The document summarizes the achievements of the NAFOPHANU Treatment Literacy Initiative piloted in 10 districts of Uganda from May 2021 to November 2023. Key achievements include reaching over 16,000 people living with HIV through treatment literacy sessions, following up over 4,000 clients, and 2,562 clients returning to care. Demand for viral load testing increased by 93% from 2021 to 2022 and 161% from 2022 to 2023, indicating greater awareness and utilization of viral load services. Lessons learned highlight the effectiveness of community-based, peer-led approaches and prioritizing vulnerable groups through tailored interventions.

1. Building a Resilient Treatment Literate Community
of People Living with HIV (PLHIV
National Review Meeting
Kampala district
Nov 29, 2023

2. Introduction
• Established in May 2003, National Forum of
People Living with HIV/AIDS Networks Uganda
(NAFOPHANU) is an umbrella organization that
coordinates networks of PLHIV in Uganda.
• With support ($422,000) from USAID/Civil Society
Strengthening Activity (CSSA) NAFOPHANU
Piloted Treatment Literacy project for 18 Months,
• Goal: Improved treatment literacy among PLHIV
for better treatment outcomes: increased
retention in care and viral load suppression
• Project targets: PLHIV; peer led, with, by and for
PLHIV
• Primary target: children, adolescents, young
people, unstable adults including newly enrolled
and the elderly

3. Project Objectives
i. To build the capacity of community resource
persons, and PLHIV network leaders to conduct
treatment literacy sessions for improved
retention of newly enrolled and unstable
Clients in the 10 districts September 2023.
ii. To increase awareness on HIV treatment
literacy among PLHIV, caregivers, and
community members to improve retention in
care and promote positive living in the 10
districts by September 2023
iii. To advocate for the prioritization of treatment
literacy program at community, district,
regional and national levels by September 2023
iv. To support coordination of PLHIV networks to
spearhead the community led treatment
literacy programme in the 10 districts by
September 2023

4. CQUIN Differentiated Service Delivery Across the HIV Cascade Workshop | August 15 – 19, 2022
• In 10 districts of northern
Uganda.
• Acholi (Gulu, Amuru,
Kitgum, Agago, Lamwo)
• West Nile (Nebbi, Zombo,
Koboko, Yumbe, Moyo)
• Selected based on low viral
load suppression and high
interruptions in treatment
• The model targets 4 health
facilities per district, with 3
expert clients (man, woman
and young person)
The Peer led treatment
literacy pilot

5. Project coverage
1. Moyo (Moyo General Hospital , Loferi Health Centre III, Lagoba Health Centre III, Laropi Health center
III )
2. Nebbi (Orussi HC III, Kucwinyi HC III, Paminya HC III, Kalowangu HC III)
3. Yumbe (Kulikulinga HC, Yumbe HCIV, Barakala HC111, Joromogo HC111)
4. Koboko (Koboko General Hospital, Koboko Mission Health Center III, Lobule HC 111, Dranya
Health centre IV)
5. Zombo (Zeu HC111, Warr HCIV, Nyapea Hospital, Paidha HC111)
6. Amuru (Atiak HCIV, Bibia HCIII, Pabo HCIII, Otwee HCIII)
7. Gulu (Gulu Regional Referral Hospital, Awach HCIV, Laroo HCIII, Oywee HCIII)
8. Kitgum (Loborom HCIII, Mucwini HCIII, Akuna Laber HCIII, Kitgum Matidi HCIII)
9. Lamwo (Madi Opei HCIV, Lokung HCIII, Padibe HCIV, Palabek Ogili HCIII)
10. Agago (Patongo HCIV, Lira Palwo HCIII, Adilang HCIII, Lira Kato HCIII)

6. Implementation model
• 190 peers
• Male, female and
young person
• Work with health
facility teams to identify
and map out clients
Training and
equipping the
teams
• Community
• Health facility
• Group and individual
• Family level
Provide client
centered treatment
literacy • Follow up on clients
dis-engaged from care
• Follow up priority
groups
Follow up, support,
counselling and
documentation
Priority groups, children, adolescents, non suppressed adults, key populations

7. • Integrated model at family level

8. Interventions
• Trained Expert Clients 140 adults and 50 YPLHIV
• Treatment Literacy sessions at facility and community
• Expert Clients experience sharing meeting
• Referrals and linkages
• Formation of Psychosocial support groups
• Facility based engagement meetings on treatment Literacy
• Community dialogues on Treatment literacy
• District stake holders meetings
• Coordination meeting for PLHIV Network
• Formed 10 district YPLHIV networks
• Data review meetings at facility level
• Support supervision meeting by both the PLHIV coordinators and
NAFOPHANU.

9. NAFOPHANU targets for lost to follow per
facility
District Health Facility Target
Nebbi Orussi Hc 111 13
Kucwinyi HC 52
Paminya HC111 17
Kalowangu HC111 15
Yumbe Kulikulinga HC 35
Yumbe HCIV 72
Barakala HC111 18
Joromogo HC111 20
Koboko Koboko General Hospital 106
Koboko Mission Health
Center III 66
Lobule HC 111 19
Dranya Health centre IV 21
Zombo Zeu HC111 90
Warr HCIV 45
Nyapea Hospital 50
Paidha HC111 60
Moyo Moyo General Hospital 126
Lefori Health centre 111 90
Lagoba Health centre III 90
Laropi Health Center III 90
District Health Facility Target
Kitgum Akuna Laber HC111 43
Kitgum -Matidi HC 111 58
Mucwini HC111 51
oboromo 23
Amuru Bibia HC 111 290
Atiak HC IV 61
Pabo 111 79
Otwee HC 111 53
Agago Lira Palwo HC 111 56
Lira Katto HC 111 42
Adilang HC 111 39
Patongo HC 111 74
Gulu Gulu Regional Refferal 37
Aywee HC 111 190
Labworomo HC111 37
Awach HCIV 89
Lamwo Madi-Opei HC IV 21
Padibe-HC IV 93
Lokung HC111 124
Palabek -Ogili 148

10. Achievements
16433 persons reached with TL (9537 Females &
6896 Males)
Age category by Gender Moyo Yumbe Zombo Koboko Nebbi Kitgum Amuru Gulu Lamwo Agago Total
25 yrs and above Male 77 304 1612 762 118 351 423 297 238 703 4885
25 yrs and above Female 56 536 2202 1140 132 372 797 739 187 792 6953
20-24 years Male 5 99 0 48 77 142 0 75 0 187 633
20-24 years Female 6 137 0 49 78 159 27 120 0 308 884
15-19 years Male 15 10 562 54 151 105 37 43 10 0 987
15-19 years Female 24 16 671 53 170 89 77 51 23 0 1174
14 years and below Male 5 36 98 10 93 25 0 14 18 92 391
14 years and below Female 4 51 111 23 116 35 0 30 33 123 526
Total 192 1189 5256 2139 935 1278 1361 1369 509 2205 16433

11. Achievement
4468, 44%
5598,
56%
Overall PLHIV reached with Treatment
Literacy
Male Female

13. Persons reached with treatment Literacy
sessions per district
192
1189
5256
2139
935
1278
1361
1369
509
2205
0 1000 2000 3000 4000 5000 6000
Moyo
Yumbe
Zombo
Koboko
Nebbi
Kitgum
Amuru
Gulu
Lamwo
Agago
Chart showing clients reached with Treatment Literacy per District

14. Persons reached with treatment Literacy
sessions by gender Female-9537 58%, Male-
6896 42%
85
377
1126
1570
1581
5327
0-4yrs
5-9yrs
10-14yrs
15-19yrs
20-24yrs
25 & above
Number of People Reached with Treatment
Literacy by Age
4468, 44%
5598, 56%
People reached with Treatment Literacy by Sex
Male
Female

15. Persons reached with treatment Literacy
sessions by age category
4885
6953
633 884 987 1174 391 526
0
1000
2000
3000
4000
5000
6000
7000
8000
25 yrs and
above Male
25 yrs and
above Female
20-24 years
Male
20-24 years
Female
15-19 years
Male
15-19 years
Female
14 years and
below Male
14 years and
below Female
Persons reahed by age category
Persons reahed

16. Persons followed up, total of 4,165 (
Female -2,293 55%, Male -1,872 45%)
Age and Gender category Kitgum Amuru Gulu Lamwo Agago Moyo Yumbe Zombo Koboko Nebbi Total
25 yrs and above Male 249 137 140 71 153 60 152 131 198 89 1380
25 yrs and above Female 238 132 209 57 197 97 301 167 209 148 1755
20-24 years Male 93 0 30 0 0 6 0 0 0 7 136
20-24 years Female 94 0 3 0 0 6 0 0 0 4 107
15-19 years Male 81 6 1 3 0 15 55 21 8 13 203
15-19 years Female 108 0 46 6 0 14 15 35 12 15 251
14 years and below Male 32 0 3 15 21 6 59 3 9 5 153
14 years and below Female 27 0 3 17 21 9 80 5 14 4 180
922 275 435 169 392 213 662 362 450 285 4165

17. Persons followed up per district
1089
275
487
207
434
242
816
405
485
309
0 200 400 600 800 1000 1200
Kitgum
Amuru
Gulu
Lamwo
Agago
Moyo
Yumbe
Zombo
Koboko
Nebbi
Chart showing clients followed up per district

18. Persons that returned to care total 2,562(
Female=1446, Male- 1,116)
Age and gender
category Moyo Yumbe Zombo Koboko Nebbi Kitgum Amuru Gulu Lamwo Agago Total
25 yrs and above Male 13 100 83 149 77 125 77 90 41 129 884
25 yrs and above
Female 16 197 127 150 109 164 43 167 42 136 1151
20-24 years Male 0 0 0 0 4 34 0 14 0 0 52
20-24 years Female 0 0 0 0 1 67 0 3 0 0 71
15-19 years Male 7 19 20 3 10 45 0 1 1 0 106
15-19 years Female 10 10 16 9 11 42 0 31 2 0 131
14 years and below
Male 2 16 3 6 5 25 0 0 10 7 74
14 years and below
Female 5 32 5 11 2 16 0 1 12 9 93
Total 53 374 254 328 219 518 120 307 108 281 2562

19. Comparison btn persons followed and
Persons that returned to care
1446
2293
1116
1872
0 500 1000 1500 2000 2500
Returned to care
Followed up
Chart showing Persons followed up and those that returned to
care
Male Female

20. Other achievements
• Worked with MOH, USAID/SBCA to develop and print the HIV/AIDS
Treatment literacy flip chart client health education tools and has
disseminated country wide.
• Integrating treatment literacy in the community programs that attract
young men such as; football, dialogues, VSLA contributed to the high
number of males reached
• Peer-to-peer attached based on age and gender contributed to
increased number of adolescent and young women returning to care
• Treatment literacy sessions conducted during home visits provided
peers time to adequately support clients without fear of long lines
• Treatment literacy sessions integrated in CDDP/CCLADS/MCCLADS
have helped bridge health education gap due to limited human
resource

21. Achievement: Developed HIV/TB
prevention, care and treatment literacy
Hand book
• The team worked with MOH
and USAID/SBCA to develop
a handbook to provide
HIV/TB prevention, care, and
Treatment Literacy. Handbook
has been printed and
disseminated country wide
• This has ensured the peer and
expert clients offer
standardized information all
in one handbook

22. Outcome 1: demand and utilization for Viral load services in 10 districts
Jan 21 – Dec 22 increased by 93% and Jan 22 – Nov 23 by 161%.
15314
29549
77089
0
20000
40000
60000
80000
100000
January 2021 to
December 2021
January 2022 to
December 2022
January 2023 to
Nov 2023

23. Key take aways:
• Consistent Growth in V.L Services: The data illustrates a consistent upward trend in
the number of V.L samples received, indicating a substantial increase in demand for Viral
Load services throughout the project duration.
• Twofold Increase from 2021 to 2022: There is a notable twofold increase in V.L
samples received from January 2021 to December 2022. This significant surge suggests
an enhanced awareness and utilization of Viral Load services within the targeted
districts.
• Acceleration of Services in 2023: The most remarkable observation is the
substantial jump in V.L samples received from January 2022 to November 2023. The
sharp increase in 2023 suggests a potential acceleration of the initiative's impact, with a
heightened focus on Viral Load monitoring.
• Indication of Positive Health-Seeking Behavior: The overall increasing trend
signals positive health-seeking behavior among People Living with HIV (PLHIV) in the
project districts. This is crucial for achieving treatment goals and maintaining viral load
suppression.
• Potential Correlation with Treatment Literacy: The observed patterns align with
the timeline of the NAFOPHANU Treatment Literacy Initiative, suggesting a potential
correlation between the initiative's implementation and the surge in Viral Load service
utilization.

24. Community voices

26. Documented voices-health workers

27. Data from CPHL dash board showing an increase in uptake of
Viral load services in NAFOPHANU districts of operation

28. Lessons learnt
• Community-Based and Peer-Led Approaches Work: The report highlights the effectiveness of community-based and peer-led
approaches in improving treatment literacy among People Living with HIV (PLHIV). Leveraging the expertise and experiences of
PLHIV to support and empower their peers proved to be a successful strategy.
• Tailoring Interventions for Specific Groups: Prioritizing specific vulnerable groups, such as children and adolescents aged 0-24 years
and un-suppressed adult clients, was critical. Tailoring interventions to address the unique challenges faced by these groups
resulted in better health outcomes.
• Significant Reach: The project's reach was extensive, with a substantial number of PLHIV benefiting from treatment literacy
sessions, counseling, and follow-up support. This demonstrates the importance of scaling up such initiatives to reach more
individuals.
• Positive Impact of Follow-up: The success in following up with clients who were lost in care or had missed appointments is a
significant learning. Consistent follow-up efforts led to the return of many individuals to care and improved treatment continuity.
• Importance of Peer Support Structures: The formation of Youth and Peer-Led structures played a crucial role in improving access,
adherence, and retention in care. These structures also served as advocates for the needs of PLHIV in their districts.
• Data Review Meetings Enhance Quality: Conducting data review meetings with Expert Clients contributed to collecting and
reporting quality and authentic data. Regular data review can improve the accuracy of project monitoring and evaluation.

29. Lessons learnt
• Psychosocial Support Is Valuable: The provision of psychosocial support groups was essential in helping PLHIV cope with the
emotional and psychological challenges of living with HIV. Such support should be integrated into similar programs.
• Community Engagement Is Key: Community dialogues on treatment literacy played a vital role in raising awareness, dispelling
misconceptions, and addressing concerns. Engaging the community at various levels is critical for success.
• Stakeholder Collaboration: The report emphasizes the value of collaboration with stakeholders, including government officials, civil
society organizations, healthcare providers, and religious leaders. These partnerships strengthen treatment literacy efforts and
coordination.
• Adapting to Challenges: The project faced various challenges, including geographical constraints, client mobility, insecurity, and
infrastructure issues. The ability to adapt strategies, explore alternative means of communication, and work closely with local
resources and stakeholders was crucial in overcoming these challenges.
• Addressing Stigma: Stigma, both self-stigma among clients and stigma from parents of young PLHIV, posed barriers to
participation. Addressing stigma remains an ongoing challenge that requires continued efforts in future initiatives.
• Advocacy for Scaling: The national stakeholder meeting served as a platform to advocate for the adoption, integration, and scaling
of treatment literacy programs nationwide. This highlights the importance of advocating for successful models to benefit a broader
population.

30. Success story- YPLHIV

31. NAFOPHANU: Next steps
• Scale Successful Models: Expand the implementation of successful community-based and peer-led models to additional districts or
regions, ensuring a wider impact.
• Continuous Monitoring and Evaluation: Establish a robust system for continuous monitoring and evaluation to track the impact of
ongoing and future projects, allowing for real-time adjustments and improvements.
• Enhanced Training Programs: Develop and implement enhanced training programs for Youth and Peer-Led structures, addressing
challenges such as high illiteracy rates and self-stigma. This could involve interactive and visual training materials.
• Strengthen Advocacy Efforts: Continue and strengthen advocacy efforts at both the district and national levels to ensure sustained
support for treatment literacy programs. Share success stories and lessons learned to garner support.
• Address Stigma: Develop targeted campaigns and interventions to address stigma, both within the PLHIV community and among
parents. Collaborate with local influencers and community leaders to promote understanding and acceptance.

32. MOH, Ips, Donors: Next steps
• Support Scaling Initiatives: Provide continued funding and support for scaling successful initiatives
to reach a larger population. Emphasize the importance of evidence-based and impactful
programs.
• Invest in Data Quality Improvement: Allocate resources to enhance data quality by providing
training and resources for data collection and review. Accurate data is essential for informed
decision-making.
• Encourage Innovation: Encourage NAFOPHANU to explore innovative approaches, technologies,
or partnerships that could further improve the effectiveness and efficiency of treatment literacy
initiatives.
• Support Research and Development: Fund research to explore new interventions and strategies
for improving treatment literacy, especially focusing on addressing challenges identified in the
report.

33. Health Workers: Next steps
• Collaborative Training: Collaborate with NAFOPHANU to conduct joint
training programs for healthcare providers and PLHIV to foster a better
understanding of treatment literacy and improve collaboration.
• Regular Feedback Mechanism: Establish a regular feedback mechanism
between health workers and PLHIV to address concerns, improve
communication, and enhance the overall quality of care.
• Expand Facility-Based Engagements: Increase the frequency and depth of
facility-based engagement meetings to address emerging challenges and
continuously improve treatment literacy efforts.

34. Expert Clients: Next steps
• Expand Experience Sharing Meetings: Encourage more frequent experience
sharing meetings among Expert Clients to facilitate continuous learning,
mutual support, and the identification of best practices.
• Mentorship Programs: Implement mentorship programs where
experienced Expert Clients mentor newer members, fostering a sense of
community and providing guidance in supporting their peers.
• Advocacy for Integration: Advocate for the integration of Expert Clients into
the formal healthcare system, recognizing their valuable role in improving
treatment outcomes and support for PLHIV.

35. PLHIV and Communities: Next steps
• Community Empowerment: Engage PLHIV and communities in empowerment programs
that go beyond treatment literacy, focusing on overall well-being, economic
empowerment, and reducing stigma.
• Community-Led Initiatives: Encourage the initiation of community-led initiatives that
address specific local challenges related to treatment literacy, ensuring ownership and
sustainability.
• Peer Support Networks: Strengthen and expand peer support networks within
communities to ensure ongoing support and information sharing among PLHIV.
• Promote Self-Advocacy: Empower PLHIV to become advocates for their own healthcare
needs, fostering a sense of self-advocacy and active participation in decision-making
processes.

36. Acknowledgments

37. Thank you!