A Phenomenological Account of HIV Disclosure Experiences of Children and Adolescents from Northern and Southern Ghana

Abstract

Disclosure of HIV status to infected children, though challenged by caregiver dilemma, remains central in achieving the United Nations Programme on HIV and AIDS (UNAIDS) global goal of 90/90/90. This study explores children’s HIV disclosure experiences across Northern and Southern Ghana. A qualitative interpretative phenomenological design facilitated the recruitment of 30 HIV positive disclosed children and adolescents aged 9–19 years in 12 antiretroviral treatment (ART) centers in Northern and Southern Ghana between January 2017 and June 2018. Data was collected via in-depth interviews. We used phenomenological analysis applying concepts and categories identification, patterns and interconnections searching, mapping, theme building and constant comparative technique to draw conclusions. Disclosure of HIV status to children occurred with little or no preparation. Caregivers intentionally or out of dilemma often prolonged or postponed disclosure to when children aged older. Illness severity and disease progression principally defined the need for disclosure. Children preference for early status disclosure averaged at age 10 was demonstrated despite the initial disclosure experience of shock and disappointment. There was improved medication adherence despite the challenge of limited knowledge about HIV transmission, financial difficulty and food insecurity. Context and culturally adapted pre- and post- disclosure guideline laced with social protection package is needed to support HIV positive children.

Autonomy-Supportive Healthcare Climate and HIV-Related Stigma Predict Linkage to HIV Care in Men Who Have Sex With Men in Ghana, West Africa

“… 61 Several factors have been shown to affect HIV care linkage and continuity among adolescent/young adults. These factors include interpersonal forms of stigma, 62 , 63 healthcare service delivery models that are incongruent with adolescent developmental stages and social preferences, 54 , 63 , 64 and concerns regarding the social consequences of tacit HIV-status disclosure from attending a “HIV clinic.” 65 - 67 In addition to HIV stigma, the youth in our sample were impacted by intersecting same-sex and gender non-conformity stigmas which may be a compounding factor that acted as a LTC barrier, albeit as a means of protection against risk of tacit disclosure of one’s marginalized sexual identity and HIV status.…”

Content validation to support the monitoring of disclosure of HIV diagnosis in childhood

“…As the time in contact with the health service is longer, the outcome will be a greater bond with the professionals, favoring the relationship and the communication process (36) . In addition, the child's health status may influence the decision; therefore, situations of hospitalization and worsening of the disease are indicative of postponing the disclosure (37) .…”

Risk factors for HIV virological non‐suppression among adolescents with common mental disorder symptoms in Zimbabwe: a cross‐sectional study

“…Caregivers of children with perinatally acquired HIV can be reticent to tell the child their HIV status. Their concerns relate to the impact they anticipate the knowledge would have on their child, and also to the complex, relational entanglement involved in the admission [ 49 , 50 ]. Caregivers and healthcare staff can also underestimate adolescents’ understanding of living with HIV [ 51 ].…”