Better Together: acceptability, feasibility and preliminary impact of chronic illness peer support groups for South African adolescents and young adults.

INTRODUCTION: Peer support can help navigate the isolation and psychological strain frequently experienced by youth living with chronic illness. Yet, data are lacking on the impact of providing support for youth living with mixed chronic conditions. We assessed the acceptability, feasibility and preliminary mental health impacts of a clinic-based peer support group for South African youth living with chronic illnesses, including HIV. METHODS: This mixed-methods pilot study (September 2021-June 2022) enrolled 58 young patients, ages 13-24, at an urban hospital in Cape Town, South Africa. In-depth interviews elicited the perspectives of 20 young people in relation to their participation in the Better Together programme, a recurring clinic-based peer support group for patients with mixed chronic illnesses. Self-reported resilience, attitudes towards illness, stigma and mental health were captured via established measures. T-tests and multivariate analysis of variance compared psychosocial outcomes for 20 group participants and 38 control patients, controlling for socio-demographic characteristics at enrolment. Logistic regression analyses estimated the predicted probability of a positive depression or anxiety screening given peer group participation. RESULTS: All interviewees valued being able to compare treatment regimens and disease management habits with peers living with different conditions. Adolescents living with HIV stated that understanding the hardships faced by those with other conditions helped them accept their own illness and lessened feelings of isolation. Compared to patients who did not participate in Better Together, those who attended ≥5 groups had statistically significantly higher individual-level resilience, a more positive attitude towards their illness(es), lower internalised stigma and a more positive self-concept. The probability of being screened positive for depression was 23.4 percentage points lower (95% CI: 1.5, 45.3) for Better Together participants compared to controls; the probability of a positive anxiety screening was 45.8 percentage points lower (95% CI: 18.1, 73.6). CONCLUSIONS: Recurring, clinic-based peer support groups that integrate youth living with HIV and other chronic diseases are novel. Group sustainability will depend on the commitment of experienced peer leaders and providers, routine scheduling and transportation support. A fully powered randomised trial is needed to test the optimal implementation and causal mental health effects of the Better Together model.

MASI, a Smartphone App to Improve Treatment Adherence Among South African Adolescents and Young Adults With HIV: Protocol for a Pilot Randomized Controlled Trial.

BACKGROUND: Adolescents and young adults with HIV repeatedly demonstrate low rates of antiretroviral therapy (ART) adherence as well as low rates of viral suppression. Digital health interventions are a promising way to engage adolescents and young adults with HIV to support ART adherence. However, few digital health interventions have been developed and tested with adolescents and young adults in countries like South Africa, where the HIV burden among adolescents and young adults is greatest. Masakhane Siphucule Impilo Yethu (MASI; Xhosa for "Let's empower each other and improve our health") is a comprehensive ART adherence-supporting app for South African adolescents and young adults with HIV. It was culturally adapted using the HealthMpowerment platform. OBJECTIVE: The aim of this paper is to describe the protocol for a pilot randomized controlled trial examining the feasibility, acceptability, and preliminary efficacy of MASI on self-reported ART adherence and social support. METHODS: We will enroll 50 adolescents and young adults with HIV ages 15-21 years. Participants will be recruited from public ART clinics linked to a large government-funded teaching hospital in Cape Town, South Africa. Participants will be randomized 1:1 into either the intervention arm receiving a full version of MASI or the control arm receiving an information-only version of the app (n=25 per arm). Participants will be asked to engage with MASI daily for 6 months. All participants will complete baseline and follow-up assessments at 3 and 6 months. RESULTS: Study screening began in May 2022 and the first participant was enrolled on June 21, 2022. As of June 12, 2023, 81 participants have completed screeners, and 36 eligible participants have been enrolled in the pilot randomized controlled trial. Recruitment is anticipated to last through August 31, 2023, with study activities anticipated through February 29, 2024. CONCLUSIONS: There is an urgent need for innovative interventions to improve ART adherence among adolescents and young adults in settings like South Africa. If found to be feasible and acceptable, MASI could be implemented with adolescents and young adults with HIV in other parts of the country. TRIAL REGISTRATION: ClinicalTrials.gov NCT04661878; https://clinicaltrials.gov/ct2/show/study/NCT04661878. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/47137.

Supporting Adolescents With HIV in South Africa Through an Adherence-Supporting App: Mixed Methods Beta-Testing Study.

BACKGROUND: Novel smartphone app-delivered interventions have the potential to improve HIV treatment adherence among adolescents with HIV, although such interventions are limited. Our team has developed Masakhane Siphucule Impilo Yethu (MASI; Xhosa for "Let's empower each other and improve our health"), a smartphone app-delivered intervention to improve treatment adherence among adolescents with HIV in South Africa. MASI was adapted to the South African cultural context using the HealthMpowerment platform, an evidence-based digital health intervention developed for and with youth in the United States. OBJECTIVE: We conducted this beta-testing study to (1) explore the initial usability of MASI, (2) examine engagement and experiences using MASI features, and (3) inform refinements to the app and intervention implementation plan prior to a subsequent pilot randomized controlled trial (RCT). METHODS: This study was conducted from August 2021 to December 2021 in Cape Town, South Africa. Beta-testing participants received access to MASI for 3 weeks. A mixed methods approach was used, with brief questionnaires and semistructured in-depth interviews conducted prior to app installation and after 1 week to 2 weeks of app testing. Engagement with MASI was measured through analysis of back-end app paradata, and follow-up in-depth interview guides were tailored to each participant based on their app use. RESULTS: Participants in the beta-testing study (6 male participants, 6 female participants; ages 16-19 years) collectively spent 4.3 hours in MASI, averaging 21.4 minutes per participant over the 3-week period (range 1-51.8 minutes). Participants logged into MASI an average of 24.1 (range 10-75) times during the study period. The mean System Usability Scale score was 69.5 (SD 18), which is considered slightly above average for digital health apps. Thematic analysis of qualitative results revealed generally positive experiences across MASI features, although opportunities to refine the app and intervention delivery were identified. CONCLUSIONS: Initial usability of MASI was high, and participants described having a generally positive experience across MASI features. Systematically analyzing paradata and using the interview findings to explore participant experiences allowed us to gain richer insights into patterns of participant engagement, enabling our team to further enhance MASI. The results from this study led to a few technological refinements to improve the user experience. Enhancements were also made to the intervention implementation plan in preparation for a pilot RCT. Lessons learned from the conduct of this beta-testing study may inform the development, implementation, and evaluation of similar app-delivered interventions in the future.

"We Should Be Taught Self-Respect, Self-Confidence and Self-Love": Youth Perspectives of Adult Influences on Their Sexuality and Relationships Among South African Adolescents Living With HIV.

Introduction: Of the 1.75 million adolescents aged 10-19 years living with HIV globally, 84% reside in sub-Saharan Africa. This problem is most acute in South Africa, where there are 720,000 adolescents living with HIV (ALHIV). ALHIV navigate the same challenges as other adolescents-such as puberty and first relationships-as well as challenges specific to their HIV-status-including stigma, disclosure, and concerns about HIV transmission. This dual burden calls for tailored sexual and reproductive health (SRH) programs. Here, we qualitatively explore the reflections of South African ALHIV on SRH education, communication, and discussion provided by adults in schools, clinics, and the home related to their unique SRH needs. Methods: This paper reports on qualitative data from a mixed-methods study to inform interventions that meet the SRH needs of ALHIV. In-depth interviews (N = 20) were conducted with ALHIV recruited from two clinics in Cape Town, South Africa. Nine males and 11 females aged 16-19 participated in semi-structured in-depth interviews to discuss their sexual health as ALHIV. The interview guide explored 1) perceived SRH needs; 2) healthy living with HIV; 3) future goals; 4) intimate relationships; 5) psychosocial challenges; and 6) preferred interventions. Data were thematically applied to an iteratively-developed codebook and analyzed by the cross-cultural research team using NVivo 12. Results: These qualitative data reveal the pressing needs among ALHIV for open communication and accurate information about sexuality and HIV, given the risk to themselves and their partners as they enter intimate relationships. Three themes emerged from the data: 1) Intergenerational pressures coming from caregivers, clinicians, and teachers often stigmatize the sexual heath behaviors of ALHIV; 2) When present, open intergenerational communication can provide ALHIV with crucial information, resources, and social support that supports healthy decisions, and 3) ALHIV offer specific ideas about how adults can support their decision-making in the transition to adulthood. Conclusions: Findings highlight adolescents' recommendations for programs involving open communication, stigma-reduction around sexuality, and support from both peer and adult mentors. This study lays the foundation for strategies to improve intergenerational communication about sexual health to promote positive approaches to sexuality for ALHIV.

Conditional Economic Incentives for HIV Treatment Adherence: Aligning Adolescent Developmental Hallmarks with Behavioral Economic Theory to Improve HIV Treatment Adherence.

Adolescent-tailored antiretroviral therapy (ART) adherence interventions take place within the context of unique developmental stage. Suboptimal ART adherence among adolescents living with HIV in South Africa underscores that interventions are urgently needed to improve adherence. We conducted semistructured in-depth interviews with 35 adolescents aged 10-19 years living with HIV. In addition, 14 clinicians and 35 caregivers were interviewed to provide a diverse perspective on barriers and facilitators of medication adherence for adolescents living with HIV (ALWH). Thematic coding was utilized for this analysis. Our main findings were organized by following a priori themes: (1) acceptability of conditional economic incentives (CEIs) as an adherence intervention strategy for adolescents, (2) predicted behavioral impacts, and the (3) durability of CEIs to ensure medication adherence for adolescents in the long term. Subthemes that emerged included CEIs as tool to overcome competing demands, increasing intrinsic motivation and orientation toward the future, and optimal timing of the intervention. Exposure to a CEI intervention during early adolescence (ages 10-13) may be a particularly helpful intervention as CEIs may have long-lasting effects given that habit-formation behavior is developed during early adolescence. There is little consensus on effect duration from the perspective of adolescents, clinicians, and caregivers. Future studies should continue to explore the impact of CEIs for long-term ART adherence.

Youth perinatal HIV-associated neurocognitive disorders: association with functional impairment.

HIV-associated functional impairment may cause cognitive impairment secondary to the viral infection, hence, associations between cognitive impairment and functional impairment in youth living with HIV are important to assess. We sought to determine whether cognitive impairment is associated with functional impairment and if it carries higher risk for also having functional impairment. We collected parent-rated information regarding youth functional impairment on four different measures and administered a cognitive battery to youth to determine cognitive impairment, 203 HIV-infected youth and 44 HIV-uninfected controls. Degree of cognitive impairment correlated strongly with decreased function: CBCL, r = -.17, p = .01; VABS2, r = -.28, p < .001; repeated-grades, r = .26, p < .001. Presence of cognitive impairment was associated with increased risk of functional impairment: 3.47 (CIS); 1.71 (CBCL); 2.17 (VABS2); 2.97 (repeated-grades). Repeated-grades strongly associated with cognitive impairment and functional impairment. We found strong associations between HIV-infected youth functional impairment on CBCL, VABS2 and repeated-grades with degree of cognitive impairment; and that when cognitive impairment was present youth had higher risk of experiencing functional impairment as well. Asking whether youth have repeated a grade at school could be a helpful screening question for assessing potential functional impairment and provide clinicians with an indication as to whether a further in-depth assessment is required.

Global Systematic Review of Common Mental Health Disorders in Adults Living with HIV.

PURPOSE OF THE REVIEW: By reviewing the most recent common mental health disorders (CMHD) studies in people living with HIV (PLWH) (2018-2020), this review discusses the prevalence of CMHD, factors associated with CMHD in PLWH, mental health in PLWH from vulnerable groups, the impact of CMHD on HIV disease progression and adherence to antiretroviral therapy and the efficacy of different treatment approaches. RECENT FINDINGS: After screening for eligibility 142 studies were included in the final systematic review. Only 27% of studies were conducted in Sub-Saharan Africa, which carries the highest burn of HIV disease globally. Despite the well-established increased risk of CMHD in PLWH, the current prevalence remains high, with studies reporting 28%-62% of PLWH having mental health symptoms. CONCLUSION: Despite the significant challenges that CMHDs present to successful HIV treatment, there are many mental health treatments and interventions which can improve outcomes in PLWH and opportunities to task-shift and integrate mental health care with HIV care.

"Those People Motivate and Inspire Me to Take My Treatment." Peer Support for Adolescents Living With HIV in Cape Town, South Africa.

Adherence to antiretroviral therapy (ART) and psychosocial support to manage stigma and disclosure is essential for adolescents living with HIV (ALHIV). Peer support groups can help ALHIV and their families live successfully with HIV. This qualitative study aimed to examine adolescent and caregiver perspectives on peer support groups. Three themes emerged: (1) peer support encouraged adherence to ART, (2) serostatus disclosure outside the family was perceived as difficult, and (3) the peer support group fostered fundamental and meaningful peer relationships for ALHIV. Caregivers felt peer support groups increased self-acceptance and adherence for ALHIV across 3 domains: (1) as motivation for families and adolescents, (2) to increase adolescent independence and maturity, and (3) to help adolescents accept their HIV status and live successfully with HIV. These data highlight the importance of psychosocial support groups for ALHIV and caregivers, illustrating the benefits of a safe space with trusted relationships and open communication.

iSAY (incentives for South African youth): Stated preferences of young people living with HIV.

High adherence to antiretroviral therapy (ART) is essential for achieving viral suppression and preventing HIV transmission. Yet adherence is suboptimal among adolescents who face unique adherence challenges. Little is known about the role of conditional economic incentives (CEIs) for increasing ART adherence in this population. During 2017-2019, we conducted a mixed-methods discrete choice experiment in Cape Town, South Africa to inform the optimal design of a CEI intervention for ART adherence among youth. In-depth interviews were conducted with n = 35 adolescents (10-19 years old) living with HIV and prescribed ART, to identify attributes of a youth-centered CEI intervention for ART adherence. A discrete choice experiment was subsequently conducted with N = 168 adolescents to elicit preferences for intervention components. A rank-ordered mixed logit model was used for main results; marginal willingness-to-accept (mWTA) was then estimated. Five attributes emerged from the qualitative research as important for a CEI-based intervention for youth ART adherence: (1) incentive amount, (2) incentive format, (3) incentive recipient, (4) delivery mode, and (5) program participants. Youth had a high probability of acceptance of any incentives program (88-100%), yet they did not have a strong preference of a quarterly over a monthly program. From a maximum incentive amount of R1920 (~US$115), youth were willing to forgo up to R126 per year (~US$9) if the incentive was given in cash (versus fashion vouchers); R274 (~US$19.6) if it was open to both previously adherent and non-adherent youth (instead of non-adherent only); and up to R91 (~US$6.5) to receive incentives at a clinic setting (instead of electronically). The use of incentives over the short term during the critical age- and developmental-transition, when adolescents begin to take sole responsibility for their medication-taking behaviors, holds great promise for habituating adherence into adulthood.

Adapting a blended motivational interviewing and problem-solving intervention to address risky substance use amongst South Africans.

The purpose of this study was to examine the acceptability and initial substance use outcomes of a blended motivational interviewing (MI) and problem-solving therapy (PST) intervention, delivered by peer counsellors. Twenty people who scored at risk for substance use according to the Alcohol, Smoking and Substance Involvement Screening Test (ASSIST) received a five session blended MI-PST intervention and were assessed at baseline and at three months. An open-ended semi-structured interview, designed to identify possible factors that may hinder or promote the acceptability of the intervention was also conducted. Fifteen participants completed the intervention and the three-month follow-up. According to ASSIST scores, participants significantly reduced their substance use (p > 0.001) at the three-month follow-up. Randomized controlled trials are needed to evaluate the effect of this intervention more rigorously.

Screening and brief interventions for substance use in emergency departments in the Western Cape province of South Africa: views of health care professionals.

As part of the formative phase of screening and brief interventions (SBIs) for substance use amongst patients presenting for emergency services in South Africa, the present study explored health care providers' attitudes and perceptions towards SBI. Twenty-four health care providers working in two 24-hour emergency departments (EDs) were interviewed using an open-ended semi-structured interview schedule designed to identify factors that may hinder or promote the implementation of SBI for substance use in these settings. All respondents felt that screening patients for substance use in EDs is possible; however, they emphasised the need for an additional staff member dedicated to these activities. Secondly, they felt this dedicated individual should meet certain educational criteria and be from a specific socio-demographic background in order to increase the likelihood of intervention uptake. Thirdly, a number of patient- and clinic-level barriers were revealed that could potentially hinder the successful implementation of SBIs in EDs.

Feasibility and Acceptability of Screening and Brief Interventions to Address Alcohol and Other Drug Use among Patients Presenting for Emergency Services in Cape Town, South Africa.

Despite evidence from high income countries, it is not known whether screening and brief interventions (SBI) for alcohol and other drug (AOD) use are feasible to implement in low and middle income countries. This paper describes the feasibility and acceptability of a peer-led SBI for AOD-using patients presenting with injuries at emergency services in Cape Town, South Africa. Data were extracted from program records on the number of eligible patients screened and the number of program refusals. A questionnaire examined preliminary responses to the intervention for 30 patients who had completed the program and 10 emergency personnel. Peer counselors were also interviewed to identify barriers to implementation. Of the 1458 patients screened, 21% (305) met inclusion criteria, of which 74% (225) were enrolled in the intervention. Of the 30 patients interviewed, most (83%) found the program useful. Emergency personnel were supportive of the program but felt that visibility and reach could improve. Peer counselors identified the need for better integration of the program into emergency services and for additional training and support. In conclusion, with limited additional resources, peer-led SBIs for AOD use are feasible to conduct in South African emergency services and are acceptable to patients and emergency personnel.