A Text-Based Adherence Game for Young People Living With HIV in Ghana
Phase: NA
Conditions: HIV/AIDS, Medication Adherence
Sponsor: Rhode Island Hospital

COVER PAGE 
Official Title: A Text-Based Adherence 
Game for Young People Living with HIV 
in Ghana 
NCT #: 1227391 
Document Date: March 11, 2021 
Document: Protocol 

Version 2 11.3.21 
 
1 
 
EXECUTIVE SUMMARY 
• This study is funded by the National Institute of Mental Health (USA). It as a K23 
Patient-Oriented Career Development Award received by Rhode Island Hospital 
(USA) to support the research described in this protocol and the training and 
career development activities of Dr. Nicholas Tarantino. Grant#: K23 MH114632. 
 
• Dr. Betty Norman will serve as PI on the project alongside Dr. Anthony Enimil 
(Co-PI) and Dr. Tarantino (Co-PI). Drs. Enimil and Norman are medical doctors 
and researchers at the HIV Clinic of the Komfo Anokye Teaching Hospital 
(KATH) and faculty at the Kwame Nkrumah University of Science and 
Technology. Dr. Tarantino is a clinical psychologist and researcher at Rhode 
Island Hospital and the Alpert Medical School of Brown University (USA). 
 
• The four-year study will develop a novel text message intervention for young 
people living with HIV, ages 18 to 24, who receive care at the KATH HIV Clinic. 
The intervention will be designed to help improve their adherence to HIV care 
(e.g., antiretroviral adherence). More so than other age groups, young people 
living with HIV are at risk for adherence problems and secondary HIV 
transmission. 
 
• This is a pilot study focused on intervention development and testing the 
feasibility and preliminary efficacy of the text message intervention.  
 
• The long-term goals of the project include: 
o Improve the health and well-being of young people living with HIV in 
Ghana and other countries in the region. 
o Use pilot data gathered from the study to apply for additional funding 
which could support a larger scale randomized controlled trial of the text 
message intervention. 
o Strengthen existing academic collaborations between US and Ghana-based 
research teams. 

Version 2 11.3.21 
 
2 
 
TITLE PAGE 
Title of Protocol: A Text-Based Adherence Game for Young People Living with HIV  
 
PI: Dr Betty Norman, MBChB, DPDM, DTMH, FWACP, Department of Medicine, 
KATH. P. O. Box 1934, Kumasi. Ghana, West Africa, 233207064699, 
branorman@yahoo.com 
 
Co-PI: Dr Anthony Enimil, MBChB, DPDM, FGCP, FWACP, Department of Paediatrics, 
KATH. P. O. Box 1934, Kumasi. Ghana, West Africa, 233208164433, tenimil@live.com 
 
Co-PI: Dr Nicholas Tarantino, PhD, Bradley/Hasbro Children’s Research Center, 
Rhode Island Hospital, 1 Hoppin Street, Coro West, Suite 204, Providence, Rhode 
Island, 02903, USA +1 (401) 793-8706, nicholas_tarantino@brown.edu 
 
Prior Scientific Review: No prior review conducted.  
 
Prior Ethical and Protocol Review: Part of the development phase of this study has 
been approved by the Rhode Island Hospital Institutional Review Board, Providence, 
Rhode Island, USA.  
 
Collaborating Institutions: The prime institution for this project is Rhode Island 
Hospital (RIH), Dr. Tarantino’s employer. The other institution is the Kwame Nkrumah 
Institute of Science and Technology (KNUST) with the research site at the Komfo 
Anokye Teaching Hospital (KATH).   
 
Source of Funding: National Institute of Mental Health, USA 
 
 
 
 
 
 

Version 2 11.3.21 
 
3 
 
STRUCTURED ABSTRACT 
Background: Optimal adherence to HIV treatment is a major challenge, and 
nonadherence is associated with heightened risks for secondary HIV transmission and 
poor health outcomes. In sub-Saharan Africa, an estimated one in three patients do not 
take antiretroviral therapy (ART) as prescribed and one in four disengage from 
treatment within a year of initiating ART. Adherence outcomes are even worse among 
older adolescents and young adults (young people) living with HIV (YPLH).  General 
Aim: The current project aims to develop and evaluate a novel mobile health (mHealth), 
game-based intervention tailored for young people to promote their adherence to HIV 
care.  Methodology: Enrolment of participants in two project phases (Development 
Phase and Randomized Pilot Phase) will occur at the Komfo Anokye Teaching Hospital’s 
HIV Clinic. The Development Phase involves working with an mHealth development 
firm to create an initial prototype of a Text-Based Adherence Game intervention, 
recruiting YPLH for a youth advisory group to gain feedback on the proposed 
intervention, and conducting an iterative open trial of the intervention with YPLH (n = 
24). The Randomized Pilot Phase will involve evaluating the intervention for feasibility 
and preliminary efficacy with a small randomized pilot examining biobehavioral 
adherence outcomes over one year in a sample of YPLH who receive the Text-Based 
Adherence Game versus YPLH who receive the standard of care (n = 60). Quantitative 
survey assessments as well as chart review of relevant health information will be 
conducted at three time points over the course of the year to examine differences in 
biobehavioral adherence outcomes between intervention and control participants. 
Expected Outcome: First, we expect that our mHealth intervention will be relevant, 
useful, and appropriately-tailored for YPLH. Second, we expect to show preliminary 
evidence that the intervention improves adherence outcomes among YPLH.  
 
 
 
 
 
 
 

Version 2 11.3.21 
 
4 
 
BACKGROUND 
Older adolescents and young adults (young people) living with HIV (YPLH) 
account for nearly 40% of all new infections in sub-Saharan Africa (SSA) (1).  Compared 
to any other age group, they are at the highest risk for antiretroviral therapy (ART) 
nonadherence, treatment attrition, and viral non-suppression (2, 3).  Most efforts to 
address adherence in the SSA have targeted middle-aged adults. However, YPLH face 
unique developmental barriers to adherence. This includes becoming increasingly 
responsible for their own healthcare and being unprepared for the new social and 
cognitive demands of treatment self-management. Given these challenges, it is not 
surprising that the transition from pediatric to adult HIV services is associated with a 
decline in young people’s engagement in HIV medical care (4). 
Problem Statement: Problems with adhering to care coupled with a normative 
increase in sexual activity during early adulthood may be partly responsible for a rise in 
new HIV infections among young adults in the SSA country of Ghana (5). Unfortunately, 
existing interventions do not account for young people’s unique barriers and facilitators 
associated with optimal adherence. New approaches are therefore needed to improve 
adherence outcomes among YPLH. 
Modern mobile health (mHealth) strategies designed to improve adherence are 
currently not feasible for low-resource settings. This includes theory-driven mobile 
applications that use gamification—defined as the use of game design elements in non-
game contexts (6)—where real-life adherence behaviors are combined with interesting 
storylines in an electronic game used to engage YPLH(7). Web and smartphone access is 
limited in SSA, yet traditional cellphones and text messaging are near universal. This 
has led to text message adherence interventions that send reminders, offer counseling 
support, and give greater access to HIV treatment services (8). None, however, have 
been enhanced with gamification or story-driven messaging.  
The current study will develop a novel gamified adherence intervention for use 
with existing text message services in Ghana. Grounded in Social Action Theory (9) and 
gamification principles (10), it aims to improve adherence to care among YPLH in a way 
that is easily accessed, sustainable over time, and readily scaled and adapted to local 
contexts. Such an approach is untested but possible to implement. The intervention 
relies on an automated text message system (11) to deliver a Text-Based Adherence 

Version 2 11.3.21 
 
5 
 
Game. The game will consist of health promoting text message interactions and a 
progression of culturally informed story messages.   
Hypothesis. The central premise guiding this work is that a Text-Based 
Adherence Game is a feasible and potentially effective strategy to engage YPLH in HIV 
care.  The overarching hypothesis of the study is that by improving adherence to care, a 
gap in the HIV care cascade will be filled and rates of new infections will decline due to 
widespread viral suppression and an associated drop in risk for HIV transmission. 
General Aim. Develop and evaluate an mHealth intervention that is youth-
specific, text message-based, enhanced with gamification, and designed to promote HIV 
treatment adherence among YPLH in Ghana.  
Specific Aims:  
1. Develop a Text-Based Adherence Game to promote adherence to care by: (a) 
devising a game prototype which integrates culturally informed content, Social Action 
Theory, and gamification strategies (e.g., competition, achievements, and social 
interaction) via consultation with an established mHealth developer and a youth 
advisory group, and (b) conducting a 30-week iterative open trial of the prototype with 
YPLH (n = 24) to refine the intervention.  
2. Evaluate the intervention for feasibility and preliminary efficacy with a 
randomized controlled pilot (n = 60) comparing YPLH who receive the Text-Based 
Adherence Game to YPLH who receive the standard of care on biobehavioral outcomes 
(i.e., ART adherence, HIV clinic attendance, viral load) over the course of 12-months.  
Literature Review. Nonadherence to HIV treatment among people living with 
HIV in sub-Saharan Africa (SSA) is widespread, particularly young people.  A meta-
analysis found that 33% of all patients do not achieve ≥ 90% antiretroviral therapy 
(ART) adherence (12). Moreover, an estimated one in four are lost to follow-up within a 
year of initiating ART(13). Young people (aged ~18-24) living with HIV (YPLH) have the 
highest risk for ART nonadherence (14) and treatment attrition when compared to older 
adults (2, 3, 14, 15) and younger adolescents and children (2, 14, 15).  Consequently, 
YPLH’s rate of virologic failure is also higher than other age groups (14), which leads to 
a greater risk for HIV transmission, AIDS-defining illnesses, and death.  
YPLH in SSA face a host of developmental barriers to adherence. Youth strive for 
personal agency yet are subject to conflicting societal expectations, which, in many 

Version 2 11.3.21 
 
6 
 
African settings, involves the cultural value of social interdependence (16). Problems 
overcoming this transition delays adult role taking (17).  Some YPLH have long relied on 
HIV care support from others and face an even harder transition to adult roles and 
responsibilities including treatment self-management. The poor adherence outcomes of 
youth who move from pediatric to adult HIV services evidences this claim (18). 
Moreover, the normative process of pursuing closer peer relationships while 
maintaining family support presents disclosure-related challenges (19) which affects 
seeking support for HIV care. Cognitive development is also factor in adherence. 
Neurobiological research reveals that self-regulation processes linked to healthy 
decision-making extends well into early adulthood (20). These developmental 
adherence barriers co-occur with individual and sociostructural contextual factors not 
unique to this population. HIV stigma is a major barrier (21)  as is the cost and distance 
of travel to HIV clinics (22). Further, individuals with mental or behavioral health 
concerns are at risk for nonadherence (23, 24). YPLH are consequently left without 
adequate support networks and personal capabilities (e.g., self-efficacy) to manage their 
illness themselves, two of the strongest predictors of adherence in SSA (25). This 
includes support to help navigate contextual barriers to adherence.   
Most adherence interventions in SSA target middle-aged adults, with many 
studies including only small samples of YPLH (26). Current adherence interventions are 
a poor fit for YPLH because they do not address this group’s unique adherence barriers 
and facilitators. Tailored programs can improve treatment outcomes (27); however, very 
few have been designed for youth in SSA and most have targeted youth under age 15 
(28). One intervention for YPLH in SSA addressed adherence (29). Their intervention 
showed promise; it improved young people’s retention in care using a YPLH-specific 
approach focused on peer support. However, it did not leverage other low-cost 
adherence strategies to address a broader range of adherence barriers, further engage 
young people in their healthcare with fun experiences, and perhaps have a broader and 
more meaningful influence on health behavior change. In addition, young men—a group 
at highest risk for poor treatment adherence (30)—were nearly absent from the trial. 
Our formative work in Ghana identified two potential areas of intervention for 
YPLH: technology and peer support. Our team’s preliminary research with an 
adolescent-focused ART adherence group in Ghana suggests that interventions can 

Version 2 11.3.21 
 
7 
 
conserve resources and still be effective if they build on peer support networks and fit 
within existing clinic services (31). We also discovered an interest among YPLH in 
mobile technology. We recently conducted individual interviews with 32 YPLH 
attending an HIV clinic in Ghana and our former research site. All owned cellphones 
and many were already actively engaged in a clinic-facilitated social media (WhatsApp) 
support group. 
Text message interventions for adherence are effective 
but they can be enhanced.  Cellphones are ubiquitous in 
Ghana and other areas of SSA. Approximately 85% of 18-24 year-
old Ghanaians owned a text-enabled phone (32). Only a small 
proportion use smartphones (34%) but most send text messages 
(79%). Their extensive availability has led to text message 
adherence interventions in SSA. They work in low to middle 
income countries by helping clinics and patients navigate 
contextual barriers to adherence (e.g., problems accessing clinic 
services) while facilitating behavioral reminders and adherence support. For example, a 
study of 538 adult HIV patients in Kenya revealed that those who received a weekly text 
message asking “How are you?” with linkage to phone support from HIV clinic 
counselors had significantly greater ART adherence and viral suppression compared to 
patients who received the standard of care (33). No text message intervention in SSA 
(e.g., 8, 33) has leveraged the ability of text messages to facilitate a variety of other 
health promoting exchanges (see Figure 1). Text messages are a preferred way of 
communicating among youth in Ghana, and thus have a high potential to engage YPLH.  
Modern mobile interventions are not widely available in low resource settings.  
Electronic games have been used for 30 years to improve treatment adherence (34). 
They offer many advantages over other delivery methods (35)—foremost, they provide 
ongoing, repetitive learning opportunities with immediate feedback and monitoring 
outside of medical environments, while making boring, unpleasant, and routine tasks 
fun and engaging. They can also be more cost-effective and easier to disseminate than 
face-to-face approaches (36). The application of gamification principles to health 
promotion games is a newer and potentially more powerful intervention strategy. 
Gamification is defined as “the use of game design elements in non-game contexts (6).”  

Version 2 11.3.21 
 
8 
 
In a “gamified” intervention to improve adherence to HIV care, engaging in actual 
adherence behavior and seeking treatment support are part of the game. Interventions 
have begun using these strategies (7). However, the low access to affordable mobile data 
plans and Wi-Fi bars the use of existing gamified programs in many areas of SSA. This is 
unfortunate given the popularity of games in the region.  
It is possible to play a Text-Based Adherence Game on low cost mobile phones 
without web access. Even with the advent of more technologically sophisticated games, 
text-based games continue to be immensely popular as smartphone apps (38). A text-
based game facilitated by a fully automated computer system and played solely through 
text messages is a possible. This strategy has not been previously tested. Game 
components could consist of ART and clinic visit reminders; patient and clinic 
monitoring of ART adherence, clinic attendance, viral load, and CD4+ count; 
personalization of settings; questions, polls, and messages related to ART adherence 
and retention in care problems; goals, point reinforcers, achievements, and game levels; 
peer competition; facilitated social support interactions; linkage to HIV clinic 
counselors and medical staff; optional use of a progress monitoring website; and an 
engaging storyline. A Text-Based Adherence Game also offers an advantage over 
digitally complex adherence games by being easily modified. This is an important 
consideration as a game’s relevance can diminish over time, and new barriers to 
adherence may emerge which need to be quickly addressed.  
Modified Social Action Theory(9) 
(Figure 2) can guide the creation of a 
Text-Based Adherence Game. The model 
has rarely been applied to HIV medical 
adherence(39) yet experts advocate for 
its use in SSA settings for this 
purpose(40). It differs from more 
individualistic theories with its emphasis on contextual factors and social 
interdependence. The construct of social interdependence in our model is defined as the 
relationship and interaction between YPLH and a person in their life who provides 
support for adherence. Adherence behaviors will alter this relationship. For example, a 
friend of an HIV patient who reminds the patient to take her HIV medication could 

Version 2 11.3.21 
 
9 
 
 
Table 1: Study Timeline 
 
Year 1 
Year 2 
Year 3 
Year 4 
Quarters 
1 
2 3 4 1 2 3 4 1 2 3 4 
1 
2 3 
4 
Aim 1: Develop 
  
  
  
  
  
Game/system creation 
• 
• 
• 
Iterative trial 
• • • 
Aim 2: Evaluate 
  
  
  
  
  
  
  
  
  
Recruitment 
• 
• 
• 
Randomized pilot 
• 
• 
• • • 
• 
• 
Analyses 
• • 
• 
• 
• 
• 
• 
become invested in the patient’s well-being which creates a closer, more supportive 
relationship. Alternatively, the friend may see this task as a burden and the relationship 
suffers. Our modified SAT model predicts that by (a) increasing YPLH’s personal 
capabilities related to adherence (skills, knowledge, and beliefs), (b) providing greater 
access to clinic and peer adherence social support, and (c) positively altering their 
relationship and interactions (social interdependence) with an identified supportive 
person, problems with developmental transitions are overcome and adherence behavior 
is improved. In addition, while many individual and sociostructural contextual barriers 
to adherence such as emotional problems and access to transportation cannot fully be 
addressed with a Text-Based Adherence Game, mobile access to clinic staff who can 
provide referrals for services can help YPLH better overcome these barriers. Finally, the 
model suggests that when YPLH receive feedback on their HIV-related health outcomes, 
their motivation to engage in protective health behaviors is enhanced.   
 
METHODOLOGY 
This research will be divided into two phases: (1) a Development Phase (Aim 1: 
Develop) in which we will conduct formative research to guide development of a Text-
Based Adherence Game and gain experience with its implementation in an iterative 
open trial and (2) a Randomized Controlled Pilot Phase (Aim 2; Evaluate). See Table 1 
for Study Timeline. 
 
Inclusion criteria. Inclusion criteria for YPLH: Males and females living with 
HIV, 18 to 24 years old, will be eligible for enrollment in each phase of the study 
according to the following criteria: (1) read English and speak English or a local 
language spoken by clinic staff (e.g., Twi), (2) in medical care for HIV and receiving ART 
at our clinic, (3) aware of their HIV status as per clinical record, (4) not impaired by 

Version 2 11.3.21 
 
10 
 
cognitive or medical limitations per clinician report, (5) possess a cellphone, and (6) 
able to give consent. Adolescents living with HIV (ALH) between the ages 12-17 will 
also be eligible to participate in focus groups and cognitive interviews as part of a 
separate component of the Development Phase. Their eligibility criteria is as follows: 
(1) read English and speak English or a local language spoken by clinic staff (e.g., 
Twi), (2) in medical care for HIV and receiving ART at our clinic, (3) aware of their 
HIV status as per parent/guardian report, (4) not impaired by cognitive or medical 
limitations per clinician report, (6) able to give assent, and (7) their parent/guardian 
is able to give consent. Parents or guardians of ALH are also able to participate in 
focus groups and cognitive interviews as part of this separate component. Parent 
eligibility is as follows: (1) speak English or a local language spoken by clinic staff 
(e.g., Twi), (2) own a mobile phone, (3) aware of their child’s HIV status, (4) not 
impaired by cognitive or medical limitations per clinician report, and (6) able to give 
consent. Participants in the randomized pilot must have also demonstrated a recent 
detectable viral load. Study staff will NOT make changes to ART regimens and 
participants will be encouraged to speak with their doctor if they have concerns about 
their medications or side effects of these medications. Any unexpected ethical issues 
that arise with our participants will be discussed immediately with the PI. All 
participants will receive a resource packet including information on ART as well as 
references to local health and social services. We will also encourage participants to 
identify a treatment monitor to take part in the game. This will not be a requirement for 
our study, however, because those who begin playing the game without a monitor will be 
incentivized via game rewards to recruit one (and we will assess this occurrence). 
Participants without a monitor will be assigned a peer educator to fill this role. Inclusion 
criteria for treatment monitors includes: 1) read English and speak English or a local 
language spoken by clinic staff, (2) target HIV patient has agreed to their participation, 
(3) aware of target patient’s HIV status as per patient report, (5) possess a cellphone, 
and (6) able to give consent.  
Exclusion criteria. Individuals will be excluded if they meet any of the following 
criteria: (a) self-reported participation in another ART adherence-related study (YPLH 
only) or (b) unable to understand the consent process. 

Version 2 11.3.21 
 
11 
 
Sample, site/recruitment, and retention. We will recruit 24 YPLH and potentially 
24 treatment monitors for the iterative open trial, and between 5-40 YPLH for the youth 
advisory group, as part of the Development Phase. The advisory board ranges from 5-40 
participants because those who attend the first group meeting will be invited back to 
attend two to four additional meetings. However, if they are unable to attend, new 
participants will be added to the group. We will also recruit 12-16 ALH and 12-16 
parents/guardians of ALH for focus groups and 10 parent-ALH dyads for cognitive 
interviews, as part of the Development Phase. Sixty 60 YPLH, and potentially 30 
treatment monitors, will be recruited for the pilot. In the pilot, it is estimated that 70% 
of youth will be female given that females account for 58% of all HIV cases in Ghana and 
seek treatment more than males (5). About 25% of YPLH will be newly-initiated to ART. 
Efforts will be made to equally sample young people who acquired HIV perinatally and 
behaviorally. Site/recruitment: Participants will be recruited from the HIV care clinic 
(the Clinic) at the Komfo Anokye Teaching Hospital (KATH), a teaching hospital 
affiliated with the Kwame Nkrumah University of Science and Technology (KNUST)  
located in Kumasi. It is the second largest clinic in the country and has a patient 
population estimated at 4,000. Although no research activities involving human 
subjects will occur at Rhode Island Hospital (RIH; the co-PI’s institution), RIH will 
support KNUST and KATH with compliance on regulatory matters, including authoring 
the standard operating protocol, IRB applications and approvals, quality control, and 
data analysis. Retention techniques: routinely updating contact information, reminder 
phone calls, online monitoring of game interactions, maintaining records of 
friend/family contacts, and obtaining an emergency contact.  
Identifying eligible patients and consent procedures. Eligible patients will be 
identified by clinic and research staff involved with the project. All eligible YPLH will be 
recruited consecutively until our desired sample size is obtained.  Research staff 
including the Research Assistant and Project Coordinator will conduct the informed 
consent in a private clinic room.  
 
Development Phase (Aim 1) 
The goal of the Development Phase is to create our Text-Based Adherence Game 
using a two-step approach: youth advisory board meetings followed by an iterative open 

Version 2 11.3.21 
 
12 
 
trial. The youth advisory board will be made up of five to eight YPLH. Findings from 
each step of this phase will be presented at board meetings held three to five times. 
Audio from board meetings will be digitally recorded. A working group will also be 
established consisting of the Project Coordinator, a clinic staff member, and the PI and 
Co-PI’s. The working group will meet regularly for the entire project to oversee study 
implementation. 
Adolescent and parent component. The Development Phase will also consist of a 
separate three-step component to explore the creation of a version of our Text-Based 
Adherence Game for ALH and their parents. First, 12-16 ALH will be recruited to 
participate in one of three focus groups. One group will include younger adolescents 
(12-14 years-old), one will include older adolescents (15-17 years-old), and one will 
have adolescents of all ages. An approximately equal number of male and female 
adolescents will be recruited The same number of parents (or guardians) of ALH will 
participate in their own focus groups. Each group will have 4-6 participants. Groups 
will be led in English or a local language, preference given to participants, by trained 
facilitators following a semi-structured focus group protocol, be conducted in private 
spaces at the Clinic, and last approximately two hours. ALH and parents will each be 
given 40 cedis for their participation. Parent and adolescent protocols will mirror each 
other and assess (1) barriers and facilitators to adolescent HIV treatment adherence 
with a focus on parenting practices and family relationships and (2) preferences for 
the Text-Based Adherence Game. Groups will be audio-recorded, translated (if 
necessary), and transcribed. Second, information gained from focus group data will be 
used to create a parent-based version of the Text-Based Adherence Game (see Game 
and system development below) to fit the needs and preferences of ALH and their 
parents. Third, 10 parent-adolescent dyads will participate in one of three rounds of 
cognitive interviews to evaluate usability of intervention prototypes. After each round 
of interviews, changes will be made to the intervention based on participate feedback. 
Cognitive interviews will be led in English or a local language, preference given to 
participants, by a trained facilitator in a private Clinic space and last approximately 
one hour. ALH and their parents will be interviewed separately and together. 
Interviews will be audio- recorded, translated (if necessary), and transcribed. ALH 
and their parents will each be given 40 cedis for their participation. Focus group and 

Version 2 11.3.21 
 
13 
 
cognitive interview parent participants will also complete a brief demographic and 
child health survey.  
Game and system development. Game development will be a structured process 
of integrating gamification principles with Social Action Theory and the qualitative 
findings. The game will be played entirely via text messages. Messages will exclude 
identifying information, HIV, ART, or the Clinic name to protect privacy. Players can 
also text the system directly to receive progress updates, reach out for support, or send 
supportive messages to peers. The game will include a secure password-protected 
website that keeps track of each patient’s individual progress. This can only be accessed 
by the patient. A leaderboard for all patients 
to see is also given with an overall game 
score for each patient using anonymized 
team names. Accessing the website will be 
optional and not be necessary to play the 
game. System development. Dimagi 
(Boston, MA, USA) has been identified as 
our technology provider. Dimagi provides a 
platform for our website and database, an 
application to facilitate text message 
exchanges, and training for research staff to 
learn how to manage the website, database, 
and application. This allows research staff to gain full control over its development and 
maintenance without long-term assistance. Dimagi’s system will involve connecting a 
mobile phone with pre-paid phone credits to a computer located at the Clinic. Their 
web-accessed application will transmit and receive messages through this mobile phone.  
Iterative open trial of the Text-Based Adherence Game (Aim 2).  A 30-week 
iterative open trial of the game will be conducted with 24 YPLH starting at the end of in 
Year 1. About half of the YPLH recruited for the open trial will be retained in each 
iteration (43). The trial will help refine the protocol and Text-Based Adherence Game. 
YPLH will also have the option of enroling their treatment monitor. Procedures. See 
Figure 3. After informed consent and assessment, participants will receive standard of 
care (SOC) services which includes one brief adherence SOC counseling session based 
1 

Version 2 11.3.21 
 
14 
 
on Centers for Disease Control and Prevention guidelines (44) led by a bachelors-level 
clinic counselor, as needed contact with counselors, and access to a clinic social event 
held once per year. They will then be shown the game by a trained RA. The basic 
elements of the game will be demonstrated and YPLH will have an opportunity to 
interact with the system, with study staff, to build interest and understanding. 
Participants will be asked permission to enroll a treatment buddy to participate in the 
game as well. This person will be consented by study staff. The game also pairs 
participants with a peer educator who has shown good medical adherence by clinic 
report and is trained to provide phone peer support. Three iterations of increasing game 
length (two, four, and eight weeks) and number of participants (n = 6, 8, and 10) will 
test game prototypes. After each iteration participants will be assessed with a semi-
structured cognitive interview (45) to gauge participants’ opinions of the game, and its 
clinical utility, relevance, strengths and weaknesses, ease of use, and ability to capture 
their experiences (See Appendix 1 for interview guide). Audio from cognitive interviews 
will be digitally recorded and transcribed. They will also complete quantitative measures 
for similar feedback.  In addition, participants will be assessed before and after the third 
iteration on main study variables to explore shifts in our primary and secondary 
outcomes.  Information gained after each iteration will be used by research staff to alter 
the game.  Study staff will also contact participants after they enroll via a phone call to 
trouble shoot problems playing the game. YPLH will be remunerated with an allowance 
of 40 Cedis for each assessment. They will also be given 40 Cedis worth of prepaid 
phone credits to send text messages. Treatment monitors will be compensated 40 Cedis. 
Measures: Participants’ overall satisfaction with the game will be assessed using a 
modified version of the Client Satisfaction Questionnaire (CSQ-8) after each iteration. 
The CSQ is an 8-item measure with good reliability and validity and used previously 
with African samples (46). They will also complete a modified Session Evaluation Form 
(SEF), which has 13 items that reflect areas of feasibility and intervention utility. 
Participants will complete measures of main study outcomes using an audio-assisted 
computer self-interview (ACASI). Main outcome measures are listed in the next section. 
The last prototype will be reviewed and revised by the research team before being 
finalized. Training of Research Assistants (RAs), Fidelity Monitoring, and Supervision: 
RAs will be trained by the co-PI (Dr. Tarantino) over a period of two days to provide 

Version 2 11.3.21 
 
15 
 
game instructions. Game instructions will be audio-recorded and coded for fidelity. 
Problems with fidelity will trigger retraining of RAs by the PI. Peer educators will 
receive in-person supervision from study staff who will themselves receive Skype 
supervision from the Dr. Tarantino.  Dr. Tarantino will also monitor participants’ game 
activity daily via the system’s website. 
 
Randomized Controlled Pilot Phase (Aim 2) 
We will evaluate the preliminary 
impact of the Text-Based Adherence Game 
run for one year compared to a control 
group. The pilot will include 60 YPLH on 
ART with the same eligibility criteria as the 
open trial. The same procedures will also 
be used pending open trial feedback. The 
game will be evaluated via a baseline and 
two follow-up assessments (6-/12-months 
post-baseline). Randomization will occur 
after enrollment using a random number generator. Participants not randomized to the 
Text-Based Adherence Game will receive the SOC condition as described above. See 
Figure 4.  
Design Considerations. Mobile phones—access and confidentiality. Participants 
will need their own phones to enroll in the study. Participants are advised to password-
protect their phones if possible yet many do not have this option. We will therefore (a) 
never send messages with identifying information or directly refer to HIV or HIV 
treatment, and (b) only enroll YPLH who agree to the risk of game messages being seen 
by others who use their phone. Phone numbers and de-identified patient information is 
securely stored in a HIPAA- compliant cloud database hosted by Dimagi. Only select 
study staff will be able to link participate names with ID numbers. Information will be 
stored and destroyed following HIPAA and IRB procedures (see Protection of Human 
Subjects). Assessments: Assessments will take 1 hour to complete and be administered 
in a private room in the Clinic using ACASI at baseline and 6- and 12-months post-
baseline. Clinic records will also be coded for biologic outcomes and clinic visits at these 
 2 

Version 2 11.3.21 
 
16 
 
assessments. Participants will be remunerated 40 Cedis ($8) for each one. They will also 
be given 80 Cedis worth of prepaid phone credits to send and receive text messages at 
the baseline and first 
follow-up assessments. 
Measures: The 
measures below will 
evaluate HIV-related 
health functioning, 
knowledge, attitudes, 
and behavior. Measures 
previously used in 
Ghanaian or SSA 
adolescent or young adult samples were chosen when possible. If necessary, revisions to 
measures will be made based on formative work to ensure cultural relevancy. Primary 
Outcomes: Past 30-day adherence will be assessed using a 3-item measure recently 
developed via intensive cognitive interviewing and field tests (47) and validated against 
electronic drug monitoring(48) . Self report of four day ART adherence based on percent 
of doses taken will also be assessed using the AACTG questionnaire (49).  Staff will 
abstract from the clinic record number of medical visits kept and missed in the past 6 
months(50), and most recent HIV viral load measurement, CD4 count, and current ART 
schedule. See Appendix 2 for data extraction form. If viral load was not measured in the 
past 3 months, it will be assessed at this visit as part of routine clinical care. Secondary 
Outcomes: Figure 5 presents an assessment schedule for each aim and describes the 
secondary outcomes. Appendix 3 contains questionnaire.  
 Data Analytic Plan 
Hypothesis One (Aim 1). The Text-Based Adherence Game will be feasible, 
appealing, and useful. YPLH in the third open trial iteration of the Text-Based 
Adherence Game will show shifts in primary and secondary outcomes in the expected 
directions from pre-post assessments.   
Hypothesis Two (Aim 2). Compared to participants in the control group, 
participants in the Text-Based Adherence Game will show at 6 and 12 months post-
intervention: improved ART adherence, clinic attendance, biologic functioning (lower 

Version 2 11.3.21 
 
17 
 
HIV viral load, higher CD4 count), and shifts in secondary outcomes (social support, 
self-efficacy, etc.) consistent with adherence promotion. Repeated measures ANCOVAs 
will be used to test differences over time between study conditions on each outcome 
variable. Missing data will be handled using multiple imputation. Potential imbalance 
between treatment conditions on baseline characteristics will be addressed using inverse 
probability of treatment weights (51). Power: As this is a pilot study and the impact of 
the intervention is not known, there may not be adequate power to determine its 
efficacy; also, pilot studies are not designed to provide accurate estimates of effect sizes 
upon which to base large trials(52). However, the small pilot may provide a “signal” of 
impact on its primary outcomes and we will examine the effects of the intervention on 
secondary outcomes based on Social Action Theory. We assume that retention over one 
year is at least 86% based on past studies conducted in Ghana (31, 53) thus 52 cases of 
the 60 enrolled in the pilot are available for analysis. Power analyses were run with 
G*Power 3(54). The model assumed 3 assessments with 52 individuals. The analyses 
with alpha of 0.05 and power 0.80 will be able to detect small to medium effects. 
DISSEMINATION OF RESULTS 
 
The findings from each phase of this study will be disseminated. Planned 
manuscripts include (1) a process analysis of our Text-Based Adherence Game using 
findings from the iterative open trial and youth advisory board meetings; (3) a study 
which presents descriptive quantitative data from our baseline sample of randomized 
pilot YPLH participants; and (4) the results from the randomized pilot testing the 
longitudinal effects of our Text-Based Adherence game on biobehavioral outcomes. 
Presentations will be submitted for dissemination at conferences including the meeting 
of the International AIDS Society. In addition, findings from our randomized pilot will 
be reported on https://clinicaltrials.gov/, a national (U.S.), freely-accessible registry 
which catalogues the results of publicly funded clinical trials.  Finally, after each phase 
of the study, a one-page summary of the results will be written in plain language and 
offered to participants during their routine clinic appointments. 
 
ETHICAL ISSUES 
Participant Involvement 

Version 2 11.3.21 
 
18 
 
Participant involvement is needed to accomplish each Specific Aims 1-2:  Aim 1 
involves semi-structured interviews and quantitative data collection with YPLH (n = 24) 
following their participation in an open trial of the intervention to gauge feasibility and 
satisfaction. Ten of these participants will also complete quantitative self-report 
measures of primary and secondary study outcomes pre- and post-trial. In addition, a 
youth advisory board consisting of YPLH will meet with investigators three to five times 
to review aid in intervention development. Finally, as part of a separate component of 
the Development Phase focused on adolescents living with (ALH; ages 12-17), ALH (n= 
12-16) and parents of ALH (n= 12-16) will participate in focus groups, and 10 parent-
ALH dyads will participate in cognitive interviews. Aim 2 involves a randomized 
controlled pilot (n=60) of the intervention which includes quantitative self-report 
assessments and clinic chart review at baseline, 6 months, and 12 months post-baseline 
with YPLH.  
Data Storage and Protection 
All participants will be assigned a unique participant identification number 
(PIN). These PINs will be used to identify participants on research materials, surveys, 
transcripts, ACASI logs, tracking forms and all databases. Participants’ names or other 
individually identifying information will never appear in any report resulting from this 
project. Separate from research records, an identifier key will be created to link the PIN 
to participant names and contact information in order to facilitate follow-up with 
participants and enter in data collected through record review (i.e., biologic functioning 
and clinic attendance). This identifier key will be stored separately from any research 
data or research-related forms (e.g. informed consent forms). All research data, 
research-related forms, and the identifier key will be secured in a locked cabinet or a 
password protected, encrypted laptop in a locked room. Electronic data will be routinely 
backed up onto an encrypted external hard drive. Encrypted data will be transferred via 
encrypted files to the co-PI (Dr. Tarantino) for quality control. Only essential project 
staff will have access to project data. To track participants, PI, co-PIs, and Project 
Coordinator will have access to a password-protected master file list linking PINs to 
patient records, kept in an encrypted laptop under lock and key. Electronic data will 
have several protections: (1) data will be securely transferred with an encrypted cloud-
hosted platform (OneDrive) from Ghana to Rhode Island Hospital’s data-encrypted 

Version 2 11.3.21 
 
19 
 
servers; (2) all study staff will be trained in participant data confidentiality protocols 
and will be consistently monitored by the co-PI on data safety and confidentiality; (3) 
audio files generated from the qualitative interviews will be designated with a code to 
ensure name confidentiality and delivered securely to a HIPAA-compliant transcription 
service. 
Data sent and received via text messages to participants’ phones for our 
intervention’s open trial (Aim 1) and pilot (Aim 2) will be stored on a cloud-hosted 
server established by our technology provider (Dimagi). Text message content will not 
contain any identifying information or direct references to HIV, HIV treatment, or the 
HIV clinic.  At participants’ request, text messages can also be password protected. 
Three pieces information linked to PINs will be stored on the server for participants in 
these two phases of the study: (1) participants’ phone numbers, (2) biologic functioning 
(CD4+ count, viral load), and (3) clinic appointments. For this reason, we will use 
Dimagi’s HIPAA-compliant software to encrypt, back up, and securely store this 
participant data. Study staff will have full access to the server in order to upload data 
and monitor system use through a secure, password-protected internet portal. YPLH 
participants will also have partial access to the server with a password-protected user-
friendly web interface which allows them to view their own personal information but not 
others’ information. YPLH participants will also be able to view a leaderboard consisting 
of the anonymized names of other participants and their game point totals, as part of the 
Text-Based Adherence Game intervention. For example, they may see that Player X is in 
first place with 75 points and Player Y is in second place with 54 points. Participants will 
NOT be able to view each other’s phones number, biologic functioning, or clinic 
appointments in order to protect privacy. Passwords for access will be changed 
periodically to ensure the security of these data.  
To ensure data quality of qualitative data, digital recordings of the qualitative 
interviews and youth advisory board meetings will reviewed within 48 hours of the 
interview by the co-PI. Additionally, after the data is transcribed, transcripts will be 
checked for accuracy against the data files.  
 
Potential Risks  

Version 2 11.3.21 
 
20 
 
There are potential risks for participants in this study: (1) potential coercion, (2) 
emotional discomfort from discussing sensitive topics, and (3) confidentiality breaches.  
 
Protection Against Risk 
1. Potential Coercion. The risk of potential coercion to participate will be 
minimized by following standard procedures for obtaining the informed consent from 
participants. Study personnel will fully explain the study procedures, risks, benefits, and 
alternatives to participants. Participants will also be reminded that study participation is 
voluntary and that refusing to participate or withdrawing from the study at any time will 
not result in any negative consequences. Recruitment for both phases of the project 
(Development Phase and Randomized Pilot Phase) will involve the same screening 
procedures. 
2. Emotional discomfort. Discussing sensitive topics such as HIV infection and 
sexual behaviour may cause psychological distress.  Study staff will continually monitor 
the participant for signs of distress during interviews, assessments, and introductions to 
the text message intervention. If signs of distress are apparent, the interviewer will offer 
to pause the session until the participant feels well enough to carry on and also offer 
more counselling and support. The participant will also be reminded that they may stop 
the session or un-enrol from the study at any time without penalty. In addition, the Co-
PI is a US-based licensed clinical psychologist, who, while working through the PI and 
Project Coordinator (if not on site himself), will offer clinical advice for participants 
experiencing emotional distress or in need of psychological and/or psychiatric care. 
Participants in need of psychological or psychiatric help will be given a referral to these 
services.  
3. Breach of confidentiality. During the consent process, risks of breaches in 
confidentiality will be highlighted including legal norms that would require a break in 
confidentiality. Research staff will receive training on the importance of keeping 
participant information confidential through proper record-keeping. No participant 
information including name, phone number, and health records will be shared with 
other participants in the open trial and randomized pilot through the Text-Based 
Adherence Game. No text messages received as part of this intervention will include this 
information either. Participants in the youth advisory group will also be informed 

Version 2 11.3.21 
 
21 
 
during the consent process that, while the rules of participating in the group include 
keeping other group member’s participation in the group private, this cannot be 
guaranteed.  
Medical or Professional Intervention in Event of Adverse Event. Although we do 
not anticipate any events in need of medical intervention associated with our study 
activities, due to our sample of YPLH we do recognize the need for some safeguards. All 
participants will be under the care of a physician as our study site is based in a public 
hospital HIV clinic and prescription of ART is an eligibility criteria of our study. All 
adverse events will be immediately reported to the PI. Serious adverse events will be 
reported to the KATH IRB, the KNUST IRB, and Rhode Island Hospital IRB as 
stipulated by the regulations of the IRB. 
 
Potential Benefits of the Proposed Research to Participants and Others 
There may be little or no direct benefit to participants from this study as this 
study is developing a novel text message program that may or may not improve 
adherence to HIV care for patient participants. However, reports from previous research 
have indicated that many participants feel that sharing information about their 
experiences of living with HIV or receiving HIV treatment with trained staff can be 
therapeutic. If requested, YPLH participants will be given information on HIV 
treatment, as well as referrals to local health and social services. Referrals to more 
intensive resources will be made as needed. 
Importance of Knowledge to be Gained 
This study will fill key gaps in scientific knowledge about the barriers and 
facilitators to HIV treatment adherence among YPLH in sub-Saharan Africa. 
Background literature suggests that this group has high rates of ART nonadherence, 
treatment attrition, and viral nonsuppression, and that these outcomes may be 
associated with the developmental transition from adolescence to adulthood. 
Additionally, the literature identifies key factors that influence ART adherence at the 
individual-, social-, and contextual-levels which can possibly be targeted through an 
engaging intervention using novel technology-based strategies. Thus, the risks of the 
proposed study are reasonable and balanced by the potential contribution of providing 
important information that can advance our knowledge of adherence to HIV care among 

Version 2 11.3.21 
 
22 
 
YPLH and whether the proposed intervention will improve adherence outcomes during 
this unique and vulnerable period of life.  
 
Data and Safety Monitoring Plan   
The data and safety monitoring will remain the prerogative of the project 
coordinator, PI and co-PIs. Data and safety monitoring will be part of the regular 
research meetings to be conducted. 
 
PERSONNEL OF STUDY TEAM 
 
Dr. Betty Norman 
Role: Principal Investigator 
Percent effort: 12% effort for 1.44 months, Years 1-3; 5% effort for .6 months, Year 5 
Responsibilities: Dr. Norman will oversee aspects of research activities conducted in 
Ghana. This includes facilitating interactions with the Kwame Nkrumah University of 
Science & Technology IRB, protocol development, budget management, supervision of 
research staff, research administration, recruitment of participants, and dissemination 
of research results through manuscripts and conference presentations. 
 
Dr. Anthony Enimil 
Role: Co-Principal Investigator 
Percent effort: 12% effort for 1.44 months, Years 1-3; 5% effort for .6 months, Year 5 
Responsibilities: Dr. Enimil will aid in protocol development, the recruitment and 
retention of adolescent and young adult patient participants and treatment monitors, 
supervision of research staff, manuscript authorship, and coordination of research 
administration, IRB involvement, and fiscal management alongside Dr. Norman.  
 
Dr. Nicholas Tarantino 
Role: Co-Principal Investigator 
Percent effort: 100% effort for 12 months, Year 1; 95% effort for 11.4 months, Years 2-4 
Responsibilities: Alongside the PI and Dr. Enimil, Dr. Tarantino will oversee all research 
activities outlined in this proposal. This includes being responsible for compiling, analyzing, and 

Version 2 11.3.21 
 
23 
 
disseminating the findings of the study, and applying for additional funding to support a large-
scale trial of the intervention. 
 
One Project Coordinator (To Be Hired) 
Percent effort: 40% effort for 4.8 calendar months for Years 1-3; 10% effort for 1.2 
months, Year 5 
Responsibilities: One Project Coordinator will assist the PI and Co-PIs in overseeing all 
research activities conducted in Ghana. This includes providing supervision to a Ghana-
based research assistant, facilitating interactions with the Ghana-based Institutional 
Review Boards, recruitment/retention of participants, administering 
assessments/interviews, attending meetings, producing project related reports, 
inventoring materials, and handling technology. 
 
One Research Assistant (To Be Hired) 
Percent effort: 40% effort for 4.8 calendar months for Years 1-3; 10% effort for 1.2 
months, Year 5 
Responsibilities: One Research Assistant will assist in research- related activities 
including obtaining consent/assent of eligible subjects (with supervision; recruitment, 
assessment, and retention of participants; preparing materials pertinent to the 
intervention; facilitating and implementing the text message-based intervention; 
participating in weekly research team meetings; and reporting to the Project 
Coordinator, PI and Co-PIs. 
 
 
Year 1 
Year 2 
Year 3 
Year 4 
Totals 
Personnel 
22800 
22800 
22800 
7300 
75700 
Research supplies 
100 
126 
76 
130 
432 
Administration 
(KNUST) 
916 
917 
915 
297 
3045 
Project Site 
(KATH) 
916 
917 
915 
297 
3045 
Total 
24732 
24760 
24706 
8024 
82222 

Version 2 11.3.21 
 
24 
 
SUBCONTRACT BUDGET (USD) 
 
REFERENCES 
1. 
UNAIDS. Global AIDS Update 2016 [Available from: 
http://www.unaids.org/sites/default/files/media_asset/global-AIDS-update-2016_en.pdf. 
2. 
Bygrave H, Mtangirwa J, Ncube K, Ford N, Kranzer K, Munyaradzi D. Antiretroviral therapy 
outcomes among adolescents and youth in rural Zimbabwe. PloS One. 2012;7(12):e52856. 
3. 
Auld AF, Agolory SG, Shiraishi RW, Wabwire-Mangen F, Kwesigabo G, Mulenga M, et al. 
Antiretroviral therapy enrollment characteristics and outcomes among HIV-infected adolescents and 
young adults compared with older adults-seven African countries, 2004-2013. Morbidity and Mortality 
Weekly Report. 2014;63(47):1097-103. 
4. 
Adejumo OA, Malee KM, Ryscavage P, Hunter SJ, Taiwo BO. Contemporary issues on the 
epidemiology and antiretroviral adherence of HIV-infected adolescents in sub-Saharan Africa: a narrative 
review. Journal of the International AIDS Society. 2015;18(1):20049. 
5. 
Ghana AIDS Commission. Country AIDS Response Progress Report: January 2013 - December 
2014: UNAIDS; 2015 [Available from: 
http://www.unaids.org/sites/default/files/country/documents/GHA_narrative_report_2015.pdf. 
6. 
Deterding S, Dixon D, Khaled R, Nacke L, editors. From game design elements to gamefulness: 
defining gamification. Proceedings of the 15th international academic MindTrek conference: Envisioning 
future media environments; 2011: ACM. 
7. 
Muessig KE, Nekkanti M, Bauermeister J, Bull S, Hightow-Weidman LB. A systematic review of 
recent smartphone, Internet and Web 2.0 interventions to address the HIV continuum of care. Current 
HIV/AIDS Reports. 2015;12(1):173-90. 
8. 
Maduka O, Tobin-West C. Adherence counseling and reminder text messages improve uptake of 
antiretroviral therapy in a tertiary hospital in Nigeria. Nigerian Journal of Clinical Practice. 
2013;16(3):302-8. 
9. 
Ewart CK. Social action theory for a public health psychology. American Psychologist. 
1991;46(9):931. 
10. 
Cugelman B. Gamification: what it is and why it matters to digital health behavior change 
developers. JMIR Serious Games. 2013;1(1):e3. 
11. 
Patrick K, Raab F, Adams M, Dillon L, Zabinski M, Rock C, et al. A text message-based 
intervention for weight loss: randomized controlled trial. Journal of Medical Internet Research. 
2009;11(1):e1. 
12. 
Ortego C, Huedo-Medina TB, Llorca J, Sevilla L, Santos P, Rodríguez E, et al. Adherence to highly 
active antiretroviral therapy (HAART): a meta-analysis. AIDS and Behavior. 2011;15(7):1381-96. 
13. 
Fox MP, Rosen S. Retention of adult patients on antiretroviral therapy in low-and middle-income 
countries: systematic review and meta-analysis 2008-2013. Journal of Acquired Immune Deficiency 
Syndromes (1999). 2015;69(1):98-108. 
14. 
Evans D, Menezes C, Mahomed K, Macdonald P, Untiedt S, Levin L, et al. Treatment outcomes of 
HIV-infected adolescents attending public-sector HIV clinics across Gauteng and Mpumalanga, South 
Africa. AIDS Research and Human Retroviruses. 2013;29(6):892-900. 
15. 
Lamb MR, Fayorsey R, Nuwagaba-Biribonwoha H, Viola V, Mutabazi V, Alwar T, et al. High 
attrition before and after ART initiation among youth (15–24 years of age) enrolled in HIV care. AIDS 
2014;28(4):559. 
16. 
Suh E, Diener E, Oishi S, Triandis HC. The shifting basis of life satisfaction judgments across 
cultures: Emotions versus norms. Journal of Personality and Social Psychology. 1998;74(2):482. 
17. 
Benson JE, Furstenberg Jr FF. Entry into adulthood: are adult role transitions meaningful 
markers of adult identity? Advances in Life Course Research. 2006;11:199-224. 
18. 
Wiener LS, Kohrt B-A, Battles HB. The HIV experience: youth identified barriers for transitioning 
from pediatric to adult care. Journal of Pediatric Psychology. 2011;36(2):141-54. 
19. 
Siu GE, Bakeera-Kitaka S, Kennedy CE, Dhabangi A, Kambugu A. HIV serostatus disclosure and 
lived experiences of adolescents at the Transition Clinic of the Infectious Diseases Clinic in Kampala, 
Uganda: A qualitative study. AIDS Care. 2012;24(5):606-11. 

Version 2 11.3.21 
 
25 
 
20. 
Taber-Thomas B, Perez-Edgar K. Brain Development. In: Arnett JJ, editor. The Oxford Handbook 
of Emerging Adulthood: Oxford University Press; 2015. p. 126. 
21. 
Weiser S, Wolfe W, Bangsberg D, Thior I, Gilbert P, Makhema J, et al. Barriers to antiretroviral 
adherence for patients living with HIV infection and AIDS in Botswana. Journal of Acquired Immune 
Deficiency Syndromes. 2003;34(3):281-8. 
22. 
Tuller DM, Bangsberg DR, Senkungu J, Ware NC, Emenyonu N, Weiser SD. Transportation costs 
impede sustained adherence and access to HAART in a clinic population in southwestern Uganda: a 
qualitative study. AIDS and Behavior. 2010;14(4):778-84. 
23. 
Jaquet A, Ekouevi DK, Bashi J, Aboubakrine M, Messou E, Maiga M, et al. Alcohol use and 
non‐adherence to antiretroviral therapy in HIV‐infected patients in West Africa. Addiction. 
2010;105(8):1416-21. 
24. 
Nakimuli-Mpungu E, Bass JK, Alexandre P, Mills EJ, Musisi S, Ram M, et al. Depression, alcohol 
use and adherence to antiretroviral therapy in sub-Saharan Africa: a systematic review. AIDS and 
Behavior. 2012;16(8):2101-18. 
25. 
Langebeek N, Gisolf EH, Reiss P, Vervoort SC, Hafsteinsdóttir TB, Richter C, et al. Predictors and 
correlates of adherence to combination antiretroviral therapy (ART) for chronic HIV infection: a meta-
analysis. BMC Medicine. 2014;12(1):142. 
26. 
Kunutsor S, Walley J, Muchuro S, Katabira E, Balidawa H, Namagala E, et al. Improving 
adherence to antiretroviral therapy in sub-Saharan African HIV-positive populations: an enhanced 
adherence package. AIDS Care. 2012;24(10):1308-15. 
27. 
Naar-King S, Parsons JT, Murphy DA, Chen X, Harris DR, Belzer ME. Improving health 
outcomes for youth living with the human immunodeficiency virus: a multisite randomized trial of a 
motivational intervention targeting multiple risk behaviors. Archives of Pediatrics & Adolescent Medicine. 
2009;163(12):1092-8. 
28. 
Bhana A, Mellins CA, Petersen I, Alicea S, Myeza N, Holst H, et al. The VUKA family program: 
piloting a family-based psychosocial intervention to promote health and mental health among HIV 
infected early adolescents in South Africa. AIDS care. 2014;26(1):1-11. 
29. 
Snyder K, Wallace M, Duby Z, Aquino LD, Stafford S, Hosek S, et al. Preliminary results from 
Hlanganani (Coming Together): a structured support group for HIV-infected adolescents piloted in Cape 
Town, South Africa. Children and Youth Services Review. 2014;45:114-21. 
30. 
Ochieng-Ooko V, Ochieng D, Sidle JE, Holdsworth M, Wools-Kaloustian K, Siika AM, et al. 
Influence of gender on loss to follow-up in a large HIV treatment programme in western Kenya. Bulletin 
of the World Health Organization. 2010;88(9):681-8. 
31. 
Barker D, Enimil A, Galarraga O, Bosomtwe D, Mensah N, Thamotharan S, et al. In-Clinic 
Adolescent Peer-Groups Support for Engagement in Sub-Saharan Africa: A Feasibility and Acceptability 
Trial. under review. 
32. 
Pew Research Center. Cell Phones in Africa: Communication Lifeline 2017 [Available from: 
http://www.pewglobal.org/2017/04/15/cell-phones-in-africa-communication-lifeline/. 
33. 
Lester RT, Ritvo P, Mills EJ, Kariri A, Karanja S, Chung MH, et al. Effects of a mobile phone short 
message service on antiretroviral treatment adherence in Kenya (WelTel Kenya1): a randomised trial. The 
Lancet. 2010;376(9755):1838-45. 
34. 
Clarke B, Schoech D. A Computer-Assisted Therapeutic Game for Adolescents: Initial 
Development and Comments. In: Schwartz MD, editor. Using Computers in Clinic Practice: 
Psychotherapy and Mental Health Applications. New York, N.Y.: Haworth Press; 1984. p. 335-53. 
35. 
Hieftje K, Edelman EJ, Camenga DR, Fiellin LE. Electronic media–based health interventions 
promoting behavior change in youth: A systematic review. JAMA Pediatrics. 2013;167(6):574-80. 
36. 
Thirumurthy H, Lester RT. M-health for health behaviour change in resource-limited settings: 
applications to HIV care and beyond. Bulletin of the World Health Organization. 2012;90(5):390-2. 
37. 
Frempong G. Understanding what is happening in ICT in Ghana: A supply and demand-side 
analysis of the ICT sector. Evidence for ICT Policy Action, Policy Paper. 2012;4. 
38. 
Rajan A. A Dark Room 2015 [Available from: https://itunes.apple.com/us/app/a-dark-
room/id736683061?mt=8. 
39. 
Johnson MO, Charlebois E, Morin SF, Remien RH, Chesney MA, Team NHLP. Effects of a 
behavioral intervention on antiretroviral medication adherence among people living with HIV: the 
healthy living project randomized controlled study. Journal of Acquired Immune Deficiency Syndromes. 
2007;46(5):574. 

Version 2 11.3.21 
 
26 
 
40. 
Kagee A, Remien R, Berkman A, Hoffman S, Campos L, Swartz L. Structural barriers to ART 
adherence in Southern Africa: challenges and potential ways forward. Global Public Health. 2011;6(1):83-
97. 
41. 
Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data 
saturation and variability. Field Methods. 2006;18(1):59-82. 
42. 
Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 
2006;3(2):77-101. 
43. 
Creswell JW, Miller DL. Determining validity in qualitative inquiry. Theory into Practice. 
2000;39(3):124-30. 
44. 
CDC. Small Talks about ART Adherence. 2015. 
45. 
Ericsson KA, Simon HA. Verbal reports as data. Psychological Review. 1980;87(3):215. 
46. 
Almeida R, Adejumo O. Consumer satisfaction with community mental health care in Durban: 
research. Health SA Gesondheid. 2004;9(1):3-9. 
47. 
Wilson IB, Fowler Jr FJ, Cosenza CA, Michaud J, Bentkover J, Rana A, et al. Cognitive and field 
testing of a new set of medication adherence self-report items for HIV care. AIDS and Behavior. 
2014;18(12):2349-58. 
48. 
Wilson IB, Lee Y, Michaud J, Fowler Jr FJ, Rogers WH. Validation of a new three-item self-report 
measure for medication adherence. AIDS and Behavior. 2016:1-9. 
49. 
Chesney MA, Ickovics J, Chambers D, Gifford A, Neidig J, Zwickl B, et al. Self-reported adherence 
to antiretroviral medications among participants in HIV clinical trials: the AACTG adherence 
instruments. AIDS Care. 2000;12(3):255-66. 
50. 
Mugavero MJ, Westfall AO, Zinski A, Davila J, Drainoni M-L, Gardner LI, et al. Measuring 
retention in HIV care: the elusive gold standard. Journal of AIDS. 2012;61(5):574. 
51. 
Pirracchio R, Resche-Rigon M, Chevret S. Evaluation of the propensity score methods for 
estimating marginal odds ratios in case of small sample size. BMC Medical Research Methodology. 
2012;12(1):1. 
52. 
Kraemer H, Mintz J, Noda A, Tinklenberg J, Yesavage JA. Caution regarding the use of pilot 
studies to guide power calculations for study proposals. Archives of General Psychiatry. 2006;63(5):484- 
53. 
Kwara A, Lartey M, Sagoe KW, Rzek NL, Court MH. CYP2B6 (c.516G→T) and CYP2A6 (*9B 
and/or *17) polymorphisms are independent predictors of efavirenz plasma concentrations in HIV-
infected patients. British Journal of Clinical Pharmacology. 2009;67(4):427-36. 
54. 
Faul F, Erdfelder E, Lang A-G, Buchner A. G* Power 3: A flexible statistical power analysis 
program for the social, behavioral, and biomedical sciences. Behavior Research Methods. 2007;39(2):175-
91. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

V ersi o n 2 1 1. 3. 2 1  
 
2 7  
 
A p p e n di x 1 . D r aft Q u alit ati v e I nt e r vi e w G ui d e s 
 
 
T h e  i n v estig at ors  will  l ea d a s e mi-str u ct ur e d c o g niti ve i nt er vi e w wit h  e ac h  p ati e nt 
p arti ci p a nt i n t h e O p e n Tri al of t h e D e v el o p m e nt P h as e  t o g at h er  i nf or m ati o n t h at will  
pr o vi d e  g ui d a n c e  i n d e v el o pi n g  t h e T e xt -B as e d A d h er e n c e G a m e i nt er v e nti o n.  
F oll o wi n g t he I ntr o d ucti o n o utli ne bel o w is a n o utli ne f or t he Ver b al I ntervie w. E ac h i ntervie w 
t o pic is f oll o we d b y br o a d a n d ge ner ally o pe n-e n de d q uesti o ns. I ntervie wers will be i nstr ucte d 
t o as k m ore s pecific f oll o w-u p q uesti o ns t o pr o be res p o nses t o t he i nitial o pe n -e n de d q uesti o ns.  
 
I ntr o d u cti ons 
 
O v er vi e w:  Th e  i nt e nt of  this  p orti o n  of t h e a g e n d a  is t o w el c o m e t h e p artici p a nt  a n d  
m a k e  t h e m as c o mf ort a bl e  as  p ossi bl e  b y e x pl ai ni n g  t h e i nt er vi e w pr o c ess a n d l etti n g  
t h e m k n o w w h at  t o e x p e ct  fr o m t h e e x p eri e n c e. A d diti o n all y,  t h e i n v estig at or  will  
e x pl ai n  r ul es c on c er ni n g  c onfi d e nti alit y,  a n d  t h e us e  of  d at a.  
 
 I ntr o d u c e I nv esti g at or  
 E x pl ai n  t h at t h e o v er all  p ur p os e  of  i nt er vi e w is t o elicit  dis c ussi o n a b o ut t h e 
p arti ci p a nt’s  e x p eri e n c es  wit h p artici p ati n g i n t h e T e xt -B as e d A d h er e n c e 
G a m e.  
 S a m pl e  di al o g u e:  “ T h a n k y o u s o mu c h  f o r a g r e ei n g  t o b e  a pa rt  of  t his i nte r vi e w  
t o da y.  
W e  a r e  h e r e  t o d a y t o l ea r n  a b o ut y o u r e x p e ri e n c e wit h pl a yi n g t h e T e xt -
B as e d A d h e r e n c e G a m e ( r ef e r r e d t o as T A G). As y o u k n o w, o ur  i d e a is t o 
c r e at e  a g a m e t h at is pl a y e d t h r o u g h t e xt m ess a g es. T h e g a m e s h o ul d b e f u n 
a n d  h el p  y o u n g p e o pl e c o n n e ct wit h s o ci al s u p p o rt a n d  f oc us o n  t h ei r HI V 
t r e at m e nt. W e  w a nt  t o k n o w w h at  p e o pl e t hi n k  a b o ut t h e g a m e a n d if y o u 
h a v e a n y s u g g esti o ns f o r its i m p r o v e m e nt.  Y o u  a r e  t h e e x p e rt i n t his a r e a.  W e  
r e all y  n e e d  t o l e a r n f ro m y o u i n o r d e r t o m a k e  t his p r o g r a m s uccessf ul.  
 Gr o u n d  r ul es: “ Y o u d o  n ot h a v e  t o ans w e r  a n y  qu esti o ns  y o u a r e  u n c o mf o rt a bl e  
wit h.  
T h e r e  is n o ri g ht o r  w r o n g  a ns w e rs. W e’ r e  i nt e r est e d i n all  o pi ni o ns.”  
 C o nfi d e nti alit y:  “ W e w o r k  h a r d  t o m ak e  s u r e e v e r yt hi n g s a i d i n t h e 
i nt e r vie w  will  n ot  b e s h a r e d  wit h  a n y o n e o utsi d e  of  t h e r es e a r c h t e a m u nl ess  
y o u t ell us  a b o ut  a sit u ati o n w h e r e y o u o r  s om e o n e  el s e is i n d a n g e r .” 
 Di git al  R e c o r di n g: “ R e c o r di n gs a r e  not  s h a r e d wit h  a n y o n e outsi d e  of  t h e 
r es e a r c h  t e a m, t h e y a r e  k e pt s af e a n d  p ri v at e. W h e n  i nf o rm ati o n  is t a k e n f r o m 
t h e r e c o r di n g,  
p a rti ci p a n ts will  b e  i d e ntifi e d b y  a n um b e r  o nl y a n d  n a mes  will  n ot b e  us e d.  
T a p es  will  b e  e r as e d  o n c e  t r a ns c ri b e d a n d s u m m a riz e d.” 
 
V er b al I nt er vi e w 
 
F e e d b a c k  o n t h e G a m e : T h e p artici p a n ts will  b e as k e d  t o t al k a b o ut  t h eir 
i m pr essi ons of  t h e Te xt -Base d A d here nce G a m e ( T A G).   
 

V ersi o n 2 1 1. 3. 2 1  
 
2 8  
 
 “ T ell m e a b o ut y o u r e x p e ri e n c e pl a yi n g T A G.”  
 “ W h at as p e cts of T A G di d y o u li k e t h e m ost ?” 
 “ H o w w as t h e g a m e h el pf ul t o y o u r HI V t r e at m e nt ?” 
 “I n w h at w a ys di d t h e g a m e i nfl u e n c e h o w y o u t a k e A R T ?” 
 “I n w h at w a ys di d t h e g a m e i nfl u e n c e y o u r f eeli n gs t o w a r ds A R T ?”  
 “I n w h at w a ys di d t h e g a m e i nfl u e n c e y o u r a bilit y t o att e n d a p p oi nt m e nts ?” 
 “ W h at di d y o u l e a r n f r o m t h e g a m e ?” 
 “ W h at as p e cts of T A G w o ul d y o u w a nt t o c h a n g e ?” 
  “T ell m e y o u r t h o u g hts a b o ut t h e t h e m e of t h e g a m e.”  
  “W h at d i d y o u t hi n k of t h e f r e q u e n c y of t e xt m ess a g es ?”  
  “H o w diffi c ult w as it t o r e a d a n d u n d e rst a n d t h e t e xt m ess a g es ?”  
  “W h at di d y o u t hi n k a b o ut c o m p eti n g a g ai nst ot h e r y o u n g p e o pl e ?”  
  “W h at di d y o u t hi n k a b o ut h a vi n g a t r e at m e nt b u d d y i n v ol v e d ?”  
  “T ell m e a b o ut  g etti n g as k e d t o r e c ei v e a p h o n e c all f r o m t h e cli ni c ?”  
  “W h at w o ul d ot h e r y o u n g p e o pl e li vi n g wit h HI V  li k e a b o ut  this  g a m e ?”  
  “Di d y o u e v e r w o r r y a b o ut p ri v ac y w h e n pl a yi n g T A G ?”  
  “If all y o u n g p e o pl e at t h e cli ni c st a rt e d pl a yi n g this g a m e t o m o r r o w, w h at’s t h e 
fi rst t hi n g y o u’ d d o t o i m p r o v e it ? 
 
Cl osi n g  
 
O v er vi e w:  t h e p arti ci p a n ts will  b e t ha n k e d  f or t h eir ti m e a n d  eff orts  
 
 
 

Version 2 11.3.21 
 
29 
 
 
Appendix 2: Chart Review Data Abstraction Form 
 
1) 
Today’s date: 
(MM)_____/(DD)_____/(YY)_____ 
 
2) 
Date of first presentation to KBTH: 
(MM)_____/(DD)_____/(YY)_____ 
 
3) 
Age (years) _______ 
 
4) 
Gender 
 1 – Male 
 2 – Female 
 
5) 
Marital Status 
 1 – Single  
 2 – Married 
 3 – Divorced 
 4 – Separated 
 5 – Cohabiting 
 6 – Not Available 
 
6) 
Highest education level attained 
 1 – None  
 2 – Primary 
 3 – JSS 
 4 – MSLC 
 5 – Sec/Tech 
 6 – University  
 
7) 
Employment/occupation at presentation 
 
_______________________________________ 
  
8) 
 Employment status at presentation 
 1 – Full time 
 2 – Part time 
 3 – On leave 
 4 – Unemployed 
 5 – Unknown 
 
9) 
 Dependent children (aged <18 years) 
 1 – Total number 
________________________________ 
 2 – How many are HIV+ 
________________________________ 
 
10) Funding type 
 1 – Patient out-of-pocket 
 2 – Medical insurance  
 3 – Special project 
 4 – Employer sponsored 
 5 – Unknown 
 6 – Other: ________________________ 
 
11) HIV status at presentation: 
 Known positive 
 Diagnosed at admission 
 
12) Current WHO stage 
 1 – Stage I 
 2 – Stage II 
 3 – Stage III 
 4 – Stage IV 
 
13) Current Drug Therapy (check all that apply): 
 1 – Stavudine) 
 2 – Zidovudine) 
 3 – Lamivudine) 
 4 – Abacavirl 
 5 – Tenofovir 
 6 – Didanosine 
 7 – Nevirapine 
 8 – Efavirenz 
 9 – Combivir (zidovudine and lamivudine) 
 10 – Kaletra (lopinavir/r)  
 11 – Nelfinavir 
 13 – Other-
:__________________________________ 
 
 
14) Most recent CD4 cell count:_______________ 
 
15) Date of most recent CD4 cell count test: 
________________________________________ 
 
16) Most recent viral load:_______________ 
 
17) Date of most recent viral load test: 
________________________________________ 
 
18) Detectable viral load in past six months: 
  – Yes 
  – No 
 
19) Date of ART initiation: 
(MM)_____/(DD)_____/(YY)_____ 
 
20) Number of clinic appointments missed in the past 
6 months________________________________ 
 
21) Number of clinic appointments kept in the past 6 
months__________________________________ 
 
22) Number of clinic appointments missed in the past 
12 months________________________________ 
 
23) Number of clinic appointments kept in the past 12 
months__________________________________ 
 
24) Longest period without an appointment 
(months):_______ 
 
25) Route of HIV infection 
 1 – Perinatal 
 2 – Behavioral 
 3 – Unknown 
 

Version 2 11.3.21 
 
30 
 
 
Appendix 3: Questionnaire and Satisfaction Surveys 
 
ALL QUESTIONNAIRE ITEMS WILL BE READ TO PARTICIPANTS AND ADMINISTERED BY A 
COMPUTER PROGRAM WITH RESEARCH STAFF PRESENT FOR ASSISTANCE.  
 
Demographic Survey 
Age 
______ 
Gender 
1- Male 
2- Female 
3- Other_____ 
Ethnicity 
1- Akan 
2- Ga/Dangbe 
3- Ewe 
4- Northern Tribes 
5- Multiple 
6- Other_______ 
What language do you speak at home? 
1- Twi/Fante/Bono 
2- Ga/Dangwe 
3- Hausa 
4- Ewe 
5- English 
6- Other___________ 
Location of home 
1- Kumasi 
2- Outside of  Kumasi ____________ 
Distance traveled to Fevers Unit 
1- 5km or less 
2- 6-10km 
3- 11-15km 
4- 16-20km 
5- 21-25km 
6- 26-30km 
7- 31-35km 
8- 36-40km 
9- 41km or more 
Time to travel to Chest Clinic 
1- less than 30 minutes 
2- 30 minutes to 1 hour 
3- 1-2 hours 
4- more than 2 hours 
How do you get to Chest clinic? 
1- Public transportation 
2- Walk 
3- Private car 
4- Other______ 
How much does it cost you (GHS) to get to Chest 
clinic? 
___________________ 
Highest Education Completed 
1- None 
2- Primary 
3- Secondary 
4- Higher education 

Version 2 11.3.21 
 
31 
 
 
Currently in school 
1- Yes, secondary (boarding school) 
2- Yes, secondary (not boarding school) 
3- Yes, higher education 
4- No 
Live with parents or caregivers 
1- Yes 
2- No 
Parents died as a result of AIDS 
1 - Yes, one parent 
2 - Yes, two parents 
3 - No 
Does anyone else you live with have HIV? 
1- Yes 
2- No 
Sexual orientation 
1- Straight (heterosexual) 
2- Gay or lesbian (homosexual) 
3- Bisexual 
4- Other 
Marital status 
1- Single/never married 
2- Married 
3- Divorced/separated 
4- Widowed 
Relationship status 
1- In a relationship, living with partner 
2- In a relationship, not living with 
partner 
3- Not in a relationship 
HIV status of partner 
1- HIV positive 
2- HIV negative 
3- Not sure 
Do you have children? 
1- Yes 
2- No 
If yes, how many? 
________________________ 
Religion 
1- No religion 
2- Catholic/Anglican 
3- Protestant 
4- Other Christian 
5- Muslim 
6- Traditionalist/spiritualist 
7- Other___________ 
Employment 
1- Unemployed 
2- Self-employed 
3- Private or government employment 
Monthly household income (GHS) 
1- No income 
2- 1-99 GHS per month 
3- 100-199 GHS per month 
4- 200-299 GHS per month 
5- 300-399 GHS per month 
6- 400-499 GHS per month 
7- 500 GHS or more per month 

Version 2 11.3.21 
 
32 
 
 
How many people are in your household? 
_____________ 
 
 
Which of the following best describes the main 
dwelling where you live? 
1. Formal dwelling (such as a house) 
2. Informal dwelling (such as shack or 
tent) 
 
 
 
Subjective Social Standing 
Instructions – First Ladder 
Think of this ladder as showing where people stand in their communities. People define 
community in different ways. Please define it in whatever way is most meaningful to you. At the 
top of the ladder are the people who have the highest standing in their community. At the bottom 
are the people who have the lowest standing in their community. Where would you place yourself 
on this ladder? Place an X on the rung where you think you stand at this time of your life relative 
to other people in your community. 
Instructions – Second Ladder 
Think of this ladder as showing where people stand in Ghana. At the top of the ladder are the 
people who are the best off – those who have the most money, the best education, and the most respected 
jobs. At the bottom are the people who are the worst off – who have the least money, least education, and 
the least respected job or no job. The higher up you are on this ladder, the closer you are to the people at the 
top.; the lower you are, the closer you are to the people at the bottom. Where would you place yourself on 
this ladder? Place an X on the rung where you think you stand at this time of your life relative to other 
people in the Ghana. 
 
Food Security Questions 
1. “We worried whether our food would run out before we could get more.”  
Was that often true, sometimes true, or never true for your household in the last month? 
2. “The food that we had just didn’t last, and we couldn’t get more.”  
Was that often, sometimes, or never true for your household in the last month? 
3. “We couldn’t get the kinds of foods that give us good health.”  
Was that often, sometimes, or never true for your household in the last month? 
4. In the last month, did (you/you or other adults in your household) ever reduce the amount of 
food you ate or skip meals because there wasn’t enough food? Yes or No 
5. In the last month, did you ever eat less because there wasn't enough food? Yes or No. 
6. In the last month, were you ever hungry but didn't eat because there wasn’t enough food? Y/N 
7. In the last month, did you lose weight because you didn't have enough food to eat? Yes or No. 
8. In the last month, did you or other adults in your household ever not eat for a whole day 
because there wasn't enough food? Yes or No.  
 
Self-Efficacy for Adherence to HIV Care 
 
In the past 6 months, how many doctor’s appointments have you missed?  
          
|_____|_____| “Appointments”  
 
Please answer the following questions using these response options: 
 
1 “Very Sure I Can” 
2 “Pretty Sure I Can” 
3 “Not Sure if I Can or Cannot” 
4 “Pretty Sure I Cannot” 

Version 2 11.3.21 
 
33 
 
 
5 “Very Sure I Cannot” 
 
How sure are you that you can keep doctor and other health care appointments? _____ 
How sure are you that you can do better with keeping doctor and other health care appointments?” 
_______ 
 How sure are you that you can keep doctor and other health care appointments even if you were 
very tempted not to?”  __________ 
 “How sure are you that you can take the right amounts of your medicine at the right times?” 
__________ 
 “How sure are you that you can do better with taking the right amounts of your medicine at the 
right times?” __________ 
 “How sure are you that you can take the right amounts of your medicine at the right times even if 
you were very tempted not to?” __________ 
 
ART Perceived Norms 
 
1. Based on what you personally believe, not just what your doctor tells you, what is a good rate of 
adherence? ______(0 to 100%) 
2. How many missed doses would be of concern for you out of your next 10 doses?__  
3. Based on what you personally believe, not just what your doctors tells you, what is the rate of 
adherence for most people your age? ____ ( 0 to 100%) 
 
Problem-Solving Inventory 
 
Instructions 
How much do you agree or disagree with the following statements? 
 
Strongly Agree 
 
 
 
 
 
 
 
Strongly Disagree 
1 
 
2 
 
3 
 
4 
 
5 
 
6 
 
1. I am usually able to think up creative and effective alternatives to solve a problem. ___ 
2. I have the ability to solve most problems even though initially no solution is immediately 
apparent ___ 
3. Many problems I face are too complex for me to solve. ___ 
4. I make decisions and am happy with them later. ___ 
5. When I make plans to solve a problem, I am almost certain that I can make them work.  
6. Given enough time and effort, I believe I can solve most problems that confront me. __ 
7. When faced with a novel situation I have confidence that I can handle problems that may arise. 
__ 
8. I trust my ability to solve new and difficult problems ___ 
9. After making a decision, the outcome I expected usually matches the actual outcome. _ 
10. When confronted with a problem, I am unsure of whether I can handle the situation. _ 
11. When I become aware of a problem, one of the first things I do is to try to find out exactly what 
the problem is ___ 
12. When a solution to a problem was unsuccessful, I do not examine why it didn't work. _ 
13. When I am confronted with a complex problem, I do not bother to develop a strategy to collect 
information so I can define exactly what the problem is. ___ 
14. After I have solved a problem, I do not analyze what went right or what went wrong __ 
15. After I have tried to solve a problem with a certain course of action, I take time and compare 
the actual outcome to what I thought should have happened. ___ 
16. When I have a problem, I think up as many possible ways to handle it as I can until I can't 
come up with any more ideas ___ 
17. When confronted with a problem, I consistently examine my feelings to find out what is going 
on in a problem situation. ___ 

Version 2 11.3.21 
 
34 
 
 
18. When confronted with a problem, I tend to do the first thing that I can think of to solve it. ___ 
19. When deciding on an idea or possible solution to a problem, I do not take time to consider the 
chances of each alternative being successful. ___ 
20. When confronted with a problem, I stop and think about it before deciding on a next step. 
21. I generally go with the first good idea that comes to my mind. ___ 
22. When making a decision, I weigh the consequences of each alternative and compare them 
against each other. ___ 
23. I try to predict the overall result of carrying out a particular course of action, ___ 
24. When I try to think up possible solutions to a problem, I do not come up with very many 
alternatives. ___ 
25. I have a systematic method for comparing alternatives and making decisions. ___ 
26. When confronted with a problem, I do not usually examine what sort of external things my 
environment may be contributing to my problem. ___ 
27. When I am confused by a problem, one of the first things I do is survey the situation and 
consider all the relevant pieces of information. ___ 
28. When my first efforts to solve a problem fail, I become uneasy about my ability to handle the 
situation. ___ 
29. Sometimes I do not stop and take time to deal with my problems, but just kind of muddle 
ahead. ___ 
30. Even though I work on a problem, sometimes I feel like I am groping or wandering, and am 
not getting down to the real issue. ___ 
31. I make snap judgments and later regret them. ___ 
32. Sometimes I get so charged up emotionally that I am unable to consider many ways of dealing 
with my problems. ___ 
 
ART Outcome Expectancies 
Instructions 
We’re going to ask you to think about different situations having to do with how people take their 
HIV medications. Use the following response options to answer the questions.  
 
1        Not at all likely 
   2        Somewhat likely 
             3        Moderately likely 
             4        Very likely 
 
Q1. If you did not take your HIV medications as they are prescribed to you, how likely is it that you 
would experience worsening health?________ 
Q2. If you did not take your HIV medications as they are prescribed to you, how likely is it 
that your immune system would get weaker?_______ 
Q3. If you did not take your HIV medications as they are prescribed to you, how likely is it that the 
virus would get stronger?________ 
Q4. If you did not take your HIV medications as they are prescribed to you, how likely is it that you 
would feel better than you do now?_______ 
Q5. If you did not take your HIV medications as they are prescribed to you, how likely is it 
that your life would be easier?_______ 
Q6. If you did not take your HIV medications as they are prescribed to you, how likely is it that it 
will not make a difference?_________ 
Q7. If you did not take your HIV medications as they are prescribed to you, how likely is it 
that your life would be shorter?__________ 
 
Motivational Readiness to Adhere to HIV Medications 
 
Instructions 
“How ready are you to take HIV medication as prescribed.”  
Not Ready                             Unsure 
                           Completely Ready 
1 
2 
3 
4 
5 
6 
7        8          9           10 

Version 2 11.3.21 
 
35 
 
 
 
“How ready are you to get to HIV medical appointments (at least 4 times a year).”  
Not Ready                              Unsure 
                           Completely Ready 
1 
2 
3 
4 
5 
6 
7        8          9           10 
 
 
MOS Social Support Survey 
Instructions 
People sometimes look to others for companionship, assistance, or other types of support.  How 
often is each of the following kinds of support available to you if you need it?  Circle one number 
on each line. 
 
 
None 
of the 
time 
A little  
of the 
time 
Some  
of the 
time 
Most of 
 the 
time 
All of 
 the 
time 
 
Emotional/Informational 
Support 
 
 
 
 
 
Someone you can count on to listen to 
you when you need to talk 
1 
2 
3 
4 
5 
Someone to give you information to 
help you understand the situation 
1 
2 
3 
4 
5 
Someone to give you good advice about 
a crisis 
1 
2 
3 
4 
5 
Someone to confide in or talk to about 
yourself or your problems 
1 
2 
3 
4 
5 
Someone whose advice you really want 
1 
2 
3 
4 
5 
Someone to share your most private 
worries and fears with 
1 
2 
3 
4 
5 
Someone to turn to for suggestions 
about how to deal with a personal 
problem 
1 
2 
3 
4 
5 
Someone who understands your 
problems 
1 
2 
3 
4 
5 
 
Tangible support 
 
 
 
 
 
Someone to help you if you were 
confined to bed 
1 
2 
3 
4 
5 
Someone to take you to the doctor if 
you needed it 
1 
2 
3 
4 
5 
Someone to prepare your meals if you 
were unable to do it yourself 
1 
2 
3 
4 
5 
Someone to help with daily chores if 
you were sick 
1 
2 
3 
4 
5 
 
Affectionate support 
 
 
 
 
 
Someone who shows you love and 
affection 
1 
2 
3 
4 
5 
Someone to love and make you feel 
wanted 
1 
2 
3 
4 
5 
Someone who hugs you 
1 
2 
3 
4 
5 
 
 
None 
A little  
Some  
Most of 
All of 

Version 2 11.3.21 
 
36 
 
 
of the 
time 
of the 
time 
of the 
time 
 the 
time 
 the 
time 
 
Positive social interaction 
 
 
 
 
 
Someone to have a good time with 
1 
2 
3 
4 
5 
Someone to get together with for 
relaxation 
1 
2 
3 
4 
5 
Someone to do something enjoyable 
with 
1 
2 
3 
4 
5 
 
Additional item 
 
 
 
 
 
Someone to do things with to help you 
get your mind off things 
1 
2 
3 
4 
5 
 
HIV Care Provider Social Support 
Instructions 
“Care providers have different styles in dealing with patients.  We would like to know more about 
how you feel about your care provider. Answer these questions by thinking of the main health care 
provider you see at your HIV clinic.  Please indicate how you felt during your most recent visit to 
your care provider.  Your responses are confidential.  Please be honest and truthful.  Indicate how 
much you agree with each of the following statements.”  
 
1 “Strongly disagree” 
2 “Somewhat disagree” 
3 “Neutral” 
4 “Somewhat agree” 
5 “Strongly agree” 
 
1. “I feel that my care provider has provided me with choices and options.”  
 
2. “I feel understood by my care provider.” ______ 
3. “My care provider conveys confidence in my ability to make changes.” ________ 
4. “My care provider encourages me to ask questions.” ________ 
5. “My care provider tries to understand how I see things before suggesting a new way to do 
things.” ________ 
 
Adherence and Risk Reduction Social Support 
Instructions 
These questions are about other people in your life. Please tell me how much you agree or disagree 
with each sentence. 
 
1 Strongly disagree 
2 Disagree 
3 Uncertain 
4 Agree 
5 Strongly agree 
 
1.“There are people in my life that are supportive about keeping medical appointments” _ 
2. “There are people in my life that are supportive about taking HIV medication”____ 
3.“There are people in my life that are supportive about using condoms”____ 
4.“There are people in my life that are supportive about telling your partner about your HIV 
status” ___ 
5. “There are people in my life that are supportive about avoiding drug use” ____ 
6. “There are people in my life that are supportive about avoiding alcohol use” ____ 
 
Modified Social Provisions Scale 

Version 2 11.3.21 
 
37 
 
 
Instructions 
The next set of questions are about a particular person who you rely on the most for helping you 
with your HIV treatment on a daily basis. This person is typically a friend, parent or other family 
member, or your treatment supporter (also known as a treatment buddy) but they can also be a 
peer educator, clinic counselor, or someone else. He or she may remind you to take your 
medication, make sure you get to your HIV clinic appointments, or help you in other ways.  Please 
identity this person: 
1- Treatment supporter (treatment buddy) 
2- Same-age or younger friend 
3- Older adult friend 
4- Parent 
5- Other family member (Please describe your relationship to this person:_____) 
6- Peer educator 
7- Clinic counselor 
8- Someone else (Please describe your relationship to this person:_______) 
I’m going to ask you about your relationship with this person. Please tell me how much each 
statement describes your situation by using these responses. So, for example, if you feel a 
statement is VERY TRUE you would say Strongly Agree. If you feel a statement CLEARLY does not 
describe your relationship, you would answer Strongly Disagree?” 
Strongly Disagree = 1 
Disagree =2 
Agree = 3 
Strongly Agree = 4 
 
1. This person will help me if I really need it. 
2. I do not have a close relationships with my this person. 
3. I can’t turn to this person in times of stress. 
4. This person calls on me to help him/her. 
5. This person likes the same social activities I do. 
6. This person does not think I am good at what I do. 
7. I feel responsible for taking care of this person. 
8. This person thinks the same way I do about things. 
9. I do not think that this person respects what I do. 
10. If something went wrong, this person would help me. 
11. I have a close relationship with this person that make me feel good. 
12. I can talk to this person about decisions in my life.  
13. This person values my skills and abilities. 
14. This person does not have the same interests and concerns as me. 
15. This person does not need me to help take care of them. 
16. This person is a trustworthy person I can turn to if I have problems. 
17. I feel a strong emotional tie with this person.  
18. I cannot count on this person for help if I really need it. 
19. I do not feel comfortable talking about problems with this person. 
20. This person admires my talents and abilities. 
21. I do not have a feeling of closeness with my this person. 
22. This person does not like to do the things I do. 
23. I can count on this person in an emergency. 
24. This person does not need me to take care of him/her.  
 
 
Information-Motivation-Behavioral Skills ART Adherence Questionnaire         
 
Instructions and Items 
“How much do you agree with each statement?” 
 

Version 2 11.3.21 
 
38 
 
 
1. I strongly disagree 
2. I somewhat disagree 
3. I neither agree nor disagree 
4. I somewhat agree 
5. I strong agree 
 
I1. I know how each of my current HIV medications is supposed to be taken (for example whether 
or not my current medications can be taken with food, herbal supplements, or other prescription 
medications). ____ 
I2. I know what to do if I miss a dose of any of my HIV medications (for example, whether or not 
to take the pill(s) later). ____ 
I3. Skipping a few of my HIV medications from time to time would not really hurt my health. _ 
I4 I know what the possible side effects of each of my HIV medications are. ____ 
I5. As long as I am feeling healthy, missing my HIV medications from time to time is OK.  
I6. I understand how each of my HIV medications works in my body to fight HIV. ____ 
I7. If I don’t take my HIV medications as prescribed, these kinds of medications may not work for 
me in the future. ____ 
I8. I believe that if I take my HIV medications as prescribed, I will live longer. ____ 
I9. I know how my HIV medications interact with alcohol and street drugs. ____ 
M1. I am worried that other people might realize that I am HIV+ if they see me taking my HIV 
medications. ____ 
M2. I get frustrated taking my HIV medications because I have to plan my life around them.  
M3. I don’t like taking my HIV medications because they remind me that I am HIV+.____ 
M4. I feel that my healthcare provider takes my needs into account when making 
recommendations about which HIV medications to take. ____ 
M5. Most people who are important to me who know I’m HIV positive support me in taking my 
HIV medications. 
M6. My healthcare provider doesn’t give me enough support when it comes to taking my 
medications as prescribed. ____ 
M7. It frustrates me to think that I will have to take these HIV medications every day for the rest of 
my life. ____ 
M8. I am worried that the HIV medications I have been prescribed will hurt my health. __ 
M9. It upsets me that the HIV medications I have been prescribed can affect the way I look.  
M10. It upsets me that the HIV medications I have been prescribed can cause side effects.  
B1. There are times when it is hard for me to take my HIV medications when I drink alcohol or use 
street drugs. ____ 
 
“How hard or easy would it be to do the following?” 
1. Very hard 
2. Hard 
3. Sometimes hard, sometimes easy 
4. Easy 
5. Very easy 
 
B2. How hard or easy is it for you to stay informed about HIV treatment? ____ 
B3. How hard or easy is it for you to get the support you need from others for taking your HIV 
medications (for example, from friends, family, doctor, or pharmacist)? ____ 
B4. How hard or easy is it for you to get your HIV medication refills on time? ____ 
B5. How hard or easy is it for you to take your HIV medications when you are wrapped up in what 
you are doing? ____ 
B6. How hard or easy is it for you to manage the side effects of your HIV medications?___ 
B7. How hard or easy is it for you to remember to take your HIV medications? ____ 
B8. How hard or easy is it for you to take your HIV medications because the pills are  
hard to swallow, taste bad, or make you sick to your stomach? ____ 
B9. How hard or easy is it for you to make your HIV medications part of your daily life? __ 
B10. How hard or easy is it for you to take your HIV medications when your usual routine changes 
(for example, when you travel or when you go out with your friends)? ____ 

Version 2 11.3.21 
 
39 
 
 
B11. How hard or easy is it for you to take your HIV medications when you do not feel good 
emotionally (for example, when you are depressed, sad, angry, or stressed out)? ___ 
B12. How hard or easy is it for you to take your HIV medications when you feel good physically 
and don’t have any symptoms of your HIV disease? ____ 
B13. How hard or easy is it for you to take your HIV medications when you do NOT feel good 
physically? ____ 
B14. How hard or easy is it for you to talk to your health care provider about your HIV 
medications? ____ 
 
HIV Treatment Readiness Measure (HTRM) 
Instructions 
“Please rate on a scale of 1 (strongly disagree) to 5 (strongly agree) how true each of the statements 
below are for you. By HIV health care provider, we mean your doctor, nurse practitioner or 
physician assistant.” 
 
Use the following response options: 
 
 “1=Strongly Disagree”  
 “2=Disagree”  
 “3=Neither Agree nor Disagree”  
 “4=Agree”  
 “5=Strongly Agree”  
 
1.  “I usually eat at least 3 meals each day.” ____ 
2.  “I am ready to start taking HIV medications.” ____ 
3.  “Most of the people I live with know my HIV status.” ____ 
4.  “I believe taking HIV medications can keep me healthy.” ____ 
5.  “In the past 3 months, I found myself wishing I hadn't used street drugs so often.” ___ 
6.  “Taking HIV medications would give me bad side effects.” ____ 
7.  “I would know how to contact my pharmacist or medical provider if I had problems or 
questions about HIV medications.” ____ 
8.  “I feel like I have a stable place to live.” ____ 
9.  “If I don’t take HIV medications exactly as instructed, the HIV in my body will become 
resistant to the medications.” ____ 
10. “I have a strong, trusting relationship with my medical provider.” ____ 
11.  “Even though the time may vary on the weekends, I have a regular time when I wake up and 
go to bed.” ____ 
12.  “I am anxious about my future because I have HIV.” ____ 
13.  “I would know who and when to call for refills for HIV medications.” ____ 
14.  “I sleep in the same bed almost every night.” ____ 
15.  “I can cope with my HIV diagnosis.” ____ 
16.  “Sometimes a homeless shelter is the only place I have to sleep.” ____ 
17.  “Most of my family and friends know my HIV status.” ____ 
18.  “My schedule is different every day.” ____ 
19.  “Taking HIV medication would not really help me.” ____ 
20. 
“Even when it may be difficult, I will be able to let my medical provider know if I miss 
doses of HIV medications.” ____ 
21.  “I regularly go to the clinic and meet with my medical provider.” ____ 
22. “HIV medications would be poison to my body.” ____ 
23. “I want to start taking HIV medications.” ____ 
24. “Despite having HIV, I can move forward with my life.” ____ 
25. “My household members who know I have HIV would help me remember to take my 
medication.” ____ 
26. “Taking HIV medications as prescribed would keep me from getting sick.” ____ 
27. “I feel supported by my family and friends when times are tough.” ____ 
28. “I would find it difficult to take pills at the same time every day.” ____ 

Version 2 11.3.21 
 
40 
 
 
29. “I would take HIV medications even if they made me sick at first because the side effects 
would go away.” ____ 
30. 
 “My family and friends who know I have HIV would help me remember to take my 
medications.” ____ 
31.  “In the past 3 months, I found myself wishing I hadn't drunk alcohol so often.” ____ 
32. “I know that I will be able to take all of my medication correctly.” ____ 
33. “I feel confused about what to do about my HIV.” ____ 
34. “I always eat at least 2 meals each day.” ____ 
35. “I do not feel respected by my medical provider.” ____ 
36. “Taking HIV medication would be more trouble than it's worth.” ____ 
37. “It would be important to me to take HIV medication correctly and on time every day.” ____ 
 
Use the following response options: 
 
“1=Never”  
 “2=Once”  
 “3=At least once a month”  
 “4=2-3 times per month”  
 “5=At least once a week”  
 
1. “In the past 3 months, I have been drunk.”  
2. “In the past 3 months, I have used marijuana.”  
3. “In the past 3 months, I have used drugs such as crack, meth, or cocaine.”  
 
Use the following response options: 
 
“1=Never”  
“2=Rarely”  
“3=Sometimes”  
“4=Almost Always”  
“5=Always”  
 
1. “In the past month, how often have you felt lonely or sad?”  
2. “In the past month, how often have you been told you seem sad or depressed?”  
3. “In the past month, how often have you felt isolated or lonely, even when around other 
people?”  
4. “In the past month, how often have you felt that things were going your way?”  
5. “In the past month, how often have you felt confident in your ability to handle your 
personal problems?” 
6. “In the past month, how often have you felt you could not cope with all the things you had 
to do?”  
 
“In how many different places have you lived in the past year?”  |_____|_____| 
 
 I shouldn’t tell the people I live with that I have HIV.”  
 
“1=Strongly Disagree”  
“2=Disagree”  
“3=Neither Agree nor Disagree”  
“4=Agree”  
“5=Strongly Agree”  
 
 “How many people have you told your HIV status?”  
 
“1=No one”  
“2=Only one person”  
“3=Some people”  
“4=Most people”  
“5=Everyone”  
 
“Who have you told? Check all that apply”  
 

Version 2 11.3.21 
 
41 
 
 
“1=Partner (e.g., girlfriend, boyfriend, 
husband, wife)”  
“2=Friend”  
“3=Parent or guardian”  
“4=Your Child” 
“5=Healthcare provider”  
“6=Teacher”  
“7=Classmate”  
“8=Colleague”  
“9=Employer”  
“10=Sibling” 
“11=Other relative (not parent or guardian)” 
 
“How many people you live with have you told your HIV status?”  
 
“1=No one”  
“2=Only one person”  
“3=Some people”  
“4=Most people”  
 
HIV Knowledge 
 
HIV is transmitted by: 
1. Living in the same house with an HIV patient 
True 
False 
2. Sharing utensils 
True 
False 
3. Coughing 
True 
False 
4. Hugging someone with HIV 
True 
False 
5. Having sex without a condom 
True 
False 
6. Kissing 
True 
False 
7. Having sex with multiple partners 
True 
False 
8. Mosquito that has bitten someone with HIV 
True 
False 
9. Through injection intravenous drug use 
True 
False 
10. Sharing cigarettes, food, or drink 
True 
False 
11. An HIV-infected pregnant women infecting her baby 
True 
False 
12. You can tell someone has HIV by looking at them 
True 
False 
13. As long as I’m tested I’m safe 
True 
False 
14. The medication used to treat HIV  
True 
False 
15. HIV tests 
True 
False 
HIV is prevented by: 
1. Using condoms 
True 
False 
HIV is caused by: 
2. A virus 
True 
False 
3. Spiritual forces 
True 
False 
 
ART Knowledge and Attitudes 
 
Are you worried about:  Responses are 1 Not at all, 2 A little, 3 Somewhat, 4 Very 
 
1. ART side effects? _____ 
2. ART ineffectiveness? _____ 
3. Having to take ART? _____ 
4. Friends finding out you are on ART? _____ 
5. Family finding out you are on ART? _____ 
6. Your sexual partner finding out you are on ART? _____ 
 
Do you agree or disagree: Responses are 1 Agree, 2 Disagree 
 
7. ART prevent mother-to-child HIV transmission_____ 
8. HIV can be prevented by ART after rape_____ 
9. HIV can be controlled by ART_____ 

V ersi o n 2 1 1. 3. 2 1  
 
4 2  
 
 
1 0. HI V c a n b e c ur e d b y A R T _ _ _ _ _ 
11. T a ki n g A R T pr e v e nts dis e as e pr o gr essi o n _ _ _ _ _  
1 2. N ot st arti n g A R T w h e n i n di c at e d c a n m a k e y o u si c k _ _ _ _ _  
1 3. A ntir etr o vir al m e di ci n e c a n c a us e si d e eff e cts _ _ _ _ _  
 
I m p ort a nc e of A R T a d h er e nc e: Res p o ns es ar e 1 A gr e e, 2 Dis a gr e e  
1 4. T a ki n g A R T o n sc h e d ul e pr e v e nts y o u fr o m b ei n g si c k _ _ _ _ _  
1 5. Missi n g d os es of A R T l e a ds t o dis e as e pr o gr essi o n _ _ _ _ _  
1 6. Missi n g d os es of A R T i ncr e as es ris k of tr a ns mitti n g HI V _ _ _ _ _  
 
A d ol e s c e nt Ri s k B e h a vi o r A s s e s s m e nt  
 
I n t his i nt er vi e w, y o u will us e t h e h e a d p h o n es t o list e n t o q u esti o ns a n d e nt er y o ur a ns w ers 
i nt o t h e c o m p ut er. T his will all o w y o u t o a ns w er t h e q u esti o ns i n c o m pl et e pri v ac y. N o o n e will 
b e a bl e t o h e ar t h e q u esti o ns or s e e t h e a ns w ers y o u p ut i nt o t h e c o m p ut er. Pl e as e b e as h o n est 
as y o u c a n, a n d t a k e y o ur ti m e t o r e a d a n d list e n t o e ac h q u esti o n b ef or e a ns w eri n g.                              
T h es e q u esti o ns as k a b o ut y o ur dr u g us e, s e x u al b e h a vi or, a n d m e di c al h e alt h. Pl e as e a ns w er 
E V E R Y q u esti o n, b ut o nl y gi v e O N E a ns w er p er q u esti o n. R e m e m b er, t h es e a ns w ers ar e 
c o nfi d e nti al.       
1 
B y or al s e x w e m e a n, h a v e y o u e v er p ut y o ur m o ut h o n 
a n y o n e els e’s p e nis / v a gi n a or h as a n y o n e els e p ut 
his / h er m o ut h o n y o ur v a gi n a / pri v at e p arts. B y v a gi n al 
s e x, w e m e a n h as a n y o n e e v er p ut his p e nis i nt o y o ur 
v a gi n a / pri v at e p art. B y a n al s e x w e m e a n, h as a n y o n e 
e v er p ut his p e nis i n y o ur a n us / b utt.                                                                                          
H a v e y o u e v er h a d s e x u al i nt er c o urs e of a n y ki n d ( or al, 
v a gi n al or a n al) ?  
1 = Y es 
2 = N o  [ S ki p] 
2  T h e v er y l ast ti m e y o u h a d s e x, di d y o u us e a c o n d o m ?   
1 = Y es 
2 = N o  
3  
H a v e y o u e v er h a d or al s e x ? ( B y " or al s e x" w e m e a n, 
h a v e y o u e v er p ut y o ur m o ut h o n a n y o n e els e's 
v a gi n a / p e nis or h as a n y o n e els e p ut his / h er m o ut h o n 
y o ur v a gi n a / pri v at e p arts ?)  
1 = Y es 
2 = N o [ S ki p]  
4  
I n t h e p ast 1 2 0 d a ys, h a v e y o u h a d or al s e x ( m o ut h o n 
pri v at es) ?  
1 = Y es 
2 = N o [ S ki p]  
5  
I n t h e p ast 1 2 0 d a ys, h o w m a n y ti m es h a v e y o u h a d 
or al s e x ( m o ut h o n pri v at es) ?  
( R a n g e 1-9 9 9)  
6  
I n t h e p ast 1 2 0 d a ys, w h e n y o u h a d or al s e x ( m o ut h o n 
pri v at es), h o w m a n y ti m es di d y o u us e a c o n d o m 
(r u b b er) or d e nt al d a m ? 
( R a n g e 0-9 9 9)  
7  
H a v e y o u e v er h a d v a gi n al s e x ? ( B y " v a gi n al s e x," w e 
m e a n w h e n a m a n p uts his p e nis i n a w o m a n's v a gi n a.)  
1 = Y es 
2 = N o  
8  
I n t h e p ast 1 2 0 d a ys, h a v e y o u h a d v a gi n al s e x ( p e nis i n 
v a gi n a) ?  
1 = Y es 
2 = N o [ S ki p]  
9  
I n t h e p ast 1 2 0 d a ys, h o w m a n y ti m es h a v e y o u h a d 
v a gi n al s e x ( p e nis i n v a gi n a) ?  
( R a n g e 1-9 9 9)  
1 0 
I n t h e p ast 1 2 0 d a ys, w h e n y o u h a d v a gi n al s e x ( p e nis 
i n v a gi n a), h o w m a n y ti m es di d y o u us e a c o n d o m ? 
 
11 
H a v e y o u e v er h a d a n al s e x ? ( B y " a n al s e x," w e m e a n 
w h e n a m a n p uts his p e nis i n s o m e o n e's a n us or b utt.)  
1 = Y es 
2 = N o  
1 2 
I n t h e p ast 1 2 0 d a ys, h a v e y o u h a d a n al s e x ( p e nis i n 
b utt) ?  
1 = Y es 
2 = N o [ S ki p]  

V ersi o n 2 1 1. 3. 2 1  
 
4 3  
 
 
1 3 
I n t h e p ast 1 2 0 d a ys, h o w m a n y ti m es h a v e y o u h a d 
a n al s e x ( p e nis i n b utt) ?  
( R a n g e 1-9 9 9)  
1 4 
W h e n y o u h a d a n al s e x ( p e nis i n b utt) d uri n g t h e p ast 
1 2 0 d a ys, h o w m a n y ti m es di d y o u us e a c o n d o m 
(r u b b er) ? 
( R a n g e 0-9 9 9)  
1 5 
H o w m a n y p e o pl e h a v e y o u h a d a n y ki n d of s e x wit h 
( or al, v a gi n al, a n d / or a n al) i n y o ur lif e ? 
( R a n g e 1-9 9)  
1 6 
I n y o ur lif eti m e, h a v e a n y of y o ur s e x p art n ers b e e n 
m al e ?  
1 = Y es 
2 = N o [ S ki p]  
1 7 
I n y o ur lif eti m e, h o w m a n y of y o ur s e x p art n ers h av e 
b e e n m al e ?  
( R a n g e 1-9 9)  
1 8 
I n y o ur lif eti m e, h a v e a n y of y o ur s e x p art n ers b e e n 
f e m al e ? 
1 = Y es 
2 = N o [ S ki p]  
1 9 
I n y o ur lif eti m e, h o w m a n y of y o ur s e x p art n ers h a v e 
b e e n f e m al e ?  
( R a n g e 1-9 9)  
2 0  
H o w m a n y p e o pl e h a v e y o u h a d a n y ki n d of s e x wit h 
(or al, v a gi n al a n d / or a n al) i n t h e p ast 1 2 0 d a ys ?  
( R a n g e 1-9 9)  
21  
D uri n g t h e p ast 1 2 0 d a ys, h a v e a n y of y o ur s e x p art n ers 
b e e n m al e ?  
1 = Y es 
2 = N o [ S ki p]  
2 2  
D uri n g t h e p ast 1 2 0 d a ys, h o w m a n y of y o ur s e x 
p art n ers h a v e b e e n m al e ?  
( R a n g e 1-9 9)  
2 3  
D uri n g t h e p ast 1 2 0 d a ys, h a v e a n y of y o ur s e x p art n ers 
b e e n f e m al e ?  
1 = Y es 
2 = N o [ S ki p]  
2 4  
D uri n g t h e p ast 1 2 0 d a ys, h o w m a n y of y o ur s e x 
p art n ers h a v e b e e n f e m al e ?  
( R a n g e 1-9 9)  
2 5  
I n t h e p ast 4 m o nt hs, h a v e y o u b e e n t ol d t h at y o u h a v e 
H e p atitis ?  
1 = Y es 
2 = N o [ S ki p]  
2 6  
H a v e y o u e v er h a d or b e e n t ol d b y a d o ct or or n urs e 
t h at y o u h a d G o n orr h e a ( cl a p), S y p hilis (s y p h), 
C hl a m y di a, or Tri c h o m o n as (tric h) ?  
1 = Y es 
2 = N o [ S ki p]  
2 7  H o w m a n y ti m es h a v e y o u b e e n t ol d t his ?  
( R a n g e 1-9 9)  
2 8  
I n t h e p ast 1 2 0 d a ys, h a v e y o u b e e n t ol d t h at y o u h a v e 
G o n orr h e a ( cl a p), S y p hilis (s y p h), C hl a m y di a, or 
Tri c h o m o n as (tri c h) ?  
1 = Y es 
2 = N o [ S ki p]  
2 9  
H a v e y o u e v er h a d or b e e n t ol d b y a d o ct or or n urs e 
t h at y o u h a v e g e nit al w arts ?                
1 = Y es 
2 = N o [ S ki p]  
3 0  H o w m a n y ti m es h a v e y o u b e e n t ol d t his ?  
( R a n g e 1-9 9)  
31  
I n t h e p ast 1 2 0 d a ys, h a v e y o u b e e n t ol d b y a d o ct or or 
n urs e t h at y o u h a v e g e nit al w arts ?  
1 = Y es 
2 = N o [ S ki p]  
3 2  
H a v e y o u e v er h a d or b e e n t ol d b y a d o ct or or n urs e 
t h at y o u h a d t h e f oll o wi n g m e di c al c o n diti o n ?    H er p es  
1 = Y es 
2 = N o  [ S ki p] 
3 3    
  
3 4  H o w m a n y ti m es h a v e y o u b e e n t ol d t his ?  
( R a n g e 1-9 9)  
3 5  H a v e y o u e v er b e e n or g ott e n s o m e o n e els e pr e g n a nt ?  
1 = Y es 
2 = N o [ S ki p]  
3 6  
H o w m a n y ti m es h a v e y o u b e e n or g ott e n s o m e o n e 
pr e g n a nt ?  
( R a n g e 1-9 9)  

Version 2 11.3.21 
 
44 
 
 
37 With that in mind:  How often do you practice safe sex? 
1=Always                                           
2=Almost always                             
3=Sometimes                                   
4=Almost never                               
5=Never 
38 
During the past 120 days, how often did you use a 
condom when having sex? 
1=Always                                           
2=Almost always                             
3=Sometimes                                   
4=Almost never                               
5=Never 
39 
In the next 120 days, how likely do you think it is that 
you will practice safe sex? 
1=Very sure I will                            
2=Kind of sure I will                       
3=Kind of sure I won't                   
4=Very sure I won't 
40 
In the past 120 days, did you refuse or avoid having 
sex? 
1= Yes 
2= No 
41 
On a scale of 0-100, at this moment, how IMPORTANT 
is it that you use condoms when having sex? (Please 
enter any number 0-100) Please use the following scale 
to answer this question: 0=Not important at all 
50=About as important as the other things I would like 
to achieve now 100=Most important thing in my life) 
  
42 
On a scale of 0-100, at this moment, how CONFIDENT 
are you that you will use condoms while having sex? 
(Please enter any number 0-100) Please use the 
following scale to answer this question: 0=I do not 
think I will achieve my goal 50=I have a 50% chance of 
meeting my goal 100=I think I will definitely meet my 
goal 
  
43 Have you ever given sex for money, drugs, or shelter? 
1= Yes 
2= No 
44 
In the past 120 days, have you given sex for money, 
drugs or shelter? 
1= Yes 
2= No 
45 
Have you ever purchased or bought sex with money, 
drugs, or shelter? 
1= Yes 
2= No 
46 
In the past 120 days, have you purchased or bought sex 
with money, drugs or shelter? 
1= Yes 
2= No 
47 
In the past 120 days, when you have had vaginal or anal 
sex, how often were YOU using alcohol, marijuana, or 
other drugs? 
1=Never                                             
2=Less than half the time              
3=About half the time                    
4=More than half the time            
5=Always 
48 
In the past 120 days, when you have had vaginal or anal 
sex, how often was your PARTNER using alcohol, 
marijuana, or other drugs? 
1=Never                                             
2=Less than half the time              
3=About half the time                    
4=More than half the time            
5=Always 

V ersi o n 2 1 1. 3. 2 1  
 
4 5  
 
 
4 9  
I n t h e p ast 1 2 0 d a ys, w hic h of t h es e m et h o ds h a v e y o u 
us e d t o pr e v e nt pr e g n a nc y ? ( C h o os e all t h at a p pl y.)  
1 = C o n d o ms                                          
2 = T h e Pill                                           
3 = A di a p hr a g m                                     
4 = A c er vi c al c a p                                 
5 = G els, cr e a ms, s u p p osit ori es, 
or f o a ms                                               
6 = D e p o Pr o v er a                                 
7 = Ot h er                                                
8 = N o birt h c o ntr ol m et h o ds i n 
t h e p ast 9 0 
5 0  H a v e y o u e v er s m o k e d ci g ar ett es ?  
1 = Y es 
2 = N o  
51  
H o w ol d w er e y o u w h e n y o u first st art e d s m o ki n g 
ci g ar ett es ?  
( R a n g e 1-9 9)  
6 6  I n t h e l ast 1 2 0 d a ys, h a v e y o u s m o k e d ci g ar ett es ? 
1 = Y es 
2 = N o  
6 7  
H o w m a n y d a ys di d y o u s m o k e ci g ar ett es i n t h e l ast 
1 2 0 d a ys ? 
( R a n g e 1-9 9)  
6 8  H a v e y o u e v er us e d al c o h ol ( b e er, wi n e, etc.) ?  
1 = Y es 
2 = N o  
6 9  
H o w ol d w er e y o u w h e n y o u h a d y o ur first dri n k of 
alc o h ol,  
ot h er t h a n a f e w si ps ?  
( R a n g e 1-9 9)  
7 0  
I n t h e p ast 1 2 0 d a ys, h a v e y o u e v er us e d al c o h ol ( b e er, 
wi n e, etc.) ?  
1 = Y es 
2 = N o  
71  
H o w m a n y d a ys di d y o u us e al c o h ol i n t h e l ast 1 2 0 
d a ys ?  
( R a n g e 1-9 9)  
7 2  
H o w m a n y ti m es di d y o u us e al c o h ol i n t h e l ast 
M O N T H ?  
( R a n g e 1-9 9)  
7 3  
F or t h e n e xt q u esti o n, y o u will n e e d t o k n o w w h at w e 
m e a n  
b y a " dri n k."  F or i nst a nc e, a dri n k e q u als 1 2 o u nc es of 
b e er, 1 o u nc e of li q u or (s u c h as w his k y, g i n, or v o d k a), 
or 6 o u nc es of wi n e.  
n o n e  
7 4  
Of t h e d a ys w h e n y o u w er e dri n ki n g, a b o ut h o w  
m a n y dri n ks di d y o u us u all y h a v e e ac h d a y ?  
( R a n g e 1-9 9)  
7 5  
Of t h e d a ys w h e n y o u w er e dri n ki n g, o n h o w  
m a n y d a ys di d y o u g et b uzz e d or dr u n k o n al c o h ol ?    
( R a n g e 1-9 9)  
7 6  W h e n w as t h e l ast ti m e y o u us e d a n y al c o h ol ?  
1 = Wit hi n t h e p ast w e e k 
2 = 2 w e e ks a g o  
3 = 3 -4 w e e ks  
4 = M or e t h a n 4 w e e ks a g o  
7 7  W h e n y o u dri n k, h o w oft e n d o y o u g et dr u n k ?  
0 = D o n't dri n k                                        
1 = St o p b ef or e g ettin g dr u n k                   
2 = Al m ost al w a ys st o p b ef or e 
g etti n g dr u n k                                                     
3 = St o p b ef or e g etti n g dr u n k 
m or e t h a n h alf t h e ti m e                             
4 = G et dr u n k m or e t h a n h alf 
t h e ti m e                                         
5 = Us u all y g et dr u n k  

V ersi o n 2 1 1. 3. 2 1  
 
4 6  
 
 
7 8  
H o w li k el y is it t h at y o u WI L L dri n k al c o h ol i n t h e 
f ut ur e ? ( pi c k a n u m b er fr o m 1-1 0) 
1 = U nli k el y                             
5 = S o m e w h at Li k el y                
1 0 = V er y Li k el y 
T h e f oll o wi n g q u esti o ns ar e a b o ut dr u gs. B y “ dr u gs” w e m e a n str e et dr u gs or pr es cri pti o n 
m e dic ati o ns t h at y o u t o o k m or e t h a n w as pr es cri b e d, or t h at w as n ot pr escri b e d f or y o u. 
R e m e m b er, d o n ot i ncl u d e dr u gs t h at y o u t o o k o nl y as pr es cri b e d.  
 
7 8  
H a v e y o u e v er us e d a n y f or m of m arij u a n a, s uc h as p ot, 
w e e d, h as his h, gr ass or g a nj a ?  
1 = Y es 
2 = N o  
7 9  
H o w ol d w er e y o u w h e n y o u tri e d m arij u a n a f or t h e 
first ti m e ? 
( R a n g e 1-9 9)  
8 0  
I n t h e l ast 1 2 0 d a ys, h a v e y o u us e d a n y f or m of 
m arij u a n a, s uc h as p ot, w e e d, h as his h, gr ass or g a nj a ?  
1 = Y es 
2 = N o  
81  
I n t h e l ast 1 2 0 d a ys, h o w m a n y d a ys di d y o u us e 
m arij u a n a ?  
( R a n g e 1-9 9)  
8 2  
I n t h e l ast M O N T H, h o w m a n y ti m es di d yo u us e 
m arij u a n a ?  
( R a n g e 1-9 9)  
8 3  W h e n w as t h e l ast ti m e y o u us e d a n y m arij u a n a ?  
1 = Wit hi n t h e p ast w e e k 
2 = 2 w e e ks a g o  
3 = 3 -4 w e e ks  
4 = M or e t h a n 4 w e e ks a g o  
8 4  
Wit h w h o m h a v e y o u s m o k e d m arij u a n a ? C h ec k all 
t h at a p pl y. 
1 = P ar e nt 
2 = Br ot h er / Sist er  
3 = Ot h er R el ati v e  
4 = Fri e n d  
5 = B o yfri e n d / Girlfri e n d  
6 = T e ac h er / C o ac h  
7 = T h er a pist  
8 = A c q u ai nt a nc e  
9 = B y m ys elf  
9 5  H a v e y o u e v er us e d m et h a m p h et a mi n es (s p e e d) ?  
1 = Y es 
2 = N o  
9 6  
H o w ol d w er e y o u w h e n y o u first st art e d usi n g 
m et h a m p h et a mi n es ?  
( R a n g e 1-9 9)  
9 7  
I n t h e p ast 12 0 d a ys, h a v e y o u us e d 
m et h a m p h et a mi n es ?  
1 = Y es 
2 = N o  
9 8  
H o w m a n y d a ys i n t h e p ast 1 2 0 d a ys di d y o u us e 
m et h a m p h et a mi n es ?  
( R a n g e 1-9 9)  
9 9  
H o w m a n y d a ys i n t h e p ast 3 0 d a ys h a v e y o u us e d 
m et h a m p h et a mi n es ?  
( R a n g e 1-9 9)  
1 0 0 
H a v e y o u e v er us e d a n y t y p e of c o c ai n e ( c o k e, p o w d er, 
cr ac k, or fr e e b as e) ?  
1 = Y es 
2 = N o  
1 01 
H o w ol d w er e y o u w h e n y o u first st art e d usi n g a n y t y p e 
of c o c ai n e ( c o k e, p o w d er, cr ac k, or fr e e b as e) ?  
( R a n g e 1-9 9)  
1 0 2 
I n t h e p ast 1 2 0 d a ys, h a v e y o u us e d a n y t y p e of c oc ai n e 
( c o k e, p o w d er, cr ac k or fr e e b as e) ?  
1 = Y es 
2 = N o  
1 0 3 
H o w m a n y d a ys i n t h e p ast 1 2 0 d a ys di d y o u us e a n y 
t y p e of c o c ai n e (c o k e, p o w d er, cr ac k, or fr e e b as e) ? 
( R a n g e 1-9 9)  
1 0 4 
H o w m a n y d a ys i n t h e p ast 3 0 d a ys h a v e y o u us e d a n y 
t y p e of c o c ai n e (c o k e, p o w d er, cr ac k, or fre e b as e) ?  
( R a n g e 1-9 9)  

V ersi o n 2 1 1. 3. 2 1  
 
4 7  
 
 
1 0 5 
W h e n w as t h e l ast ti m e y o u us e d a n y t y p e of c o c ai n e  
( c o k e, p o w d er, cr ac k, or fr e e b as e) ? 
1 = Wit hi n t h e p ast w e e k 
2 = 2 w e e ks a g o  
3 = 3 -4 w e e ks  
4 = M or e t h a n 4 w e e ks a g o  
11 0 
H a v e y o u e v er us e d cl u b dr u gs ( e cst as y " x", S p eci al K, 
et c. ) ? 
1 = Y es 
2 = N o  
111 
H o w ol d w er e y o u w h e n y o u first st art e d usi n g cl u b 
dr u gs ( e cst as y " x", S p eci al K, et c.) ?  
( R a n g e 1-9 9)  
11 2 
I n t h e p ast 1 2 0 d a ys, di d y o u us e cl u b dr u gs ( e cst as y, 
" x", S p eci al K, et c.) ? 
  
11 3 
H o w m a n y d a ys i n t h e p ast 1 2 0 d a ys di d y o u  us e cl u b 
dr u gs ( e cst as y " x", S p eci al K, et c.) ?  
( R a n g e 1-9 9)  
11 4 
H o w m a n y d a ys i n t h e p ast 3 0 d a ys h a v e y o u us e d a 
cl u b dr u g ( e cst as y " x", S p e ci al K, etc.) ?  
( R a n g e 1-9 9)  
11 5 
W h e n w as t h e l ast ti m e y o u us e d a cl u b dr u g ( e cst as y 
" x", S p eci al K, et c.)?  
1 = Wit hi n t h e p ast w e e k 
2 = 2 w e e ks a g o  
3 = 3 -4 w e e ks  
4 = M or e t h a n 4 w e e ks a g o  
11 6 
H a v e y o u e v er us e d o v er t h e c o u nt er or pr es cri pti o n 
m e dic ati o n t o  
g et hi g h (c o u g h s yr u p, Rit ali n, O x y c o nti n, Vi c o di n, 
et c.) ?  
1 = Y es 
2 = N o  
11 7 
H o w ol d w er e y o u w h e n y o u first st art e d usi n g o v er t h e 
c o u nt er or pr escri pti o n m e dic ati o n t o g et hi g h ( c o u g h 
s yr u p, Rit ali n, O x y c o nti n, Vi c o di n, et c.) ? 
( R a n g e 1-9 9)  
11 8 
I n t h e p ast 1 2 0 d a ys, h a v e y o u us e d o v er t h e c o u nt er or 
pr escri pti o n m e di c ati o n t o g et hi g h (c o u g h s yr u p, 
Rit ali n, O x y c o nti n, Vi c o di n, etc.) d a ys ?  
1 = Y es 
2 = N o  
11 9 
I n t h e p ast 1 2 0 d a ys, h o w m a n y ti m es di d y o u us e o v er 
t h e c o u nt er or pr es cri pti o n m e di c ati o n t o g et hi g h 
( c o u g h s yr u p, Rit ali n, O x y c o nti n, Vic o di n, et c.) ? 
( R a n g e 1-9 9)  
1 2 0 
H o w m a n y d a ys i n t h e p ast 3 0 d a ys h a v e y o u us e d o v er 
t h e c o u nt er or pr es cri pti o n m e di c ati o n t o g et hi g h 
( c o u g h s yr u p, Rit ali n, O x y c o nti n, Vic o di n, et c.)?  
( R a n g e 1-9 9)  
1 21 
W h e n w as t h e l ast ti m e y o u us e d a n y t y p e of o v er t h e 
c o u nt er m e di c ati o n or pr es cri pti o n m e di c ati o n t o g et 
hi g h (c o u g h s yr u p, Rit ali n, O x y c o nti n, Vi c o di n, etc.) ?  
1 = Wit hi n t h e p ast w e e k 
2 = 2 w e e ks a g o  
3 = 3 -4 w e e ks  
4 = M or e t h a n 4 w e e ks a g o  
1 2 2 
H a v e y o u e v er us e d h er oi n (s m ac k, j u n k, or C hi n a 
W hit e) ?  
1 = Y es 
2 = N o  
1 2 3 
I n t h e p ast 1 2 0 d a ys, h a v e y o u e v er us e d h er oi n (s m ac k, 
j u n k, C hi n a W hit e) 
1 = Y es 
2 = N o  
1 2 4 
I n t h e p ast 1 2 0 d a ys, h o w m a n y ti m es di d y o u i nj e ct 
h er oi n ?  
( R a n g e 1-9 9)  
1 2 5 
I n t h e p ast 3 0 d a ys, h o w m a n y ti m es di d y o u i nj e ct 
h er oi n ?  
( R a n g e 1-9 9)  
1 2 6 
H o w i m p ort a nt is it f or y o u N O T t o us e dr u gs ? ( pic k a 
n u m b er fr o m 1 -1 0) 
1 = N ot i m p ort a nt                              
5 = S o m e w h at i m p ort a nt 
1 0 = V er y i m p ort a nt 

Version 2 11.3.21 
 
48 
 
 
127 
How likely is it that you WILL use drugs in the future? 
(pick a number from 1-10) 
1=Unlikely                             
5=Somewhat Likely                
10=Very Likely 
128 
When you use drugs, how often do you get high or 
stoned? 
1=Don't use                                       
2=Stop before getting stoned       
3=Almost always stop before 
getting stoned                                  
4=Stop before getting stoned 
more than half the time                 
5=Get stoned more than half 
the time                                         
6=Usually get stoned 
129 Where do you usually drink/use? 
0=Nowhere (don't drink/use) 
1=Car/vehicle/motorcycle            
2=Home                                 
3=Friend's house                         
4=Party or social event                  
5=Park or beach                  
6=Shopping mall, rec center        
7=School                                       
8=Work                               
9=Anywhere and everywhere 
10=Restaurant                              
11=Other 
130 Please list the other place you usually drink/use. 
131 Who do you drink/use with? 
0=Not applicable/don't drink 
or use                                              
1=Alone                                 
2=Casual acquaintances                
3=Friends 
4=Partner/boyfriend/girlfriend  
5=Family members 
 
HIV Lay Beliefs 
Items 
1.  Witchcraft plays a role in HIV transmission. 
True 
False 
2.  Some traditional healers can cure AIDS. True 
False 
3.  Vitamins and fresh fruits and vegetables can cure AIDS. True 
False 
4.  HIV was created by some group, such as the CIA, to kill Africans. 
 True False 
5.  There is a cure for AIDS, but it is being withheld from Africa. 
True 
False 
6.  Free condoms sometimes contain AIDS. True 
False 
7.  Antiretroviral treatments are poisonous and make people sicker. 
True 
False 
 
Perceived Access to HIV Medical Care Services 
 
Instructions 
Please reflect on the degree to which you agree or disagree with the following statements related to 
your HIV medical care.   

Version 2 11.3.21 
 
49 
 
 
 
1 = Strongly disagree 
2 = Disagree 
3 = Neither agree nor disagree 
4 = Agree 
5 = Strongly agree 
 
1. Sometimes I go without the HIV medical care I need because it’s too expensive. 
2. It is hard for me to get HIV medical care in an emergency.  
3. If I have emotional problems, I have easy access to a mental health counselor.  
4. If I need hospital HIV medical care, I can get admitted without any trouble.  
5. I am able to get HIV medical care whenever I need it.  
6. Places where I can get HIV medical care are very conveniently located.  
7. I have easy access to HIV treatment counselors.  
Perceived HIV-related Stigma 
 
Use the following responses: 1 Strongly disagree 2 Disagree 3 Agree 4 Strongly agree 
 
1. I feel I am not as good a person as others because I have HIV ______ 
2. Having HIV makes me feel unclean ______ 
3. Having HIV makes me feel I am a bad person ______ 
4. People’s attitudes about HIV make me feel worse about myself ______ 
5. I feel guilty because I have HIV ______ 
6. Having HIV in my body is disgusting to me ______ 
7. People I know would treat someone with HIV as an outcast ______ 
8. People I know would be uncomfortable around someone with HIV ______ 
9. People I know believe that a person with HIV is dirty ______ 
10. People I know would reject someone with HIV ______ 
11. People I know would not want someone with HIV around their children ______ 
12. People I know think that a person with HIV is disgusting______ 
 
Concerns about Disclosure Tool 
 
Questions and Filters 
Response 
Indicate your agreement or disagreement with each statement: 
a) I am very careful who I tell that I have HIV. ___ 
b) I don’t feel the need to hide the fact that I have HIV.___ 
c) I worry that people may judge me when they learn I have HIV.___ 
d) Telling someone I have HIV is risky___ 
e) Since learning I have HIV, I worry about people discriminating against me.____ 
f) It is easier to avoid new friendships than worry about telling someone that I have HIV ____ 
g) I work hard to keep my HIV a secret___ 
1 Strongly 
Disagree 
2 Disagree 
3 Agree 
4 Strongly 
Agree 
 
Past 30-Day ART Adherence 
Instructions 
1. In the last 30 days, on how many days did you miss at least one dose of any of your HIV 
medication? 
Write in number of days: ____ (0–30) 
 
2. In the last 30 days, how good a job did you do at taking your HIV medication in the way you 
were supposed to? □ Very poor □ Poor □ Fair □ Good □ Very good □ Excellent 
 

Version 2 11.3.21 
 
50 
 
 
3. In the last 30 days, how often did you take your HIV medication in the way you were supposed 
to? □ Never □ Rarely □ Sometimes □ Usually □ Almost always □ Always 
 
Antiretroviral Adherence: ACTG  
List the medications you take for HIV. 
 
 
 
 
 
 
 
The next section of the questionnaire asks about the study medications that you may have 
missed taking over the last four days. Please complete the following table below. 
 
 
IF YOU TOOK ONLY A PORTION OF A DOSE ON ONE OR MORE OF THESE DAYS, 
PLEASE REPORT THE DOSE(S) AS BEING MISSED. 
 
HOW MANY DOSES DID YOU MISS 
. . . 
Step 1 
Step 2 
Step 3 
Step 4 
Step 5 
Names of your 
anti-HIV study 
Yesterday 
Day before 
3 days ago 
4 days ago 
drugs 
yesterday 
(2 days ago) 
• doses 
• doses 
• doses 
• doses 
• doses 
• doses 
• doses 
• doses 
 
C. Most anti-HIV medications need to be taken on a schedule, such as “2 times a day” or “3 times 
a day” or “every 8 hours.” How closely did you follow your specific schedule over the last four 
days? 
 
Never 
Some Of 
About Half 
Most Of 
All Of 
0 
The Time 
Of The Time 
The Time 
The Time 
1 
2 
3 
4 
 
D. Do any of your anti-HIV medications have special instructions, such as “take with food” or 
“on an empty stomach” or “with plenty of fluids?” Yes___ No ____ 
 
If Yes, how often did you follow those special instructions over the last four days? 
 
Never 
Some Of 
About Half 
Most Of 
All Of 
0 
The Time 
Of The Time 
The Time 
The Time 
1 
2 
3 
4 
 
Some people find that they forget to take their pills on the weekend days. Did you miss any of your 
anti-HIV medications last weekend— last Saturday or Sunday? Yes___ No ___ 
Study Drug Name/Dose 
# Pills Each Time 
# Times Per Day 
(Pills Each Dose) 
(Doses Per Day) 

Version 2 11.3.21 
 
51 
 
 
When was the last time you missed any of your medications? Check one. 
 
5     Within the past week 
4     1-2 weeks ago 
3     2-4 weeks ago 
2     1-3 months ago 
1     More than 3 months ago 
0     Never skip medications or 
not applicable 
 
People may miss taking their medications for various reasons. Here is a list of possible reasons 
why you may miss taking your medications. How often have you missed taking your medications 
because you: (Circle one response for each question.)  
Never 
Rarely 
Sometimes 
Often
1. Were away from home? 
    0 
1 
2 
3 
2. Were busy with other things? 
    0 
1 
2 
3 
3. Simply forgot? 
0 
1 
2 
3 
4. Had too many pills to take? 
0 
1 
2 
3 
5. Wanted to avoid side effects? 
0 
1 
2 
3 
6. Did not want others to notice 
0 
1 
2 
3 
you taking medication? 
7. Had a change in daily routine? 
0 
1 
2 
3 
8. Felt like the drug was 
0 
1 
2 
3 
toxic/harmful? 
9. Fell asleep/slept through 
0 
1 
2 
3 
dose time? 
10. Felt sick or ill? 
0 
1 
2 
3 
11. Felt depressed/overwhelmed? 
0 
1 
2 
3 
12. Had problems taking pills at 
0 
1 
2 
3 
specified times (with meals, 
on empty stomach, etc.)? 
13.  Ran out of pills? 
0 
1 
2 
3 
14. Felt good? 
0 
1 
2 
3 
 
Antiretroviral Adherence: Visual Analog Scale 
This measure of past 4-week antiretroviral adherence has been used in resource-limited settings in 
sub-Saharan Africa for patients with low literacy (Erb et al., 2017).  
 
 
Physical Health 
 
Choose one option for each questionnaire item. 
1. In general, would you say your health is: 
 
1 - Excellent 
2 - Very good 
3 - Good 
4 - Fair 
5 – Poor 

Version 2 11.3.21 
 
52 
 
 
 
2. Compared to one year ago, how would you rate your health in general now? 
 
1 - Much better now than one year ago 
2 - Somewhat better now than one year ago 
3 - About the same 
4 - Somewhat worse now than one year ago 
5 - Much worse now than one year ago 
 
The following items are about activities you might do during a typical day. Does your health 
now limit you in these activities? If so, how much? Yes, limited a lot. Yes, limited a little. No, not 
limited at all.  
 
3. Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports 
4. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf 
5. Lifting or carrying groceries 
6. Climbing several flights of stairs 
7. Climbing one flight of stairs 
8. Bending, kneeling, or stooping 
9. Walking more than two kilometers 
10. Walking one kilometer 
11. Walking one block 
12. Bathing or dressing yourself 
 
 
During the past 4 weeks, have you had any of the following problems with your work or other 
regular daily activities as a result of your physical health? Yes or No 
13. Cut down the amount of time you spent on work or other activities 
14. Accomplished less than you would like 
15. Were limited in the kind of work or other activities 
16. Had difficulty performing the work or other activities (for example, it took extra 
effort) 
 
 
  
During the past 4 weeks, have you had any of the following problems with your work or other 
regular daily activities as a result of any emotional problems (such as feeling depressed or 
anxious)?  Yes or No 
 
17. Cut down the amount of time you spent on work or other activities____ 
18. Accomplished less than you would like_____ 
19. Didn't do work or other activities as carefully as usual_____ 
  
During the past 4 weeks, to what extent has your physical health or emotional problems 
interfered with your normal social activities with family, friends, neighbors, or groups? 
 
1 - Not at all 
2 - Slightly 
3 - Moderately 
4 - Quite a bit 
 
21. How much bodily pain have you had during the past 4 weeks? 
 1 - None 
 2 - Very mild 
 3 - Mild 
 4 - Moderate 
 5 - Severe 
 6 - Very severe 
 
 
1. During the past 4 weeks, how much did pain interfere with your normal work 
(including both work outside the home and housework)? 
 
 1 - Not at all 

Version 2 11.3.21 
 
53 
 
 
 2 - A little bit 
 3 - Moderately 
 4 - Quite a bit 
5 – Extremely 
 
These questions are about how you feel and how things have been with you during the past 4 
weeks. For each question, please give the one answer that comes closest to the way you have been 
feeling. How much of the time during the past 4 weeks... 
 
Responses: All, most, some, a good bit, a little, or none of the time. 
23. Did you feel full of energy? 
24. Have you been a very nervous person? 
25. Have you felt so sad that nothing could cheer you up? 
26. Have you felt calm and peaceful? 
27. Did you have a lot of energy? 
28. Have you felt sad and depressed? 
29. Did you feel worn out? 
30. Have you been a happy person? 
31. Did you feel tired? 
 
C. During the past 4 weeks, how much of the time has your physical health or emotional 
problems interfered with your social activities (like visiting with friends, relatives, etc.)? 
 
 1 - All of the time 
 2 - Most of the time 
 3 - Some of the time 
 4 - A little of the time 
5 - None of the time 
 
How TRUE or FALSE is each of the following statements for you. Definitely true, mostly true, 
don’t know, mostly false, definitely false. 
 
33. I seem to get sick a little easier than other people 
34. I am as healthy as anybody I know 
35. I expect my health to get worse 
36. My health is excellent 
37a. Please tell me the year when you first tested positive for HIV. ____________ 
37b. Please tell me the month when you first tested positive for HIV. ___________ 
38a. Please tell me the year when you first started taking ART. ____________ 
38b. Please tell me the month when you first started taking ART. ___________ 
39. What was your CD4 count at your most recent laboratory test? ___________ 
40. What was your viral load at your most recent laboratory test? _______________ 
41. Have you ever received a diagnosis of AIDS? Yes or No. 
42. In the past 6 months, how many doctor’s appointments with your HIV care provider did you have 
scheduled? _______________________ 
43. In the past 6 months, how many doctor’s appointments with your HIV care provider did you 
attend? _______________________ 
44. In the past 6 months, how many doctor’s appointments with your HIV care provider did you miss? 
_______________________ 

Version 2 11.3.21 
 
54 
 
 
HIV-related Health Anxiety 
Instructions 
 
To answer these questions ask yourself, “During the past week, how often has thinking about HIV 
infection/AIDS and my health affected this area of my life?” 
Not at all 1  
A little bit 2  
Sometimes 3  
Often 4  
Always 5 
 
1. You were thinking about HIV infection/AIDS and your health, and because of that you had 
trouble sleeping--either getting to sleep or sleeping through the whole night. ____ 
2. You were thinking about HIV infection/AIDS and your health, and because of that you had no 
appetite, or felt like eating very little. ____ 
3. You were thinking about HIV infection/AIDS and your health, and because of that you had no 
desire to go out and do any social activities with other people. ____ 
4. You were thinking about HIV infection/AIDS and your health, and because of that you had 
trouble concentrating at school or work because of worrying about your health ____ 
 
CES-D: Depressive Symptoms 
Instructions:   
I’m now going to give you a list of the ways you might have felt or behaved recently.  Please tell me 
how often you have felt this way during the past week.    
Rarely or none of the time (less than 1 day) – 1 
Some or a little of the time  (1-2 days) – 2 
Occasionally or a moderate amount of time (3-4 days) – 3 
Most or all the time  (5-7 days) – 4 
 
1. I was bothered by things that usually don’t bother me. 
2. I did not feel like eating; my appetite was poor. 
3. I felt that I could not stop being sad even with help from family and friends. 
4. I felt that I was just as good as other people. 
5. I had trouble keeping my mind on what I was doing. 
6. I felt depressed. 
7. I felt that everything I did was an effort. 
8. I felt hopeful about the future. 
9. I thought my life had been a failure. 
10. I felt fearful. 
11. My sleep was restless. 
12. I was happy. 
13. I talked less than usual. 
14. I felt lonely. 
15. People were unfriendly. 
16. I enjoyed life. 
17. I had crying spells. 
18. I felt sad. 
19. I felt that people disliked me. 
20. I could not get “going”. 
Mental Health Symptoms 
Instructions: 

Version 2 11.3.21 
 
55 
 
 
Below is a list of problems people sometimes have.  For each please indicate how much that 
problem has distressed or bothered you during the past 14 days including today.  How much have 
you been distressed or bothered during the past 14 days, (including today) by: 
 
 
NOT AT 
ALL 
A LITTLE 
BIT 
MODERAT
ELY 
QUITE A 
BIT 
EXTREMEL
Y 
1. Faintness or dizziness 
0 
1 
2 
3 
4 
2. Feeling no interest in things 
0 
1 
2 
3 
4 
3. Nervousness or shakiness inside 
0 
1 
2 
3 
4 
4. Pains in heart or chest 
0 
1 
2 
3 
4 
5. Feeling lonely 
0 
1 
2 
3 
4 
6. Feeling tense or keyed up 
0 
1 
2 
3 
4 
7. Nausea or upset stomach 
0 
1 
2 
3 
4 
8. Feeling blue 
0 
1 
2 
3 
4 
9. Suddenly scared for no reason 
0 
1 
2 
3 
4 
10. Trouble getting your breath 
0 
1 
2 
3 
4 
11. Feelings of worthlessness 
0 
1 
2 
3 
4 
12. Spells of terror or panic 
0 
1 
2 
3 
4 
13. Numbness or tingling in parts of your body 
0 
1 
2 
3 
4 
14. Feeling hopeless about the future 
0 
1 
2 
3 
4 
15. Feeling so restless you couldn’t sit still 
0 
1 
2 
3 
4 
16. Feeling weak in parts of your body 
0 
1 
2 
3 
4 
17. Thoughts of ending your life 
0 
1 
2 
3 
4 
18. Feeling fearful 
0 
1 
2 
3 
4 
 
Perceived Neighborhood Quality 
The following is measure of perceived neighborhood quality originally developed in the U.S.  
Instructions: Please answer the following questions about your neighborhood. 
True – 1 False - 2 
01: When there is a problem around here the neighbours get together to deal with it 
02: This is a close-knit neighbourhood 
03: When you get right down to it no one in your neighbourhood cares much about what happens 
to you 
04: There are adults in your neighbourhood that children can look up to 
05: People around here are willing to help their neighbours 
06: People in this neighbourhood generally dont get along with each other 
07: You can count on adults in your neighbourhood to watch out that children are safe and dont 
get into trouble 
08: If you had to borrow 40 cedi in an emergency you could borrow it from a neighbor. 
09: When you are away from home you know that your neighbours will keep their eyes open for 
possible trouble at your place 
10: In the neighbourhood people mostly go their own way 
11: People in your neighbourhood share the same values 
12: If you were sick you could count on your neighbours to go to the market for you 
13: People in your neighbourhood can be trusted 
14: Parents in your neighbourhood know their childrens friends 
15: Children in your neighbourhood have nowhere to play but the street 

Version 2 11.3.21 
 
56 
 
 
16: Adults in your neighbourhood know who the local children are 
17: The equipment and buildings in the park or open area that is closest to where you live are well 
kept 
18: The open area closest to where you live is safe during the day 
19: The open area closest to where you live is safe at night 
20: Parents in your neighbourhood generally know each other 
21: The street committee in my neighbourhood is respected 
22: The street committee in my neighbourhood provides protection 
23: Church groups in my neighbourhood provide food 
24: There is a neighbourhood watch program in my neighbourhood 
25: The neighbourhood watch program protects people in my neighbourhood 
26: There are gangs in my neighbourhood 
27: Gangs make my neighbourhood unsafe 
28: If a group of neighbourhood children were skipping school and hanging out on a street corner 
how likely is it that your neighbours would do 
29: If some children were damaging a local building how likely is it that your neighbours would do 
something about it? 
30: If a child showed disrespect to an adult how likely is it that people in your neighbourhood 
would scold that child or tell the childs parent 
31: What do people in your neighbourhood think about people your age drinking alcohol or getting 
drunk? 
32: What do people in your neighbourhood think about people your age having sex? 
33: What do people in your neighbourhood think about people your age smoking cigarettes? 
34: What do people in your neighbourhood think about people your age using drugs? 
35: What do people in your neighbourhood think about people your age joining gangs? 
36: How easy is it for you to pick out people who are outsiders or who obviously dont live in your 
neighbourhood? 
37: How safe do you feel your neighbourhood is? 
 
Use of Technology 
Do you own a cellphone? 
1- Yes 2- No 
Can you access the internet on your phone?  1- Yes 2- No 
Do you own a smartphone (e.g., iPhone)? 
 1- Yes 2- No 
Can you send text messages on your phone?  1- Yes 2- No 
How often do you send text messages? 
 
1- Every day 
 
2- Three to four times a week 
 
3- Once or twice a week 
 
4- Once or twice a month 
 
5- Less than once per month 
What do you use your cellphone to do? (Click all that apply) 
 
1- Make phone calls 
 
2- Send text messages 
 
3- Play games 
 
4- Access internet 
 
5- Other ______ 
Do you use pre-paid phone cards?  
 1- Yes 2- No 
How much cedi a week do you spend on pre-paid phone cards? 
_________________ 
Do you pay for a plan to make phone calls or send text messages?  1- Yes 2- No 
How often do you play videogames on a console (computer, Xbox, Playstation)?   
1- Every day 
 
2- Three to four times a week 
 
3- Once or twice a week 
 
4- Once or twice a month 
 
5- Less than once per month 
How often do you play games on your phone? 
 
1- Every day 
 
2- Three to four times a week 
 
3- Once or twice a week 
 
4- Once or twice a month 
 
5- Less than once per month 

Version 2 11.3.21 
 
57 
 
 
Do you own a computer or laptop at home?  1- Yes 2- No 
How easy or hard is it for you to access a laptop or computer? 
 
1- Very easy 
 
2- Easy 
 
3- Hard 
 
4- Very Hard 
How easy or hard is it for you to access the internet on your phones? 
 
1- Very easy 
 
2- Easy 
 
3- Hard 
 
4- Very Hard 
How easy or hard is it for you to access the internet on a computer? 
 
1- Very easy 
 
2- Easy 
 
3- Hard 
 
4- Very Hard 
How easy or hard is it for you to access wifi on your computer or phone?  
1- Very easy 
 
2- Easy 
 
3- Hard 
 
4- Very Hard 
Can you access the internet daily or almost daily? 
 1- Yes 2- No 
 
 
SATISFICATION SURVEYS 
 
Client Satisfaction Questionnaire 
 
Please help us improve our program by answering some questions about the Intervention. We are 
interested in your honest opinions, whether they are positive or negative. Please answer all of the 
questions. We also welcome your comments and suggestions.  Thank you very much; we really 
appreciate your help. 
 
Circle your answer:  
 
1. How would you rate the quality of the game you played? Excellen, Good, Fair, or Poor. 
2. Did you get information you wanted? No, definitely. No, not really. Yes, generally. Yes, 
definitely. 
3. Would this game meet your needs? 
  - Almost all of my needs would be met 
  -Most of my needs would be met 
  -Only a few of my needs would be met 
  - None of my needs would be met 
4. If a friend were interested in a similar game, would you recommend this one? No definitely not. 
No, I don’t think so. Yes, I think so. Yes definitely.  
5.  How satisfied are you with the amount of activities involved with the game? 
Quite satisfied, Indifferent or mildly dissatisfied, mostly satisfied, very satisfied. 
6. Did the game help you to deal more effectively with issues important to you? Yes, it helped a 
great deal. Yes, it helped. No, it really didn’t help. No, it seemed to make things worse. 
7.  In an overall, general sense, how satisfied are you with the game. Very satisfied. Mostly 
satisfied. Indifferent or mildly dissatisfied. Quite dissatisfied.  
8.Would you want to use the game at home and in the future? No definitely not. No, I don’t think 
so. Yes, I think so. Yes, definitely.  
 
Session Evaluation Form 
 
1 Strongly Agree 
2 Agree 
3 Disagree 
4 Strongly Disagree 

Version 2 11.3.21 
 
58 
 
 
1.  I learned a lot from this game 
 
 
 
2.  I will be able to apply what I learned 
from this game in my life. 
 
 
3.  I was able to do the activities. 
 
4.  The game was well organized. 
 
5.  The topics in the game were interesting 
6. The presentation of the game stimulated my interest in the material. 
7.  The topics of the game were relevant 
to my life  
8.  The game was enjoyable.  
9.  I would recommend this game to others.   
10. I felt comfortable during with the game.    
11. What aspect of the game did you find the most useful? Why? 
12. What aspect of the game did you find the least useful? Why? 
13. What would you change about this game?
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Version 2 11.3.21 
 
59 
 
 
LOCATOR FORM 
 
 
We are collecting information to help us contact you if you can’t be reached on your phone. We 
will keep this information separate from your responses to the questionnaires or interviews 
you’ve completed. We will not give this information to anyone. We will only tell the people 
below that we are calling from the hospital to schedule an appointment with you. 
 
Please fill out the following information.  
 
1. Your full name: 
 
_____________________________________________________________________ 
         (First)  
 
        (Middle)  
 
 
(Last) 
 
 
2. Your birthday: ____________________________ 
 
3. Your permanent address: 
 
 
_____________________________________________________________________ 
(Address) 
    
      
 
 
 
 
4. Home phone: (________) __________________________________ 
5. Work phone: (________) ___________________________________ 
 
6. Cell phone: (_________)  __________________________________ 
 
7. Email address: ___________________________________________ 
 
8. Social media: ____________________________________________ 
 
9. Who lives at your permanent address? 
 
Full name: ____________________________________        
_____________________ 
  
 
 
(First)  
 
(Last)  
 
 
(Relationship) 
 
Full name: ____________________________________       
_____________________ 
  
 
 
(First)  
  
(Last)  
 
 
(Relationship) 
 
Full name: ____________________________________        
_____________________ 
  
 
 
(First)  
  
(Last)  
 
 
(Relationship) 
 
Full name: ____________________________________        
_____________________ 
  
 
 
(First)  
  
(Last)  
 
 
(Relationship) 
 
10. How long have you lived at your permanent address? _____________________________ 

Version 2 11.3.21 
 
60 
 
 
 
11. Do you plan to move soon?  
 
Yes 
or 
No  
 
(If yes) Do you know when or where?: ________________________________ 
 
 
12. When we call you at home, how would you like us to identify ourselves?   
 
(hospital, Korle-Bu, etc.) ______________________________________________ 
 
13. What is the name, address, and phone number of any other location where you stay? 
 
 
__________________________________________________________________________
____________ 
 
 
__________________________________________________________________________
____________ 
 
14. Please supply the names of three friends and/ or family members who generally know how to 
get in touch with you if you move or change phone numbers?  
 
Person #1 
 
Full name: ________________________________________________________________ 
 
Address: _________________________________________________________________ 
 
Phone number: (______) ______________  
 
Relationship: _________________ 
 
Person #2 
 
Full name: ________________________________________________________________ 
 
Address: _________________________________________________________________ 
 
Phone number: (______) ______________  
 
Relationship: _________________ 
 
Person #3  
 
Full name: _________________________________________________________________ 
 
Address: __________________________________________________________________ 
 
Phone number: (______) ______________  
 
Relationship: ________________

Version 2 11.3.21 
 
61 
 
 
Draft of Qualitative Data Collection Guides for Adolescents and Parents 
 
A Text-Based Adherence Game for Young People Living with HIV in Ghana 
 
 
 
 
Contents 
A. Draft of Focus Group Guide: Adolescent Patient  
B. Draft of Focus Group Guide: Parent/Guardian of Adolescent  
C. Draft of Cognitive Interview Guide: Parent-Adolescent Dyad  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
A. Focus Group Guide: Adolescent Patient  
 

V ersi o n 2 1 1. 3. 2 1  
 
6 2  
 
 
T h e  i n v estig at ors  will  l ea d a s e mi- str u ct ur e d f oc us gr o u p wit h  a d ol esc e nt p ati e nt p artici p a nt s t o g at h er  
i nf or m ati o n t h at will  pr o vi d e  g ui d a nc e  i n d e v el o pi n g  a T e xt -B as e d A d h er e nc e G a m e i nt er v e nti o n.  F oll o wi n g 
t he I ntr o d ucti o n o utli ne bel o w is a n o utli ne f or t he F oc us Gr o u p. E ac h f oc us gr o u p t o pic is f oll o we d by br o a d a n d ge ner ally 
o pe n -e n de d q uesti o ns. I nter vie wers will be i nstr ucte d t o as k m ore s pecific f oll o w -u p q uesti o ns t o pr o be res p o nses t o t he 
i niti al o pe n-e n de d q uesti o ns. W hil e t hi s g ui d e p r o vi d e s t h e m ai n t o pi c s of i nt e r e st, i niti al q u e sti o n s, p r o b e s, 
a n d o r d e ri n g of t o pi c a r e a s m a y b e m o difi e d p ri o r t o t h e st a rt of t h e f o c u s g r o u p a n d d u ri n g t h e f o c u s 
g r o u p.   
 
I ntr o d u cti ons  
 
O v er vi e w:  Th e  i nt e nt of  this  p orti o n  of t h e a g e n d a  is t o w el c o m e t h e p artici p a nt s a n d  m a k e  t h e m as 
c o mf ort a bl e  as  p ossi bl e  b y  e x pl ai ni n g  t h e i nt er vi e w pr o c ess a n d l etti n g  t h e m k n o w w h at  t o e x p e ct  fr o m t h e 
e x p eri e nc e. A d diti o n all y,  t h e i n v estig at or  will  e x pl ai n  r ul es c onc e r ni n g c onfi d e nti alit y,  a n d  t h e us e  of  d at a.  
 
 I ntr o d u c e I nv esti g at or  
 E x pl ai n  t h at t h e o v er all  p ur p os e  of  f oc us gr o u p is t o eli cit  disc ussi o n a b o ut t h e p arti ci p a nt’s  
e x p eri e nc es  wit h  HI V, HI V tr e at m e nt, a n d t e c h n ol o g y , a n d t h eir pr ef er e nc es f or t e xt m ess a g e 
i nt er v e nti o n t o i m pr o v e t h eir HI V tr e at m e nt a d h er e nc e. 
 S a m pl e  di al o g u e:  “ T h a n k y o u  s o mu c h  f o r a g r e ei n g  t o b e  a pa rt  of  t his f oc us g r o u p. W e  a r e  h e r e  t o d a y 
t o l ea r n  a b o ut y o u a n d fi n d o ut h o w  y o u n g p e o pl e  f eel  a b o ut li vi n g wit h HI V  a n d g etti n g t r e at m e nt 
f o r HI V. I n a d diti o n, w e’ r e c u ri o us t o fi n d o ut a b o ut y o u r e x p eri e nc e wit h m o bil e t ec h n ol o g y i ncl u di n g 
c ell p h o n es, t e xt m ess a g es, t h e i nt er n et, a n d m o bil e g a m es. O u r  i d e a is t o c r e at e a g a m e t h at is pl a y e d 
t h r o u g h t e xt m ess a g es. T h e g a m e will b e f u n a n d  h el p  y o u n g p e o pl e c o n n e ct wit h t h ei r p a r e nts o r 
ot h e r s u p p o rti v e p e o pl e i n t h ei r lif e  a n d  f oc us o n  t h ei r HI V t r e at m e nt. W e  w a nt  t o k n o w  w h at  p e o pl e 
t hi n k a b o ut  t his i d e a. Y o u  a r e  t h e e x p e rt i n t his a r e a a n d  w e  a r e  h o pi n g  t h at y o u  will  s h ar e y o u r  
t h o ug hts  a b o ut t h es e t o pics. W e  r e all y  n e e d  t o l e a r n f ro m y o u  i n o r d e r t o m a k e  t his p r o g r a m 
s uccessf ul.  
 H o us e k e e pi n g:  r est r oo m s, r efr es h m e nts, br e a ks  
 Gr o u n d  r ul es: “ Y o u d o  n ot  h a v e  t o ans w e r  a n y  qu esti o ns  y o u a r e  u n c o mf o rt a bl e  wit h.  
T h e r e  is n o ri g ht o r  w r o n g  a ns w e rs. W e’ r e  i nt e r est e d i n all  o pi ni o ns.”  
 C o nfi d e nti alit y:  “ W e will w o r k  h a r d  t o m ak e  s u r e e v e r yt hi n g  s ai d i n t h e i nt e r vie w  will  n ot  b e 
s h a r e d wit h  a n y o n e  o utsi d e  of  t h e r es e a rc h t e a m u nl ess  y o u  t ell us  a b o ut  a sit u ati o n w h e r e y o u  o r  
s om e o n e  el s e is i n d a n g e r . Y o u a r e als o b ei n g as k e d t o n ot s h a r e a n yt hi n g y o u h e a r a b o ut ot h e r 
f oc us g r o u p m e m b e rs wit h p e o pl e o utsi d e of t his f oc us g r o u p. W h at g ets s ai d i n t his f oc us g r o u p 
st a ys h e r e. W e w a nt e v e r y o n e t o f e el s af e a n d c o mf o rt a bl e t o s h a r e t h ei r e x p e ri e n c es. ” 
 Di git al  R e c o r di n g: “ R ec or di n gs a r e  not  s h a r e d wit h  a n y o n e  outsi d e  of  t h e r es e a rc h  t e a m, t h e y a r e  
k e pt s af e a n d  p ri v at e. W h e n  i nf o rm ati o n  is t a k e n f r o m t h e r ec o r di n g,  
p a rtici p a n ts will  b e  i d e ntifi e d b y  a n um b e r  o nl y  a n d  n a m es  will  n ot  b e  us e d.  T a p es  will  b e  e r as e d  o n c e  
t r a ns c ri b e d.” 
 
F o c us Gr o u p O utli n e  
 
D e m o g r a p hi c / F a mil y I nf o r m ati o n:  P ar ti ci pa nts  will  b e  as k e d g e n er al q u esti o ns a b o ut t h eir f a mily a n d 
frie n ds, livi n g sit u ati o n, a n d c urre nt sc h o oli n g.  
 
“I wo ul d li k e t o st a rt b y g etti n g t o k n o w all of y o u a littl e bit b ett e r.”  
 
 “ T ell m e a b o ut y o u rs el v es” 
 
 “ T ell m e a b o ut y o u r f a mili es” 
 
 “ W h at l a n g u a g es d o y o u s p e a k at h o m e ?” 
 
 “W h at d o y o u li k e t o d o i n y o u r f r e e ti m e ?” 

V ersi o n 2 1 1. 3. 2 1  
 
6 3  
 
 
 
 “ T ell m e a b o ut y o u r s c h o ol.”  
 
 “ T ell m e a b o ut y o u r f ri e n ds.” 
 
E x p e ri e n c e of Li vi n g wit h HI V:  P art ici pa nts  will  b e  as k e d pr eli mi n ar y q u esti o ns a b o ut t h eir e x perie nce of 
li vi ng wit h HI V.  
 
“I w o u l d li k e t o h e a r  a b o ut  y o u r e x p e ri e n c e s wit h li vi n g wit h HI V.”  
 
 “ T ell m e a b o ut t h e ti m e w h e n y o u f o u n d o ut y o u w e r e HI V p ositi v e” 
 
 “ W h at’s y o u r u n d e rst an di n g of h o w y o u w e r e i nf ect e d ?”  
 
 “ H o w d o y o u f e el a b o ut it n o w ?” 
 
 “ W h at’s it li k e b ei n g a y o u n g p e rs o n li vi n g wit h HI V ?” 
 
 “ W h at d o p e o pl e i n y o u r c o m m u nit y s a y a b o ut HI V ?” 
 
 “ W h o i n y o u r lif e is a w a r e of y o u r HI V st at us ? W h o is n ot a w a r e ?” 
 
 “ W h at’s it li k e t o t ell p e o pl e y o u r st at us ?” 
 
B a r ri e r s  a n d  F a cilit at o r s  t o HI V T r e at m e nt A d h e r e n c e : Parti ci p a nts  will  b e  as k e d a b o ut  th e  b arri ers 
a n d  f acilit ators  t o tr e at m e nt a d h er e nc e. 
 
“I w o ul d  li k e t o h e a r  f ro m y o u  y o u r e x p e ri e n c e wit h HI V t r e at m e nt.”’  
 
 “ T ell m e w h at HI V t r e at m e nt h as b e e n li k e f o r y o u.”  
 
 “ W h at ma k es  it h a r d t a k e a nti r et r o vi r al ( A R T) m e dic ati o n ?” 
 
 “ W h at ma k es  it e as i e r t o t a k e A R T m e dic ati o n?” 
 
 “ W h at a r e  t h e t hi n gs t h at ma k e  it h a r d o r e as y  c o m e t o m e dic al a p p o i nt me nts ?” 
 
 “W h at’s it li k e t a ki n g y o u r m e dic ati o n at b o a r di n g s c h o ol ?”  
 
 “W h at’s it li k e h a vi n g t o att e n d d oct o r’s a p p oi nt m e nts w hil e at b o a r di n g s c h o ol ?”  
 
 “H o w m u c h c o nt act d o es y o u r m o m o r d a d ( o r ot h e r g u a r di a n) h a v e wit h y o u w hil e a w a y at 
b o a r di n g s c h o ol ?”  
 
 “ W h at r ol e d o es y o u r f a mil y pl a y i n y o u r HI V c a r e ?” 
 
 “W h at r ol e d o es y o u r m o m a n d d a d ( o r ot h e r g u a r di a n) pl a y i n y o u r HI V t r e at m e nt ?” 
 
 “W h at t hi n gs d o y o u r p a r e nts e x p ect y o u t o d o y o u rs elf i n t e r ms of y o u r HI V t r e at m e nt ( e. g., t a ki n g 
m e dic ati o n,  r e m e m b e ri n g d oct o r’s a p p oi nt m e nts) ?”  
 
 “H o w c a n y o u r p a r e nts h el p y o u m o r e wit h y o u r HI V t r e at m e nt ?”  
 
 “W h at it’s li k e t al ki n g t o y o u r p a r e nts a b o ut HI V ?”  

V ersi o n 2 1 1. 3. 2 1  
 
6 4  
 
 
 
 “W h at it’s li k e t al ki n g t o y o u r p a r e nts a b o ut HI V m e dic ati o n ?”  
 
 “W h at’s y o u r r el ati o ns hi p  li k e wit h y o u r p a r e nts ?” 
 
 “ W h at r ol e d o y o u r f ri e n ds pl a y i n y o u r HI V c a r e ?” 
 
 “ P e o pl e i n HI V t r e at m e nt a r e as k e d t o h a v e a t r e at m e nt m o nit o r . T ell m e a b o ut y o u rs.” 
 
 “ D esc ri b e y o u r r el ati o ns hi p wit h y o u r t r e at m e nt m o nit o r .” 
 
 “ T ell m e a b o ut y o u r r el ati o ns hi p wit h y o u r h e alt h c a r e p r o vi d e rs.”   
 
 “W h at d o y o u p r o vi d e rs s a y a b o ut d oi n g t hi n gs f o r y o u rs elf i n t e r ms of y o u r HI V t r e at m e nt ? F o r 
e x a m pl e, d o t h e y s a y t h at y o u o r y o u r p a r e nts s h o ul d r e m e m b e r y o u r HI V m e dic ati o n ? ”   
 
E x p e ri e n c e wit h T e c h n ol o g y : Parti ci p a n ts will  b e as k e d  a b o ut  t h eir e x p eri e nc es wit h m o bil e p h o n es, 
t e xt m ess a g es, t h e i nt er n et, a n d m o bil e g a m es.  
 
“I w o ul d  li k e t o h e a r  a b o ut  y o u r e x p e ri e n c e wit h t ec h n ol o g y.”  
 
 “ W h at’s y o u r e x p e ri e n c e b e e n li k e wit h m o bil e p h o n es ?”  
 
 “H o w m a n y p e o pl e y o u r a g e o w n a m o bil e p h o n e ? ” 
 
 “ W h at d o y o u us e y o u r c ell p h o n e f o r ( e. g., c alls, t e xt m ess a g es, g a m es) ?” 
 
 “ H a v e y o u t al k e d t o s o m e o n e f r o m t h e cli nic o n y o u r c ell p h o n e ? T ell m e a b o ut t h at.” 
 
 “ H o w oft e n d o y o u s e n d t e xt m ess a g es ?” 
 
 “ H o w oft e n d o y o u us e W h ats A p p ?” 
 
 “H o w d o y o u p a y f o r p h o n e d at a ?”  
 
 “ W h e r e c a n y o u a c c ess t h e i nt e r n et ? H o w oft e n c a n y o u ac c ess it ?” 
 
 “ H o w oft e n d o y o u pl a y m o bil e g a m es ?”  
 
 “ W h at ki n ds of m o bil es g a m es d o y o u li k e ( e. g., s p o rts, fi g hti n g) ?”  
 
 “ T ell m e a b o ut y o u r e x p e ri e n c e wit h pl a yi n g g a m es wit h ot h e r p e o pl e o nli n e.”  
 
S u g g e sti o n s f o r a T e xt -B a s e d A d h e r e n c e G a m e : Parti ci p a n ts will  b e as k e d  q u esti o ns r el at e d t o t h e 
d e v el o p m e nt of o ur i nt er v e nti o n.  
 
“ W e h a v e a n i d e a t o c r e at e a g a m e usi n g t e xt m ess a g es. T h e p u r p os e of t h e g a m e is t o h a v e f u n, c o n n ect 
wit h p e o pl e li k e y o u r p a r e nts o r g u a r di a ns w h o a r e s u p p o rti v e of y o u r HI V t r e at m e nt, a n d m a k e it e asi e r 
f o r y o u t o t a k e y o u r HI V  m e dic ati o n a n d s h o w u p t o d oct o r’s a p p oi nt m e nts. W e w a nt t o k n o w w h at y o u 
t hi nk a b o ut s o m e of o u r i d e as.”  
 
 “ W e a r e t hi n ki n g a b o ut t e xti n g y o u a n d / o r y o u r p a r e nts a n d g u a r di a ns  t o r e mi n d y o u n g p e o pl e t o 
t a k e t h ei r m e dic ati o n a n d s h o w u p at t h ei r cli nic a p p oi nt m e nts. W h at d o y o u t hi n k of t h at i d e a ?”  
 

V ersi o n 2 1 1. 3. 2 1  
 
6 5  
 
 
 “ T o m a k e t his m o r e f u n, w e a r e als o t hi n ki n g a b o ut t e xti n g p a rtici p a nts bits of a st o r y. T e e ns a n d 
t h ei r p a r e nts n e e d t o a ns w e r st o r y q u esti o ns i n or d e r t o e a r n p oi nts, l e v el u p, a n d c o m p et e a g ai nst ot h e r 
pl a y e rs, w h o w o ul d als o b e a d ol es c e nts a n d t h ei r p a r e nts  i n t h e cli nic. W h at d o y o u t hi n k of t h at i d e a ?”  
 
 “ C o m p eti n g a g ai nst ot h er pl a y e rs w o ul d i n v ol v e a s c o r eb o a r d. T his w o ul d b e pl a y e rs wit h t h e t o p o r 
l o w est s c o r es. S c o r e b o a r ds  w o ul d b e t e xt e d t o all pl a y e rs. W h at d o y o u t hi n k of t h at i d e a ?”  
 
 “ A fi n al as p ect of t h e g a m e i n v ol v es all o wi n g pl a y e rs t o r ea c h o ut f o r s u p p o rt f r o m a d oct o r, ot h e r 
h e alt hc a r e p r o vi d e r, o r p e e r e d u c at o r at t h e cli nic. F o r e x a m pl e, a pl a y e r mi g ht b e as k e d, ‘ H o w a r e y o u 
f e eli n g t o d a y ?’ o r “ H o w is y o u r c hil d f e eli n g t o d a y ?” A n d if t h e y r es p o n d ‘ n ot g o o d,’ t h e y’ll b e as k e d if 
t h e y w a nt c all f r o m a d oct o r . W h at d o y o u t hi n k of t h at i d e a ?”  
 
 “ T h e g a m e’s st o r y c o ul d b e a b o ut a n yt hi n g. W h at t h e m e w o ul d y o u fi n d i nt e r esti n g ?” 
 
 
Cl osi n g  
 
O v er vi e w:  t h e p arti ci p a n ts will  b e  t ha n k e d  f or t h eir ti m e a n d  eff orts  
 
e. g.  “ T h a n k y o u  f o r p a rtici p ati n g  i n ou r  i nt e r vi e w t o d a y.  Y o u  g a v e  us  l ots of  g r e at  i nfo r m ati o n f o r  o u r  
st u d y. Y o u r  i d e as a n d  c o m m e nts  a r e  i m p ort a nt .” 
 
 
 
 
 
 
 
 
 
 
B. F o c u s G r o u p  G ui d e : P a r e nt/ G u a r di a n of A d ol e s c e nt  
 
T h e  i n v estig at ors  will  l ea d a s e mi- str u ct ur e d f oc us gr o u p wit h  t h e p ar e nts or g u ar di a ns of a d ol esc e nt HI V 
p ati e nts t o g at h er  i nf or m ati o n t h at will  pr o vi d e  g ui d a nc e  i n d e v el o pi n g  a T e xt -B as e d A d h er e nc e G a m e 
i nt er v e nti o n. F oll o wi n g t he I ntr o d ucti o n o utli ne bel o w is a n o utli ne f or t he F oc us Gr o u p . Eac h f oc us gr o u p t o pic is 
f oll o we d by br o a d a n d ge ner ally o pe n-e n de d q uesti o ns. I ntervie wers will be i nstr ucte d t o as k m ore s pecific f oll o w -u p 
q uesti o ns t o pr o be res p o nses t o t he i nitial o pe n -e n de d q uesti o ns. W hil e t hi s g ui d e p r o vi d e s t h e m ai n t o pi c s of 
i nt e r e st, i niti al q u e sti o n s, p r o b e s, a n d o r d e ri n g of t o pi c a r e a s m a y b e m o difi e d p ri o r t o t h e st a rt of t h e 
f o c u s g r o u p a n d d u ri n g t h e f o c u s g r o u p.  
 
I ntr o d u cti ons  
 
O v er vi e w:  Th e  i nt e nt of  this  p orti o n  of t h e a g e n d a  is t o w el c o m e t h e p artici p a nt s a n d  m a k e  t h e m as 
c o mf ort a bl e  as  p ossi bl e  b y  e x pl ai ni n g  t h e i nt er vi e w pr o c ess a n d l etti n g  t h e m k n o w w h at  t o e x p e ct  fr o m t h e 
e x p eri e nc e. A d diti o n all y,  t h e i n v estig at or  will  e x pl ai n  r ul es c onc er ni n g  c onfi d e nti alit y,  a n d  t h e us e  of  d at a.  
 
 I ntr o d u c e I nv esti g at or  
 E x pl ai n  t h at t h e o v er all  p ur p os e  of  t h e f oc us gr o u p is t o elicit  disc ussi o n a b o ut t h e p artici p a nts ’ 
e x p eri e nc es  wit h  c ari n g f or a n a d ol esc e nt c hil d wit h HI V,  t e c h n ol o g y, a n d t h eir pr ef er e nc es f or t e xt 
m ess a g e i nt er v e nti o n t o i m pr o v e t h eir c hil d’s HI V tr e at m e nt a d h er e nc e.  
 S a m pl e  di al o g u e:  “ T h a n k y o u  s o mu c h  f o r a g r e ei n g  t o b e  a pa rt  of  t his f oc us g r o u p. W e  a r e  h e r e  t o d a y 
t o l ea r n  a b o ut y o u a n d fi n d o ut h o w  p a r e nts a n d g u a r di a ns of a d ol es c e nts li vi n g wit h HI V  f eel  a b o ut 
y o u r c hil d’s HI V t r e at m e nt . I n a d diti o n, w e’ r e c u ri o us t o fi n d o ut a b o ut y o u r e x p eri e nc e wit h m o bile 

V ersi o n 2 1 1. 3. 2 1  
 
6 6  
 
 
t ec h n ol o g y i ncl u di n g m o bil e p h o n es, t e xt m ess a g es, t h e i nt er n et, a n d m o bile g a m es. O u r  i d e a is t o 
c r e at e  a g a m e t h at is pl a y e d t h r o u g h t e xt m ess a g es. T h e g a m e will b e f u n a n d  h el p  y o u n g p e o pl e 
c o n n ect wit h t h ei r p a r e nts o r ot h e r s u p p o rti v e p e o pl e i n t h ei r lif e  a n d  f oc us o n  t h ei r HI V t r e at m e nt. 
W e  w a nt  t o k n o w  w h at  p e o pl e t hi n k  of  t his i d e a. Y o u  a r e  t h e e x p e rt i n t his a r e a,  a n d  w e  a r e  h o pi n g  
t h at y o u  will  s h ar e y o u r  t h o ug hts  a b o ut t h es e t o pics. W e  r e all y  n e e d  t o l e a r n f ro m y o u  t o m a k e  t his 
p r o g r a m s uccessf ul.  
 H o us e k e e pi n g : r est r oo m s, r efr es h m e nts, br e a ks  
 Gr o u n d  r ul es: “ Y o u d o  n ot  h a v e  t o ans w e r  a n y  qu esti o ns  y o u a r e  u n c o mf o rt a bl e  wit h.  
T h e r e  is n o ri g ht o r  w r o n g  a ns w e rs. W e’ r e  i nt e r est e d i n all  o pi ni o ns.”  
 C o nfi d e nti alit y:  “ W e will w o r k  h a r d  t o m ak e  s u r e e v e r yt hi n g  s ai d i n t h e i nt e r vie w  will  n ot  b e 
s h a r e d wit h  a n y o n e  o utsi d e  of  t h e r es e a rc h t e a m u nl ess  y o u  t ell us  a b o ut  a sit u ati o n w h e r e y o u  o r  
s om e o n e  el s e is i n d a n g e r . Y o u a r e als o b ei n g as k e d t o n ot s h a r e a n yt hi n g y o u h e a r a b o ut ot h e r 
f oc us g r o u p m e m b e rs wit h p e o pl e o utsi d e of t his f oc us g r o u p. W h at g ets s ai d i n t his f oc us g r o u p 
st a ys h e r e. W e w a nt e v e r y o n e t o f e el s af e a n d c o mf o rt a bl e t o s h a r e t h ei r e x p e ri e n c es. ” 
 Di git al  R e c o r di n g: “ R ec or di n gs a r e  not  s h a r e d wit h  a n y o n e  outsi d e  of  t h e r es e a rc h  t e a m, t h e y a r e  
k e pt s af e a n d  p ri v at e. W h e n  i nf o rm ati o n  is t a k e n f r o m t h e r ec o r di n g,  
p a rtici p a n ts will  b e  i d e ntifi e d b y  a n um b e r  o nl y  a n d  n a m es  will  n ot  b e  us e d.  T a p es  will  b e  e r as e d  o n c e  
t r a ns c ri b e d.” 
 
F o c us Gr o u p O utli n e  
 
D e m o g r a p hi c / F a mil y I nf o r m ati o n:  P ar ti ci pa nts  will  b e  as k e d g e n er al q u esti o ns a b o ut t h eir c hil dre n, 
ot her f a mily me m bers, a n d c urre nt livi n g sit u ati o n.  
 
“I wo ul d li k e t o st a rt b y g etti n g t o k n o w all of y o u a littl e bit b ett e r.”  
 
 “ T ell m e a b o ut y o u rs el v es.” 
 
 “T ell m e a b o ut y o u r c hil d o r c hil d r e n t h at att e n d t his cli nic.”  
 
 “ T ell m e a b o ut y o u r ot h er f a mily m e m b e rs. ” 
 
 “ T ell m e a b o ut y o u r c u r r e nt li vi n g sit u ati o n.”  
 
 “ W h at l a n g u a g es d o y o u s p e a k at h o m e ?” 
 
 “W h at d o y o u  li k e t o d o i n y o u r f r e e ti m e?” 
 
 “W h at d o y o u d o f o r w o r k ?”  
 
E x p e ri e n c e of B ei n g a P a r e nt / G u a r di a n of a n A d ol e s c e nt Li vi n g  wit h HI V:  P artici p a nts  will  b e  
a s k e d pr eli mi n ar y q u esti o ns a b o ut t h eir e x perie nce of livi n g wit h HI V.  
 
“I w o u l d li k e t o h e a r  a b o u t y o u r e x p e ri e n c e s wit h b ei n g a p a r e nt o r g u a r di a n of a n a d ol es c e nt li vi n g wit h 
HI V.”  
 
 “ T ell m e a b o ut t h e ti m e w h e n y o u f o u n d o ut y ou r c hil d w as HI V p ositi v e. ” 
 
 “ W h at’s y o u r u n d e rst a n di n g of h o w h e /s h e c o nt r a ct e d HI V ?”  
 
 “T ell m e a b o ut t h e ti m e y o u r c hil d b ec a m e a w a r e t h e y w e r e HI V p ositi v e ?”  
 
 “H o w d o es y o u r c hil d f e el a b o ut li vi n g wit h HI V ?”  
 

V ersi o n 2 1 1. 3. 2 1  
 
6 7  
 
 
 “W h at d o es y o u r c hil d k n o w a b o ut HI V ? W h at d o n’t t h e y k n o w ?”  
 
 “ W h at’s it li k e b ei n g a p a r e nt / g u a r di a n of a n a d ol es c e nt wit h HI V?” 
 
 “ W h o i n y o u r lif e is a w a r e of y o u r c hil d’s HI V st at us ? W h o is n ot a w a r e ?”  
 
 “ W h at d o p e o pl e i n y o u r c o m m u nit y s a y a b o ut HI V ?” 
 
 
B a r ri e r s  a n d  F a cilit at o r s  t o A d ol e s c e nt HI V T r e at m e nt A d h e r e n c e : Parti ci p a nts  will  b e  as k e d a b o ut  
th e  b arri ers a n d  f acilit ators  t o a d ol esc e nt  HI V tr e at m e nt a d h er e nc e. 
 
“I w o ul d  li k e t o h e a r  f ro m y o u  all a b o ut y o u r e x p e ri e n c e s wit h y o u r c hil d’s HI V t r e at m e nt.”’  
 
 “ T ell m e w h at y o u r c hil d’s HI V t r e at m e nt h as b e e n li k e f o r y o u.”  
 
 “ W h at ma k es  it h a r d  f o r t h e m t o t a k e t h ei r HI V m e dic ati o n ?” 
 
 “ W h at ma k es  it e as i e r t o t a k e t h ei r HI V m e dic ati o n ?” 
 
 “ W h at a r e  t h e t hi n gs t h at ma k e  it h a r d o r e as y  f o r t h e m t o att e n d m e dic al  a p p o i nt me nts ?” 
 
 “W h at’s it li k e f o r t h e m w h e n t o t a k e t h ei r m e dic ati o n at b o a r di n g s c h o ol ?”  
 
 “W h at’s it li k e f o r t h e m  t o att e n d d oct o r’s a p p oi nt m e nts w hil e at b o a r di n g s c h o ol ?” 
 
 “H o w m u c h c o nt act d o y o u h a v e wit h t h e m w hil e a w a y at b o a r di n g s c h o ol ?”  
 
 “ W h at r ol e d o y o u pl a y i n t h ei r HI V c a r e ?”  
 
 “W h at t hi n gs d o y o u e x p ect y o u r c hil d t o d o t h e ms el v es i n t e r ms of t h ei r HI V t r e at m e nt ( e. g., t a ki n g 
m e dic ati o n, r e m e m b e ri n g d oct o r’s a p p oi nt m e nts) ?”  
 
 “H o w c o ul d y o u b ett e r assist t h e m wit h t h ei r HI V t r e at m e nt ?” 
 
 “W h at it’s li k e t al ki n g t o y o u r c hil d r e n a b o ut HI V ?”  
 
 “W h at it’s li k e t al ki n g t o y o u r c hil d r e n a b o ut HI V m e dic ati o n ?”  
 
 “W h at’s y o u r r el ati o ns hi p li k e wit h y o u r c hil d r e n ?”  
 
 “H o w h as h el pi n g t h e m wit h t h ei r HI V t r e at m e nt c h a n g e d y o u r r el ati o ns hi p ?”  
 
 “W h at c h all e n g es d o y o u h a v e as a p a r e nt i n h el pi n g t h e m wit h t h ei r HI V t r e at m e nt ?  
 
 “W o ul d y o u b e o p e n t o a c o u ns el o r o r s o m e o n e els e t e a c hi n g p a r e nti n g s kills t h at c o ul d h el p y o u 
b ett e r assist y o u r a d ol esc e nts wit h t h ei r t r e at m e nt ?”  
 
 “ T ell m e a b o ut y o u r r el ati o ns hi p wit h y o u r c hil d’s h e alt h c a r e p r o vi d e rs.”   
 
 “W h at d o t h ei r p r o vi d e rs e x p ect f r o m y o u r c hil d i n t e r ms of c a ri n g f o r t h e ms el v es ? F o r e x a m pl e, d o 
t h e y s a y t h at t h e y o r y o u s h o ul d r e m e m b e r t h ei r HI V m e dic ati o n ?”   
 

V ersi o n 2 1 1. 3. 2 1  
 
6 8  
 
 
E x p e ri e n c e wit h T e c h n ol o g y : Parti ci p a n ts will  b e as k e d  a b o ut  t h eir e x p eri e nc es wit h m o bil e p h o n es, 
t e xt m ess a g es, t h e i nt er n et, a n d m o bil e g a m es.  
 
“I w o ul d  li k e t o h e a r  a b o ut  y o u r e x p e ri e n c e s wit h t ec h n ol o g y.”  
 
 “ W h at’s y o u r e x p e ri e n c e b e e n li k e wit h m o bil e p h o n es ?”  
 
 “ W h at d o y o u us e y o u r m o bil e p h o n e f o r ( e. g., c alls, t e xt m ess a g es, g a m es) ?”  
 
 “ H a v e y o u t al k e d t o s o m e o n e f r o m t h e cli nic o n y o u r m o bil e p h o n e ? T ell m e a b o ut t h at.”  
 
 “ H o w oft e n d o y o u s e n d t ext m ess a g es ?”  
 
 “ H o w oft e n d o y o u us e W h ats A p p ?” 
 
 “H o w d o y o u c o m m u nic at e wit h y o u r a d ol esc e nt c hil d o n m o bil e p h o n es ( e. g., t e xt, c alls, W h ats A p p) ?  
 
 “H o w h a r d o r e as y is it f o r y o u t o p u rc h as e p h o n e d at a ?”  
 
 “ W h e r e c a n y o u a c c ess t h e i nt e r n et ? H o w oft e n c a n y o u ac c ess it ?” 
 
 “ H o w oft e n d o y o u pl a y m o bil e g a m es ?”  
 
 “ W h at ki n ds of m o bil es g a m es d o y o u li k e ( e. g., s p o rts, fi g hti n g) ?”  
 
 “ T ell m e a b o ut y o u r e x p e ri e n c e wit h pl a yi n g g a m es wit h ot h e r p e o pl e o nli n e.”  
 
S u g g e sti o n s f o r a T e xt -B a s e d A d h e r e n c e G a m e : Parti ci p a n ts will  b e as k e d  q u esti o ns r el at e d t o t h e 
d e v el o p m e nt of o ur i nt er v e nti o n.  
 
“ W e h a v e a n i d e a t o c r e at e a g a m e usi n g t e xt m ess a g es. T h e p u r p os e of t h e g a m e is t o h a v e f u n, g et y o u r 
c hil d m o r e i nt e r est e d i n HI V t r e at m e nt, a n d g et y o u m o bil e s u p p o rt f r o m p r o vi d e rs w h e n y o u n e e d t o h el p 
y o u r c hil d wit h t h ei r t r e at m e nt . W e w a nt t o k n o w w h at y o u t hi n k a b o ut s o m e of o u r i d e as.” 
 
 “ W e a r e t hi n ki n g a b o ut t e xti n g y o u a n d / o r y o u r c hil d r e n t o r e mi n d y o u n g p e o pl e t o t a k e t h ei r 
m e dic ati o n a n d s h o w u p at t h ei r cli nic a p p oi nt m e nts. W h at d o y o u t hi n k of t h at i d e a ?”  
 
 “ T o m a k e t his m o r e f u n, w e a r e als o t hi n ki n g a b o ut t e xti n g p a rtici p a nts bits of a st o r y. T e e ns a n d / o r 
t h ei r p a r e nts n e e d t o a ns w e r st o r y q u esti o ns i n or d e r t o e a r n p oi nts, l e v el u p, a n d c o m p et e a g ai nst ot h e r 
pl a y e rs, w h o w o ul d als o b e a d ol es c e nts a n d t h ei r p a r e nts  i n t h e cli nic. W h at d o y o u t hi n k of t h at i d e a ?”  
 
 “ C o m p eti n g a g ai nst ot h er pl a y e rs w o ul d i n v ol v e a s c o r eb o a r d. T his w o ul d b e pl a y e rs wit h t h e t o p o r 
l o w est s c o r es. S c o r e b o a r ds  w o ul d b e t e xt e d t o all pl a y e rs. W h at d o y o u t hi n k of t h at i d e a ?”  
 
 “ A fi n al as p ect of t h e g a m e i n v ol v es all o wi n g pl a y e rs t o r e a c h o ut f o r s u p p o rt f r o m a d oct o r, ot h e r 
h e alt hc a r e p r o vi d e r, o r p e e r e d u c at o r at t h e cli nic. F o r e x a m pl e, a pl a y e r mi g ht b e as k e d, ‘ H o w a r e y o u 
f e eli n g t o d a y ?’ o r “ H o w is y o u r c hil d f e eli n g t o d a y ?” A n d if t h e y r es p o n d ‘ n ot g o o d,’ t h e y’ll b e as k e d if 
t h e y w a nt c all f r o m a d oct o r . W h at d o y o u t hi n k of t h at i d e a ?”  
 
 “ T h e g a m e’s st o r y c o ul d b e a b o ut a n yt hi n g. W h at t h e m e w o ul d y o u fi n d i nt e r esti n g ?” 
 
 
Cl osi n g  
 

V ersi o n 2 1 1. 3. 2 1  
 
6 9  
 
 
O v er vi e w:  t h e p arti ci p a n ts will  b e  t ha n k e d  f or t h eir ti m e a n d  eff orts  
 
e. g.  “ T h a n k y o u  f o r p a rtici p ati n g  i n ou r  i nt e r vi e w t o d a y.  Y o u  g a v e  us  l ots of  g r e at  i nfo r m ati o n f o r  o u r  
st u d y. Y o u r  i d e as a n d  c o m m e nts  a r e  i m p ort a nt .” 
 
 
 
C . C o g niti v e I nt e r vi e w O utli n e : P ati e nt  
 
T h e  i n v estig at ors  will  l ea d a s e mi- str u ct ur e d c o g niti ve i nt er vi e w wit h  p ar e nt -a d ol esc e nt d y a ds t o i nf or m t h e  
d e v el o p m e nt of a  T e xt -B as e d A d h er e nc e G a m e i nt er v e nti o n.  F oll o wi n g t he I ntr o d ucti o n o utli ne bel o w is a n o utli ne 
f or t he C o g nitive  I ntervie w. Eac h i ntervie w t o pic is f oll o we d by br o a d a n d ge ner ally o pe n-e n de d q uesti o ns. I nter vie wers 
will be i nstr ucte d t o as k m ore s pecific f oll o w -u p q uesti o ns t o pr o be res p o nses t o t he i niti al o pe n -e n de d q uesti o ns. W hil e 
t hi s g ui d e p r o vi d e s t h e m ai n t o pi c s of i nt e r e st, i niti al q u e sti o n s, p r o b e s, a n d o r d e ri n g of t o pi c a r e a s 
m a y b e m o difi e d p ri o r t o t h e st a rt of t h e c o g niti v e i nt e r vi e w  a n d d u ri n g t h e c o g niti v e i nt e r vi e w.  
 
I ntr o d u cti ons  
 
O v er vi e w:  Th e  i nt e nt of  this  p orti o n  of t h e a g e n d a  is t o w el c o m e p artici p a nt s a n d  m a k e  t h e m as c o mf ort a bl e  
as  p ossi bl e  b y  e x pl ai ni n g  t h e i nt er vi e w pr oc ess a n d l etti n g  t h e m k n o w w h at  t o e x p ect  fr o m t h e e x p eri e nc e. 
A d diti o n all y,  t h e i n vesti g at or  will  e x pl ai n  r ul es c onc er ni n g  c onfi d e nti alit y,  a n d  t h e us e  of  d at a.  
 
 I ntr o d u c e I nv esti g at or  
 E x pl ai n  t h at t h e o v er all  p ur p os e  of  i nt er vi e w is t o eli cit  dis c ussi o n a b o ut t h e p arti ci p a nt’s  
e x p eri e nc es  wit h p arti ci p ati n g i n t h e T e xt -B as e d A d h er e nc e G a m e.  
 S a m pl e  di al o g u e:  “ T h a n k y o u  s o mu c h  f o r a g r e ei n g  t o b e  a pa rt  of  t his i nter vi e w  t o da y.  
W e  a r e  h e r e  t o d a y t o h e a r w h at y o u t hi n k a b o ut t his t e xt m ess a g e p r o g r a m c all e d a   T e xt -B as e d 
A d h e r e nc e G a m e ( r ef e r r e d t o as T A G). O u r  i d e a is t o c r e at e a g a m e t h at is pl a y e d t h r o u g h t e xt 
m ess a g es. T h e g a m e s h o ul d b e f u n  a n d  h el p  y o u n g p e o pl e f o c us o n  t h ei r HI V t r e at m e nt. W e  w a nt  
t o k n o w  w h at  p a r e nts / g u a r di a ns a n d y o u n g p e o pl e  t hi n k a b o ut t h e g a m e a n d if y o u h a v e a n y 
s u g g esti o ns f o r its i m p r o v e m e nt.  Y o u  a r e  t h e e x p e rt i n t his a r e a.  W e  r e all y  n e e d  t o l e a r n f ro m y o u  
i n o r d e r t o m a k e  t his p r o g r a m s uccessf ul.  
 H o us e k e e pi n g:  r est r oo m s, r efr es h m e nts, br e a ks  
 Gr o u n d  r ul es: “ Y o u d o  n ot  h a v e  t o ans w e r  a n y  qu esti o ns  y o u a r e  u n c o mf o rt a bl e  wit h.  
T h e r e  is n o ri g ht o r  w r o n g  a ns w e rs. W e’ r e  i nt e r est e d i n all  o pi ni o ns.”  
 C o nfi d e nti alit y:  “ W e w or k  h a r d  t o m ak e  s u r e e v e r yt hi n g  s ai d i n t h e i nt e r vie w  will  n ot  b e s h a r e d  
wit h  a n y o n e  o utsi d e  of  t h e r es e a rc h t e a m u nl ess  y o u  t ell us  a b o ut  a sit u ati o n w h e r e y o u  o r  
s om e o n e  el s e is i n d a n g e r .” 
 Di git al  R e c o r di n g: “ R ec or di n gs a r e  not  s h a r e d wit h  a n y o n e  outsi d e  of  t h e r es e a rc h  t e a m, t h e y a r e  
k e pt s af e a n d  p ri v at e. W h e n  i nf o rm ati o n  is t a k e n f r o m t h e r ec o r di n g,  
p a rtici p a n ts will  b e  i d e ntifi e d b y  a n um b e r  o nl y  a n d  n a m es  will  n ot  b e  us e d.  T a p es  will  b e  e r as e d  o n c e  
t r a ns c ri b e d.” 
 
C o g niti v e  I nt er vi e w 
 
J oi nt P o rti o n  
 
Gl o b al I m p r e s si o n s of G a m e O v e r vi e w : Parti ci p a n ts will  b e pr o vi d e d wit h a g e n er al d escri pti o n of t h e 
Te xt -Base d A d here nce G a m e ( T A G) . T h e d escri pti o n will i ncl u d e t h e p ur p os e of t h e g a m e, h o w it will b e 
d eli v er e d, h o w it will b e pl a y e d, a n d it’s s p e cifi c f e at ur es. Aft er t his d es cri pti o n, t h e y will b e as k e d t h e 
f oll o wi n g q u esti o ns:  
 

V ersi o n 2 1 1. 3. 2 1  
 
7 0  
 
 
 “ W h at is y o u r fi rst i m p r essi o n of t his g a m e ?” 
 
 
 
 “W h at d o y o u li k e a b o ut t his i d e a ?”  
 
 “W h at a b o ut o u r g a m e i d e a d o n’t y o u li k e ?”  
 
 “B as e d o n t his d esc ri pti o n, w h at q u esti o ns d o y o u h a v e a b o ut t h e g a m e ?”  
 
 “H o w d o y o u t hi n k t his will h el p y o u ( o r y o u r c hil d) wit h y o u r ( o r t h ei r) HI V t r e at m e nt ?”  
 
   P ar e nts o nl y: “H o w d o y o u t hi n k t his will h el p y o u b ett e r assist y o u r c hil d wit h t h ei r HI V t r e at m e nt ?”  
 
   A d ol esc e nt o nl y: “H o w d o y o u t hi n k t his will h el p y o u r b ett e r assist y o u wit h y o u r HI V t r e at m e nt ?”  
 
I n di vi d u al P o rti o n  
 
F e e d b a c k o n S p e cifi c G a m e F e at u r e s : Partici p a n ts will  b e pr o vi d e d wit h d escri pti o ns of e ac h of t h e 
g a m e’s f e at ur es f oll o w e d b y s a m pl e t e xt m ess a g es. P artici p a nts m a y als o b e t e xt e d t h es e m ess a g es d uri n g t h e 
i nt er vi e w. W hil e r e vi e wi n g t h e m ess a g e i nt er acti o ns, t h e y will b e as k e d q u esti o ns s uc h as:  
 
 “ W h at di d y o u t hi n k of t his m ess a g e ?”  
 
 “W h at w as t h e p u r p os e of t his m ess a g e ?”  
 
 “W h at d o y o u t hi n k a b o ut y o u t hi n k a b o ut t his f e at u r e of t h e g a m e ( e. g., m e dic ati o n r e mi n d e rs, 
p a r e nti n g s kill m ess a g es, p oi nt s yst e m) ?”  
 
 “H o w c o ul d t his m ess a g e b e i m p r o v e d ?”  
 
 “H o w oft e n s h o ul d y o u r ec ei v e t his t y p e of m ess a g e ?”  
 
 “W h at d o y o u t hi n k y o u r p a r e nt / c hil d w o ul d t hi n k of t his m ess a g e ?”  
 
 “H o w w o ul d t his m ess a g e h el p y o u r / y o u r c hil d’s HI V t r e at m e nt ?”  
 
 “W o ul d y o u li k e t o r ec ei v e t his m ess a g e as p a rt of t h e i nt e r v e nti o n ?”  
 
J oi nt P o rti o n  
 
C o n cl u si o n s : Partici p a n ts will m e et j oi ntl y a g ai n t o disc uss w h at i nt er vi e w ers l e ar n e d d uri n g t h e 
i n di vi d u al p orti o ns. S u m m ari es will b e m a d e f oll o w e d b y q u esti o ns s u c h as: 
 
 “B as e d o n w h at y o u l e a r n e d a b o ut t h e s p ecific m ess a g es i n t h e g a m e, h o w d o y o u f e el a b o ut it n o w ?”  
 
 “W h at s u g g esti o ns d o y o u h a v e y o u t o i m p r o v e t h e g a m e ?”  
 
 “W h at will ot h e r y o u n g p e o pl e a n d t h ei r p a r e nts t hi n k a b o ut t h e g a m e ?”  

V ersi o n 2 1 1. 3. 2 1  
 
7 1  
 
 
 
 “I n w h at w a ys will it h el p wit h a d ol es c e nt HI V t r e at m e nt ?” 
 
 “W o ul d y o u w a nt t o pl a y t his g a m e i n t h e f ut u r e ?”  
 
Cl osi n g  
 
O v er vi e w:  t h e p arti ci p a n ts will  b e  t ha n k e d  f or t h eir ti m e a n d  eff orts  
 
e. g.  “ T h a n k y o u  f o r p a rtici p ati n g  i n ou r  i nt e r vi e w t o d a y.  Y o u  g a v e  us  l ots of  g r e at  i nfo r m ati o n f o r  o u r  
st u d y. Y o u r  i d e as a n d  c o m m e nts  a r e  i m p ort a nt .”