Exploring the health and wellbeing of adolescents living with HIV as they grow into adulthood: Unique challenges in a low resource setting
1 juli 2020
UAntwerp - online - - - - -
E.prof. R. Colebunders, Dr. C. Nöstlinger and prof. P. Mukose
PhD defence Sabrina Kitaka - Faculty of Medicine and Health Sciences
Advances in early infant diagnosis of HIV infection in HIV exposed children and the increased availability and access to pediatric HIV treatment have reduced the mortality and morbidity of children born with HIV, resulting into more children surviving into adolescence. Eighty percent of all adolescents living with HIV (ALHIV) globally live in sub Saharan Africa. Uganda, like many resource limited countries has made significant strides in the fight against HIV/AIDS. The rapid scale up of anti-retroviral therapy (ART) in this country has decreased the morbidity and mortality of ALHIV. As these ALHIV mature and their life expectancy increases, they face several challenges ranging from adhering to long term ART and negotiating through various situations and relationships to survive into adulthood. While the majority of available studies including ALHIV focus on their medical treatment, this thesis aims to go beyond the treatment response as such. The thesis describes not only the response of ART on the growth and development of perinatally infected adolescents, but puts emphasis on the exploration of the psychosocial challenges ALHIV face as they grow up and their lives become normalized. This includes also describing the sexual and reproductive health needs and sexual activity among ALHIV. This thesis adds a comprehensive description of psychosocial and psychosexual challenges as they manifest in clinical/treatment settings dealing with ALHIV to the available body of knowledge on the needs of ALHIV. Its results therefore are relevant not only from an academic perspective but also for health care providers working in such settings. The findings may contribute to increasing youth-friendly, evidence-based HIV services.
This thesis includes studies conducted in Uganda and Kenya which are among the high HIV burden countries. Four studies resulting in five articles highlight three intertwined challenges related to disclosure of HIV status, treatment adherence and prevention of HIV transmission. Based on our study findings, strategies to improve the health and wellbeing of ALHIV in resource limited settings are proposed. In the first study, adolescents with predominantly perinatally-acquired HIV infection and significant disease burden showed appropriate virological and immunological response to ART in addition to having clinically significant improvements in growth and some improvement in sexual maturation. In the second study, we examined the perceptions of young people living with HIV in Uganda about current norms around HIV serostatus and treatment disclosure. Our findings reinforce the concept of HIV disclosure as a process, not a one-time event. We studied disclosure processes and outcomes.
Two studies assessed the sexual and reproductive health behaviors of ALHIV: a qualitative study explored the meaning ALHIV attribute to sexuality and their sexual norms in the light of shaping their sexual and social identities. About a quarter of the young participants reported prior or current sexual experience. The quantitative study demonstrated that early sexual activity remains an important risk factor for HIV transmission and potentially results in negative health consequences including onward transmission of sexually transmitted infections.
The two studies revealed knowledge gaps relating to reproductive health, HIV transmission, and contraceptive methods. Motivations for safe preventive sexual behavior included having specific future aspirations, good counseling, and fear of the consequences of sexual activity such as unwanted pregnancies. Barriers to adopting preventive behaviors included personal factors (i.e. alcohol use), interpersonal factors (i.e. ignorance of serostatus of sexual partners, peer pressure), social factors (HIV-related stigma) and poverty as a structural determinant. In addition, desire to have children played an important role for the older ones. Young seropositive people in this setting lacked specific behavioral skills, such as disclosure of HIV status to their sexual partners, which was closely linked to fear of rejection and stigma.
This thesis clearly demonstrates that HIV positive adolescents and young people are able to respond well to ART and that they are able to grow; however, as they grow, they may face specific challenges of disclosure and navigation of their sexual maturation. Interventions in this field need to be age appropriate, and based on the psychosocial developmental stage as well as being tailored to young people’s specific needs. Structural interventions should at the same time address and reduce HIV-related stigma and support the socio-economic needs of young people living with HIV.
Despite the increased attention and commitment to the pediatric and adolescent HIV agenda, further efforts are required to respond to the glaring gaps. The global AIDS response is at a critical point where the successes of antiretroviral therapy provision is now competing with complacency. The ambitious global targets of ending AIDS are not being realized in a timely manner as expected by the UNAIDS. For instance, there are still nearly a million people dying each year from AIDS-related illnesses and only three out of every four persons living with HIV knows their HIV status. These targets are even less achieved for adolescents and young people who contribute to the highest AIDS-related deaths and the new transmissions.
Moreover, there is a limited number of health-care workers specialized in taking care of adolescents and young people. There is also continuing stigma and discrimination and this could result in a prevention crisis. When ALHIV start to engage in sexual activity and are not able to disclose their HIV status to their sexual partners there is an added risk of transmission. This is particularly plausible when they are not adhering well to their treatment and remain virally unsuppressed. For ALHIV, it is critical that the interventions put in place to prevent onward transmission, and maintain their healthy livelihood are geared towards making these interventions reachable to them in an adolescent responsive manner. This can be done through evidence-based interventions and policies that comprehensively address the multiple needs of the ALHIV.