measure adolescent’s feelings of shame, on a 3-point scale (0 = Not true and 2 = Very True). Higher scores indicate higher levels of HIV-related shame. The scale has been adapted and validated to measure HIV-related shame among Ugandan ALHIV, with high internal consistency (Cronbach’s’ alpha = 0.84) [32]. HIV-related stigma was assessed by 9-items from the Berger Stigma Scale measuring both internalized and anticipated stigma [50], on a 4-point scale (1 = Strongly Disagree and 4 = Strongly Agree) with a higher score indicating higher levels of internalized and anticipated stigma. The scale demonstrated an acceptable internal consistency (Cronbach’s = 0.74) among Ugandan ALHIV [42]. Based on previous literature, variables included in the model as control variables include participants’ age, gender, orphanhood status, number of people in the household, and family cohesion.

Analysis Procedures

Data analysis was performed using STATA version 17. We analyzed participants’ demographic characteristics, as well as the independent and outcome variables. We conducted multiple linear regression models to ascertain the relationship between HIV-related shame, stigma, and measures of adolescents’ mental health functioning, specifically, depressive symptoms, hopelessness, PTSD, loneliness and self-concept. Statistical significance was set a priori at the 5% level. To adjust for alpha inflation, Robust Huber–White standard errors and test statistics were used for all models. For each linear regression model, standardized residuals were predicted, and diagnostic tests examined to check the distribution of residuals for non-normality and/or inequality of residuals over levels of predicted values for linear regression models. Specifically, the histogram (i.e., P–P and Q-norm plots) of the standardized residuals with the normal curve overlaid and a scatterplot of the standardized residuals by predicted values were visually examined for each linear regression model. Additionally, we examined multicollinearity for each model and concluded that number of children in the family was highly correlated with number of people in the family and hence dropped from all models. All models were single-level models.

Results

Sample characteristics are presented in Table 1. The majority of participants were female (56%), the average age was 12.2 years and about 45% identified as orphans i.e., had lost a biological father or mother. The average household size was 6 people, with 3 children. Overall, participants reported moderate scores on HIV-related shame, stigma, and all mental health measures.

Table 1 Sample characteristics (N = 89)
Table 2 Bivariate correlation analysis

Bivariate correlation results are summarized in Table 2 and regression results are presented in Table 3. Controlling for participants’ and household characteristics, HIV-related shame was associated with higher levels of depressive symptoms (b = 0.24, 95% CI = 0.04, 0.44, p < 0.05) in model 1, hopelessness (b = 0.35, 95% CI = 0.15, 0.55, p < 0.001) in model 2, PTSD symptoms (b = 3.04, 95% CI = 1.72, 4.36, p < 0.001) in model 3, loneliness (b = 0.97, 95% CI = 0.21, 1.73, p < 0.01) in model 4, and low levels of self-concept (b = − 1.08, 95% CI = − 1.88, − 0.28, p < 0.01) in model 5. In addition, gender i.e., being a female child, was associated with higher levels of hopelessness (b = 1.82, 95% CI = 0.60, 3.05, p < 0.01), PTSD symptoms (b = 11.37, 95% CI = 3.35, 19.39, p < 0.01), and low self-concept (b = − 8.67, 95% CI = − 13.03, − 4.31, p < 0.001). HIV stigma was not associated with any of the outcomes.

Table 3 Regression on mental health functioning

Discussion

Adolescents living with HIV are at an increased risk of developing poor mental health conditions [51,52,53,54]. This study examined the relationship between HIV-related shame, stigma and the mental health functioning of adolescents living with HIV. Findings indicate that HIV-related shame was significantly associated with depressive symptoms, hopelessness, loneliness, PTSD symptoms, as well as low levels of self-concept. These findings are consistent with studies that have documented the negative impact of shame on behavioral and mental health outcomes [6, 19,20,21,22,23].

Contrary to studies that have examined HIV stigma and mental health [34, 35, 55,56,57], stigma was not associated with any of the outcomes in the current study. Indeed, it has been suggested that shame is a more proximal predictor of mental health challenges than stigma [37]. Given that shame increases avoidant coping [6, 54, 55], it could be that adolescents living with shame utilize more avoidant coping strategies, including withdrawal from social interactions, which in turn, may potentially exacerbate pre-existing psychological distress. In addition, given the high prevalence of HIV in the study region [39], where families have been greatly affected by HIV, it is possible that stigmatizing behaviors, especially towards children are declining. Indeed, the most recent Stigma Index Survey report in Uganda [58] indicate that experiences of externalized stigma have reduced significantly from 4.5% in 2013 to 1.3% in 2019—potentially explaining the minimal association with adolescents’ psychosocial wellbeing. Finally, given the young age of adolescents in our study, it could be that they are still developing or forming stigma related perceptions and attitudes [59]. As such, they may be unable to recognize stigmatizing behaviors toward them, reducing the potential negative impact on their psychosocial wellbeing.

Study results also indicate that girls were more likely to experience more negative mental health outcomes compared to boys. These findings are consistent with a small number of studies suggesting that female youth living with HIV are at a higher risk of mental health difficulties compared to males [60, 61]. Other studies have documented differences in sexes—specifically, that being female is a risk factor for internalizing problems, including depression and anxiety, while being male is a risk factor for behavioral problems [62]. Among adult populations, studies have found that women living with HIV are at a higher risk of depression, anxiety, PTSD compared to their male counterparts [63, 64]. Given that mental health disorders negatively influence treatment outcomes and mortality [65, 66], findings point to the integration of gender specific components for addressing mental health among adolescents living with HIV.

Study findings have important implications for the development of effective psychosocial interventions. Indeed, interventions such as cognitive behavioral therapy, mindfulness [67, 68], acceptance and commitment therapy [69], as well as compassion-based interventions [70, 71], show promise of decreasing shame across diverse populations. The current study tests two evidence-based interventions, including group-based cognitive behavioral therapy to address HIV-related stigma among adolescents [40]. Findings, if warranted, will inform the incorporation of shame-reduction components within the current cognitive behavioral therapy intervention.

A few limitations are worth noting. First, we analyzed cross sectional data from a small pilot sample. Second, all outcomes were self-reported and may be impacted by social desirability. Third, data collection was conducted during the Covid-19 pandemic. The associated challenges, including social distancing and disruptions may have been associated with worsening mental health among adolescents.

Overall, study findings contribute to the limited literature examining HIV-related shame and mental health of young people living with HIV in SSA. Future research is needed to understand the mechanisms through which HIV-related shame impacts the mental health of adolescents living with HIV. Findings are in line with the increasing calls to address mental health difficulties to achieve the HIV prevention and treatment outcomes for young people growing up with a highly stigmatized infection.

Summary

Shame has been documented as a barrier to combating the spread of HIV, as well as undermining HIV treatment outcomes. Shame negatively impacts the behavioral, physical, clinical and psychosocial outcomes of individuals. However, fewer studies have investigated shame among children and adolescents living with HIV sub-Saharan Africa. This study examined the relationship between HIV-related shame, stigma and the mental health of adolescents (10–14 years) living with HIV in Uganda. Cross sectional data from a 2-year pilot study for adolescents living with HIV (N = 89 dyads) were analyzed. Multiple linear regression analyses were conducted to determine the relation between HIV-related shame, as measured by the Shame Questionnaire, stigma, and adolescents’ mental health functioning, including depressive symptoms, hopelessness, PTSD symptoms, loneliness and self-concept. The average age was 12.2 years, and 56% of participants were female. HIV-related shame was associated with higher levels of depressive symptoms (p < 0.05), hopelessness (p < 0.001), PTSD symptoms (p < 0.001), loneliness (p < 0.01), and low levels of self-concept (p < 0.01). In addition, girls were more likely to experience more negative mental health outcomes compared to boys. HIV stigma was not associated with any of the outcomes. Findings support the need for the development of strategies to help adolescents overcome the shame of living with HIV and mitigate the effects of shame on adolescents’ mental health and treatment outcomes.

References

  1. Dickerson SS, Gruenewald TL, Kemeny ME (2004) When the social self is threatened: shame, physiology, and health. J Pers 72:1191–1216

    Article  PubMed  Google Scholar 

  2. Wilson JP, Drozdek B, Turkovic S (2006) Posttraumatic shame and guilt. Trauma Violence Abuse 7:122–141

    Article  PubMed  Google Scholar 

  3. Pantelic M, Boyes M, Cluver L, Meinck F (2017) HIV, violence, blame and shame: pathways of risk to internalized HIV stigma among South African adolescents living with HIV. J Int AIDS Soc 20:21771

    Article  PubMed  PubMed Central  Google Scholar 

  4. Bennett DS, Traub K, Mace L, Juarascio A, O’Hayer CV (2016) Shame among people living with HIV: a literature review. AIDS Care 28:87–91

    Article  PubMed  Google Scholar 

  5. Neufeld SA, Sikkema KJ, Lee RS, Kochman A, Hansen NB (2012) The development and psychometric properties of the HIV and Abuse Related Shame Inventory (HARSI). AIDS Behav 16:1063–1074

    Article  PubMed  PubMed Central  Google Scholar 

  6. Bennett DS, Hersh J, Herres J, Foster J (2016) HIV-related stigma, shame, and avoidant coping: risk factors for internalizing symptoms among youth living with HIV? Child Psychiatry Hum Dev 47:657–664

    Article  PubMed  Google Scholar 

  7. Katz IT, Ryu AE, Onuegbu AG, Psaros C, Weiser SD, Bangsberg DR, Tsai AC (2013) Impact of HIV-related stigma on treatment adherence: systematic review and meta‐synthesis. J Int AIDS Soc 16(3 Suppl 2):18640

    Article  PubMed  PubMed Central  Google Scholar 

  8. Lowther K, Selman L, Harding R, Higginson IJ (2014) Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART): a systematic review. Int J Nurs Stud 51:1171–1189

    Article  PubMed  Google Scholar 

  9. Persons E, Kershaw T, Sikkema KJ, Hansen NB (2010) The impact of shame on health-related quality of life among HIV-positive adults with a history of childhood sexual abuse. AIDS Patient Care STDS 24:571–580

    Article  PubMed  PubMed Central  Google Scholar 

  10. Dahl RE (2004) Adolescent brain development: a period of vulnerabilities and opportunities. Keynote address. Ann N Y Acad Sci 1021:1–22

    Article  PubMed  Google Scholar 

  11. Rankin JL, Lane DJ, Gibbons FX, Gerrard M (2004) Adolescent self-consciousness: longitudinal age changes and gender differences in two cohorts. J Res Adolesc 14:1–21

    Article  Google Scholar 

  12. Westenberg PM, Drewes MJ, Goedhart AW, Siebelink BM, Treffers PD (2004) A developmental analysis of self-reported fears in late childhood through mid-adolescence: social-evaluative fears on the rise? J Child Psychol Psychiatry 45:481–495

    Article  PubMed  Google Scholar 

  13. Somerville LH, Jones RM, Ruberry EJ, Dyke JP, Glover G, Casey BJ (2013) The medial prefrontal cortex and the emergence of self-conscious emotion in adolescence. Psychol Sci 24:1554–1562

    Article  PubMed  Google Scholar 

  14. Cunha M, Matos M, Faria D, Zagalo S (2012) Shame memories and psychopathology in adolescence: the mediator effect of shame. Int J psychol psychol ther 12:203–218

    Google Scholar 

  15. Hutchinson P, Dhairyawan R (2018) Shame and HIV: strategies for addressing the negative impact shame has on public health and diagnosis and treatment of HIV. Bioethics 32:68–76

    Article  PubMed  Google Scholar 

  16. Dolezal LU (2021) Shame, stigma and HIV: considering affective climates and the phenomenlogy of shame anxiety. Lambda Nordica 27:2–3

    Google Scholar 

  17. Kohler PK, Ondenge K, Mills LA et al (2014) Shame, guilt, and stress: community perceptions of barriers to engaging in prevention of mother to child transmission (PMTCT) programs in western Kenya. AIDS Patient Care STDS 28:643–651

    Article  PubMed  PubMed Central  Google Scholar 

  18. Kyaddondo D, Wanyenze RK, Kinsman J, Hardon A (2013) Disclosure of HIV status between parents and children in Uganda in the context of greater access to treatment. SAHARA J 10(Suppl 1):S37–S45

    Article  PubMed  Google Scholar 

  19. Herek GM, Saha S, Burack J (2013) Stigma and psychological distress in people with HIV/AIDS. Basic Appl Soc Psychol 35:41–54

    Article  Google Scholar 

  20. Kim S, Thibodeau R, Jorgensen RS (2011) Shame, guilt, and depressive symptoms: a meta-analytic review. Psychol Bull 137:68–96

    Article  PubMed  Google Scholar 

  21. Andrews B, Brewin CR, Rose S, Kirk M (2000) Predicting PTSD symptoms in victims of violent crime: the role of shame, anger, and childhood abuse. J Abnorm Psychol 109:69–73

    Article  PubMed  Google Scholar 

  22. Lee DA, Scragg P, Turner S (2001) The role of shame and guilt in traumatic events: a clinical model of shame-based and guilt-based PTSD. Br J Med Psychol 74:451–466

    Article  PubMed  Google Scholar 

  23. Saraiya T, Lopez-Castro T (2016) Ashamed and afraid: a scoping review of the role of shame in post-traumatic stress disorder (PTSD). J Clin Med 5:94

    Article  PubMed Central  Google Scholar 

  24. Konkle-Parker DJ, Erlen JA, Dubbert PM (2008) Barriers and facilitators to medication adherence in a southern minority population with HIV disease. J Assoc Nurses AIDS Care 19:98–104

    Article  PubMed  PubMed Central  Google Scholar 

  25. Zúñiga ML, Blanco E, Martínez P, Strathdee SA, Gifford AL (2007) Perceptions of barriers and facilitators to participation in clinical trials in HIV-positive Latinas: a pilot study. J Womens Health (Larchmt) 16:1322–1330

    Article  Google Scholar 

  26. Vincent W, Fang X, Calabrese SK, Heckman TG, Sikkema KJ, Hansen NB (2017) HIV-related shame and health-related quality of life among older, HIV-positive adults. J Behav Med 40:434–444

    Article  PubMed  Google Scholar 

  27. Barroso J, Burrage J, Carlson J, Carlson BW (2006) Salivary cortisol values in HIV-positive people. J Assoc Nurses AIDS Care 17:29–36

    Article  PubMed  Google Scholar 

  28. Gruenewald TL, Kemeny ME, Aziz N, Fahey JL (2004) Acute threat to the social self: shame, social self-esteem, and cortisol activity. Psychosom Med 66:915–924

    Article  PubMed  Google Scholar 

  29. Sikkema KJ, Hansen NB, Meade CS, Kochman A, Fox AM (2009) Psychosocial predictors of sexual HIV transmission risk behavior among HIV-positive adults with a sexual abuse history in childhood. Arch Sex Behav 38:121–134

    Article  PubMed  Google Scholar 

  30. Feiring C, Taska L, Lewis M (2002) Adjustment following sexual abuse discovery: the role of shame and attributional style. Dev Psychol 38:79–92

    Article  PubMed  Google Scholar 

  31. Stuewig J, McCloskey LA (2005) The relation of child maltreatment to shame and guilt among adolescents: psychological routes to depression and delinquency. Child Maltreat 10:324–336

    Article  PubMed  Google Scholar 

  32. Michalopoulos LM, Meinhart M, Barton SM, Kuhn J, Mukasa MN, Namuwonge F, Feiring C, Ssewamala FM (2019) Adaptation and validation of the shame questionnaire among Ugandan youth living with HIV. Child Indic Res 12(3):1023–1042

    Article  PubMed  Google Scholar 

  33. Abas M, Ali GC, Nakimuli-Mpungu E, Chibanda D (2014) Depression in people living with HIV in sub-Saharan Africa: time to act. Trop Med Int Health 19:1392–1396

    Article  PubMed  Google Scholar 

  34. Fekete EM, Williams SL, Skinta MD (2018) Internalised HIV-stigma, loneliness, depressive symptoms and sleep quality in people living with HIV. Psychol Health 33(3):398–415

    Article  PubMed  Google Scholar 

  35. Grov C, Golub SA, Parsons JT, Brennan M, Karpiak SE (2010) Loneliness and HIV-related stigma explain depression among older HIV-positive adults. AIDS Care 22:630–639

    Article  PubMed  PubMed Central  Google Scholar 

  36. Nachega JB, Morroni C, Zuniga JM et al (2012) HIV-related stigma, isolation, discrimination, and serostatus disclosure: a global survey of 2035 HIV-infected adults. J Int Assoc Physicians AIDS Care (Chic) 11:172–178

    Article  Google Scholar 

  37. Lewis M (1995) Shame: the exposed self. Simon and Schuster, New York

    Google Scholar 

  38. Fortenberry JD, McFarlane M, Bleakley A, Bull S, Fishbein M, Grimley DM, Malotte CK, Stoner BP (2002) Relationships of stigma and shame to gonorrhea and HIV screening. Am J Public Health 92(3):378–381

    Article  PubMed  PubMed Central  Google Scholar 

  39. Uganda AIDSC (2021) 2021 Fact sheet: facts on HIV and AIDS in Uganda. Available at https://uac.go.ug/media/attachments/2021/09/13/final-2021-hiv-aids-factsheet.pdf

  40. Nabunya P, Ssewamala FM, Bahar OS, Michalopoulos LTM, Mugisha J, Neilands TB, Trani JF, McKay MM (2022) Suubi4Stigma study protocol: a pilot cluster randomized controlled trial to address HIV-associated stigma among adolescents living with HIV in Uganda. Pilot Feasibility Stud 8(1):95

    Article  PubMed  PubMed Central  Google Scholar 

  41. Byansi W, Brathwaite R, Calvert M, Nabunya P, Sensoy Bahar O, Damulira C, Namuwonge F, McKay MM, Mellins CA, Ssewamala FM (2021) Relationship between mental health and HIV transmission knowledge and prevention attitudes among adolescents living with HIV: lessons from Suubi + adherence cluster randomized study in southern Uganda. AIDS Behav 25(11):3721–3733

    Article  PubMed  Google Scholar 

  42. Nabunya P, Byansi W, Sensoy Bahar O, McKay M, Ssewamala FM, Damulira C (2020) Factors associated with HIV disclosure and HIV-related stigma among adolescents living with HIV in Southwestern Uganda. Front Psychiatry 11:772

    Article  PubMed  PubMed Central  Google Scholar 

  43. Cavazos-Rehg P, Byansi W, Xu C, Nabunya P, Sensoy Bahar O, Borodovsky J, Kasson E, Anako N, Mellins C, Damulira C, Neilands T, Ssewamala FM (2021) The impact of a family-based economic intervention on the mental health of HIV-infected adolescents in Uganda: results from Suubi + adherence. J Adolesc Health 68(4):742–749

    Article  PubMed  Google Scholar 

  44. Kovacs M (1992) Children’s depression inventory: manual. Multi-Health Systems, North Tonawanda

    Google Scholar 

  45. Beck AT, Weissman A, Lester D, Trexler L (1974) The measurement of pessimism: the hopelessness scale. J Consult Clin Psychol 42:861–865

    Article  PubMed  Google Scholar 

  46. Russell D, Peplau LA, Ferguson ML (1978) Developing a measure of loneliness. J Pers Assess 42:290–294

    Article  PubMed  Google Scholar 

  47. Frederick C, Pynoos RS, Nader KO (1992) Childhood Post-Traumatic Stress Reaction Index (CPTS-RI). Two Suns Measures, Los Angeles

    Google Scholar 

  48. Fitts WH, Warren WL (1996) Tennessee self-concept scale: TSCS-2. Western Psychological Services, Los Angeles

    Google Scholar 

  49. Feiring C, Taska LS (2005) The persistence of shame following sexual abuse: a longitudinal look at risk and recovery. Child Maltreat 10:337–349

    Article  PubMed  Google Scholar 

  50. Berger BE, Ferrans CE, Lashley FR (2001) Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Res Nurs Health 24:518–529

    Article  PubMed  Google Scholar 

  51. Vreeman RC, McCoy BM, Lee S (2017) Mental health challenges among adolescents living with HIV. J Int AIDS Soc 20(Suppl 3):21497

    Article  PubMed  PubMed Central  Google Scholar 

  52. Dessauvagie AS, Jörns-Presentati A, Napp AK et al (2020) The prevalence of mental health problems in sub-Saharan adolescents living with HIV: a systematic review. Glob Ment Health (Camb) 7:e29

    Article  Google Scholar 

  53. Bhana A, Abas MA, Kelly J, van Pinxteren M, Mudekunye LA, Pantelic M (2020) Mental health interventions for adolescents living with HIV or affected by HIV in low- and middle-income countries: systematic review. BJPsych Open 6:e104

    Article  PubMed  PubMed Central  Google Scholar 

  54. Lewis M (2008) Self-conscious emotions: embarrassment, pride, shame, and guilt. In: Lewis M, Haviland-Jones J, Feldman BL (eds) Handbook of emotions, 3rd edn. Guilford, New York, pp 742–756

    Google Scholar 

  55. De Rubeis S, Hollenstein T (2009) Individual differences in shame and depressive symptoms during early adolescence. Pers Individ Dif 46:477–482

    Article  Google Scholar 

  56. Breuer E, Myer L, Struthers H, Joska JA (2011) HIV/AIDS and mental health research in sub-Saharan Africa: a systematic review. Afr J AIDS Res 10(2):101–122

    Article  PubMed  Google Scholar 

  57. Rueda S, Mitra S, Chen S, Gogolishvili D, Globerman J, Chambers L, Wilson M, Logie CH, Shi Q, Morassaei S, Rourke SB (2016) Examining the associations between HIV-related stigma and health outcomes in people living with HIV/AIDS: a series of meta-analyses. BMJ Open 6(7):e011453

    Article  PubMed  PubMed Central  Google Scholar 

  58. NAFOPHANU (2019) The PLHIV Stigma Index, Country Assessment, Uganda. Available at https://www.stigmaindex.org/wp-content/uploads/2019/11/PLHIV-Stigma-Index-Report-Uganda-2019.pdf. Accessed on 2 May 2022

  59. Lau AS, Guo S, Tsai W, Nguyen DJ, Nguyen HT, Ngo V, Weiss B (2016) Adolescents’ stigma attitudes toward internalizing and externalizing disorders: cultural influences and implications for distress manifestations. Clin Psychol Sci 4(4):704–717

    Article  PubMed  PubMed Central  Google Scholar 

  60. Mellins CA, Elkington KS, Leu CS, Santamaria EK, Dolezal C, Wiznia A, Bamji M, Mckay MM, Abrams EJ (2012) Prevalence and change in psychiatric disorders among perinatally HIV-infected and HIV-exposed youth. AIDS Care 24(8):953–962

    Article  PubMed  PubMed Central  Google Scholar 

  61. Gadow KD, Angelidou K, Chernoff M, Williams PL, Heston J, Hodge J et al (2012) Longitudinal study of emerging mental health concerns in youth perinatally infected with HIV and peer comparisons. J Dev Behav Pediatr 33:456

    Article  PubMed  PubMed Central  Google Scholar 

  62. Mellins CA, Malee KM (2013) Understanding the mental health of youth living with perinatal HIV infection: lessons learned and current challenges. J Int AIDS Soc 16:18593

    Article  PubMed  PubMed Central  Google Scholar 

  63. Machtinger EL, Wilson TC, Haberer JE, Weiss DS (2012) Psychological trauma and PTSD in HIV-positive women: a meta-analysis. AIDS Behav 16:2091–2100

    Article  PubMed  Google Scholar 

  64. Orza L, Bewley S, Logie CH, Crone ET, Moroz S, Strachan S, Vazquez M, Welbourn A (2015) How does living with HIV impact on women’s mental health? Voices from a global survey. J Int AIDS Soc 18(Suppl 5):20289

    Article  PubMed  PubMed Central  Google Scholar 

  65. Machtinger EL, Wilson TC, Haberer JE, Weiss DS (2012) Psychological trauma and PTSD in HIV-positive women: a meta-analysis. AIDS Behav 16:2091–2100

    Article  PubMed  Google Scholar 

  66. Nakimuli-Mpungu E, Bass JK, Alexandre P, Mills EJ, Musisi S, Ram M, Katabira E, Nachega JB (2012) Depression, alcohol use and adherence to antiretroviral therapy in sub-Saharan Africa: a systematic review. AIDS Behav 16(8):2101–2118

    Article  PubMed  Google Scholar 

  67. Antelman G, Kaaya S, Wei R, Mbwambo J, Msamanga GI, Fawzi WW, Fawzi MC (2007) Depressive symptoms increase risk of HIV disease progression and mortality among women in Tanzania. J Acquir Immune Defic Syndr 44(4):470–477

    Article  PubMed  PubMed Central  Google Scholar 

  68. Goffnett J, Liechty JM, Kidder E (2020) Interventions to reduce shame: a systematic review. J Behav Cogn Therapy 30(2):141–160

    Article  Google Scholar 

  69. Stynes G, Leão CS, McHugh L (2022) Exploring the effectiveness of mindfulness-based and third wave interventions in addressing self-stigma, shame and their impacts on psychosocial functioning: a systematic review. J Context Behav Sci 23:174–189

    Article  Google Scholar 

  70. Luoma JB, Kohlenberg BS, Hayes SC, Fletcher L (2012) Slow and steady wins the race: a randomized clinical trial of acceptance and commitment therapy targeting shame in substance use disorders. J Consult Clin Psychol 80:43–53

    Article  PubMed  Google Scholar 

  71. Carter A, Gilbert P, Kirby JN (2021) A systematic review of compassion-based interventions for individuals struggling with body weight shame. Psychol Health. https://doi.org/10.1080/08870446.2021.1955118

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

Financial support for the Suubi4Stigma study came from the National Institute of Mental Health (NIMH; Grant # R21MH121141, MPIs: Proscovia Nabunya, PhD and Fred M. Ssewamala, PhD). The content of this paper is solely the responsibility of the authors and does not necessarily represent the official views of the NIMH. We are grateful to the investigative team based at the Brown School at Washington University in St. Louis, Reach the Youth Uganda (implementing partner), as well as the staff and the volunteer team at the International Center for Child Health and Development (ICHAD) in Masaka, Uganda, for monitoring the study implementation process. Our special thanks go to all the children and their caregiving families who agreed to participate in the study.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Proscovia Nabunya.

Ethics declarations

Conflict of interest

The authors have no conflict of interest to disclose.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Nabunya, P., Namuwonge, F. HIV-Related Shame, Stigma and the Mental Health Functioning of Adolescents Living with HIV: Findings from a Pilot Study in Uganda. Child Psychiatry Hum Dev (2022). https://doi.org/10.1007/s10578-022-01374-z

Download citation

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1007/s10578-022-01374-z

Keywords

  • HIV-related shame
  • Stigma
  • Adolescent mental health
  • Child PTSD
  • Depressive symptoms