A description of the mental health outcomes of HIV positive adolescents accessing care in Johannesburg

A thesis completed by published work. Submitted to the School of Clinical Medicine, Faculty of Health Sciences, University of the Witwatersrand, in fulfillment of the requirements for the degree of Doctor of Philosophy. johannesburg, South Africa. September, 2017.Background: Adolescents living with HIV are an emerging group in the global HIV/AIDS epidemic. Mental health in this population impacts HIV care, treatment, consequential morbidity and secondary transmission. Perinatally infected HIV positive adolescents (PIA) have high prevalence of mental health disorders; loss and bereavement are particularly pervasive in their lives, however little is known about the mental health of PIA retained in care in South Africa. How PIA beliefs concerning their HIV infection are affected by the cumulative effect of bereavement (particularly of parents), the failure to disclose to them the cause of death and the manner in which they learn their own HIV positive status, is a subject understudied. Similarly, there is a paucity of research on effective ways to manage such bereavement. Resilience, or positive adaptation to challenging situations, may be particularly important for PIA, who are exposed to significant stigma, risks and stressors. However, there is limited research regarding adolescents in South Africa, partly because section 71 of the National Health Act (NHA) requires parental or guardian's consent. This presents a significant barrier to research on HIV infected adolescents aged under 18 years. The aim of this research is to describe the mental health of HIV positive adolescents (13-19 years) accessing care and treatment in Johannesburg and generate evidence to inform mental health policy for this population in South Africa. The study describes the mental health outcomes of this population with a focus on how bereavement and disclosure impacts on mental health, as well as how resilience is manifest in this group. Methods: Prior to commencement of the research, an order was obtained from the High Court in Johannesburg as upper guardian of minor children for the statutory parental or guardian’s consent. For the thesis, data from three studies are presented in five published papers. These studies were conducted using a combination of qualitative and quantitative techniques resulting in a mixed methods study design. For the quantitative study, HIV positive adolescents aged 13-19 years (n=343) accessing five pediatric antiretroviral clinics in Johannesburg were assessed using standardized measures for depression (Children’s Depression Inventory), anxiety (Children’s Manifext Anxiety Scale), post traumatic stress disorder (PTSD) (Child PTSD Checklist) and suicidality (MINI International Psychiatric Interview). In addition to mental health, the survey captured information regarding HIV, sexual reproductive health and coping. Descriptive and bivariate analyses were conducted on all variables using Statistica v13. Two qualitative studies were conducted. The first purposively selected 25 participants from the larger study. The aim was to identify elements of resilience through in-depth interviews in this group of PIA. The second identified the most and least symptomatic participants (n=26) from the larger cohort on scores for mental health (depression, anxiety, post traumatic stress disorder, suicidality). Drawings and written accounts of the loss of a significant attachment figure of participants were assessed and compared by professionals (art therapists, psychologists, social workers and counsellors) in three focus group discussions. The goal of this study was to understand the influence of bereavement on mental health and the use of drawing and writing in expressing the experience of loss. Data were analysed in NVIVO 10 using a thematic approach to coding. The final paper details the process of obtaining ethical approval for research with adolescents in public health facilities through a case study (this PhD). Results: Of the enrolled 343 participants, 27% were symptomatic for depression, anxiety or PTSD; 24% reported suicidality. Results indicated high rates of comorbidity amongst depression, anxiety and PTSD. Females scored significantly higher for depression (p<.001), anxiety (p<.01), and PTSD (p<.001) than males. Those reporting suicidality also reported significantly higher on all three mental health scales suggesting that suicidal individuals are more likely to present with higher levels of depression (p<.001), anxiety (p<.001) and PTSD (p<.001). Almost 90% did not feel that they belonged in the family with which they lived. Peer violence was significantly correlated to all mental health problems, also hunger, being inappropriately touched, being hit and being female. High exposure to violence was evident and not feeling safe at home or in community increased risk for all mental health disorders. Knowing one’s HIV status, however, was protective as was having dreams for the future. The qualitative studies highlighted that despite marked stressors in the lives of these adolescents, a high degree of resilience was described. Characteristics of resilience in this group included a pertinent set of beliefs, including a belief in fate and recognition of personal strength as a consequence of managing adversity. Character traits such as a pragmatic acceptance about one’s life, actively taking responsibility, and a robust self-esteem were evident. Social behaviours included the ability to pursue and access adults and healthcare to meet developmental needs, having a desire to support and help others and challenging HIV related stigma. These characteristics were underscored by the capacity for self-reflection. The studies also revealed that PIA have limited understanding of how they became infected, vertical transmission and potential benefits of PMTCT to their future reproductive needs, despite disclosure. Most participants were experiencing complicated grieving which was impacting negatively on their mental health, ability to accept their HIV status and adhere to treatment. The drawings and written accounts of the qualitative study accentuated contextual deprivation, including high exposure to multiple and consistent losses of significant attachment figures. They also pointed to emotional deprivation and impoverishment, including unresolved complicated grieving. Views from participants emphasized missed opportunities, including failure to address the mental health concerns of this population at risk. The case study suggested that without court intervention, most of the participants, being orphans without guardians, could not have participated in the research because the statutory consent was otherwise impossible. This case study argues for exceptions to the parental consent requirement, by reason of the exclusion of Orphaned and Vulnerable Children and Youth (OVCY) from research. Inconsistent and confusing legal policy that inadvertently silences voices that most need to be heard, as well as law that is inconsistent with principles of justice, inclusiveness and autonomy, are put forward to argue for a change to the National Health Act. Conclusion: HIV positive adolescents accessing care demonstrate high levels of mental health problems that are largely unrecognized and could potentially be addressed within health systems. Recognition of mental health challenges in PIA is crucial to effective HIV care and treatment and providers need to be sufficiently sensitized to this reality. PIA need improved communication regarding vertical transmission and PMTCT to properly understand their HIV status and engage effectively in management. Honest communication about how relatives died and disclosure of HIV status is necessary to reduced stigma, complicated grieving and improve mental health. The impact of unprocessed loss early in life has long-term negative consequences for PIA. Innovative methods are required to address unmet mental health needs of this patient population. The use of non-verbal methods (drawing and writing) by healthcare professionals could be especially valuable to both patient and provider, particularly in the case of managing bereavement. PIA, who face high levels of hardship and change, nevertheless exhibit strong resiliency beliefs, traits, and behaviours. Healthcare environments have the potential to be utilized as powerful resources in fostering resilience in PIA, if characteristics of adolescent resilience are integrated into prevention and intervention programming. Finally, a balance is required between protecting adolescents from exploitation and permitting access to benefits of research. Mandating parental consent for all research does not necessarily give effect to policy. For the vast majority of South African HIV infected adolescents parental consent is not possible. Adolescents are understudied and poorly understood and although these laws are there to protect this vulnerable group, it also makes them and their problems less visible. In order to scale up interventions, careful consideration needs to be placed on how the laws can help researchers benefit adolescents. Section 71 of the National Health Act ought to be amended to facilitate valuable and necessary research concerning HIV infected orphan children and adolescents. Keywords: perinatal HIV infection, HIV positive adolescents, vulnerable youth, mental health, healthcare system, disclosure, violence, orphan, bereavement, complicated grief, drawing, resilience, research, National Health ActLG201