Perceptions of adolescents perinatally infected with HIV regarding the self-disclosure of their status

Abstract

Most children born with HIV are maturing into adolescence due to the accessibility of medical support, specifically the availability of antiretroviral drugs. During adolescence, children are faced with critical adolescent developmental tasks in that they develop physically, cognitively and psychosocially, including assuming independence. As the adolescents living with perinatally acquired HIV mature, their care-givers start disclosing the adolescents’ HIV status to them. Attaining the knowledge of living with HIV is encompassed with worries of how to manage the illness as well as other social ills such as taking care of sick loved ones and dealing with losses of loved ones. It is also during this stage of development that adolescents living with HIV begin to form intimate relationships, thus issues of self-disclosing their status become a concern. The aim of this study was to explore and describe the perceptions of adolescents perinatally infected with HIV regarding the self-disclosure of their status to others. Following this, it was hoped that the study would come to conclusions and make recommendations regarding the wellness of and support for adolescents living with perinatally acquired HIV. A qualitative descriptive research approach with an interpretive paradigm was used to explore and describe the perceptions of the adolescents. A multiple case study design was suitable to explore and describe the perceptions of participants as they see it. Ethical approval for the study was obtained from the relevant body. A sample of 10 adolescents perinatally infected with HIV, whose status had been disclosed to them and were receiving clinical care and psychosocial support at a local clinic in Port Elizabeth, were selected through purposive sampling. Consent to undertake the study was provided by the head of the clinic in Port Elizabeth as well as by the adolescents’ caregivers. Assent to partake in the study was also provided by the participants. A deeper understanding of participants perceptions was explored through utilising multiple sources of data collection methods which included reflective journals and semi-structured interviews. Multiple data collection methods were used in order to collect rich data and for crystallisation of the data to take place. After the data was analysed themes were identified and described leading to the findings of the study. The findings of the study confirmed the perceptions of adolescents living with perinatally acquired HIV regarding the self-disclosure of their status. Adolescents perinatally infected with HIV perceive certain conditions as conducive to self-disclose their status against other conditions that were perceived to be unfavourable for the self-disclosure of their HIV status. Conditions permitting self-disclosure included the availability of trusting relationships with people who understand them as well as the need for support which subsequently highlights the benefits of self-disclosure. Benefits included and are not limited to clinical support from healthcare professionals and an understanding from teachers when they are absent from school during their monthly clinical visits. Although adolescents see the benefits of self-disclosing their status they are however aware of the possible negative effects to self-disclose their status such as stigmatisation and discrimination manifested through isolation from peers and through moral judgement and rejection from the community. Peers living with HIV are perceived to be the closest people providing them with trusting and open relationships that foster self-disclosure. Adolescents also perceived adulthood as a phase were self-disclosing their HIV status could be possible with the belief that they would be more mature when they are adults. Recommendations are made for healthcare professionals and policy makers to formulate and implement guidelines on supporting adolescents living with perinatally acquired HIV regarding the self-disclosure of their status. Providing measures of support for adolescents living with perinatally acquired HIV in their different ecological systems could widen the choice of to whom and when to self-disclose their HIV status.