Pain, Anger, and the Fear of Being Discovered Persist Long after the Disclosure of HIV Serostatus among Adolescents with Perinatal HIV in Rural Communities in South Africa

Maseko, Yvonne; Madiba, Sphiwe

doi:10.3390/children7120261

Cited by 12 publications

(12 citation statements)

References 47 publications

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“…Challenges encountered in HIV status disclosure to adolescents can include adolescents’ negative emotions following disclosure, coping with HIV stigma, and anxiety about the future, all of which may hinder HIV care engagement [ 8 , 10 , 27 , 28 ]. Meanwhile, non-disclosed adolescents may struggle with understanding the need to continue treatment without knowing its purpose or importance [ 29 ].…”

Section: Discussionmentioning

confidence: 99%

“…Their care is complicated by challenges specific to the adolescent developmental stage. For adolescents with perinatal HIV infection, this includes learning of their HIV status, and coping with a stigmatized and complex medical condition, while striving to achieve developmental tasks of identity formation and peer socialization [ 6 – 8 ].…”

Section: Introductionmentioning

confidence: 99%

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“I have never talked to anyone to free my mind” – challenges surrounding status disclosure to adolescents contribute to their disengagement from HIV care: a qualitative study in western Kenya

et al. 2022

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Introduction Adolescents living with HIV (ALHIV, ages 10–19) experience complex barriers to care engagement. Challenges surrounding HIV status disclosure or non-disclosure to adolescents may contribute to adolescent disengagement from HIV care or non-adherence to ART. We performed a qualitative study to investigate the contribution of disclosure challenges to adolescent disengagement from HIV care. Methods This was a qualitative study performed with disengaged ALHIV and their caregivers, and with healthcare workers (HCW) in the Academic Model Providing Access to Healthcare (AMPATH) program in western Kenya. Inclusion criteria for ALHIV were ≥1 visit within the 18 months prior to data collection at one of two clinical sites and nonattendance ≥60 days following their last scheduled appointment. HCW were recruited from 10 clinics. Analysis was conducted by multiple independent coders, and narratives of disclosure and care disengagement were closely interrogated. Overarching themes were elucidated and summarized. Results Interviews were conducted with 42 disengaged ALHIV, 32 caregivers, and 28 HCW. ALHIV were average age 17.0 (range 12.9–20.9), and 95% indicated awareness of their HIV diagnosis. Issues surrounding disclosure to ALHIV presented important barriers to HIV care engagement. Themes centered on delays in HIV status disclosure; hesitancy and reluctance among caregivers to disclose; struggles for adolescents to cope with feelings of having been deceived prior to full disclosure; pervasive HIV stigma internalized in school and community settings prior to disclosure; and inadequate and unstructured support after disclosure, including for adolescent mental health burdens and for adolescent-caregiver relationships and communication. Both HCW and caregivers described feeling inadequately prepared to optimally handle disclosure and to manage challenges that may arise after disclosure. Conclusions Complex challenges surrounding HIV status disclosure to adolescents contribute to care disengagement. There is need to enhance training and resources for HCW, and to empower caregivers to support children and adolescents before, during, and after HIV status disclosure. This should include counseling caregivers on how to provide children with developmentally-appropriate and accurate information about their health from an early age, and to support adolescent-caregiver communication and relationships. Optimally integrating peer support can further promote ALHIV wellbeing and retention in care.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“I have never talked to anyone to free my mind” – challenges surrounding status disclosure to adolescents contribute to their disengagement from HIV care: a qualitative study in western Kenya

et al. 2022

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“… 13 Researchers have found that children who were told lies before disclosure perceived deflection as deception and a betrayal of trust, experienced resentment, disappointment and anger towards their caregivers for having kept silent and having lied about their diagnosis. 1 , 15 , 40 - 42 …”

Section: Discussionmentioning

confidence: 99%

Truth, Deception, and Coercion; Communication Strategies Used by Caregivers of Children with Perinatally Acquired HIV During the Pre-Disclosure and Post-Disclosure Period in Rural Communities in South Africa

Molokwane

Madiba

2021

Global Pediatric Health

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Typically, children with perinatal HIV (PHIV) receive antiretroviral treatment (ART) for a long time prior to receiving disclosure. Communication with children about HIV and treatment is critical for monitoring adherence and retention in care. However, there is a dearth of information on communication between caregivers and their children. This study examines what and how caregivers tell their their children about their illness and medication in the pre-disclosure and post-disclosure period. A qualitative study using semi-structured one-on-one interviews and focus group discussions was conducted with caregivers recruited via purposive sampling from a rural sub-district in South Africa. The interviews were analyzed using thematic analysis. The sample consisted of 38 caregivers, 24 of whom were the children’s biological mothers, 20 had disclosed to the children and 18 had not done so. Caregivers who had disclosed had told their children the truth and named the disease as HIV, but communication about HIV was infrequent and focused on pill taking. Those who had not disclosed had lied, deflected illness-related information, and attributed the children’s ill health to co-morbid conditions. To enforce adherence, most caregivers used coercion and threats of the grave consequences of non-adherence as a communication strategy. Those who had not disclosed used deception, deflecting, and coercion as strategies for coping through the pre-disclosure period. There is a need for healthcare workers to prepare, support, and empower caregivers to develop appropriate responses to children’s questions and to understand the implications of deception on future full disclosure and children’s acceptance of their HIV status.

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“…Unfortunately, we were unable to document the adverse incidents after HIV disclosure. Transient negative psychological effects and prolonged negative reactions that have required the health care workers and parents' support have been described in the literature ( 54 , 55 ).…”

Section: Discussionmentioning

confidence: 99%

24-Month Clinical, Immuno-Virological Outcomes, and HIV Status Disclosure in Adolescents Living With Perinatally-Acquired HIV in the IeDEA-COHADO Cohort in Togo and Côte d'Ivoire, 2015–2017

et al. 2021

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Background: Adolescents living with perinatally-acquired HIV (APHIV) face challenges including HIV serostatus disclosure. We assessed their 24-month outcomes in relation to the disclosure of their own HIV serostatus.Methods: Nested within the International epidemiologic Database to Evaluate AIDS pediatric West African prospective cohort (IeDEA pWADA), the COHADO cohort included antiretroviral (ART)-treated APHIV aged 10–19 years, enrolled in HIV care before the age of 10 years, in Abidjan (Côte d'Ivoire) and Lomé (Togo) in 2015. We measured the HIV serostatus disclosure at baseline and after 24 months and analyzed its association with a favorable combined 24-month outcome using logistic regression. The 24-month combined clinical immuno-virological outcome was defined as unfavorable when either death, loss to follow-up, progression to WHO-AIDS stage, a decrease of CD4 count >10% compared to baseline, or a detectable viral load (VL > 50 copies/mL) occurred at 24 months.Results: Overall, 209 APHIV were included (51.6% = Abidjan, 54.5% = females). At inclusion, the median CD4 cell count was 521/mm3 [IQR (281–757)]; 29.6% had a VL measurement, of whom, 3.2% were virologically suppressed. APHIV were younger in Lomé {median age: 12 years [interquartile range (IQR): 11–15]} compared to Abidjan [14 years (IQR: 12–15, p = 0.01)]. Full HIV-disclosure increased from 41.6% at inclusion to 74.1% after 24 months. After 24 months of follow-up, six (2.9%) died, eight (3.8%) were lost to follow-up, and four (1.9%) were transferred out. Overall, 73.7% did not progress to the WHO-AIDS stage, and 62.7% had a CD4 count above (±10%) of the baseline value (48.6% in Abidjan vs. 69.0% in Lomé, p < 0.001). Among the 83.7% with VL measurement, 48.8% were virologically suppressed (Abidjan: 45.4%, Lomé: 52.5%, p <0.01). The 24-month combined outcome was favorable for 45% (29.6% in Abidjan and 61.4% in Lomé, p < 0.01). Adjusted for baseline variables, the 24-month outcome was worse in Lomé in those who had been disclosed for >2 years compared to those who had not been disclosed to [aOR = 0.21, 95% CI (0.05–0.84), p = 0.03].Conclusions: The frequency of HIV-disclosure improved over time and differed across countries but remained low among West African APHIV. Overall, the 24-month outcomes were poor. Disclosure before the study was a marker of a poor 24-month outcome in Lomé. Context-specific responses are urgently needed to improve adolescent care and reach the UNAIDS 90% target of virological success.

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Pain, Anger, and the Fear of Being Discovered Persist Long after the Disclosure of HIV Serostatus among Adolescents with Perinatal HIV in Rural Communities in South Africa

Cited by 12 publications

References 47 publications

“I have never talked to anyone to free my mind” – challenges surrounding status disclosure to adolescents contribute to their disengagement from HIV care: a qualitative study in western Kenya

“I have never talked to anyone to free my mind” – challenges surrounding status disclosure to adolescents contribute to their disengagement from HIV care: a qualitative study in western Kenya

Truth, Deception, and Coercion; Communication Strategies Used by Caregivers of Children with Perinatally Acquired HIV During the Pre-Disclosure and Post-Disclosure Period in Rural Communities in South Africa

24-Month Clinical, Immuno-Virological Outcomes, and HIV Status Disclosure in Adolescents Living With Perinatally-Acquired HIV in the IeDEA-COHADO Cohort in Togo and Côte d'Ivoire, 2015–2017

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