Increasing Access to Services
- Adolescents can achieve viral suppression and remain adherent, with low loss to follow up
- Treatment support sessions can increase adherence among adolescents.
- Providing clinic services that are youth-friendly, conveniently located, affordable, confidential and non-judgmental, can increase use of clinic reproductive health services, including HIV testing and counseling and treatment services
- Youth-friendly condom distribution can help young people feel more comfortable accessing condoms.
- Targeted education efforts can increase adolescent uptake of HIV testing and counseling and related services.
- Young women living with HIV can safely deliver HIV-negative infants with appropriate treatment.
- Integrating HIV testing and counseling into existing reproductive health services for young people may lead to increased uptake of HIV testing and counseling for youth ages 15 to 24.
1. Adolescents can achieve viral suppression and remain adherent, with low loss to follow up
A review of perinatally infected adolescents receiving care at 18 pediatric clinics in Cambodia, India, Indonesia, Malaysia, Thailand and Vietnam found that of 1,254 adolescents, of whom 95% had ever received ART, 1,061 were in active follow up. Among the adolescents who remained in follow up, the most recent median CD4 cell count was 657 and 718 of 830 adolescents tested had HIV RNA under 400 copies/ML, i.e. they were virally suppressed. Of the 1,254 adolescents, 47% were male, 1,060 were under the age of 12 at entry and the median time in follow up during their adolescence was 2.4 years. Besides the 1,061 in active follow up, 2.6% had died; 4.2% were lost to follow up; and 8.6% were transferred to other clinics. The adolescents were treated at public or university-based pediatric HIV referral clinics with highly trained staff and access to treatment. Successful treatment in early childhood resulted in successful outcomes for perinatally infected children during their adolescence. Of the adolescents, 93% attended school.
A study in Jamaica found that adolescents who acquired HIV perinatally were successfully treated using HAART. There were 512 children and adolescents living with HIV who were enrolled in treatment and care programs. Of these adolescents, 88% (451) of them received HAART, 73% were less than 12 years old and 27% were greater than 13 years old. Among the 451 children on HAART, 70% received first line HAART, 29% received second line HAART, and 0.7% received salvage therapy. Among those who acquired HIV through sex rather than as a result of vertical transmission, half acquired HIV through forced intercourse. There has been increased infection detection through voluntary counseling and testing for all antenatal clinic attendees.
A global review of adherence among adolescent and young populations, ages 12 to 24, with 50 studies reporting data from 53 countries and 10,725 patients, between 1999 and 2003 found that youth in Africa and Asia had a higher adherence rate of 84% than South America, with an adherence rate of 63%. The lowest average ART adherence was in North America with 53%. Studies after 2005 showed a higher adherence rate of 74% compared to 59% pre-2005. Of the 50 studies, 36 studies measured adherence by viral suppression, 13 by self-report and the rest by pharmacy refills. Studies did not include those who may have been eligible for ART but did not access treatment, became lost to follow up, or were not eligible for ART based on national guidelines. In addition, studies among high-risk key populations are lacking.
2. Treatment support sessions can increase adherence among adolescents.
A study conducted in South Africa showed high levels of feasibility and acceptability of the VUKA intervention, a 6-session family-based intervention that was conducted with 65 adolescents over the course of three months to promote mental health among adolescents living with HIV. Adolescents who participated in VUKA experienced both a significant increase in HIV knowledge scores and a significant increase in ART adherence as measured by the last time they missed taking their medication, in addition to a significant decrease in perception of stigma surrounding adolescent HIV. Caregivers had positive responses to the intervention, and reported that VUKA helped them to discuss sensitive topics with their children, improved mental health, strengthened social support of both themselves and their children, and created a positive sense of identity among the adolescents living with HIV. The adolescents who participated in the study were between the ages of 10 and 13 years old, the majority was female. Of the 65 families that participated in the study, 95% of the caregivers who were responsible for the adolescents were female. VUKA was carried out with the goal of addressing psychosocial challenges related to HIV through a cartoon storyline, and was facilitated by trained lay people. The storyline follows a 12-year old orphan boy living with HIV, and seeks to address issues such as stigma, family loss, peer relationships, and identity. Additionally, the program provides detailed instructions for counselors to facilitate discussions about the cartoon in both group and individual family sessions that address disclosure of HIV status, coping with HIV, adherence to antiretroviral therapy, stigma, caregiver-child communication, puberty, decision-making, and social support. Of the 33 families who were randomly selected to participate in the VUKA program, 32 families attended at least one session. Additionally, 94% of the families attended 5 out of the 6 sessions and 55% attended all six sessions, demonstrating the high attendance rate and strong feasibility of implementing the program.
A cross-sectional study consisting of 262 adolescents aged 10 to 19 years old living with HIV in Zimbabwe found that direct parent involvement in clinic visits was associated with improved adherence to antiretroviral therapy among the adolescents. Adherence was categorized as optimal if it was reported as “excellent,” and all other descriptions of adherence, including very good, good, poor, and very poor were categorized as suboptimal. A majority of the adolescents who participated in the study were males, and a majority of the adolescents reported feeling satisfied with their healthcare, comfortable communicating with their medical provider, and confident in their abilities to take medication, although these factors were more commonly reported in adolescents who had optimal adherence to their antiretroviral medications. Overall, 39% of the adolescents participating in the study reported suboptimal adherence to antiretroviral therapy. Adolescents whose parents or guardians stayed in the room during clinic visits, however, were 2.1 times more likely to have excellent adherence to their antiretroviral therapy regimens than adolescents who were not accompanied by a parent or guardian. Additionally, although neither group sessions run by peers nor counseling sessions run by individuals were associated with a significant change in adherence, adolescents who attended group sessions led by trained professionals were 1.8 times more likely to have excellent adherence.
A quasi-experimental study with 16 patients (10 female, 2 bisexual, one MSM) in Thailandaged 18 to 24 with a history of drug adherence of less than 95% significantly improved drug adherence from a baseline of 88.5% to 100% by the end of a 17 week program to increase adherence using a modified cognitive behavioral therapy model. Median plasma HIV-RNA significantly decreased from 171,369 to 2,439 copes/ml. CD4 count increased from 328 to 366. The program included sessions on communication with providers, coping with side effects, obtaining and storing medications, and problem solving.
A study in Zimbabwe of 229 young people, median age 14 (ranging from age 6 to 18 years), 59% female, found that support group attendance was helpful to increase adherence for adolescents living with HIV. Of the 229 members of support groups, 80 were between the ages of 13 to 15 and 63 were over age 15. For those under age 14, 76% reported taking over 95% of their ART; for those over age 16, this declined to 55%. However, 91% reported that being a member of a support group was helpful. Adult caregivers reported that they felt ill equipped to support adolescents with adherence. Adherence by adolescents was self-reported. Adolescents attend a monthly community adolescent support group led by a nurse with individualized support from a community adolescent treatment supporter (CATS); a caregiver intervention and a group intervention to support adherence. CATS are older adolescents with HIV who are trained to support other adolescents living with HIV. CATS have been trained and mentored since 2009 to provide community based adherence monitoring and counseling for their peers living with HIV. A team of 20 adolescents living with HIV provided daily support for their peers living with HIV. In addition, the adolescents who participate as CATS have developed counseling skills, with five of the original team furthering their education in nursing and social work. Training programmes are also held for caregivers, health workers, teachers, churches, community members and other organizations. This work was planned and delivered by adolescents who were themselves living with HIV. Ten researchers, six female and all aged 16 to 18, collected the data. Of those enrolled in the support groups, 19% reported that they were unable to afford to eat at least two meals a day and 48% reported they would be unable to pay hospital fees if someone in their household became ill and two-thirds reported they had been absent from school due to lack of school fees. Adolescents felt stigmatized by their households and communities, having to work more than others or asked to eat or sleep separately. Some also found support through their teachers in schools. Of those who knew their HIV status, 65% had never told anyone else of their positive serostatus, including siblings. Adolescent girls rarely disclosed to boys they dated. Lack of bus fare was a key reason to not collect their ART and adhere.
A qualitative study with 32 adolescents living with HIV and 23 of their adult caregivers in Zambia found that clinic-sponsored groups for adolescents living with HIV assisted with adherence for those on ART.
3. Providing clinic services that are youth-friendly, conveniently located, affordable, confidential and non-judgmental, can increase use of clinic reproductive health services, including HIV testing and counseling and treatment services
A comparison of pre and post-ART attrition among 53,244 youth who had been tested and confirmed as HIV-positive, ages 15 to 24, found that youth attending clinics which provided sexual and reproductive health services, including condoms, as well as offering adolescent support groups, had higher rates of retention in HIV care following ART initiation than those youth who did not. The data was collected from 160 HIV clinics in Kenya, Mozambique, Tanzania and Rwanda. Of the 53,244 youth enrolled in HIV care, 14,844 initiated ART.
A retrospective cohort study between 2004 and 2010 of 1,776 adolescents in Zimbabwe served by a partnership of Medecins sans Frontieres and the government public health sector services provided adolescent friendly services, which resulted in a similar mortality rate as the 9,360 adults despite HIV diagnosis in 97% of adolescents after presentation with clinical disease. The rate of loss to follow up was twice as high in adults when compared to adolescents. The median age of ART initiation was 13.3 years. Among those who were followed for 5 years of more, 5.8% of adolescents switched to a second line regimen as a result of treatment failure compared to 2.1% of adults. In 2007, following group discussions with adolescents to identify their needs and workshops to address stigmatizing behaviors among staff, adolescents were engaged in service planning decisions through nominated peer representatives. Adolescent specific activities included peer and non-peer counseling and a youth club. Activities for adolescents focused not only on medical issues, such as promoting adherence, but on social issues, such as bullying, stigma, disclosure and condom use. Activities for ages 10 to 15 focused on strengthening independence, with group activities on weekends. Those over age 15 were involved in meetings to determine to whom care should be delivered and were provided with training to be peer counselors. Adolescent defaulters were actively traced. The increase in numbers started on ART was highest for adolescents. The vast majority (97%) of the adolescents had been vertically infected and 94% had no history of previous ART use. Only 2.6% of the adolescents came to the clinic through VCT. Treatment outcomes were derived from a total of 22,127 person-years of follow up, of which 3,478 person-years were contributed by adolescents. By 2010, 23% of all actively followed patients were adolescents, a higher proportion than seen in other facilities in Zimbabwe.
A survey of 445 young women with access to a youth-friendly clinic in Mozambique demonstrated high levels of knowledge to avoid risk of HIV acquisition and low rates of HIV compared to HIV prevalence in the same city. In 1999, Adolescent and Youth Friendly Services (SAAJ) was created in the capital city, Maputo. The service was part of a multidisciplinary project that provides young people with sexual and reproductive health services with a no cost clinic. In October 2001, the clinic offered HIV testing and counseling. From 1999 to 2003, approximately 23,000 adolescents attended the clinic. In 2002, a sample of 435 young women completed a questionnaire and lab exams. The level of HIV knowledge was high, with correct answers about the effectiveness of condoms at 96% and 74% knowing that healthy looking people can transmit HIV. Of the young women, 44.4% had sexual intercourse with occasional partners. Of the young women, only 4% tested positive for HIV, while the general seroprevalence for Maputo City was 17.3%.
A review of HIV prevention interventions among youth from 80 developing countries found evidence that youth-friendly services increase young people’s use of health services.
A survey conducted between 2000 and 2002 in Madagascar evaluating the development and promotion of a network of youth-friendly, private sector clinics offering HIV testing, STI treatment, and other reproductive health services, found that the number of youth seeking services at these clinics rose dramatically, from 527 to 2,202 youth (predominately female), over two years. In addition to offering confidential, convenient, and affordable services by nonjudgmental providers to attract youth to the clinics, mass media and face-to-face communication campaigns using peer educators, television and radio spots, television talk shows, films, and mobile condom use demonstration teams were also effective in increasing use of the clinics.
A qualitative study with providers in western Kenya found that providers reported that with forms that prompt providers to ask adolescents living with HIV to discuss contraception there was increased discussion of sensitive issues around sex and contraception.
Interviews with 26 program managers or service providers and 8 peer educators ages 18 – 15 from Botswana, Uganda, Tanzania, Mozambique, Malawi, Zimbabwe, Kenya, Rwanda, South Africa and Swaziland found that for adolescents living with HIV, creating clinical environments that were adolescent friendly were important, along with involving adolescents in the design of programs. Adolescents living with HIV want to be mentored by adults living with HIV.
4. Youth-friendly condom distribution can help young people feel more comfortable accessing condoms.
A study in Mexico evaluating a program that made condoms available in schools found that 570 high school students used the program at least once during the three months in which the program operated in each school. More than 27% (158) used the program three of more times. On average, students used the program 2.09 times. Most stated that obtaining printed educational materials was one of the reasons to visit the program; however, sexually initiated students were more likely to report that obtaining condoms was one of the reasons to visit the program. The majority was satisfied with the program but 27.6% felt that more educational materials should be provided. In addition, significantly more males than females accessed the program. Nearly 33% of female users were planning to have unprotected sex compared to 12% of their male counterparts.
Two social marketing interventions conducted between 2000 and 2002 in Cameroon and Rwanda promoted the use of community-based, youth-friendly condom sellers, which contributed to a decrease in reported ‘shyness’ by both sexes in purchasing condoms. In Cameroon, youth-friendly condom sellers were trained and identified as youth-friendly condom ‘outlets’ and sold more than 40,000 condoms to youth in 2002. In Rwanda, peer educators collaborated with the community-based condom sales agents to identify and promote youth-friendly condom sellers in the rural areas, resulting in a significant increase in youth reporting “knowledge of a nearby condom source,” and a decrease in reported shyness to buy condoms, from 79% to 56%, among females.
5. Targeted education efforts can increase adolescent uptake of HIV testing and counseling and related services. Targeted education efforts can increase adolescent uptake of HIV testing and counseling and related services
A study that analyzed cross-sectional data from two rounds of population–based, post-intervention surveys of 1,010 currently married young women ages 12 to 24 years in Ethiopia from 2008 to 2012 found that girls participating in an intervention program targeting married girls were 8 times more likely to receive voluntary counseling and testing than those that did not participate. In addition, married girls who participated in the program and whose husbands participated in a complementary intervention program for men were 18 times more likely to access voluntary counseling and testing than those that did not participate. Of the girls in the study, 70.3% had no education, 57% had married before age 15, and 47.6% had a husband older than them by 4 to 9 years. Of the currently married girls, 1.5% of them were between 12 and 14 years of age, 23.6% of them were between 15 and 19 years of age, and 74.9% of them were between 20 and 24 years of age. The intervention program for married girls was composed of a 32-hour curriculum, which was broken down into meetings that occurred 3 times per week. The group focused on enhancing communication skills and self-esteem, encouraging voluntary counseling and testing, and educating the girls regarding sexually transmitted infections and HIV/AIDs, reproductive health, managing menstruation, antiretroviral therapy, safe motherhood, family planning, financial literacy and gender and power dynamics in the household. Women from rural communities were recruited and trained to lead the girls’ groups as mentors. The husbands' group was not restricted to adolescents and allowed husbands of any age to join. Mentors for the husbands’ group were also men recruited from the communities and trained. This group focused on improving partner communication to enable them to better support their wives and improve the well-being of their families as a whole. The group focused on non-violent and respectful relationships, sexually transmitted infections, HIV/AIDs, voluntary counseling and testing, antiretroviral treatment, alcohol and drugs, family planning, safe motherhood, and domestic and sexual violence. Both groups utilized interactive educational methods, such as group discussions, storytelling, illustrations and role-playing. Post-intervention follow-ups occurred in 2010 and 2012. These compared data from three different groups: households where only the women had participated in the intervention (11%), households where both partners had participated in the interventions (25.2%) and households where neither partner had participated in the interventions (61.8%). The women who did not participate in the program had a mean age of 20, making them younger than the women who had participated. In the group where neither partner participated in the intervention, 57% used family planning services and 11% used couples voluntary counseling and testing. Among the families where only the woman participated, 69% used family planning services and 46% used couples voluntary counseling and testing. In households where both partners participated in the intervention, 71% utilized family planning services and 65% went to couples voluntary counseling and testing.
A cross-sectional study conducted in Ethiopia in 2011 found that knowledge about availability of antiretroviral drugs in voluntary counseling and testing sites, information about confidentiality, absence of perceived stigma, and higher knowledge about HIV were associated with increased utilization of voluntary counseling and testing services. The study was conducted on 711 university students with a mean age of 21.5 years old. A majority of the participants were male (73.3%) or single (91.6%). Among the study participants, 81.4% had perceived confidentiality of voluntary counseling and testing services. Additionally, 73.3% reported having heard about HIV counseling and testing services through the mass media, and 71.1% reported having heard about HIV testing and counseling services through healthcare workers. Although only 58.5% of the participants had utilized voluntary counseling and testing services in the past 12 months, 88% reported a willingness to utilize HIV testing and counseling services in the future. Students with knowledge about HIV were 3.69 times more likely to utilize HIV counseling and testing services than those who did not have knowledge about HIV, and students who knew about the availability of antiretroviral therapy in the voluntary testing and counseling site were 3.12 times more likely to utilize voluntary counseling and testing services than those who did not. Students who perceived risks associated with HIV/AIDS testing were 2.4 times more likely to utilize testing and counseling services than those who did not, and students who had perceived confidentiality of voluntary testing and counseling services were 3.0 times more likely to utilize voluntary testing and counseling serves than those who didn’t perceive confidentiality of these services. Lastly, students who perceived stigma and discrimination were 0.013 times less likely to utilize voluntary counseling and testing services than those who did not perceive stigma.
6. Young women living with HIV can safely deliver HIV-negative infants with appropriate treatment. [See also Safe Motherhood and Prevention of Vertical Transmission ]
A study in Brazil with eleven HIV vertically infected adolescents who were followed from 2002 to 2009 at six medical centers and became pregnant single or multiple times and gave birth to 14 HIV-negative infants with one infant lost to follow up. Between 2000 and 2008 in Brazil, 4,900 pregnant adolescents aged 10 to 19 living with HIV were reported. Disclosure of diagnosis occurred at a median age of 12 years. Of the mothers of these pregnant adolescents, six were still alive but only one had received antiretroviral drugs during prenatal care. Many of the pregnant adolescents living with HIV were born before HIV prenatal screening became a standard of care for pregnant women. The eleven perinatally acquired HIV-positive pregnant adolescents had their sexual debut at a median age of fifteen years, similar to the general adolescent populations. The median duration of antiretroviral use was 7.8 years. Ten of the eleven patients had previously been exposed to zivudine during childhood. Antiretroviral drugs were used in 14 of the 15 pregnancies. The median CD4 count during pregnancy was 394. Antiretroviral management of these HIV positive adolescents was similar to that of women whose HIV is first discovered during pregnancy. All the pregnant adolescents had cesarean section prior to labor and before ruptured members. All newborns received zivudine during the first six weeks of life and none were breastfed. “…This third generation of HIV-exposed infants needs to be addressed within HIV-1 specialized adolescent care settings”.
7. Integrating HIV testing and counseling into existing reproductive health services for young people may lead to increased uptake of HIV testing and counseling for youth ages 15 to 24. [See also HIV Testing and Counseling for Women]
A cross-sectional, non- experimental evaluation of a program that integrated voluntary counseling and testing HIV services into sexual and reproductive health clinics at three sites in Vietnam found that the program increased the amount of youth (ages 15 to 24) who wanted an HIV test from 33% at baseline to 51% at a 24 month follow- up, and increased the amount of youth who had ever tested for HIV from 7.5% to 15%. The study was conducted from 2006 to 2009, and collected data from client exit interviews and interviews with community youth. The project was implemented by Maries Stopes International Vietnam, which aimed to enable access to effective voluntary and counseling services, facilitate emotional and medical support for clients living with HIV, and influence clients’ HIV risk behaviors. Researchers used focus group discussions with community representatives, clinic clients, service providers, local health authorities and youth to better understand the community and develop a program that would best address the needs of potential client groups. Three project sites with already existing sexual and reproductive health clinics were chosen to receive the intervention. At each site, researchers recruited 20 peer educators who were then trained in communication skills and outreach and worked to refer youth to the clinics and distribute health materials. At baseline, data was collected for 813 community youth (383 males and 432 females) and 399 exit clients, and at the 24-month follow-up point, data was collected for 501 community youth (201 males and 299 females) and 399 exit clients. The study evaluated people’s use of HIV testing and voluntary counseling and testing services and their knowledge of HIV/ AIDS, as well as behavioral indicators, such as alcohol use, sexual behaviors, whether friends were using drugs, and whether they had met a peer educator in the last 12 months. Clients requesting HIV voluntary counseling and testing during their current visit to clinics increased from 5% to 24.5%. In addition, the number of people getting tested for HIV at project supported clinics increased from 9.3% to 17.8%. The amount of people who had a repeat test in the 12 months before the study was 67.5% at follow-up, compared to 54.5% at baseline, and those willing to pay for a HIV test increased from 68.7% to 80.2%. At baseline 49.4% of the people had met a peer educator in the past 12 months, compared to 63.1% at follow-up. At follow-up, there was a significant increase in the number of community youth that knew that having sex with one uninfected partner (from 80.8% to 90.2%), practicing abstinence (from 51.4% to 69%), and consistently using condoms during sex (from 87.5% to 95.5%) are methods to prevent HIV transmission. At follow up, there was also a significant increase in the number of community youth who would purchase food from a vendor living with HIV/AIDS (from 32.5% to 45.5%), would care for relatives living with HIV/AIDS (from 64.9% to 83.2%) and who believed that a teacher living with HIV/AIDS could continue teaching (from 66.3% to 78.4%). In addition, at follow-up 96.6% of people believed that a spouse or partner should be informed of one’s HIV status, compared to 89% at baseline. The number of community youth who considered themselves at risk for HIV increased from 23.2% at baseline to 33% at follow-up, and the number of youth who reported that they would use a condom or refuse sex if they knew their partner had STI symptoms increased from 72% to 90%.