Adolescents living with HIV need accurate information about their diagnosis, care, and treatment; as well as long-term counseling and support. In-person support groups are a promising approach to meeting these needs, however some ALHIV face distinct challenges to attending regular in-person meetings. Virtual support groups may help to overcome challenges such as transportation costs, living away from home because of school or work, fear of stigma, or perceived danger associated with disclosure to household members. In this session attendees will learn how FHI 360, on behalf of YouthPower Action, is currently adapting the evidence based “Positive Connections: Leading Information and Support Groups for Adolescents Living with HIV, for delivery via Facebook.

1. Positive Connections: Digital Support for
Adolescents Living with HIV
Kate Plourde
Senior Technical Officer,
Research Utilization,
GHPN, FHI 360

2. Adolescents and HIV
● Young people account for 42% of all new non-
pediatric HIV infections
● Few know their HIV status
● Linkage to care can be problematic
● While mortality for PLHIV overall is decreasing,
mortality among ALHIV is increasing
● Notable gap in programming for ALHIV
“I might have HIV, but I
still want to have a
boyfriend.…get
married one day. The
nurses won’t tell me
about contraception
because they think I
shouldn’t be having
sex.”

3. Why Focus on Retention and Adherence?
● Retention in care over time is challenging for all PLHIV, but especially for
adolescents
● LTFU is higher for adolescents than any other age group
● ART adherence (>95%) is critical for achieving viral suppression, but
adolescent adherence is sub-optimal

4. Our Goal:
Develop and test an intervention designed
to reduce LTFU and to improve retention
and adherence among ALHIV

5. Virtual Support Groups
● Limited evidence on approaches to
reach ALHIV
● Group counseling and mHealth
approaches demonstrate some
evidence
● Potential to overcome barriers to
attending in-person meetings

6. Intervention Development Process
Concepttesting
andyouthdesign
workshops
Contentand
platformdevelopment
Feasibility
assessment
Programrefinement

7. Logic Model
Barriers
• Lack of knowledge
about HIV
• Misconceptions
about HIV
transmission
• Poor treatment
literacy
• Confusion/ fear
associated with new
diagnosis
• Weak support
networks
• Fear of stigma
Strategies
• Informational
messaging
• Virtual support
groups
• Access to
trained
provider
Outcomes
• Improved knowledge
about HIV and HIV
treatment
• Improved attitudes
toward HIV care and
treatment
• Improved self-worth
• Increased support
network
• Increased informational
social support
• Increased emotional
social support
• Increased appraisal social
support
Results
• Increased
likelihood of
retention in
care
• Improved
treatment
adherence

8. Concept Testing

9. Intervention Components
Informational
Messaging
Access to a
Trained
Facilitator
Virtual Support
Group

10. Informational Content: Positive Connections
● Provides adult facilitators with
background information about the
needs of ALHIV
● Tips for starting and leading an
information and support group
● 14 sessions to be used in a group
setting
● Guidance on tracking a program’s
progress and success

11. Adaptation of Positive Connections Content for
Facebook
● At-a-Glance statements
● Key messages
● Role Model Stories
● Discussion questions
● Review questions and wrap-up
statements
● Interactive social activities and
games (New!)

12. Intervention Topics
● Understanding HIV
● Disclosure and Developing Trust
in Relationships
● Treatment and Adherence
● Nutrition and Health
● Sexual and Reproductive Health
● Health and Positive Prevention
● Violence and HIV
● Communication and Problem-
Solving Skills
● Exploring Your Feelings
● Knowing Your Rights: Handling
Stigma and Discrimination
● Making Decisions and Planning
for the Future
● Your Support Network

13. Intervention Content - Examples
…….
…….

14. Pilot Findings
● Facilitators and ALHIV were strongly supportive and liked the
intervention
● Participants:
○ Felt that the intervention was easy to access and useful
○ Reported that they enjoyed taking part in it,
○ Felt comfortable with the facilitator and group members
○ Wanted to continue the intervention,
○ Would recommend the intervention to other ALHIV
● Overall, facilitators completed most scheduled activities on-time
and as intended and felt that using Facebook on phones was easy
● There were some challenges with a few specific activities (i.e.
uploading adherence plan photos and posting quizzes)
“I am a very timid and shy
person. But the intervention
helped me. There are certain
things I was able to
overcome. I felt so miserable
when I found out that I’m
positive but after
interacting with people, I
find out that I don’t have to
kill myself or die or feel
miserable …So I have
decided to open up and feel
good about myself.” - 18-
year-old female

15. Next Steps
● Content modification based on
results from feasibility assessment
● Outcome evaluation

16. Final Thoughts
● Strategies to reach ALHIV need to be relevant and address
barriers to access
● Technology offers broad reach and ability to facilitate
human connection
● Facebook appears to provide a feasible and acceptable
platform through which to offer information and support to
ALHIV

17. Thank You!
“Knowing that I'm
chatting with other youths
that are positive, it was
fun.”
“What I liked most is the fact
that it gives me more
enlightenment about my
condition and it also gives me
information on how I can deal
with it”
“I love the interaction
because it enabled me
to share my problems
and worries with the
group members”