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 selfdisclosing 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. / M (Social Work), North-West University, Potchefstroom Campus, 2015

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 selfdisclosing 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. / M (Social Work), North-West University, Potchefstroom Campus, 2015

Magister Public Health - MPH / Despite the effectiveness and scale-up of antiretroviral treatment (ART), HIV-Associated neurocognitive disorders (HAND) still persist. Currently no gold standard tool exists to detect all forms of HAND, including major and minor cognitive impairments. In light of this, a newly developed screening tool was conceptualised, namely the Quick Paediatric Neurocognitive Screening tool (QPNST). The QPNST has been developed to detect HAND in perinatally HIV-infected children aged 5-10 years.

Transitioned perinatally HIV-infected patients may be at increased risk for poor outcomes, yet the impact of transition and of transition programs on health are not well understood. This research examined: (1) post-transition mortality, (2) engagement in adult HIV care, (3) transition experiences, and clinical and sociodemographic influences, including transition program exposure. Data were collected from patients who had transitioned from a Florida pediatric clinic to adult HIV care between January 2003 and September 2012. Post-transition mortality and care engagement were assessed in a retrospective analysis of medical record data. Fisher exact and Kruskal-Wallis tests were used for significance testing. Risk ratios (RRs) were calculated to assess strength of associations. Stratified analysis controlled for confounding. Transition experiences were examined in a mixed-methods study, with qualitative data from a computer-assisted survey subjected to thematic analysis. Of 51 transitioned patients, nine (18%) had died by May 2014, five (56%) in the first post-transition year. Of 42 survivors, 33 were eligible; 27 (82%) provided consent. Post-transition mortality was high, particularly in those severely immunosuppressed (CD4 count <100/mm3; RR =6.0, 95% CI =1.88-19.19 [P=.005]) at transition. When controlled for CD4 count, employment was associated with decreased (adjusted RR= 0.19; 95% CI=0.04-0.88 [P=.02]), and high school non-completion with increased (adjusted RR= 3.0; 95% CI=1.37-6.40 [P=.07]) mortality risk. The number of kept HIV appointments decreased from last pre-transition (Median = 5, IQR 4-6) to first post-transition (Median = 2, IQR 1-10; P=.002) year; the proportion of poorly engaged increased from 3% to 35% (P=.006), with no significant changes between first and second post-transition years. Non-Hispanic black and low-income participants were less likely to be regularly engaged in adult HIV care one year post-transition. Transition program exposure did not significantly affect mortality or care engagement. Most of 27 received transition services, but 59% had trouble doing well in adult care. Needs for patient-centered care, with caring, personal patient-provider relationships and accessible HIV care, characterized post-transition experiences. This research suggested that transitioned perinatally HIV-infected young adults are at risk for poor health outcomes. Systematic programs using a socio-ecological framework to include multi-level interventions and post-transition support may improve outcomes.

The effectiveness of antiretroviral therapy (ART) transformed the pediatric HIV epidemic. The disease changed significantly over the course of three decades: while early in the epidemic it was almost always fatal, it has become a chronic condition. This study examined how perinatally-infected youth experience the impact of HIV in their lives. A qualitative study using interpretative phenomenological analysis (IPA) was conducted. Twenty in-depth interviews were carried out among 12 women and 8 men aged 18 to 30 years in Puerto Rico. These were conducted in Spanish, audio-recorded, transcribed and translated into English. While narrating their experiences, participants were interpreting what the situation meant to them and how they make sense of it. Three topics emerged: (1) perception and response to treatment and illness, particularly their lived experiences with ART; (2) disclosure experiences; and (3) family matters. Most participants challenged their therapy, in most cases to force their caregivers to disclose their status. Problems with adherence were attributed to busy schedules or forgetfulness. Participants experienced the disfiguring adverse effects of ART, which they endured for years without being informed that ART was the cause of these. Participants’ experiences with disclosure demonstrated the importance of validating them as individuals capable of managing their health. The paternalistic approach of withholding their diagnosis to spare them suffering resulted in increased anxiety. Participants acknowledged the difficulties of revealing their HIV status to their partners. They referred to family and friends as essential in coping with HIV. However, some encountered discrimination and stigma within their families. Participants who had suffered the loss of their parents found other parental figures such as adoptive parents or other family members. Most participants expressed a desire to have children. Perinatally HIV-infected youth will require health services for the rest of their lives. The adult health care into which they transition should consider their needs and journey. Services should consider including family members. This study underscores the need for improved access to mental health services. It is also essential to transcend medical treatment and develop a broader perspective of health care. Health care services should include reproductive decision-making counselling services.

Due to the successful rollout of the Antiretroviral Therapy Program, an increasing number of perinatally HIV infected adolescents are emerging into young adulthood throughout Botswana. Young adulthood is a critical period of human development, with long-lasting implications for a person’s economic security, health and well-being. During this time, young women and men normally complete school, find employment and start working, develop relationships, form families, bear children and pursue those things that help set them on the path to healthy and productive adult life. However, the presence of a chronic illness such as HIV can interfere with the achievement of the developmental milestones of young adulthood and affect their Health Related Quality of Life (HRQOL). The purpose of this study was to identify the factors that affected the HRQOL of young adults living with perinatally acquired HIV (YALPH) and to propose policy guidelines to promote their HRQOL. A mixed-methods sequential explanatory research design was used. HRQOL assessments were made using the WHOQOL-HIV BREF instrument. Data about the clinical characteristics of the respondents was obtained from medical records. In-depth interviews were conducted with a purposefully selected subsample of respondents who completed the WHOQOL-HIV BREF instrument. All the respondents were recruited from Botswana-Baylor Children’s Clinical Centre of Excellence, in Gaborone, Botswana. Data were analyzed using SPSS Inc. software version 16.0 (statistical package for social science, SPSS Inc, Chicago, IL, USA). The study population consisted of 509 YALPH including 255 (50.1%) females and 254 (49.9%) males. The mean age of the population was 21.7 (± 2.6) years (range 18-29.8 years). The majority of the respondents were single (98.1%), living in their parental homes (90.8%), neither in school nor working (47.35%) and 14% were parents (range 1-3 children). The mean duration on ART was 12.4 years (± 4.0). Based on the BMI classifications by WHO, 38.5% of respondents were underweight (BMI < 18.5 kg/m2) and 7.3% were overweight (BMI ≥ 25.0 kg/m2). Unsuppressed viral load (>400 cell/mL) occurred in 13.4% of the sample. Most respondents had good HROQL (78.4%). The highest mean HRQOL score was recorded in the Physical domain (15.4 (± 2.9) and the lowest in the Environment domain 13.8 (± 2.7). The results fitted using the multivariable logistic regression suggest the odds for good general QOL were increased amongst individuals with a higher level of education and 6 those who were employed. The odds for good general QOL were reduced for individuals with unsuppressed viral load (> 400 cells/mm2) and those who had illnesses (self-reported). The odds for good general QOL increased by almost two folds (OR = 1.97, 95% CI = (1.11 – 3.48)) when comparing respondents with higher level of education against those with lower education. The odds for good general QOL were increased for employed respondents OR = 1.73 (95% CI = (0.92 – 3.23) when compared to the unemployed group. Whereas the odds for good general QOL declined by almost two folds (OR = 0.60, 95% CI = (0.33 – 1.08)) amongst patients with VL > 400 cell/mm2 compared to those with VL < 400 cells/mm2. Also, respondents who were ill had lower odds ratios for good general QOL compared to those who were not ill (OR = 0.42, 95% CI = (0.25 – 0.70)). The results of in-depth interviews with 45 respondents showed that the majority of YALPH were in good physical health and they had positive perspectives about the future including health, completing school, finding employment, marriage and childbearing. The main sources of social support for YALPH were close family members and health care workers (HCWs). However, worries and concerns about disclosure, fear of stigma, lack of financial independence, and limited social relationships and networks were the most identified stressors that put the YALPH at risk of compromised HRQOL. Some sub-groups of YALPH were at higher risk for poor HRQOL including: young mothers, YALPH who were aging out of institutional care, YALPH with disabilities and impairments, YALPH who were neither in school nor working and YALPH with maladaptive coping strategies. Therefore, the promotion of the HRQOL of YALPH will require policies and interventions to increase educational attainment, provide employment and livelihood opportunities, promote good ART adherence and VL suppression, and effectively prevent and manage illnesses. Special attention should be paid to sub-groups of YALPH who are at increased risk of compromised HRQOL. / Health Studies / D. Litt. et Phil. (Health Studies)