Ministry of Health

Uganda National
Antiretroviral Therapy Adherence Strategy

July 2011
Uganda National ART Adherence Strategy, July 2011

Uganda Ministry of Health 2011

This material may be freely used for non-commercial purposes as long as

the Ministry of Health is acknowledged.

The Ministry of Health welcomes feedback and comments from both users and experts in Adherence to
ART. Please provide any feedback to:

The Director General Health Services

Attn: Programme Manager
STD/AIDS Control Program
Ministry of Health
P.O. Box 7272 Kampala, Uganda
Tel: + 256 41 4340874
Fax: +256 41 231584
E-mail: zainabakol@gmail.com

Suggested citation:
Uganda Ministry of Health 2011. National ART Adherence Strategy.

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Table of Contents

Abbreviations ................................................................................................................................. iv

Acknowledgement .......................................................................................................................... v

Foreword ........................................................................................................................................ vi

1.0 Introduction ............................................................................................................................... 1

2.0 Situation Analysis ..................................................................................................................... 2

3.0 Justification ............................................................................................................................... 2

4.0 Goal and Objectives .................................................................................................................. 3

4.1 Purpose.................................................................................................................................. 3

4.2 Goal ....................................................................................................................................... 3

4.3 Objectives ............................................................................................................................. 3

5.0 Strategies for Adherence ........................................................................................................... 4

6.0 Interventions ............................................................................................................................. 6

7.0 Roles of Health Workers in Adherence .................................................................................... 7

8.0 Adherence Tools ....................................................................................................................... 8

Continuous ART Adherence Counselling/Monitoring (preferably monthly) ........................... 16

Appendix 1: List of Participants in the Stakeholders Workshop .................................................. 24

Appendix 2: Paediatric ART Counselling Standard Checklist ..................................................... 25

Appendix 3: Adherence Best Practices ......................................................................................... 27

References ..................................................................................................................................... 32

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Abbreviations

ACP - AIDS Control Programme

ADPs - AIDS Development Partners
AIDS - Acquired immune deficiency syndrome
ARVs - Antiretroviral drugs
ART - Antiretroviral Therapy
AZT - Zidovudine
CDDP - Community Drug Distribution Point
EFV - Efavirenz
HAART - Highly Active Antiretroviral Therapy
HIV - Human Immunodeficiency Virus
HSSIP - Health Sector Strategic and Investment Plan
IEC - Information Education and Communication
JMS - Joint Medical Store
LMIS - Logistics Management Information System
MoH - Ministry of Health
NAC - National ART Committee
NGO - Non-Governmental Organization
NMS - National Medical Store
OI - Opportunistic Infections
PEP - Post Exposure Prophylaxis
PI - Protease Inhibitor
PMTCT - Prevention of Mother to Child Transmission of HIV
TB - Tuberculosis
VCT - Voluntary Counselling and Testing
WHO - World Health Organization

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Acknowledgement
The development of this strategy was made possible through technical and financial support
provided by Centre for Disease Prevention and Control. The STD/AIDS Control Programme of
the Ministry of Health expresses a lot of gratitude to CDC Uganda for this support. Finalisation of
the document received a boost from STAR-EC through USAID funding. We are deeply grateful for
this assistance.

Members of the Task Team who produced the initial draft are thanked for initiating the whole
process. Representatives from different organisations and implementing partners listed in the
appendix are particularly thanked for completing the development process. The entire ART team
which comprises of Dr. Ario Alex Riolexus, Dr. Namagala Elizabeth, Dr. Elyanu Peter, Dr.
Namuwenge Norah, Dr. Baliddawa Hudson, Dr. Ikoona Eric, Ms. Nampala Florence and Ms. Basia
Margaret were instrumental in the whole development process, ACP is thankful to them. In
addition, appreciation goes to other MoH ACP officers, Dr. Kayita Godfrey and Mr. Ssendiwala
Julius who contributed to the development of this document.

Special thanks go to the Programme Manager, Dr. Akol Zainab and the CDC MoH CoAG Project
Director, Dr. Nsubuga Peter for reviewing the document and providing invaluable contributions.

Dr. Zainab Akol

Programme Manager
STD/AIDS Control Programme

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Foreword
Uganda was one of the first African countries to respond aggressively to the HIV/AIDS epidemic,
moving rapidly to institute measures aimed at preventing HIV transmission. HIV prevalence rates
once described as being among the highest in Africa and tending toward 30 % declined and
stabilized around 6% within the last three decades. The advent of HAART significantly reduced
mortality due to HIV and has markedly improved the quality of life of PLHIV. The scale up of ART
started in 2004 and since then the number of patients enrolled on ART has continued to rise.

The goal of ART is to prolong the survival of HIV infected patients through suppression of HIV
replication, hence reducing the viral load and enhancement of the immune system. One of the most
important determinants of success of ART and achievement of good treatment outcomes is
adherence. Currently adherence level nationally is 91% which is below the acceptable level of 95%.
Whereas good adherence is associated with viral suppression and slow progression of the disease,
poor adherence leads to incomplete viral suppression, emergence of resistance and treatment failure
with subsequent deterioration of the immune system. Ultimately, poor adherence translates into
higher costs to the ART program. Primary and transmitted resistance results in switching patients
from the relatively cheaper first line regimens to more expensive second line drugs. Adherence is
therefore of paramount importance to the success of the ART program.

There are many programs implementing ART in Uganda and these programs are using different
approaches and strategies to ensure adherence to ART. MoH recognises that the poor adherence
level in the country have been greatly contributed to by lack of a concerted strategy which guides all
implementing partners to design ways of improving and sustaining good adherence practices. The
development of this adherence strategy which was done through a consultative process aims at
guiding all stakeholders to improve adherence to ART. Its my hope therefore that this document
will be useful in contributing to attainment of good treatment outcomes through improved
adherence. On behalf of the Ministry of Health I salute all the people and institutions listed in the
acknowledgement for the selfless work they did to develop this strategy.

Dr. Ruth Jane Aceng

Director General Health Services

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1.0 Introduction
HIV was first described in Uganda in 1982, at Kasensero Fish Landing site along the shores of lake
Victoria (in Rakai, South Western Uganda). In the early 1990s the adult prevalence reached 18
percent, and with the intensified multi-sectoral response the national prevalence is currently at 6.4
percent in adults, and 0.7 percent amongst children, translating into 1.2 million people infected with
HIV including 150,000 children aged below 15 years. However, women are disproportionately
affected, accounting for 57%. The annual incidence of HIV in Uganda is 132,000, while the annual
AIDS-related mortality is at 64,000. An estimated 43 percent of new infections occur among people
engaged in mutually monogamous heterosexual relationships.

ARVs were first introduced in Uganda in 1992, as a pilot research at JCRC. The Ministry of Health
with support from development partners have been supporting efforts to scale up chronic care and
ART since 2004. The increased availability of ART has created demand for HCT services and vice
versa. Currently, an estimated 577,000 people are need of ART, however, by March 2011, only
274,000 had access to this life saving medication. Its important to note, that less than 20% of
eligible children are receiving ART. Because of the need to take lifelong ARV medications,
adherence to treatment becomes a challenge over time.

Adherence is the extent to which a persons behaviour in terms of taking medication coincides with
medical advice. Achieving adherence is an interactive process. While the ultimate responsibility for
adherence to treatment rests with the patient, it is a complex process influenced by factors both
internal and external to the patient, and a process in which the patient must confront and come to
terms with those influences in a manner that is conducive to adherence. Achieving adherence is not
a one-time-only event, it is a dynamic and ongoing process that the patient negotiates each time a
dose of medication must be taken. Every day with every dose, clients must navigate those influences,
many of them negative and outside their sphere of influence. This strategy is intended to provide
guidance to implementers to improve and monitor adherence to ART and other HIV-related
treatments.

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2.0 Situation Analysis
In an effort to achieve universal access to prevention, care and treatment, Uganda is scaling up HCT
services using client and provider initiated approaches. Other entry points into HIV care include
PMTCT/EID, MCH/FP, TB and STD/SRH clinics. These interventions have enabled more people
to know their HIV status and access treatment early. The country has also adopted the new 2010
WHO treatment guidelines with modified ART eligibility criteria based on a cut off of <350 T-
Helper cells per microlitre of blood, to enable more people access HIV care and treatment in ealier.

There are more than 485 sites that have been accredited to provide ART services, with plans to
accredit more sites as capacity allows in order to decentralize ART services and realise universal
access to treatment. The national adherence level for ART stands at 91 percent, implying that 9% of
patients on ART have adherence levels below the required minimum of 95 percent. The factors
responsible for this poor adherence to ART include poverty, stigma, non-disclosure, high pill burden
and drug side effects. Others are alcohol and drug abuse, lack of dedicated treatment supporters,
multiple caretakers, as well as uncoordinated ART logistics supply chain leading to stock outs,
inadequate client education and preparation. These factors need to be addressed by all stakeholders
involved in ART programming and implementation.

3.0 Justification
Good adherence is critical in optimising the benefits of antiretroviral therapy and influences the
biological, clinical and public health outcomes of treatment. Studies have shown that adherence to
ART is closely associated with the degree of viral suppression, which means that poor adherence
leads to incomplete viral suppression, emergence of resistant viral strains and deterioration of
immune system, disease progression, treatment failure and death. Poor adherence is also associated
with higher costs for both the individual and the national ART programme. WHO recommends that
accurate assessment of adherence is necessary for effective and efficient treatment planning.

Decisions to change recommendations, medications, and/or communication style to promote

adherence depend on valid and reliable measurement of adherence. Without formal assessment,
providers are unlikely to accurately identify adherent and non adherent patients, missing the
opportunity for reinforcement and constructive interventions respectively. If adherence is below
optimal and drug levels are low, viruses continue to replicate. HIV is highly adaptive to viral-

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suppressing pressures and can rapidly mutate to develop resistance. Another reason why adherence
is important is that HAART may still improve CD4 cell levels despite ongoing viral replication
because the mutant viruses which emerge are less fit and less destructive than wild-type HIV.
Therefore, adherence needs to be measured in clinical settings. Accurate and reliable measures of
adherence and better understanding of both barriers and facilitators of adherence are needed to help
clinicians identify patients who need assistance with their pill taking, to design and evaluate effective
interventions to enhance adherence, and to interpret the role of adherence in evaluating clinical
outcomes and making treatment decisions. Measuring adherence to ART is even more challenging
due to evolving evidence that different classes of ARVs may require difference adherence levels to
sustain virological suppression. The responses seen in the different class-specific adherence-
resistance relationships indicates that there may be differences in the manner the HIV responds to
different levels of adherence.

Its increasingly realised that ART implementing partners in Uganda have different adherence
monitoring practices, some of which achieve better results and others not, hence the need for
harmonisation and standardisation of ART adherence strategies. This instrument will provide
guidance for the partners involved in HIV treatment, care and support services. It will also help
those already providing ART services to mitigate the barriers to good ART adherence.

4.0 Goal and Objectives

4.1 Purpose
The purpose of the adherence framework is to provide guidance for planning and implementation
of ART adherence interventions in Uganda

4.2 Goal
The overall goal of the adherence strategy is to improve the longevity and quality of life of people
living with HIV so as to contribute to the economic development and prevent development of
resistance as well as preventing further HIV transmission.

4.3 Objectives
The General Objective is to ensure that all clients attain adherent level 95% and maintain this at
each clinic encounter
The Strategic objectives are:

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 (a) To strengthen mechanisms for monitoring ART adherence
(b) To promote patient self management practices
(c) To promote use of community referral systems
(d) To build capacity of ART programs to improve adherence
(e) To advocate for supportive environment for ART

5.0 Strategies for Adherence

A- Strengthen Adherence Literacy

This should be done by providing relevant information on medicines (ARVs and OI drugs) for HIV
treatment. The issues that have to be addressed include:
Benefits, Side effects (Major and Minor), Storage, Administration (frequency and route),
Dietary restrictions, Duration of treatment and the need for monitoring.
Use of reminders (e.g. Alarm clock) to remember taking the medicines
Patient on ART need continuous adherence information at every encounter
Provision of IEC materials on adherence in an appropriate language
Development of the cue cards to act as guide for counselling and information giving

B- Determine Adherence Level

At every encounter/patient visit, adherence level should be determined by conducting a pill count or
obtaining a self report from the patient. This is to be accompanied by calculating adherence
percentage. This information is then entered into the ART encounter page. The health worker
should endeavour to discuss the challenges the patient is facing in case the percentage is less than
95%.

C- Ensure adequate stock of supplies

Clients must never miss re-fills because of stock outs. So the Health Workers should ensure orders
for supplies are filled accurately, correctly and submitted on time. Its important that the supplies
received from NMS/JMS/any other supplier are cross-checked to compare with what was ordered.

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D- Utilize Expert Clients

As part of the principle of greater involvement of PLHIV, expert clients should be utilised in areas
where they have relatively good competencies in ART management. Some of these areas include:
group counselling, patient tracking (follow-up), treatment support and triaging. Others are: linking
or referring patients to support services within the facility, taking weight and height, as well as
patient record keeping and retrieval, and data entry. Different kinds of motivation may be used to
keep them interested in their voluntary work.

E- Follow-up of Clients

This should begin with giving informed appointments. For those found not to be keeping
appointment dates, follow-up can then be initiated at appropriate times. This can be done through
home visiting, Phone calls, Text messaging, and email depending on the prevailing circumstances.
Home visiting can be done in partnership with PLHIV and other CHWs.

F- Psycho-Social Support

Psycho-Social Support groups can be formed at health facilities or in the community to provide peer
support, on-going counselling (including adherence counselling), information sharing, testimony
giving etc. This strengthens adherence to medications.

G- Clinical Adherence Meetings

These meetings are held by the health facility ART team to share achievements, discuss challenges
and jointly agree on the solutions to improve adherence. This can be done monthly and is followed
by a meeting between the ART team, management/administration and the patients to discuss
adherence issues and how to jointly address the challenges.

H- Use of Dairies at the Exit

All appointments should be entered in a diary at the exit. The exit in a facility set-up is usually the
pharmacy/dispensary. At the end of the clinic day, the diary should be handed over to the health workers
who will trace and retrieve the records of patients scheduled for the next clinic day. Once the patient files are

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all in one place, this would enable the site team to know patients who have kept or missed their appointments
in subsequent days.

I- Conduct Periodic Surveys on Adherence

The AIDS Control Programme in conjunction with partners should periodically conduct surveys on
adherence to determine factors affecting adherence amongst patients on ART. This would inform
reprogramming.

6.0 Interventions

Strategic Objective 1: Adherence Program Assessment

Develop standard adherence tool
Regular assessment of adherence at national level
Conduct regular accreditation assessment and address emerging issues at ART sites
Establish an efficient patient appointment system

Strategic Objective 2: Institutional Capacity Building

Conduct Training Needs Assessment
Training on adherence counselling
Training staff on use of adherence tools and patient monitoring
Training staff on logistics management
Ensure effective staff rotation in service areas

Strategic Objective 3: Patient & Caretaker Empowerment

Strengthen IEC messaging and dissemination
Counsel all ART patients on every appointment day
Adherence should be part of health education on every clinic day
Peer-to-peer counseling for different age groups need to be encouraged
Ongoing individual counseling for special cases
Appropriate choice of Treatment buddies/supporters
Promotion of mutual disclosure and early disclosure in children
Adopt appropriate patient reminder methods
Provision of transport to the most in need clients
ART adherence preparation should begin as soon as clients are confirmed HIV+ (during
pre-ART care)
Promote patient self management practices

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Strategic Objective 4: Community and Interagency Collaboration
Nutritional support
Home Based Care
Follow-up and patient tracking
Net working with CBOs and VHTs
Community sensitization targeting influential persons such as Church, Opinion, Local and
Cultural Leaders

7.0 Roles of Health Workers in Adherence

A) Clinician

i. Clinical assessment of patients

ii. Prescription of HIV medicines
iii. Asking for pill balances and conducting physical count of remaining pills
iv. Giving appointment dates
v. Discussing with clients adherence issues
vi. Checking adverse effects of drugs
vii. Laboratory requests

B) Counselor /Nurse

i. Adherence preparation of patients

ii. Ensuring good appointment system
iii. Home visits prior to ART initiation and follow-up
iv. Linkage of clients to community and psycho-social support programs
v. Ensuring proper choice of a reliable treatment supporter
vi. Encouraging formation of Peer groups/Post Test Clubs
vii. Documentation of adherence issues that need attention of the site team
viii. Promotion of a Family centered approach in patient management

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 C) Pharmacist/Dispenser

i. Confirm the prescription

ii. Adequately Communicate drug regime changes
iii. Confirm that the clients have understood the medicines and dosages
iv. Checking and counting pill balances
v. Timely stock taking & ordering for logistics
vi. Timely planning for the clinic
vii. Communication about availability of drugs to clinicians in time.
viii. Pharmacovigilance
ix. Up-to-date records to ensure that the patients take the right drugs
x. Adherence team to monitor patient who miss appointments, preferably at the pharmacy
(Use of a Diary)

D- Nursing Assistant /expert client

i. Retrieval of patient files for the next clinic day
ii. Registration
iii. Triaging of patients
iv. Weight and height taking

8.0 Adherence Tools

A- Adherence Measurements

No single adherence measurement tool is optimal for the measurement of adherence at all levels.
The tools recommended in this strategy are grouped in two categories which include:
a) Direct and objective measures
Directly observed treatment (DOT)

Medication Event Monitoring System (MEMS)

b) Indirect measures
Pharmacy records

Self-report (including Computer-Assisted Self-Interviewing [CASI])

Pill count (PC)

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 Visual analogue scale (VAS)

Pill identification test (PIT)

The DOT method has health care workers directly administer medicines to patients. This method
confirms adherence since the health care worker observes the patient taking the medicine. The
DOT is an objective way of measuring adherence and can be highly effective in ART settings as long
as there is sustained commitment to uninterrupted care that is free to the patient. Conversely, there
are opinions that DOT requires extensive costs, can be stalled by stigma, erodes patients privacy, is
paternalistic, and may require complex logistics for a life-long treatment like HIV/AIDS.
Experiences with DOT in treating tuberculosis cannot be extrapolated to HIV/AIDS wholesale
because of issues of stigma and the huge cost that will be required for the administering of DOT in
a chronic, lifelong disease like HIV/AIDS.

The MEMS is considered by many to be the current state-of-the art method of evaluating
adherence, largely because adherence is most predictive of clinical outcome when measured with this
methodology. MEMS contain an electronic device fitted to pill containers which records the removal
of the cap. It is increasingly being used in the packaging industry and is reliable in recording dosing
histories of ambulatory patients. This electronic tool contains microcircuitry which can be integrated
into product packaging that may include medicine bottle caps, blister packages, and even nebulizers.
Removal of the cap or tampering is detected and recorded, and therefore provides a proxy for the
removal of a dose and consequent ingestion. The advantages of this method are that it correlates
well with virologic outcomes and that data is available in a computer accessible format, allows more
detailed view of non adherence patterns. Some challenges to the MEMS include patients opening
the bottle but not taking a pill, patients decanting pills, measuring only one medication at a time,
being unavailable for blister packs, and cost.

Some of the indirect electronic measures of adherence are also difficult for use in Uganda due to
infrastructure constraints. An example of this is using pharmacy records as a proxy of adherence for
CASI. This cannot be easily implemented for routine data collection on adherence since it depends
on information technology which is not universally available in most resource-limited countries.
Patients collecting their medications regularly on a due date are assumed to be adhering to treatment.
An effective record-keeping system is essential for pharmacy records to serve as a reliable proxy of

9
adherence. Features of pharmacy records as a proxy for measuring adherence include that the
method can generate a refill list and flag patients not reporting for refills. The limitations of using
pharmacy records include that they serve only as proxy of ingestion of medicine, require patient to
use the same pharmacy each time, and may require electronic tracking.
Other indirect methods of measuring adherence (self-report, PC, VAS, and PIT) have the potential
for use in resource-limited settings. Patient self-report of adherence is routinely used in assessing
adherence both in clinical trials and in routine clinic settings. The self-report method has been
validated and shown to predict virological response. However, there is also evidence that self-report
may overestimate adherence even when questions are asked in non-judgmental manner. While self-
reporting is easy to use, it is vulnerability to fabrications, to the dynamics of provider-patient
relationship and may overestimate adherence.

Whether pill counting is a sensitive tool for the measurement of adherence is controversial. In some
studies, pill count has been found to predict response to ART, particularly when conducted with no
advanced warning. However, in some other studies it has been shown to be liable to pill dumping,
white-coat adherence, fabrication, and manipulation.

VAS is a measurement instrument that tries to measure a characteristic or attitude that is believed to
range across a continuum of values and cannot easily be measured directly. For the measurement of
adherence, the patient is asked to place a mark somewhere along the line from 0 to 10 that best
describes their adherence to the prescribed ARVs. VAS is a simple tool for uncovering adherence
and has the potential for use in resource-constrained settings. The reliability and validity of the VAS
has been demonstrated, though measurement errors can still occur.

PIT is a novel method of detecting low adherence. PIT involves inviting patients to distinguish the
pills in their regimen from a display of ARVs, including two twin pills that are similar but not
identical. Other models of this method involve the inclusion of other adherence-related questions
for the patient to respond. These questions are constructed to provide further evidence that the
patient has a good understanding of how to take the prescribed medicines. The features of PIT
include reliability, particularly at the initial phase of treatment; correlation with validated self-report
adherence measure; loss of sensitivity in treatment experienced patients; and being a remote marker
of actual pill intake.

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B- SOP on Adherence Counselling

To support ART adherence and help achieve clinical goals (i.e., viral suppression, improved quality
of life, and reduced morbidity and mortality), adherence counselling sessions should be tailored to
the individual patient as much as possible.

(i) Key Counselling Considerations:

Interventions before starting ART include:

Assessing patient readiness for drug treatment or, if the patient is a child, the readiness of the
caregiver(s) to administer the drugs.
Identifying the types of support that will optimize the patients adherence to therapy.
Addressing the patients individual learning needs, including the importance of ART adherence
and the consequences of non-adherence.

Interventions after starting ART should also be individualized to include:

Ongoing education about the importance of medication adherence and consequences of non-
adherence.
Social support to improve adherence.
Use of reminders to take medications, such as medication charts or linking doses to daily living
patterns (e.g., eating breakfast in the a.m. and dinner in the p.m.).
Improved communication with healthcare workers.
Continuous reinforcement of adherence.

ii- Pre-ART Adherence Counselling

After the clinician has determined probable eligibility for ART and discussed treatment initiation, the
patient is referred to the Adherence Counselor for the first pre-ART Counselling session.

REMEMBER! BETTER RESULTS ARE REALISED WITH INDIVIDUALISED

COUNSELLING SESSIONS

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FIRST Counselling Session - INDIVIDUAL
1. Introduce yourself to the patient, giving your name and position.
2. Review information on the patients ART Enrolment Blue Card, gathering additional socio-
demographic data as needed.
3. Assess the patients knowledge of HIV, and how HIV affects the immune system
4. Educate on basics of HIV and correct misconceptions as needed:
HIV is a virus that attacks the immune system.
There are different routes of HIV transmission.
As the immune system weakens over time, opportunistic infections can occur.
Healthy living practices can strengthen the immune system (e.g., good nutrition, exercise,
rest, social support, positive attitude toward life).
5. Discuss ART
The goals of therapy: To suppress the virus and improve the immune system; it is not a cure.
The reasons for combination therapy.
The importance of adherence to the medication regime.
General side effects of ARVs and how to manage them
6. Identify, with the patients input, any difficulties or potential barriers to keeping medical
appointments, taking the medications and adhering to the medications. These difficulties may
be:
Personal: failure to disclose status; illiteracy
Environmental (e.g., transportation)
Social (support)
Health-related (physical or mental)
Related to substance use (alcohol, illicit drugs)
Nutritional
Financial
7. Discuss interventions to overcome these difficulties or barriers. Make referrals to care and
support services as necessary.
8. Schedule an appointment for the second Counselling session, to include a family member/friend
to whom the patient has disclosed his/her HIV-positive status and who will agree to attend the
remaining counselling sessions.

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9. Complete the appointment card and give to the patient.
10. Complete the Pre-ART Counselling Form and file it in the patients medical record.

SECOND Counselling session-INDIVIDUAL

1. Review the topics discussed during the previous Counselling session:
Basic facts about HIV/AIDS
ART and the importance of adherence
2. Discuss the role of social support in ART adherence: the role of the family member/friend.
3. Discuss the ARV treatment implications:
ART is not a cure.
ART does not prevent transmission of the virus: ongoing prevention is essential to avoid
both transmitting the virus to spouse/partner and re-infection.
ART has benefits, risks and side effects (how to manage).
As part of clinical follow-up, schedule medical visits, adherence monitoring visits and
laboratory investigations, including CD4 test.
4. Review barriers to adherence: Do they still exist? Are there new ones?
Personal: failure to disclose status; illiteracy
Environmental (e.g., transportation)
Social (support)
Health-related (physical or mental)
Related to substance use (alcohol, illicit drugs)
Nutritional
Financial
5. Define interventions to overcome remaining barriers to adherence.
6. Ask the patient if s/he has any questions or concerns.
7. Schedule the third Counselling session and complete the appointment card.
8. Complete the Pre-ART Counselling Form and file it in the patients medical record.

Third Counselling session-INDIVIDUAL (preferably with a treatment supporter)

The patient presents to the ART Adherence Counselor after meeting with the Clinician and
receiving the prescription for the ARV regime.

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1. Review the prescribed medication regime with the patient; show the patient a photo of each
medication using an ARV medication chart:
The name of each medication
The dose of each medication
The schedule of each medication: when the patient should take the drug
The food requirements of each medication
The need to take the medications together/in combination

2. Instruct the patient how to take the medications by swallowing each pill at the correct time with
a beverage, preferably a glass of water.
3. Emphasize the importance of 100 percent medication adherence. Ask the patient how s/he will
remember to take each dose of the medications. Together, identify strategies that will work for
this patient:
Role of support person: friends reminder
Pill diary
Pill chart

4. Caution the patient not to give the medications to anyone else; they are prescribed for her/him
only.
5. Discuss side effects of the drugs and how to manage them:
Identify side effects that usually pass in 2-6 weeks: describe how the patient can manage
these side effects at home.
Identify side effects that need to be reported to the HCC immediately.
Emphasize the importance of taking the medications despite the side effectsmost of them
do not last and can be managed.

6. Ask the patient if s/he has any questions or concerns about the medications, how to take them
or the possible side effects.
7. Discuss the role of the treatment supporter
8. Establish clients and treatment supporters commitment (by obtaining written consent)
9. Schedule an appointment for the patient to return in two weeks and assessment of medication
side effects; give the patient an appointment card.
10. Direct the patient to the pharmacy to obtain the medications.

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11. Complete the Pre-ART Counselling Form and file it in the patients medical record

ART Counselling session 1-14 days of ART medication hours after starting ART
1. Has the patient had any side effects? Please check which side effects:

Symptoms Yes No Symptoms Yes No

Cough Yes No Difficulty swallowing Yes No

Dyspnea on exertion Yes No Fat accumulations Yes No

Haemoptysis Yes No Headaches Yes No

Fever/chills Yes No Fatigue Yes No

Blood in urine Yes No Myalgia Yes No

Jaundice Yes No Paresthesia Yes No

Skin rash Yes No Pain (site:_________________) Yes No

Nausea Yes No Dizziness Yes No

Vomiting Yes No Insomnia Yes No

Diarrhea Yes No Abnormal dreams Yes No

Abdominal discomfort Yes No Anxiety/depression Yes No

Right quadrant pain Yes No Mental changes (cognitive acuity) Yes No

Other: ______________________ Yes No Other: _______________________ Yes No

2. Refer to doctor/clinician if the side effect(s) is (are) not being managed at home and is (are)
interfering with the patients quality of life and medication adherence.
3. Assess medication adherence:
Discuss the patients experience with the medications.
Identify any difficulties reported by the patient in taking the medications.
Develop strategies to manage these difficulties and achieve adherence.
Consider observations offered by the patients family member/friend.

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4. Report any serious difficulties with adherence or concerns about the patients commitment to
ART to the clinician/prescriber.
5. Review each medication: name, dose, schedule, possible side effects and how to manage them.
6. Discuss importance of 100 percent adherence to the medications.
7. Provide support and encouragement and instruct the patient to report any serious adverse
effects to the pharmacy team; if these occur as an emergency, instruct the patient to immediately
see the clinician for assessment and management or go to the emergency room if the clinic is
closed.
8. Discuss ongoing prevention and risks of HIV transmission while on ART.
9. For families where more than one member is HIV infected but only one is eligible for ART,
explain the dangers of sharing the medications with the other infected members (for example,
the spouse or child) or friends.

10. Ask the patient if s/he has any questions or concerns.

11. If the patient has no difficulties with medication adherence: schedule the next Counselling visit
on the same day as the patients next visit with the clinician (two weeks after starting ART).
12. If the patient is having difficulties taking the ARVs and is not adhering: discuss strategies to
overcome the barriers and schedule a visit for intensive follow-up within the next 48 hours.
13. Document the session in the ART Adherence Counselling Form.

Continuous ART Adherence Counselling/Monitoring (preferably monthly)

The patient will meet with the ART Adherence Counselor after the patients medical visit according
to the following schedule:
First month: after 2 weeks of medication
After the first month: Monthly for 6 months
After 6 months: as determined by the clinician; can be monthly, two or three monthly

The patient will report to the clinic for the scheduled appointment. If the patient is "stable" on ART,
meaning:
Does not have side effects from the medications or has well-managed side effects; and
Is strongly adherent with the medications, defined as not missing one ARV dose since the
previous visit . . .

16
 The Triage Nurse will complete a rapid assessment of the patients status and refer client to
the Adherence Counselor whenever medication non-adherence or difficulties taking the
ARVs are assessed; or refer the client to the Refill Nurse for ARV refills. In this case the
client may not need to see the clinician.
If the patient has side effects or is experiencing symptoms, the client is referred to the
Clinician for assessment.
More frequent visits will be scheduled if the patient develops symptoms or experiences
difficulties adhering to the medications. Assessment notes will be included in the Form for
the Medical Follow-Up of Patients on ART and the ART Adherence Counselling Form
[HIV Care/ART Card], which are retained in the patients medical record.

At each visit, the ART Adherence Counselor will:

1. Assess the patients adherence to the medications.
2. Identify side effects and refer to the clinician for management, if needed.
3. Discuss with the patient obstacles or barriers to adherence and strategies to overcome them.
4. Encourage the patient to continue adhering to the medication regime.
5. Emphasize the importance of ongoing prevention to reduce the risk of HIV transmission or
re-infection with the virus.
6. Explain the dangers of sharing ARVs with other HIV-infected family members or friends.
7. Answer the patients questions and respond to her/his concerns.
8. Refer the patient to care and support services to meet her/his needs for medical care,
psychosocial support, socioeconomic support or human rights/legal support.
9. Complete the ART Adherence Counselling Form and file it in the patients medical record.

Adherence Counselling for Children on ART

A. Challenges in delivering ART to children
Several factors increase the burden of administering ARVs to children:
1. The dosage of ARV drugs is prescribed based on the weight of the child. For some ARVs (e.g.,
Zidovudine), the dosage is related to body surface area. As the child grows, the dose of each
drug must be re-calculated to assure optimal treatment.
2. Liquid formulations are required for infants and children who are unable to swallow
tablets/capsules.

17
 - Not all ARVs are provided in liquid formulations.
- Caregivers must learn how to accurately measure liquid formulations (for example, using a
syringe).
- Some liquid formulations have a bitter taste and are not palatable to children.
3. Multiple family stressors may impact the caregivers ability to administer ARVs consistently to a
child: the caregiver may be HIV-infected; there may be multiple HIV-infected members in the
household; the family may be in poverty; substance abuse may be affecting the household.
4. Not disclosing a child's HIV infection to the child can impact medication adherence. Explaining
the importance of adherence is difficult if the child does not understand why s/he is taking the
medications. Disclosure of HIV infection must be linked to the developmental level and
maturity of the child.
In general, by age seven, children can understand a relationship between illness and
taking medications on a regular basis. However, each childs level of development and
maturity is the primary factor determining the appropriate time for disclosure and the
childs role in taking medications.
As the child gets older, s/he is able to assume a more responsible role in taking
medications, and the role of the caregiver changes to more generalized supervision.
5. Social disclosure of HIV infection (i.e., disclosing the childs status to other people) is an
individualized process related to the caregivers and family understands of HIV disease and level of
concern regarding stigma and discrimination. Counselling can assist the child, caregiver and, as
appropriate, other family members with issues of social disclosure, including key developments in
the childs life, such as entrance into school and sexual development.
6. Limitations in adherence measurement are more pronounced with children. A pill count, for
example, is inappropriate when liquid formulations are used.

B. Strategies to promote adherence with children

1. Adapting treatment to the familys routine and, as the child grows, to the childs routine,
can help achieve high levels of medication adherence. For example, a twice-a-day
medication schedule for a child in school can be associated with one pre-school dose in
the morning and one bedtime dose in the evening.
2. When a child's ART regimen is changed, intensive adherence Counselling helps the
caregiver(s) develop confidence in administering the medications correctly. For both

18
 liquid and pill formulations, the Adherence Counselor can reinforce the caregiver's
knowledge and skills by, during at least three sessions, demonstrating the administration
of each medication and observing return demonstration by the caregiver. A review of
the dose, schedule and techniques for administering each medication to the child should
occur at each follow-up clinical visit.

3. Regularity of the childs and caregivers visits to the health provider is essential for
adjustment of medication dosages as the child grows and increases in weight and body
area. Adherence supporters and home care workers can assist by reminding caregivers of
the importance of regular clinical visits for the child and, more intensive support (for
example, taking the child to a clinical visit when the caregiver is working).

19
5.0 Adherence Indicators

20
INDICATOR INDICATOR DEFINITION Rationale / Notes Source of Data Frequency Strengths
(measurement of and
tools and how to Collection limitations of
measure the the indicator
indicator)
Narrative Numerical
Numerator Denominator Target
The number of days The number of days of stock The number of Thirty days Zero days of - This indicator measures - Drug inventory / Monthly / - This is part
the health facility outs for ARVs in the last one days of stock outs stock outs for whether stock outs of ARVs supplies records quarterly / of tracking
experienced stock outs month for ARVs in the any ARV occur in the facility in the last one - ART system for
for any ARVs in the last last one month medication month. programme ARVs. This is
one month (thirty days) i.e. the health facility has not reports one of the
managed its ARV stock well - A stock out is defined as the - Patient drug
enough as to have no stock complete absence of a Database resistance
outs or the need to make required drug in the health (Chronic Care) early warning
emergency requests in the facility for at least one day indicators
last thirty days / one month
- This is one of the drug
resistance early warning
indicators
No of Health workers Health professionals in the Absolute number; Total number of This indicator measures the - Personnel - Quarterly
trained in adherence health facility trained or no need for health professionals availability of health records - Annually Limitations:
counselling and support retrained in Adherence numerator in the health facility professionals for adherence - HRH reports Adherence
counselling in accordance trained or retrained counselling in the health facility. - Health facility training
with national / international in adherence It includes assorted cadre of staff reports curriculum not
standards. The staff are counselling in (both clinical and non-clinical) - ART yet developed
disaggregated by cadre accordance with Programme
national standards Trained HRH for ART is critical reports
for success of ART programmes. - Training
reports
% of clients who attended Number of Number of This indicator measures whether Data base Annual It need proper
all appointments during individuals who individuals started adequate adherence support has filling of the
the last 12 months kept all ART during one been given to patient hence re- ART card
appointments in quarter of the fills not missed
the first year of previous year
ART until the time
80%
they were
classified as lost
to follow-up, dead,
transferred out, or
stopped ART

21
Proportion of clients Clients on ART All clients on ART This indicator measure the levels ART card quarterly Need pill
attaining 95% adherence attaining at least of adherence count as a
levels in the last 3 months 95% adherence method of
levels 100% adherence
Needs
accuracy of
the reports
Proportion of patients Counselling needs to have No of patients No of patients This indicator measures the ART ART card Quarterly Needs good
with at least 3 counselling been done by trained with at least 3 initiating on ART initiation record
sessions before ART personnel according to counselling in the past 3 keeping
initiation in the past 3 national guidelines sessions before months 80%
months ART initiation in
the past 3
months
Proportion of patients Care take empowerment is No. of patients No of patients This indicator measures the ART cards Quarterly Needs good
initiated on ART with a one of the strategies for initiated on ART initiating on ART level of adherence support give record
treatment supporter improving patient adherence with a treatment in the past 3 to patients by the community keeping
and each patient is expected supporter in the months 80%
to identify a treatment past 3 months
supporter r before ART
initiation
No of adherence site This should be held monthly No of meetings 3 meetings The indicator tracks site Minutes of quarterly
team meetings in the last held on the last 100% meetings held meetings
one quarter quarter
Use of Standard Health facilities providing Number health All MOH accredited ART is a lifelong treatment. - HIV Programme Quarterly/ MOH should
adherence measurement ART may measure patient facilities in the ART service Therefore, feasible and reports Annually standardize
methods adherence using any two of district using two providing health measurable approaches for - ART register adherence
the following: standard ART- facilities in the enhancing adherence should be - Facility measurement
Percentage of health adherence health facility instituted. management methods as
workers in the health - pill counting measurement reports currently there
facility using two standard - Self report methods - Health Facility is no list of
ART-adherence - Monthly refill tracking survey reports adherence
measurement methods - Drug adherence measurement
calendars methods
- Visual Analogue Scale 100% standardized /
adapted to
A health facility is using Uganda.
standardized methods for Tool(s) may
measuring adherence IF all have to be
providers of HIV/AIDS developed for
services at that facility are recording
using at least two of the adherence
same method to measure measurement
adherence of all patients methods each
facility uses.
No of adherence inter-site Inter-site coordination
coordination meetings meetings are held quarterly
and are held at regional level

22
No of facilities involving
expert clients for positive
living to enhance
adherence
Proportion of HIV positive
clients on ART 15 years
who have disclosed to
least one family member
Cumulative no of
children aged 7 < 10
years who have been
disclosed to in the last
one year
No of health facilities that
have co-opted at least one
expert client in their
quality improvement
teams
No of clients on ART that
have set personal goals
for adherence
No of ART facilities with
established linkages to
schools
Need to give
guidance to
the sites on
this
Cumulative no of Cumulative no of Surveys Annual
Children 7-10 Children 7-10 years
years who are on who are on ART at
ART at the end of the end of the last
the last reporting reporting period
period who know
their status
Need to give
guidance to
the sites on
this
Its desirable that following
adequate counselling and
information giving, the client
sets personal goals for ART
including adherence
23
Appendix 1: List of Participants in the Stakeholders Workshop
Dr. Ario Alex Riolexus - STD/ACP Ministry of Health
Dr. Balidawa Hudson - STD/ACP Ministry of Health
Dr. Banage Flora - CDC
Dr. Elyanu Peter - STD/ACP Ministry of Health
Dr. Esiru Godfrey - STD/ACP Ministry of Health
Dr. Ikoona Eric - STD/ACP Ministry of Health
Dr. Kansiime Edgar - STD/ACP Ministry of Health
Dr. Kayita Godfrey - STD/ACP Ministry of Health
Dr. Kerchan Patrick - UPMB
Dr. Kirunda Ibrahim - STAR-SW
Dr. Muhwezi Augustin - SUSTAIN
Dr. Namagala Elizabeth - STD/ACP Ministry of Health
Dr. Namayanja Grace - CDC
Dr. Namukanja Phoebe - Mildmay Uganda
Dr. Tumbu Paul - Baylor Uganda
Dr. Tumuhairwe David - STAR-EC
Dr. Twetegire Ben - SUSTAIN
Dr. Twinomugisha Albert - Reach Out Mbuya
Mr. Kawooya Vincent - Infectious Diseases Institute
Mr. Kibuuka Moses - Kidera HC IV
Mr. Lukwata Authman - Mengo Hospital
Mr. Lwasa Phillip - Mengo Hospital
Mr. Muhindo Richard - CDC Fellow MoH
Mr. Rwabu Davies - Intern ACP
Mr. Ssemogerere Hamza - Ministry of Health
Mr. Ssendiwala Julius - STD/ACP Ministry of Health
Ms. Abuze Judith - Kamuli Hospital
Ms. Amojong E. Okongo - Kiyunga HC IV
Ms. Arica Juliet - NUMAT
Ms. Babirye Florence - Nankoma HC IV
Ms. Babita Florence - Bumahya HC IV
Ms. Basia Margaret - STD/ACP Ministry of Health
Ms. Cherop Toskin - Kigandalo HC IV
Ms. Kasirye M. Margaret - Mildmay Uganda
Ms. Kasoga Idah - Buyinja HC IV
Ms. Mbonye Promise - STD/ACP Ministry of Health
Ms. Musisi Rostte - Iganga Hospital
Ms. Nabaganda Fatumah - AHF/Uganda Cares Kalisizo
Ms. Nakazzi Fatuma - AHF/Uganda Cares Masaka
Ms. Namanya Christine - Mulago Hospital
Ms. Nampala Florence - STD/ACP Ministry of Health
Ms. Natocho Edith Jesca - Namutumba HC III

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Appendix 2: Paediatric ART Counselling Standard Checklist

Paediatric ART Counselling Standard Checklist

Childs Name:..Age:Gender (M/F):.
Child ID No:.Date of HIV Diagnosis:CD4 Level:
Name of caregiver:..Relationship:..
The 5 As in treatment preparedness are ASSESS, ASSIST, ADVISE, ARRANGE and AGREE.
Assess Yes No Comment
Confirmatory HIV test report
The child and caregivers knowledge and understanding of
HIV and AIDS
The child and caregivers knowledge and understanding of
HIV treatment
The childs knowledge of his/her serostatus( disclosure and
acceptance of diagnosis)
Social support system
Potential barriers to adherence ( emotional stability of the child
and caregiver, living conditions, financial status, food habbits
and daily routines, multiple caregivers and frequent change of
caregivers,etc
ASSIST in planning for Treatment & Adherence Yes No Comment
Disclosing HIV status to the child1
Extend support in developing a treatment and adherence plan
Plan follow-up sessions after initiation of treatment

ADVISE Yes No Comment

Provide advice on the treatment and its implications
emphasize that ART is not a cure
explain the side-effects of ARV medicines
discuss the lifelong commitment for adherence to ART.
Explain the ART regimen prescribed and how the drugs work
including

1
Process commenced from age 7(National HCT Policy,MoH/ACP 2010)

25
 importance of adherence
importance of regular follow up
availability/possibility of home-based care, treatment of OIs
and side-effects
Importance of diet, nutrition and hygiene.
ARRANGE Yes No Comment
Children and caregivers do not know the hospital procedures
for investigations and where to go for this. The counsellor
should arrange for
medical investigations such as a CD4 count and other blood
tests before treatment
referrals to other agencies within and outside of the hospital,
e.g. NGO/CBO/ CCC sociolegal services, etc.
AGREE on the treatment and adherence plan Yes No Comment
Caregivers and children should agree with the ART team
to disclose the HIV status (if not already done)
to the treatment plan
to come for regular follow up
to be 100% adherent to treatment.

Counsellors Summary:
What are the main issues discussed today?
Is their commitment to ART adherence? Yes No
If yes, what makes you think so?
What are the identified barriers to good adherence?
What are the follow up action points?

Todays date:.Date of Next Review:..

Counselors name:.signature:

26
Appendix 3: Adherence Best Practices

a- Mildmay Uganda
In order to facilitate adherence to ART, Mildmay has considered measures to improve clients access
to their ART, improve their knowledge of HIV / ART and through the Family Centred approach
care for whole families. The use of Electronic databases has been strength in Monitoring ART
adherence.

Access; Clients have been clustered into locations and satellite distribution points (at MOH centres)
established for easy access to reviews (stable clients), bleeding for CD4 counts and drug refills.
Representation (on two consecutive visits) of adult clients for drug refills is permitted to avoid
clients missing doses. All ART and OI treatment is free, leaving the client with transport costs only.

Knowledge: Clients knowledge is updated daily at waiting areas using IEC materials that are
tailored to needs of different audiences. Education consultants have participated in the design of the
materials. Knowledge gained is supported by issue of pill boxes and Telephone follow up of missed
appointments and defaulters.
Testing of all household members is encouraged and home-based HCT is often done for families
who cannot easily come to the centre in order to establish support for the client identified in a
particular household.
The availability and use of electronic databases has aided follow up of missed appointments,
establishing actual number of clients scheduled/ on appointment and actual Adherence levels.
Weekly inter-disciplinary team meetings are held to discuss difficult adherence cases.

Lessons: Working with various satellite clinics to improve access has benefited the Health workers
there in term of building capacity.
There is need for uniform communication of all team members in order to achieve good adherence
levels.

b- Baylor Uganda
Baylor Uganda implements peer to peer strategy aimed at improving the adherence to ART by
adolescent clients. This strategy is done by all adolescents being arranged in groups according to
their age groups with the 12-18 years separated from the group of 18 years and above. In this
meeting we encourage the adolescents to open up and share their experiences since they initiated
and those with success stories are particularly encouraged to discuss them with the peers who are
not adherence and they come up with workable solutions to help the non- adhering colleagues. It is
usually done on Saturdays after the caretakers have been sensitized to allow and facilitate their
children to come and share this important information about adherence. This helps to capture even
those who are in school. For those in boarding schools they are encouraged to attend at least one
during their holiday time. This strategy has greatly improved the morale of adolescents to adhere
when they get information from their peers.

Among other things discussed during these meetings include:

1. Information required to explore the myths about ART (Remembering that adolescents are
informed and also discuss with their peers)
2. Give them a tool to read (PLAN D) (Because when they do it themselves they own it, it
cease to be dos and donts imparted on them)

27
 3. Encouraging them to bring pills on every visit for counting
4. Making a plan with them for example those in boarding school to disclose and involve the
school nurses and matrons to administer or remind them to take drugs ( to agree on
convenient time)
5. Discussing with them their CD4s let them assess the adherence themselves and if dropping
they accept that they are the ones to take it upon themselves to adjust/improve, Why? They
know where they go wrong
6. Health Education of showing them heaps of defaulted pill balances
7. Understanding/appreciating their challenges, listening to them other than blaming
8. Home visiting also creates in them a sense of responsibility in that they fear that they will be
found out if they do not adhere (though not all appreciate this)

Besides all this, Baylor Uganda also holds a care takers meeting once every quarter to try and address
adherence challenges. Caretakers meeting gives health workers and the caretakers an opportunity to
share the challenges in the absence of the adolescents and each individual comes up with a strategy
to support the adolescents

With these strategies done together we have experienced a significant improvement in the
adolescent groups although a lot still needs to be done to build their confidence in adherence as they
fight stigma.

c- TASO
TASO started providing ARVs in 2004. At the beginning, ART assessment, ART Initiation, and
refills were being done at the facility. Shortly after initiation it was noticed that many clients were not
coming back for subsequent drug refills and follow up was difficult as the number of clients on ART
was growing. This was resulting into poor adherence. The biggest challenge expressed by clients
then was lack of money for transport to continue coming for the drugs (ARVs) as per appointments.
This prompted TASO to think about new approaches to address the challenges expressed by the
clients.

Home based care model:

This is a health service delivery model practiced by TASO Uganda. It involves a community nurse
who is linked to field officers and community volunteers who visit the HIV positive patients who
may be bed ridden. During home visits relatives/home caregivers are provided with information by
TASO trained community volunteer nurses or TASO staff. The home caregivers have adequate
basic knowledge to be able to provide home nursing and emergency care. The community workers
offer support to home-caregivers by providing simple nursing care and first aid and referrals to
bedridden clients. The family members of the patient are offered VCT and if there is any HIV
positive member identified, they are linked to care. Monthly visits of clients with who are dispensed
medications and monitor them with a clinical checklist of the signs and symptoms of drug toxicity
and disease progression. When patients are sick telephone calls are made to physicians who assess
the need for further referral. The medical officer reviews the field officers' notes for the patient
visited.
Patients are seen at the clinic for medical reviews with the medical officer and counselor at two and
six months after initiating ART and every six months thereafter for a CD4 count. This model has
facilitated disclosure among partners and improved adherence to ART.

28
Home to home delivery Model: A new model of drug delivery was born. This required riding
from one home of a client to another to assess adherence, give adherence counselling and deliver the
drugs to clients in their homes. Drugs are delivered by staff called Field Officers, who are either
social workers or teachers. These were trained in counselling, HIV care, ART and trained to ride
motorcycles. This is the team that delivers drugs to clients homes. In a way this was the beginning
of task shifting because the clients would receive drugs from social worker who is equipped with
information about ARVs as opposed to a Pharmacy technician at the facility. The social workers
were also trained to assess for side effects of drugs and refer any suspicious cases to either TASO or
the nearest health unit for further assessment by medical personnel. There is a clinical officer who
provides support supervision to the Field Officers.

CDDP Model: As the number of clients enrolled on ART kept growing, it became very expensive
and labour intensive to refill clients at their homes because the homes are scattered across a sub
county. At this point the idea of identifying clients from a common locality who can be refilled at
the same point was born. Clients who come from a common locality were identified and sensitised
about the idea. The clients identified a common point with easy access to all of them where the field
officer can find them on a particular day and give them a health talk, address some of their
challenges, provide drug refills and give them the next appointment date for drug refill.

To enhance the groups, each group was told to identify one person among them who is the leader of
the group and was adhering well on drugs (Expert client) and this person was called a Community
ART Support Agent (CASA). The roles of the CASA were identified that include mobilising other
clients in the group to come to the CDDPs, home visiting fellow clients and support those with
challenges or report to the Field Officer in charge of that group among others. The CASAs were
given basic counselling Skills and a facilitated with a bicycle each to ease movements during home
visiting. Each group of clients (CDDPs) is about 20-30 clients and only clients who are willing to get
refills from the community are allocated CDDPs.

The clients are refilled on a two monthly basis and follow up is done every 6 months. There is a
program made that shows the date at which routine follow is done i.e. CD4 bleeding, HB, HCG,
weight and assessment for any OIs which are a must at 6 months review and this is done in the
community by a clinician on the same day of refill. Clients are sent to the CDDPs after they have on
ARVS for a minimum of ten weeks and after the clinician and counsellor have assessed the client
and confirmed that he/she is stable at this point.

Advantages of CDDPs
To clients;
Reduced the time they have to travel to the facility for their drugs
It has cut down on their costs of travel
Promoted adherence because they always get their drugs on time, they are followed up by a
CASA, and they interface with a field officer who is also a counsellor on regular basis
It has enhanced disclosure of HIV Status in the community
Clients are able to fellowship together and support each other in the group
Enhanced follow up of clients since they know each other
Clients who are bed ridden are reported by the CASA, or fellow client and a home visit is
done to assess them.

29
To the staff and Organisations
Its less labour intensive
It gives the clinicians and counsellors time to concentrate more on the clients that are about
to begin or have just been started on drugs
It has greatly decongested the facility clinics and given an opportunity to staff to provide
quality care to manageable numbers of clients
Its cheaper than the home to home delivery of drugs
The clients keep their appointments because if they miss the appointment day at the CDDP,
then they have to travel to the facility

At the CDDP, all clients on ART including those who receive their drugs from partners are allowed
to attend the health education sessions and listen to other clients experiences at the CDDPs.

d- Infectious Diseases Institute

The Infectious Diseases Institute (IDI) is a capacity building, care and research non-for profit
organization that provides comprehensive HIV/AIDS care and treatment services. IDI uses the
following innovative, evidence -based approaches to enhance ART adherence; antiretroviral therapy-
eligible clients receive three structured pre-ART counseling sessions (group general, group specific
and individual with treatment supporter/medicine companion) and regular (6-monthly) follow-up
booster-counseling sessions. Counselors contract prior to seconding them to the medical officer
(doctor) for ART initiation. The pharmacy team ensures that clients are aware of the kind of ARVs
that have been prescribed and that they understand the potential side effects of these drugs before
they dispense these to the clients.

The IDI has invested in an electronic system that generates a list of clients due for ART initiation,
scheduled appointments, and clients failing ART. A weekly regimen switches committee that
discusses and addresses both clinical and psycho-social drivers of treatment failure consider 2-3
clients who are deemed to be failing on ART. The counsellors document causes of missed
appointments and clients files have follow-up appointment stickers. IDI utilizes expert clients (who
are on ART themselves) to reach out and support other clients who have challenges adhering to
treatment.

There is an active client referral transfer system to IDI-supported satellite clinics with the Kampala
City Council Authority (KCCA). IDI operates a transition clinic for young adults including peer
support groups that address disclosure, sexual and reproductive health, life negotiation and
transition and positive living. Additionally, discordant couples peer support meetings are held
regularly to address HIV prevention, coping strategies and other support systems for such couples.

e- Reach Out Mbuya

Reach Out Mbuya HIV/AIDS Initiative (ROM) is a Community Faith-Based private not for profit
Nongovernmental organization that was founded in 2001 to provide HIV/AIDS care to persons
living with HIV/AIDS (PHA) among the urban poor living within the service area of Mbuya
Catholic Parish (Mbuya, Kinawataka and Banda) and also in Kasaala Luwero district. With the vision
of having a community free of the spread of HIV where those persons already infected and affected
by HIV and AIDS are living positively with an improved quality of life, ROM provides

30
comprehensive HIV/AIDS services to people living with and affected by HIV&AIDS using the
community model of care with the community supporters and expert clients.

The utilization of the community ARV-TB treatment supporters (CATTS) to follow up the clients
both at their homes and within the communities has improved adherence greatly with 90% of the
2328 clients on ART having an adherence level of greater than 95% and with less than 5% of the
scheduled clients missing their appointments for period of 2010.

The Mother to Mother Community (M2M) supporters who are themselves expert clients are the
cornerstone of the PMTCT program who follow-up the mothers and exposed infants both at home
and in the communities. The M2M are empowered with knowledge in the aspect of MTCT which is
complemented with the experience they have gone through and all this has made them the right
people to follow up the mothers and infants and are fully dedicated to their work. We have managed
to have 3% MTCT rate in 2010 with no lost to follow up of all mothers who were enrolled in the
program.

The use of the peer based approach has helped to strengthen patient follow up with close to 53% of
staff at ROM being HIV clients themselves , has improved the home based care and pastoral care
we provide to the clients. The teenage and adolescent community supporters together with the social
support section are very key in the care of the adolescents who face a number of challenges during
this stage of life. With this approach we have learnt that involvement of PLHIV helps them to own
the program, the peer to peer follow up has greatly improved adherence to treatment and improved
treatment outcomes. The use of the holistic (Body, mind, community, family) approach has also
improved adherence, facilitated disclosure, improved quality of life and promoted positive living.
The mode of operation within a specific catchment area much as is very good for proper patient
follow-up in the community has limitation to scale up which can be done only by widening the
catchment area, and the mobile urban communities would eventually miss out on these services
once they move out of the area of operation though they are linked to other service providers. It is
with this community peer based approach that ROM will strive to achieve its vision of having a
community free of the spread of HIV where those persons already infected and affected by HIV
and AIDS are living positively with an improved quality of life.

31
References

1. ACP/MOH(January 2011) National Guidelines on Antiretroviral Therapy, Prevention of

Mother to Child Transmission of HIV and on Infant & Young Child Feeding
2. UNAIDS (2010) 'UNAIDS report on the global AIDS epidemic
3. Government of Uganda (2010, March) 'UNGASS country progress report: Uganda'
4. UNAIDS, Uganda AIDS Commission (2009, March) 'Uganda: HIV prevention response and
modes of transmission analysis'
5. World Health Organisation, Adherence to long term therapies: Evidence for Action. 2003:27-32

32