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Learn more: PMC Disclaimer | PMC Copyright Notice AIDS Res Ther . 2026 Mar 3;23:48. doi: 10.1186/s12981-026-00866-5 Search in PMC Search in PubMed View in NLM Catalog Add to search Disclosure of HIV status and its association with quality of life and depressive symptoms among children with HIV in North-Eastern Tanzania Veneranda M Bwana Veneranda M Bwana 1 National Institute for Medical Research, Amani Research Centre, NIMR Road, Mbaramo, P.O. Box 81, Muheza, 21405 Tanzania 2 Feinberg School of Medicine, Northwestern University, Chicago, IL USA 3 School of Clinical Medicine, Department of Pediatrics and Child Health, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania Find articles by Veneranda M Bwana 1, 2, 3, ✉ , Nahya S Masoud Nahya S Masoud 3 School of Clinical Medicine, Department of Pediatrics and Child Health, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania Find articles by Nahya S Masoud 3 , Karim P Manji Karim P Manji 3 School of Clinical Medicine, Department of Pediatrics and Child Health, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania Find articles by Karim P Manji 3 , Innocent S Yusufu Innocent S Yusufu 2 Feinberg School of Medicine, Northwestern University, Chicago, IL USA 4 African Academy for Public Health, Dar es Salaam, Tanzania Find articles by Innocent S Yusufu 2, 4 , Pendael Z Machafuko Pendael Z Machafuko 1 National Institute for Medical Research, Amani Research Centre, NIMR Road, Mbaramo, P.O. Box 81, Muheza, 21405 Tanzania Find articles by Pendael Z Machafuko 1 , Claudia Hawkins Claudia Hawkins 2 Feinberg School of Medicine, Northwestern University, Chicago, IL USA 5 Feinberg School of Medicine, Robert J Havey Institute for Global Health, Northwestern University, Chicago, IL USA Find articles by Claudia Hawkins 2, 5 , Bethann Conover Bethann Conover 2 Feinberg School of Medicine, Northwestern University, Chicago, IL USA 5 Feinberg School of Medicine, Robert J Havey Institute for Global Health, Northwestern University, Chicago, IL USA Find articles by Bethann Conover 2, 5 , Erasto V Mbugi Erasto V Mbugi 6 School of Biomedical Sciences, Department of Biochemistry and Molecular Biology, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania Find articles by Erasto V Mbugi 6 , Lisa R Hirschhorn Lisa R Hirschhorn 2 Feinberg School of Medicine, Northwestern University, Chicago, IL USA 5 Feinberg School of Medicine, Robert J Havey Institute for Global Health, Northwestern University, Chicago, IL USA Find articles by Lisa R Hirschhorn 2, 5 , Matthew T Caputo Matthew T Caputo 5 Feinberg School of Medicine, Robert J Havey Institute for Global Health, Northwestern University, Chicago, IL USA Find articles by Matthew T Caputo 5 , Craig Garfield Craig Garfield 2 Feinberg School of Medicine, Northwestern University, Chicago, IL USA Find articles by Craig Garfield 2 , Sylvia F Kaaya Sylvia F Kaaya 7 School of Clinical Medicine, Department of Psychiatry and Mental Health, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania Find articles by Sylvia F Kaaya 7 Author information Article notes Copyright and License information 1 National Institute for Medical Research, Amani Research Centre, NIMR Road, Mbaramo, P.O. Box 81, Muheza, 21405 Tanzania 2 Feinberg School of Medicine, Northwestern University, Chicago, IL USA 3 School of Clinical Medicine, Department of Pediatrics and Child Health, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania 4 African Academy for Public Health, Dar es Salaam, Tanzania 5 Feinberg School of Medicine, Robert J Havey Institute for Global Health, Northwestern University, Chicago, IL USA 6 School of Biomedical Sciences, Department of Biochemistry and Molecular Biology, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania 7 School of Clinical Medicine, Department of Psychiatry and Mental Health, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania ✉ Corresponding author. Received 2025 Dec 2; Accepted 2026 Feb 8; Collection date 2026. © The Author(s) 2026 Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/ . PMC Copyright notice PMCID: PMC13067668 PMID: 41776663 Abstract Background Disclosing HIV status to children with HIV (CWHIV) is associated with improved antiretroviral therapy (ART) adherence, quality of life, and psychosocial well-being in many sub–Saharan Africa. However, little is known about this in Tanzania. We determine the prevalence of HIV status disclosure and its association with health-related quality of life (HRQOL) and depressive symptoms in CWHIV in the Tanga Region, Tanzania. Methods A cross-sectional study was conducted in 11 public HIV clinics among caregiver-CWHIV pairs in 2023. Data were collected on socio-demographic, child’s HIV disclosure, depressive symptoms, ART adherence, and HRQOL. Multiple linear and negative binomial regression analyses assessed associations between independent variables (HIV disclosure/other factors) and HRQOL (primary outcome), and depressive symptoms (secondary outcome), respectively. Results Two hundred and seventy-eight CWHIV aged 8–14 years and their caregivers were enrolled. Most caregivers (80.58%) were female. Three-quarters (75.90%) of CWHIV knew their HIV status. Two-thirds (68.71%) of CWHIV reported adherence to ART. HIV disclosed versus non-disclosed CWHIV had 4.57 units higher HRQOL (coefficient = 4.57, 95% CI: 0.87, 8.27; p = 0.016). Higher depression scores (coefficient = -1.09, 95% CI: -1.30, -0.87; p < 0.001 and ART non-adherence (coefficient = -4.27, 95% CI: -7.07, -1.48, p = 0.003) were inversely associated with HRQOL. There was no significant association between HIV disclosure and depressive symptoms, whereas ART non-adherence was significantly associated with higher depressive symptom scores (coefficient = 0.28, 95% CI: 0.06, 0.49, p = 0.013). Conclusion HIV disclosure was associated with better HRQOL but not with any worsened depressive symptoms. Interventions that promote HIV status disclosure at the recommended age are therefore important in the care of CWHIV. Supplementary Information The online version contains supplementary material available at 10.1186/s12981-026-00866-5. Keywords: Disclosure, HIV status, Depressive symptoms, Quality of life, Children, Tanzania Background Globally, approximately 1.4 million children under 14 years old live with HIV, and more than 90% reside in sub-Saharan Africa (SSA) [ 1 ]. Most children with HIV (CWHIV) acquire HIV perinatally from their mothers during pregnancy, delivery, or breastfeeding [ 2 ]. Antiretroviral therapy (ART) has dramatically improved the survival and clinical outcomes of CWHIV and reduced morbidity and mortality [ 3 ]. Through improved availability and ART access, most CWHIV survive into adolescence and young adulthood [ 4 ]. In CWHIV approaching adolescence, knowledge of their HIV status is crucial for their mental and psychosocial well-being [ 4 – 6 ]. The World Health Organization (WHO) recommends disclosure of HIV status to school-aged CWHIV between 6 and 12 years [ 5 – 7 ]. Despite these recommendations, rates of HIV status disclosure to CWHIV in SSA and other low-and middle-income countries (LMICs) are low, ranging from 3 to 58% [ 6 , 8 – 14 ]. Recent surveys conducted in Tanzania report that only 22–60% of CWHIV aged 5–14 years are aware of their HIV status [ 13 , 15 , 16 ]. These results reflect a gap in HIV status disclosure, assuming that CWHIV by the age of 12, according to Tanzania and WHO HIV care and treatment guidelines [ 5 , 7 ], should be fully aware of their HIV status [ 17 ]. This practice gap suggests needed actions to improve the uptake of HIV status disclosure in this age group. In SSA, there are many reasons for low HIV status disclosure rates among CWHIV, including parents/caregivers’ fear of stigma and isolation, maternal guilt, and concerns about disclosing to the child too early [ 12 ]. Parents and caregivers also feel they lack the skills to inform their child of an HIV diagnosis and worry about children’s emotional and maturational ability to understand what it means to have HIV [ 18 ]. Tanzania also lacks clear standardized training for paediatric HIV disclosure by healthcare workers or caregivers [ 19 ]. Studies demonstrate the benefits of early paediatric HIV disclosure on adherence to ART, psychosocial well-being, and mental health. However, findings are not always consistent [ 11 , 16 , 20 , 25 ]. Few studies in SSA have examined the association of HIV status disclosure with quality of life [ 22 ]. In this study, we aimed to determine the prevalence of HIV status disclosure and its association with HRQOL and depressive symptoms among CWHIV in the Tanga region, Northeastern Tanzania. The findings from this study aim to help inform policy and improve guidelines on HIV status disclosure for CWHIV in Tanzania. Methods Study area, design, and population A cross-sectional study was conducted among CWHIV and their caregivers between June and November 2023 in 11 HIV clinics (care and treatment centres (CTCs) in the Muheza District and Tanga City Councils, of the Tanga Region, Tanzania. Tanga City Council involved 5 HIV clinics (at a regional hospital and 4 health centres) and in Muheza District council involved 6 HIV clinics (at a district hospital, 2 health centres and 3 dispensaries). Muheza District Council is primarily rural, while Tanga City Council is urban. The Region has been chosen because little is known regarding health-related outcomes among CWHIV after being disclosed their HIV status to them [ 26 ]. The study team selected registered CWHIV and their caregivers from 11 out of 17 HIV clinics in Tanga City and the Muheza District Councils, respectively, using a random numbers table. CWHIV aged between eight and 14 years were eligible for selection, as this is the period at which CWHIV in Tanzania transition from paediatric to adolescent HIV services, whereby the disclosure process is expected to have been initiated and completed [ 7 ]. The caregiver was defined as the registered child’s primary caretaker, living with the child in the same household. All participants were enrolled after providing assent (CWHIV) and written informed consent (adults (caregivers) and the children). CWHIV were excluded if they did not have a clinic registration number at the clinic, declined to participate, or were not accompanied by a consenting caregiver. In addition, if the caregiver declined to provide consent for the child, the child was excluded. Standard procedures for paediatric HIV care in the Tanga region Health care services for CWHIV All CWHIV are scheduled for HIV CTCs visits in either a monthly, three-month, or six-month period, depending on whether they are considered stable or unstable in care. Stable clients are defined as those who have been on ART for at least six months and meet al.l the following criteria: (i) age ≥ 5 years; (ii) have no adverse drug reactions that require regular monitoring; (iii) no current illnesses (opportunistic infections) and/or uncontrolled co-morbidities; (iv) good understanding of lifelong adherence of 95%; (v) have kept all clinic visit appointments for the past six months; (vi) HIV viral load (VL) < 50 copies/ml or in the absence of HIV VL monitoring, rising CD4 counts > 350 cells/mm3; (vii) on first or second-line ART [ 29 ]. Stable clients are seen in the clinic every six months, whereas unstable clients attend clinics once to three times a month; those not meeting stable criteria are seen more frequently [ 27 ]. During standard clinic visits, CWHIV are physically examined and treated for identified opportunistic infections, and ART refills and psychosocial support sessions are provided as needed. Laboratory testing, including CD4 count (cells/mm 3 ), HIV VL, haematology, and chemistry, is performed every six months/annually or as needed. Disclosure of HIV status to CWHIV The Tanzanian HIV/AIDS guidelines recommend that paediatric HIV disclosure be initiated at ages 4–6 years (partial disclosure) and full disclosure is recommended by ages 8–10 years. A child who is partially disclosed is told that they are living with a chronic illness, but they may not know that they have HIV [ 26 , 27 ]. When a child is fully disclosed, they are aware that they are living with HIV. The HIV clinics in the Muheza district and Tanga city Councils utilize drawings, pictures, or flip charts to facilitate both education on ART adherence and HIV status disclosure among CWHIV. The HIV status of a CWHIV is disclosed collaboratively by the parent or caregiver and the health care provider. If able, the caregiver may initiate the disclosure process before meeting with the healthcare provider at the HIV clinic. Health care providers then assess understanding by asking the CWHIV to explain what they have learned during the health education sessions. These discussions continue until the child becomes fully disclosed. The healthcare provider’s role is to support each parent or caregiver during the disclosure process. Disclosure occurs gradually in a culturally sensitive manner and with the parents’ or caregivers’ consent and participation. Data collection After obtaining consent, all study participants (CWHIV and caregivers) were administered a questionnaire by the Research Assistants trained in study procedures. The caregiver questionnaire included sociodemographic characteristics of the child and caregiver, caregiver burden assessment (Table 1 ), distance to the clinic (walking time in minutes), HIV status disclosure information, and age at disclosure. HIV disclosure was categorized into three groups: if the CWHIV had been fully, partially, or not disclosed to, based on the caregiver’s response to two questions: (1) Does your child know that they are living with a chronic illness? (2) Does your child know that they are living with HIV disease? The child was “fully disclosed” if the caregiver answered “yes” to both questions. The child was “partially disclosed” if the caregiver answered “yes” to the first question and “no” to the second question. The child’s identity was “not disclosed” if the caregiver answered “no” to both questions. The child questionnaire collected data on self-reported HRQOL [ 28 , 29 ], depressive symptoms assessed using CD-II [ 30 , 31 ], and ART adherence [ 32 ] (Table 1 ) and was administered by the research assistant in the presence of the caregiver but with no any input into responses. A CDI-II score of ≥ 12 was used as the threshold for depression. The cut-off point of 12 has previously been established as the ideal threshold discriminating children at risk of depression from non-depressed children within homogeneous samples [ 30 – 32 ]. This cut-off point of 12 was used in a prior study of psychosocial wellbeing in children in Tanzania [ 33 ]. All children meeting the criterion for depression ( ≥ 12) were referred to a trained mental health nurse for further evaluation and close follow-up. Data on ART duration, the most recent HIV VL (within one year), and age at HIV diagnosis were extracted from the child’s HIV medical record. The VL among CWHIV was categorized as < 50 copies/ml (suppressed), ≥ 50 copies/mL (unsuppressed), or unknown (no records). (suppressed), ≥ 50 copies/mL (unsuppressed), or unknown (no records). To avoid inadvertent disclosure of the child’s HIV status in this study, only the caregiver was asked about the child’s HIV status disclosure. The caregiver was interviewed separately in the absence of the child. Table 1. Summary of the measures used among study participants during 2023 in the Tanga Region, Tanzania Participants, variable Measure Objectives Scoring Validated, reference Children, HRQoL KIDSCREEN – 27 a Assess 5 domains over the past two weeks, as shown below a 27 questions scored on a 5-point Likert Scale (range = 27–135) Kenya, Uganda [ 28 , 29 ] Children, Depressive symptoms Child Depression Inventory – II (CDI) 27 questions of the CDI II that best describes his/her feelings over the past two weeks Questions scored 0 (absent), 1 (moderate), or 2 (severe) (range = 0–54). Scores > 12 at risk of depression [ 30 , 32 ] Children, ART Adherence Simplified Medication Adherence Questionnaire Adherence survey with five yes/no questions with a 6th one to establish a 3-month history of routine daily medication taken Nonadherent if the participant answered “yes” to any of the five yes/no questions and/or missed a dose in the last 3 months [ 34 ] Caregivers, Caregiver Burden Burden Assessment Scale (BAS) Measure of objective (e.g., financial) and subjective (e.g., stigma) perceptions of the burden associated with caregiving over the past six months 19 questions scored on a 4-point Likert scale (range = 19–76) with scores ≤ 32 as low burden, ≥ 33 as high burden [ 35 ] Open in a new tab a KIDSCREEN − 27 domains include (1) Physical Well-Being (5 items): explores child’s physical activity, energy, and fitness; (2) Psychological Well-Being (7 items): explores positive emotions, satisfaction with life, general mood and feeling like happiness, sadness, loneliness; (3) Parent Relations and Autonomy (7 items): explores relationships with parents, the atmosphere at home, feelings of having enough age-appropriate freedom and satisfaction with financial resources; (4) Social Support and Peers (4 items): explores the nature of the respondent’s relationships with other children; (5) School Environment (4 items): explores child’s perceptions of his/her cognitive capacity, learning and concentration, and their feelings about school Translation and cognitive debriefing of the health-related quality of life survey instrument Cross-cultural adaptation of the HRQOL tool (KIDSCREEN-27) was carried out in this study using the following steps. First, the original English version was forward-translated into Swahili by one expert, and then back-translated into English by two independent experts. The forward and backward translations were then reviewed by a team consisting of a CTC clinician and nurse (mental health), a sociologist (Medical Anthropology), a senior research officer (Epidemiology and Public Health). Thereafter, one forward translation in the Swahili language version was reconciled by consensus. The tool was pre-tested to 10 CWHIV aged 8–14 years to ensure that each item and its related response options were understood. CWHIV was asked to suggest alternative wording for questions they felt were difficult to understand. The interviewer’s probing encouraged CWHIV to provide more wording options that made better sense to them. After completing the cognitive interviews, subsequent modifications were made and incorporated into a final Swahili version. Data management and analysis Data were collected using tablets equipped with Open Data Kit software by trained Research Assistants. Data checks were performed daily. All incomplete questionnaires were returned to the site, and participants were contacted by phone to return for clarification. HIV status disclosure was categorized as disclosed (full or partial) or non-disclosed. We combined partial and full disclosure in multivariable analyses in order to increase power due to our limited sample size. Additional exploratory multivariable analyses examining partial and full disclosure separately showed differences in HRQOL (Table One A) but not in depressive symptoms (Table Two A). However, these comparisons were not a priori hypotheses and should be interpreted cautiously given the small numbers and limited power. For this reason, we presented only the combined disclosure variable for parsimony and robustness. Of the 27 questions in the HRQOL tool, questions 9, 10, and 11 were reverse-scored. All continuous data were summarized as medians with interquartile range (IQR). Categorical variables were summarized as proportions and compared using Fisher’s exact test. The Wilcoxon rank-sum (Mann-Whitney U) test was used to test the differences in the median scores between HIV status disclosed and non-disclosed groups by HRQOL and depressive symptoms. We conducted simple regression analysis for continuous and categorical variables to assess associations between explanatory and outcome variables (HRQOL and depression sum scores). All factors with epidemiological plausibility were retained for multiple regression analysis. Simple and multivariable regression models were used to evaluate associations between HIV disclosure and HRQOL and CDI-II scores. HRQOL was modelled with multiple linear regression as the scores were approximately normally distributed (Fig. One A). CDI-II scores were treated as count data and modelled via negative binomial regression to account for right skew and overdispersion (Fig. Two A). For both models, all clinically and epidemiologically relevant variables were selected and included in the models. Multivariable model results are presented as factors with their adjusted coefficients and 95% confidence intervals. All variables were considered significant at p < 0.05. The Hosmer and Lemeshow Test interpreted the goodness of fit of the final models. Data analysis was conducted using Stata Version 13 (StataCorp, College Station, TX, USA). Results Baseline characteristics of study participants Two hundred and seventy-eight CWHIV were enrolled, 123 (44.2%) were female, median age 12 years (IQR): 10–13). The median duration of HIV infection was nine years (IQR: 8–11), with a similar duration on ART [9 years (IQR: 7–11)]. One hundred and ninety-one (68.71%) CWHIV reported adhering to their ART. The prevalence of any HIV disclosure was 211/278 (75.90%). Among disclosed CWHIV, 132 (47.48%) were fully aware of their HIV status (full disclosure), and 79 (28.42%) were partially disclosed (Table 2 ). Of the 132 fully disclosed CWHIV, 80 (60.61%) had their HIV status fully disclosed to them between the ages of 7 and 10 years (Table Three A). For the fully disclosed CWHIV, 67 (50.76%) had HIV status disclosure events led by their biological parents, assisted by healthcare providers; 48 (36.36%) by healthcare providers alone; and 17 (12.88%) by their biological parents alone (Table Three A). Most of fully disclosed CWHIV were older (aged 11–14 years) compared to the non-disclosed peers (90.15% versus 17.91%; p = 0.001) (Table 2 ). Of the 278 caregivers (median age of 44 years (IQR: 38-53), 133 (47.84%) were biological mothers, and 31 (11.15%) were biological fathers, the remaining being other relatives. Half of the caregivers (50.36%) were engaged in subsistence farming. More caregivers of HIV non-disclosed CWHIV reported a higher caregiver burden compared to caregivers of HIV-fully disclosed CWHIV (71.64% versus 45.45%, respectively; p = 0.002) (Table 2 ). Table 2. Baseline characteristics of enrolled CWHIV and caregivers by HIV status disclosure during 2023 in Tanga Region, Tanzania HIV status disclosure p value* All ( N = 278) Full ( n = 132) Partial ( n = 79) Non ( n = 67) n (%) n (%) n (%) n (%) Child Characteristics Current age in years 8–10 98 (35.25) 13 (9.85) 30 (37.97) 55 (82.09) 11–14 180 (64.74) 119 (90.15) 49 (62.03) 12 (17.91) < 0.001 Sex Male 155 (55.76) 66 (50.00) 45 (56.96) 44 (65.67) Female 123 (44.24) 66 (50.00) 34 (43.04) 23 (34.33) 0.109 Education level Primary 257 (92.45) 111 (84.09) 79 (100.00) 67 (100.00) Secondary 21 (7.55) 21 (15.91) 0 (0.00) 0 (0.00) < 0.001 Residence Tanga City Council 152 (54.68) 67 (50.76) 43 (54.43) 42 (62.69) Muheza District 126 (45.32) 65 (49.24) 36 (45.57) 25 (37.31) 0.276 ART adherence a Adherent (< 1 day of pills missed in last 3 months) 191 (68.71) 87 (65.91) 54 (68.35) 50 (74.63) Non-adherent ( > = 1 day) 87 (31.29) 45 (34.09) 25 (31.65) 17 (25.37) 0.447 Last VL (copies/ml) b <50 192 (69.06) 85 (64.39) 60 (75.95) 47 (70.15) >=50 15 (5.40) 8 (6.06) 4 (5.06) 3 (4.48) Unknown 71 (25.54) 39 (29.55) 15 (18.99) 17 (25.37) 0.505 Distance to health facility Near (≤ 30 min) 33 (11.87) 13 (9.85) 11 (13.92) 9 (13.43) Far (> 30 min) 245 (88.13) 119 (90.15) 68 (86.08) 58 (86.57) 0.584 Caregiver characteristics Current age in years 20–49 187 (67.27) 84 (63.64) 53 (67.09) 50 (74.63) 50–87 91 (32.73) 48 (36.36) 26 (32.91) 17 (25.37) 0.296 Sex Male 54 (19.42) 23 (17.42) 16 (20.25) 15 (22.39) Female 224 (80.58) 109 (82.58) 63 (79.75) 52 (77.61) 0.669 Education level None 21 (7.55) 7 (5.30) 7 (8.86) 7 (10.45) Primary 219 (78.78) 104 (78.79) 67 (84.81) 48 (71.64) Secondary and above 38 (13.67) 21 (15.91) 5 (6.33) 12 (17.91) 0.099 Marital status Married/Living together 124 (44.60) 54 (40.91) 37 (46.84) 33 (49.25) Single/widow/separated 154 (55.40) 78 (59.09) 42 (53.16) 34 (50.75) 0.483 Occupation Formal Employment 21 (7.55) 13 (9.85) 1 (1.27) 7 (10.45) Self-employ & business 117 (42.09) 45 (34.09) 40 (50.63) 32 (47.76) Subsistence farmer 140 (50.36) 74 (56.06) 38 (48.10) 28 (41.79) 0.012 Relationship to child c Others 114 (41.01) 59 (44.70) 30 (37.97) 25 (37.31) Biological parents 164 (58.99) 73 (55.30) 49 (62.03) 42 (62.69) 0.514 Caregiver burden (scores) Low (19–32) 127 (45.68) 72 (54.55) 36 (45.57) 19 (28.36) High (33–76) 151 (54.32) 60 (45.45) 43 (54.43) 48 (71.64) 0.002 Biological parents status Both alive 145 (52.16) 67 (50.76) 42 (53.16) 36 (53.73) Mother deceased 53 (19.06) 25 (18.94) 12 (15.19) 16 (23.88) Father deceased 42 (15.11) 17 (12.88) 16 (20.25) 9 (13.43) Both deceased 38 (13.67) 23 (17.42) 9 (11.39) 6 (8.96) 0.429 Open in a new tab a ART = Antiretroviral Therapy; b VL=Viral load; c Others: Grandmother n = 47, Grandfather n = 7, Aunt n = 35, Uncle n = 7, Stepmother n = 5, Stepfather n = 3, Sister n = 8, Brother n = 2; Biological parents: Mother n = 133, Father n = 31;*p values = Fisher’s exact test; Data are column percentages Health-related quality of life among CWHIV The overall total KIDSCREEN-27 HRQOL scores ranged from 65 to 131 among CWHIV [median score (IQR): 104 (94–113)] [Fig. One A]. The overall HRQOL median scores (IQR) were higher among CWHIV who were disclosed than among those who were not [105 (95–113) versus 100 (93–109); p = 0.015]. Higher scores were also observed in disclosed versus non-disclosed CWHIV on the Psychological Well-Being [31 (28–33) versus 30 (27–31); p = 0.035] and Parent Relations and Autonomy [26 (22–28) versus 24 (20–26); p = 0.006] domains of HRQOL (Fig. 1 , Table Two A). Fig. 1. Open in a new tab The median scores and interquartile ranges of HRQOL domains by HIV status disclosure among CWHIV during 2023 in Tanga region, Tanzania. The p-values are based on the Wilcoxon rank-sum (Mann-Whitney U test) Depressive symptoms among CWHIV Overall depression scores ranged from 0 to 32 among CWHIV (Fig. Two A). There were no significant differences in the median depression scores (IQR) between disclosed [5 (3–9)] and non-disclosed CWHIV [5 (3–10); ( p = 0.535)] (Table Four A, Fig. Three A). Fifty-five (19.78%) CWHIV reported scores of 12 and above, indicating being at-risk for depression [ 33 ]. Factors associated with overall HRQOL among CWHIV In multiple linear regression models, disclosed (partial and complete) CWHIV was associated with a 4.57-unit increase in overall HRQOL scores compared to HIV non-disclosed (Coefficient = 4.57, 95% CI: 0.87, 8.27; p = 0.016). Depression scores (Coefficient − 1.09, 95% CI: -1.30, -0.87; p < 0.001) and ART non-adherence (Coefficient = -4.27, 95% CI: -7.07, -1.48; p < 0.001) were both inversely associated with the overall HRQOL score. Duration of ART use, HIV VL, distance to health facility, residence, caregiver characteristics (education, occupation, parents’ status (deceased/alive), relationship to the child, and caregiver burden) were not associated with the overall HRQOL scores among CWHIV (Table 3 ). Table 3. Multiple linear regression results of factors associated with overall HRQOL scores among CWHIV during 2023 in Tanga Region, Tanzania Simple linear regression p value Multiple linear regression p value Coefficient (95% CI) Coefficient (95% CI) Child variables HIV disclosure No Reference d Reference Yes 4.06 (0.49, 7.64) 0.026 4.57 (0.87, 8.27) 0.016 Depression score -1.16 (-1.37, -0.95) < 0.001 -1.09 (-1.30, -0.87) < 0.001 ART adherence a Adherent Reference Reference Non-adherent -5.43 (-8.69, -2.16) 0.001 -4.27 (-7.07, -1.48) 0.003 Duration of ART use in years 0 0.56 (-0.07, 1.19) 0.079 0.25 (-0.43, 0.92) 0.473 VL (copies/ml) b <50 Reference Reference >=50 -5.07 (-11.93, 1.79) 0.147 -2.47 (-8.26, 3.32) 0.402 Unknown -2.32 (-5.88, 1.23) 0.199 -1.02 (-4.08, 2.05) 0.514 Age in years 8-10 Reference Reference 11-14 3.18 (-0.027, 6.38) 0.052 -1.95 (-5.87, 1.97) 0.329 Sex Female Reference Reference Male -0.17 (-3.28, 2.93) 0.912 -0.41 (-3.05, 2.23) 0.761 Education level Primary Reference Reference Secondary -0.03 (-5.87, 5.80) 0.991 -2.53 (-7.62, 2.56) 0.329 Residence Tanga City Council Reference Reference Muheza District -2.80 (-5.88, 0.28) 0.075 -2.09 (-4.75, 0.57) 0.124 Caregiver variables Relationship to the child c Others Reference Reference Biologic parents -3.17 (-6.28, -0.06) 0.046 -2.32 (-5.02, 0.39) 0.093 Education level None Reference Reference Primary 4.57 (-1.29, 10.43) 0.126 4.79 (-0.16, 9.73) 0.058 Secondary and above 4.89 (-2.09, 11.86) 0.169 2.80 (-3.059, 8.66) 0.347 Caregiver burden Low Reference Reference High -2.50 (-5.58, 0 0.58) 0.112 0.03 (-2.65, 2.72) 0.980 Distance to health facility Near Reference Reference Far -1.28 (-6.04, 3.49) 0.598 -2.08 (-6.07, 1.91) 0.306 Open in a new tab a ART = Antiretroviral, b VL =Viral load; c Others = Grandmother, Grandfather, Aunt, Uncle, Stepmother n, Stepfather; Biological parents= Biological Mother and Father; d Reference = Reference group Factors associated with the individual domains of the HRQOL among CWHIV In multiple linear regression models, disclosed CWHIV reported a two-unit increase in the Parent Relations and Autonomy score of the HRQOL compared to non-disclosed ( p = 0.007) (Table Five A) There was no association between HIV status disclosure and the other four domains of the HRQOL (Physical Well-Being, Psychological Well-Being, Social Support and Peers, School Environment). An increase in depression score was associated with a decrease in all five domains’ scores of HRQOL. CWHIV who were living with biological parents as their primary caregivers had lower scores on the Psychological Well-Being domain of HRQOL compared to those living with other relatives as primary caregivers ( p = 0.007). CWHIV who reported that both biological parents have died versus both alive ( p = 0.019) had higher Social Support and Peers domain scores of HRQOL (Table Five A). Factors associated with depressive symptoms among CWHIV In multiple negative binomial regression models, there was no significant association between HIV status disclosure and depressive symptoms. However, CWHIV reporting non-ART adherence (Coefficient = 0.28, 95% CI: 0.06, 0.49; p = 0.013) compared to those reporting ART adherence, had higher depression scores. Higher depression scores were also observed among CWHIV with unsuppressed versus suppressed VL (Coefficient = 0.57, 95% CI: 0.13, 1.01; p = 0.010); residents of Muheza District versus Tanga City Council (Coefficient = 0.23, 95% CI: 0.01, 0.44; p = 0.040); and CWHIV with self-employed versus formally employed caregivers (Coefficient = 0.46, 95% CI: 0.04, 0.87; p = 0.030). None of the other factors assessed were associated with depression scores (Table 4 ). Table 4. Multiple negative binomial regression results of factors associated with depression scores among CWHIV during 2023 in Tanga region, Tanzania Simple negative binomial regression p value Multiple negative binomial regression p value Coefficient (95% CI) Coefficient (95% CI) Child variables HIV disclosure No Reference d Reference Yes -0.09 (-0.32, 0.15) 0.482 0.08 (-0.20, 0.36) 0.590 Age in years 8-10 Reference Reference 11-14 -0.25 (-0.46, -0.04) 0.018 -0.24 (-0.54, 0.05) 0.110 Sex Female Reference Reference Male -0.01 (-0.22, 0.19) 0.893 -0.03 (-0.24, 0.17) 0.735 Education level Primary Reference Reference Secondary -0.19 (-0.58, 0.20) 0.345 -0.08 (-0.49, 0.32 0.680 Residence , 0.32 Tanga City Council Reference Reference Muheza District 0.15 (-0.05, 0.36) 0.138 0.23 (0.01, 0.44) 0.040 ART adherence a Adherent Reference Reference Non-adherent 0.21 (-0.01, 0.43) 0.060 0.28 (0.06, 0.49) 0.013 ART use in years -0.05 (-0.09, -0.01) 0.014 -0.03 (-0.08, 0.03) 0.366 VL (copies/ml) b <50 Reference Reference >=50 0.42 (-0.02, 0.86) 0.061 0.57 (0.13, 1.01) 0.010 Unknown 0.15 (-0.78, 0.39) 0.191 0.22 (-0.01, 0.46) 0.065 Caregiver variables Occupation Formal Employment Reference Reference Self-employ & business 3.15 (0.28, 6.01) 0.031 0.46 (0.04, 0.87) 0.03 Subsistence farmer 1.98 (-0.85, 4.80) 0.170 0.19 (-0.23, 0.61 0.374 Relationship to the child c Others Reference Reference. Biologic parents 0.13 (-0.07, 0.34) 0.204 0.07 (-0.14, 0.27) 0.531 Caregiver burden 0.13 (-0.07, 0.34) Low Reference Reference High 1.10 (-0.36, 2.56) 0.138 0.08 (-0.14, 0.29) 0.479 Distance to health facility Near Reference Reference Far -0.05 (-0.36, 0.27) 0.775 -0.10 (-0.40, 0.21) 0.525 Open in a new tab a ART = Antiretroviral, b VL =Viral load; c Others = Grandmother, Grandfather, Aunt, Uncle, Stepmother n, Stepfather; Biological parents= Biological Mother and Father; d Reference = Reference group Discussion The findings from our study show that three-quarters of CWHIV between the ages of 8–14 years had their HIV status disclosed to them in Muheza District and Tanga City Councils, in Tanzania. Child disclosure of HIV status was associated with better overall HRQOL, but not the severity of self-reported depressive symptoms in our study population. The disclosure rate (75.90%) among CWHIV observed in our study is higher than that reported in earlier studies in Tanzania (60.00%) [ 16 ] and Kenya (19.00%) [ 36 ] among similar age groups (age range: 10–15 years). Encouragingly, disclosure rates were higher among older age groups, with just 6% of CWHIV aged 11–14 not fully or partially informed of their HIV status, the time by which full disclosure is recommended. This reflects progress made towards achieving the Tanzania national HIV/AIDS guideline in paediatric HIV status disclosure [ 26 ]. We did not assess reasons for non-disclosure; however, they are described in many other studies in SSA. The most common barriers to HIV disclosure to CWHIV from the perspectives of parents/caregivers include fear of stigma and isolation, and the fear of psychological impacts on children who are disclosed [ 37 , 38 ] and concerns about younger children, who may be too young to understand their diagnosis fully, disclosing their diagnosis to non-family members [ 39 ]. Other barriers include a lack of disclosure skills among parents/caregivers or concerns about children’s feelings and cognitive maturational ability to understand the nature of paediatric HIV illness [ 18 , 40 ]. In addition, for all the fully disclosed CWHIV in our study, only 12.88% of disclosure events were led by their biological parents alone, and almost half (50.76%) were led by biological parents assisted by health care providers. Our data suggests an ongoing need to strengthen strategies to encourage early and full HIV status disclosure amongst caregivers of CWHIV. In this study, HIV status disclosure was associated with higher HRQOL. This finding is similar to a Tanzanian cross-sectional survey of CWHIV aged 6–17, in which HIV status disclosure was associated with better HRQOL, as measured by all 26 items of the WHOQOL-BREF [ 22 ]. However, in a subsequent Tanzanian study among CWHIV aged 10–15 years, showed no association between HIV status disclosure and HRQOL [ 16 ]. The latter study, utilized only seven of the 26 items from the WHOQOL-BREF were, which may account for the differences in findings from those described here. Similarly, a prospective US cohort of 395 CWHIV aged 5–16 found no significant associations between HIV status disclosure and the six QOL domains (the general health perception, symptom distress, psychological status, physical functioning, social/role functioning and health care utilization) of the General Health Assessment for Children (GHAC) [ 41 ]. To better understand the multidimensional effects of HIV status disclosure on HRQOL among CWHV in Tanzania, longitudinal studies are warranted for precisely establishing the causal links between HIV status disclosure and outcomes of interest. In our study, both ART non-adherence and depressive symptoms were associated with overall lower CWHIV-reported HRQOL. ART non-adherence was also associated with more depressive symptoms. Findings from other studies show CWHIV with significant depression symptom severity are more likely to report a wide range of maladaptive behaviours. These behaviours may include substance use (for example, alcohol and nicotine use) as well as perpetration of violence that may impact overall HRQOL and ART adherence [ 42 , 43 ]. A Tanzanian qualitative survey in urban children and young adults with HIV (11–24 years), describes experiences with complex depressive symptoms expressed as physical, behavioural, or somatic complaints, adversely affecting ART adherence, and leading to substance use, and a decrease in overall perceived quality of life [ 44 ]. Furthermore, a cross-sectional survey in Northern Tanzania among adolescents living with HIV, with a mean age of 15 years, sheds some light on predictors of depression [ 43 ]. Our findings and those from elsewhere in Tanzania [ 44 , 45 ] suggest the importance of strengthening psychological health services in paediatric and adolescent HIV care and treatment clinics to improve HRQOL. When examining the individual domains of HRQOL in our study, CWHIV living with biological parents reported lower HRQOL in the psychological well-being domain compared to those living with other primary caregivers. Similar findings have been reported in another study in Tanzania [ 22 ]. This could be attributed to underlying parental medical conditions or related financial and other constraints faced by biological parents of CWHIV, which were not explored in our study. In this regard, routine assessment and provision of psychological support for both parents and their CWHIV attending clinics are needed. In addition, there is a need to explore more about the livelihoods of biological parents living with their CWHIV to identify threats to their child’s HRQOL that are amenable to intervention. It should be noted in our study that CWHIV who lost both biological parents presented higher Social Support and Peers domain HRQOL scores. Losing biological parents in childhood among CWHIV may have resulted in stronger friendship bonds and enhanced psychosocial support from peers. We found no association between HIV status disclosure and depressive symptoms among CWHIV in our study, similar to a study in Kenya among 130 CWHIV aged 10–14 years [ 46 ]. This absence of an association is valuable information for supporting caregivers who are concerned that disclosing HIV status could worsen the child’s mental health [ 47 , 21 ]. This caregiver concern is frequently reported as a reason for non-disclosure in several low-resource settings [ 37 , 48 , 49 ]. Our findings contrast with those from two cross-sectional studies among CWHIV, one in Kenya ( N = 792) [ 11 ] and one in Tanzania (age 10–15 years; N = 366) [ 16 ], where an increase in depressive symptoms was reported after HIV status disclosure. Differences in study design and in the approach to disclosure and clinic support could have accounted for this contrasting data. Our findings suggest that there are few disadvantages to disclosing HIV status to CWHIV according to recommended guidelines when considering the impact on depression and quality of life. Our study has several strengths. A comprehensive dataset from our survey of over 270 children across a wide age range includes both CWHIV and caregiver data. Self-report of depressive symptoms and HRQOL in the past two weeks was provided by the child. Such self-reporting offers insights into the individual child’s experiences of well-being from their perspective, which increases confidence in the findings for these reported outcomes. There were also several limitations. Our study was conducted in two councils of the Tanga Region, hence the results may not necessarily be generalized to other paediatric populations. HIV status disclosure was subjectively reported by the caregiver and therefore may not reflect the child’s perception. Also, our study did not observe how disclosure was conducted, and we were unable to assess the quality of the HIV status disclosure process. The small sample size limited our ability to model HIV disclosure as a three-level variable (none, partial, full), requiring category collapse that may have obscured meaningful differences in HRQOL and depressive outcomes across disclosure categories. Further studies of differences based on degrees of disclosure are warranted. Since our study was cross-sectional, the temporal or causal relationships between HRQOL, depressive symptoms and HIV status disclosure could not be determined. Conclusion In our study, HIV status disclosure to children with HIV (CWHIV) was associated with better overall HRQOL and was not associated with increased depressive symptoms. Our findings suggest there is no reason for delaying disclosure beyond the recommended age due to concerns about adverse effects on HRQOL or mental health. Interventions should prioritize timely, guideline-concordant disclosure and actively involve families in the design and implementation of disclosure-support strategies. Supplementary Information Below is the link to the electronic supplementary material. Supplementary Material 1. (344.1KB, zip) Acknowledgements We acknowledge the excellent technical and field assistance of Bernardina (A) Ruta, Sarah J. Ngede, Joyce R. Kalaghe, Josephine Mhina, Edith (B) Mwambene, John H. Kwingwa, and Ashraf A. Rwabigimbo. We are grateful to all Medical Officers in charge and the Regional Administrative Secretary for permission to conduct the study. We thank the staff of the health facilities involved in Muheza District and the Tanga City Council for their extended cooperation during data collection. Many thanks to all the children with HIV (CWHIV) and their families who agreed to participate in this study. This research study was funded by the Fogarty International Centre of the National Institutes of Health, grant number D43TW010946. The content is solely the authors’ responsibility and does not necessarily represent the official views of the National Institutes of Health. Abbreviations AIDS Acquired immunodeficiency syndrome ART Antiretroviral therapy CDI II Children’s depression inventory-II CI Confidence interval CTC Care and treatment centre CWHIV Children with HIV GHAC General health assessment for children HIV Human Immunodeficiency Virus HRQOL Health-related quality of life IQR Interquartile range SD Standard deviation SMAQ Simplified medication adherence questionnaire SSA Sub-Saharan Africa TB Tuberculosis TPT TB preventive therapy VL Viral load NatHREC National health research committee NIMR National institute for medical research WHOQOL-BREF World health organization quality of life assessment-abbreviated Author contributions Veneranda M. Bwana, Nahya S. Masoud, Sylvia F. Kaaya, Craig Garfield, and Karim P. Manji conceived the study. Veneranda M. Bwana supported study implementation; led the study design, data collection, analysis and interpretation. Veneranda M. Bwana wrote the original draft of the manuscript. Nahya S. Masoud, Sylvia F. Kaaya, Craig Garfield, Karim P. Manji, Innocent S. Yusuph, Matthew T. Caputo, Pendael Z. Machafuko, Lisa R. Hirschhorn, Claudia A. Hawkins, Bethann Conover, and Erasto V. Mbugi contributed to the study design, interpretation, and drafting of the manuscript. All authors read and approved the final version of the manuscript. Funding This study was funded by the Fogarty International Center of the National Institutes of Health, grant number D43TW010946. Data availability All data required for this manuscript have been provided within the manuscript and its supplementary information files. In addition, data are available to an individual upon reasonable request to the corresponding author. Declarations Ethics approval and consent to participate Ethical approval was obtained from the National Health Research Committee of the National Institute for Medical Research (Ref: NIMR/HQ/R.8a/Vol. 1X/4405), and the Institutional Review Board of the Muhimbili University of Health and Allied Sciences (Ref.No.DA.282/298/01.C/1587). Permission to access health facilities was sought from the President’s Office of Regional Administration and Local Government through the respective Regional Administrative Secretary and Hospital Authorities. Written informed consent was obtained from parents/caregivers, and additional written informed assent was obtained from CWHIV. Consent for publication Not applicable. Competing interests The authors declare no competing interests. Footnotes Publisher’s Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. References 1. UNICEF. United Nations International Children’s Emergency Fund. 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