Costs and benefits of secrecy: the dilemma experienced by adolescents seropositive for HIV

Abstract

This study explored the experiences of the first generation of adolescents who acquired HIV through vertical transmission when disclosing their diagnosis to friends and romantic partners. The study sample was selected by convenience, with 20 patients (13-20 years old) participating in a qualitative investigation using individual interviews (language: Portuguese; duration: 45 minutes). The participants were followed in specialized clinics for the treatment of pediatric AIDS in São Paulo, Brazil. The results suggest that families who live with HIV tend to keep it a secret, and such behavior is learned and accepted unquestioningly as natural. Respect for privacy and the fear of rejection, coupled with the belief that information about their disease will be spread, are the main beliefs with which participants justify their secrecy. In terms of romantic relationships, adolescents were aware that their HIV status should at some point be shared with current or future sexual partners. However, the decision to reveal an HIV diagnosis in romantic relationships is permeated by anxieties, uncertainties about the right time, and fear of abandonment. In any case, telling the truth requires trust, guarantees of the other's love, and, in some cases, probing romantic partners beforehand to learn their perceptions about the disease. Participants who had experiences disclosing their HIV status shared positive and negative results, including emotional support, acceptance, and understanding, along with ostracism, discrimination, and abandonment by family members. The findings of this paper reinforce the challenges of revealing an HIV diagnosis to third parties. It requires understanding the meaning and importance of the secret for each patient, along with the conflict between the right to confidentiality and the responsibility of treating others exposed to the disease. All these aspects should be discussed extensively with this population and incorporated into clinical practice.

Adolescents with HIV and transition to adult care in the Caribbean, Central America and South America, Eastern Europe and Asia and Pacific regions

“…Non-adherence to treatment is frequent, sometimes indicating psycho-social situations (e.g. lack of self-efficacy) which need attention [76], while family social isolation, stigma (and resulting issues around disclosure [77]), anxiety and depression, and substance misuse are examples of common challenges that affect treatment outcomes of children and adolescents. Some of these situations can be identified and addressed during follow-up of adolescents and their caregivers [73,78,79].…”

Creating Space for Youth Voice: Implications of Youth Disclosure Experiences for Youth-Centered Research

“…Experienced or anticipated negative reactions from others, such as bullying, teasing, social exclusion, disbelief, and rejection, can make youth hesitant to disclose their chronic illness (Barned et al, 2016;Benson et al, 2015;Boyd & MacMillan, 2005;Brouwer et al, 2012;Coyne et al, 2019;Fair & Albright, 2012;Gronholm et al, 2017;Janin et al, 2018;Kaushansky et al, 2017;Protudjer et al, 2014;Williams & Chapman, 2011). Perhaps because of these negative reactions, some youth report only disclosing information about their illness to those with whom they have established close, trusting relationships (Brouwer et al, 2012;Galano et al, 2017;Gronholm et al, 2017;Janin et al, 2018;Kaushansky et al, 2017;Protudjer et al, 2014). For example, one young man from the Youth Living with Anxiety study shared that he disclosed his anxiety in different ways and to different extents with his mother, grandmother, and friends.…”

“…This resulted in a much greater restriction on how willing the young person was to discuss her condition and any other health issues with her parents, to the extent that she nearly did not discuss major surgery unrelated to her chronic health condition. In other instances, parents may discourage their children from disclosing their condition (Galano et al, 2017) even when the youth want to share their stories, highlighting that disclosure is a process often characterized by a negotiation of power dynamics.…”

“…The work of disclosure begins long before the act of disclosing and may include deciding what and how to tell a person, developing the narrative to be shared, and mentally rehearsing or imagining the disclosure. Youth have reported experiencing considerable anxiety and fear related to the disclosure process (Brouwer et al, 2012;Gee et al, 2007;Janin et al, 2018;Kaushansky et al, 2017), and emotions such as guilt, sadness, and embarrassment may strongly influence their decision to disclose (Galano et al, 2017;Gronholm et al, 2017). For youth in the INGAUGE ® research program, disclosure involved a lot of mental and emotional work in not only making the decision to disclose, but also dealing with the work involved with the after-effects and any possible fall-out.…”

“If It Ever Really Hurts, I Try Not to Let Them Know:” The Use of Concealment as a Coping Strategy Among Adolescents With Chronic Pain

“…This coping strategy is known as “concealment,” and research on its impact on health outcomes has been mixed ( Camacho et al, 2020 ). Whereas the lack of disclosure of illness may allow individuals with concealable stigma identities to avoid potential negative treatment by others ( Quinn and Chaudoir, 2009 ; Barned et al, 2016 ; Benson et al, 2017 ; Galano et al, 2017 ), some evidence suggests that concealment leads to poorer physical and psychological well-being ( Frable et al, 1998 ; Quinn et al, 2017 ; Laird et al, 2020 ), possibly due to the consequences of internalizing distress. Concealment also prevents access to social support, which is a protective factor in adapting to chronic pain ( Ross et al, 2018 ).…”