At the IDI, I have learned so much working with and under amazing, dedicated, and well-accomplished people, and at such a high quality institution. The building itself will tell you that. I have learned so much that it is hard for me to quantify. Equally so, I believe I have been able, despite my relatively limited background and experience as just an undergraduate college student from far away in the US, to contribute in a major way to guiding the project forward on a trajectory towards success; on a broader level the contribution has been towards helping support a much-neglected subset of HIV-positive young people to work through the immense challenges that have been placed in front of them so that over time they will realize their bright futures. Through my direct experience (otherwise this would be an empty statement) with IDI young people who persevere and struggle through their problems and challenges, I believe they are true heroes--- at least in the way I define the term. Institutions like the IDI, doctors, nurses, parents, siblings, schools, PEPFAR, private donors etc help, but the strength and courage come from these HIV-positive adolescents, and they will be the ones changing the world come 5, 10, 20, or 30 years from now.

In taking on this project, I was advised to consider whether it was too longitudinal a task and whether I would be able to accomplish the goals I set, or rather “complete” the project. This type of work---helping support the unique needs of HIV-positive adolescents in and outside of care, such that they are put in the best position possible to thrive in the future and win the battle against their disease---will never be “complete”. No matter how much progress is made, there will always be the pressing need to enhance the support systems in place for young people living with HIV. This project itself is indeed longitudinal and like with what I described, in a sense will be a project lasting for years and years to come. As far as the more immediate end goals of the project—establishing the ‘adolescent transition clinic and peer support program’, that is not yet ready to happen, but will in due time. It is natural for everyone to want to see one finished product, something they can say is done, or has a finality to it. I have been guilty of that myself with all the service and other work I’ve done in my life. But my goal in starting this project, or what I consider my stage of “completion while in Uganda”, was to leave what I have started, developed, and guided as a completely sustainable project that will be in the process of moving even as I am en route back to the US, and which will be a great success in the long run. And I will be very involved in that process from the US (the relatively inexpensive US-Uganda calling cards are great!!, as is email of course).

In just twelve weeks, we laid out a problem statement/hypothesis for the project, did a comprehensive literature review to give us the background, and conceptualized a model for the program. We then launched into the process of investigating our hypothesis. We proposed to do an intensive joint quantitative-qualitative research study assessing the transitional healthcare needs of the IDI’s young adult HIV-positive patients, with implications beyond the IDI’s operations to transitional HIV care for adolescents/young adults and to transitional HIV care for this subset in resource limited settings. The implications are especially important because there is little known information or research on HIV care of transitioning adolescents in Africa and other developing regions. It is especially important because it is becoming a topical issue everywhere: thanks to ARVs, more and more children are surviving into adolescence and adulthood. Using the tools of questionnaire and focus-group discussion in the study, we targeted the specific needs and issues facing this special group of young people, whether or not the IDI- as an adult-oriented clinic- has provided comprehensive support to them and how it can improve, and what kind clinic and support network can best meet their unique problems and challenges. With respect to the latter we probed for whether there was a desire or need for many of the specific initiatives suggested in the conceptualized model, which itself was informed by the problem statement.

We have completed study operations, with seven focus groups among the adolescent patients, one focus group among healthcare providers, and over 100 completed questionnaires. We are currently in the process of data entry and analysis for the questionnaires, and transcription of the audio-taped focus group discussions (a long tedious process!). As four focus discussions were conducted in English (three by me), I will transcribe those shortly after touching down in the states, while the other four are simultaneously being transcribed at the IDI. Manual content analysis of the FGDs will be done (It’ll be my first time doing that!), and then they will be “independently rated”, a critical process for us. After all the analysis, conclusions will be drawn and a report will be produced. Based on the initial returns, I have no doubt that the study’s results will give us the concrete information we need to develop an effective intervention (the transition clinic and peer support networks). The initial returns have also been sufficient to give us the green light to start implementing/establishing the transition clinic.

So as the study continues to progress, we are forging right ahead towards starting up the transition clinic itself!, first establishing it and then building in the specialized initiatives slowly. We are working now to get a budget for the clinic, and after allowing for what is available and what isn’t in the current IDI infrastructure, and assessing how to procure additionally needed funds, we will begin shifting patients to have the young adults come to the clinic at their own time period. Hence the ‘young adults clinic’ will be born, and developed including incorporation of peer support groups.

The work I myself will do on the project is not complete, as I will happily be able to continue from the USA however possible and follow its progress closely. And the project is in great hands (those of passionate and committed colleagues, and more enthusiasts who will surely jump on board) to be carried forward with energy and determination.

My time in Uganda, my work at the IDI, and the adolescent support project….. “approaching the end” can only be said together with “just the beginning”.

Yet this has only been part of my work---what about the very adolescent/young adult transition clinic and peer support system itself? Even while we have conducted the study, we have begun and moved forward with the process of looking into what the actual clinic would look like and how it would function---an exploratory phase in which we have focused on the complex finance, resource, logistical aspects.

Let me start with the numbers. At the very beginning of the project, we had to find out just how many of our target patients there were. If we found out there none, then there wouldn’t be much of a project! Now granted we knew there were quite a few. But we were quite surprised to find such a large number of almost 400 patients! This is a lot because the IDI healthcare providers never seemed to notice anywhere near that many. But it indicated that this was an even bigger need than we had initially thought because there were so many. And the surprise at the number (the lack of awareness at just how many of the patients there were in this subset at the IDI) revealed just how lost in the fold these patients currently were in the adult-dominated clinic based on an adult-oriented mode of care. Further information for these young adults like contact information, age, antiretroviral status, most recent and next scheduled visits, etc was elusive, but with the data management team we eventually found it!

Considering potential days and times for a separate period of time (young adult clinic) when just young adults would be seen was a most critical step. After all, one can’t determine the resources required and the logistics without determining when this could and perhaps might take place… if all the stars are aligned down the line! To start, the IDI clinic is already extraordinarily over-congested and struggling to manage the load given its capacity- which is really high! It is attempting to start encouraging patients to move to satellite clinics in their local clinics (and it is helping build the capacity of those clinics), not just to decongest the IDI but to have patients receive care in their home communities and reduce general dependency of the city’s population on the IDI. In any case, isolating a separate time for adolescent/young adults would not be easy given the congestion.

The IDI clinic operates Monday-Friday with the exception of Wednesdays in which the clinic does not operate (“special Wednesdays”). Despite the decision to keep Wednesday free for other activities, this seemed initially like a golden possibility to open the IDI clinic for part of the day with certain staff operating who could make the time available because of the flexibility of their activities.. However, this idea proved to be more of a rotten egg! On the whole, there are just too many activities to free up enough staff. The mornings are reserved for outreach to satellite clinics (KCC, or Kampala City Clinics) for HIV-related care provision (they are general practice clinics) but especially to help build capacity in clinical care, management, other areas etc. Half of the IDI clinical staff would travel to these clinics, alternating each week with the other half of the clinic staff. Those not traveling to the outreach clinics were involved research meetings, working on the research studies they were involved in. In the afternoons, there were departmental meetings, department leadership meetings, general staff meetings, and a host of other activities. Plus, having a break from direct clinical work on Wednesdays is something I quickly came to learn is treasured by the staff, who would be quite unhappy to give it up (I wouldn’t either from the load I see them carry the other four days of the week!). So the combination of a hectic schedule of activities for all clinic staff and a desire to keep “special Wednesdays” effectively eliminated the possibility of having a separate clinic on Wednesdays.

What about an evening clinic that operated after the normal adult clinic closed at 4? Having it in the late afternoon/into the evening (say 4:30-8 PM) outside normal clinic hours in of itself could signify that this is a different clinic with a the true intention of being really “youth friendly.” It would also be easy to coordinate the Creativity Initiative with this time block. It might also help those who are in school. On the other side of the coin, the late time could make it more difficult for younger Friends to come, and they may not have the energy to make the trek from often far away distances. A much more significant issue would be staffing a clinic operating in this evening time period. Could current clinical staff work 8 AM- 9 PM one day a week? 8 AM- 4 PM is already exhausting, and even if they were devoted to the cause of providing specialized young adults care (and receiving overtime pay), is it reasonable (even sane?) to expect them to work and effectively so for that many hours consecutively? Also, the success of a ‘young adult clinic’--- in its fundamental mission to provide specialized, personalized care for adolescents--- would be compromised if clinic staff were so exhausted and worn down that they would be unable to put in more effort and energy than would be required in even the normal clinic! So other possibilities in this evening model include bringing in part-time staff to operate this ‘young adults clinic’. Bringing in new staff seems to be undesirable. A creative yet challenging idea put forth by the IDI Director himself was that of “shift splitting”, an idea not that amenable to staff anywhere perhaps but an important possibility as a solution to staffing problems of this sort that is being utilized more and more in Europe. What is “shift splitting“? Let’s say that the ‘young adults clinic’ will operate on Tuesday nights. Let’s divide Tuesday’s working day into three blocks: morning (8-12 AM), afternoon (12-4 PM), and evening (4-8 PM). Looking at nursing as an example, they work the morning and afternoon periods in the normal system. In this structure, there would be three periods instead of two, and a reduced number staffing each four hour shift. Some staff would work the morning and evening shifts, but have the afternoon shifts off. Others would work the afternoon and evening shifts. This would maintain the 8 hour day and prevent additional funding from a budget very-much overstretched. It might not, however, be desirable for staff who don’t want to work at night or have a big gap of time in the afternoon where they cannot go home and have nothing to otherwise do with their valuable time. Additionally, in the resource allocation survey and analysis I did (discussed below), the heads of all the departments said that they couldn’t afford to have reduced number of staff in the morning or afternoon periods given the high patient load. Literature has indicated initial hesitation at this type of scheme, but often acceptance over time. So a possible solution yet complicated issue no doubt….

There is one other option for when to operate this clinic, which is how we may start the “young adults clinic” as sort of a trial particularly because it is feasible given current resourcing limitations (described below). This would be during an afternoon of the regular clinic, moving adult patients from that time to other periods and shifting the adolescent/young adult patient appointments to this time. We have explored this, and such a process of shifting patients in this manner would take possibly two months since appointments are made on a monthly basis only when each patient visits. But you may be wondering how this is possible when I just cited how congested the IDI already is. The adolescent/young adults are already active patients receiving care at the IDI and there are enough to saturate a clinic afternoon, so our thinking is that it is just a shifting of patients-- unless more are added (which is not in the immediate plan).

Let me describe what was a fun process to obtain estimates for the human resources needed to run a model young adults’ clinic. The estimates are based on the once-a-week evening clinic model. Interestingly it is the most complicated of all the options I outlined, but that’s what made it particularly fun and challenging. This key step in developing the clinical component of our program was one of the most enjoyable endeavors of my work this summer. It involved running around and tracking down (I love doing that type of thing) the heads of each clinical department---nursing, reception, doctors/clinicians, counselors, records, data management, laboratory, pharmacy, and even cleaning services. I had to ask around repeatedly to get the names of those in charge and upon locating them, it took a few minutes for them to figure out who this random person was they had not yet met!, and what I was inquiring about (I was looking for the number of staff needed in their department for a proposed young adults clinic operating on one night a week for 3.5 hours). I explained what the transition clinic project is and that we were in an initial exploratory phase (I later found that I had not been clear enough- some thought we were starting this right now!!).

The allocation estimates were as I said for a potential evening clinic happening once a week, let’s use Tuesday evening as an example. In this allocation estimate we used the assumption of 400 patients in total, and since they all are supposed to visit monthly, we also assumed that there would be 100 each Tuesday (they would divided up evenly per week. We deemed 3.5 hours a good enough time for the 100 patients to be treated on a Tuesday night. Using these guidelines, I sought from each department an estimate of how many staff they thought would be needed to operate a clinic---just like a normal clinic---for 3.5 hours treating 100 patients. The numbers are in this document: “Human Resource Allocation Estimates”.

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The estimates are straightforward for doctors, counselors, nurses, data entrants, receptionists, and records persons. For nurses, I learned that there were three types- those who saw patients just as doctors do (nurse visits), those working in the clinic doing the initial screening with history and vital signs, and those working in triage (stationed at reception). For laboratory (CD4, CBC testing etc), the deadline for blood sample submissions would need to be extended, which can be tricky since the current deadline requires lab personnel to work late into the night and it is important that CBC tests be analyzed the same day (and desirable for all to be analyzed the same day). Cleaning is done by a contracted company, but it appears possible to move forward their time period to accommodate an evening clinic. Perhaps most complicated is the operation of the pharmacy, because it ends up operating at least an hour after the last patient is seen at the normal clinic (so if last patient seen at 4 PM, its load won’t end until 5 PM- I call this the “pharmacy lag”). Exacerbating this is the fact that the normal clinic often runs up to 1-2 hours beyond its end time. Naturally patient load would have to be managed carefully on the ‘young adults clinic’ day so patient overflow beyond the end of the clinic time will be minimized, especially for the sake of pharmacy operations within and between the two clinics. My idea for a solution to the pharmacy lag problem was to have the pharmacy begin operation for the young adults center an hour after the clinic starts (allowing for the adult lag), and then give it some extra time at the very end of the evening clinic for its inevitable lag. So my thought was that if the clinic would operate from 4:30-8:00 PM (patients being seen), the pharmacy would operate from 5:30-8:30 PM, allowing for both the previous clinic lag and the evening clinic lag.

One of the reasons I loved the human resource allocation project was that it gave me a crash course on the ins and outs of how a high-level HIV-specialized clinic in a resource-limited setting operates. I also get a sense of how complex things can be and how easy it is for a variety of problems to crop up every single day, but also how carefully thought through the entire process is. For things to go right and for reasonable time to be kept, records must locate and bring the correct file to reception, which in turn must process the file and according to the patient’s appointment card send them to the nursing or clinical wings. The nurses must be able to easily access the patients’ files amongst many, take history and vitals, and ensure that they go to the right room for their clinical appointment. Following that, the patient must be directed to a counselor if they are seeing one in this particular visit, to the laboratory to get necessary tests done, and/or to the pharmacy to receive their meds.

The resource allocation estimates that I did are critical to moving forward the process of establishing the beginnings of the clinic itself. The IDI clinical budget is stretched thin, and it took some creative maneuvering just to fund the research study. The plan all along, given the unlikelihood of internal financing, is to present a proposal for the Adolescent Transition Clinic and Support Program (with the study report as the foundation) for external funding. In the meantime, we hope to start by having the clinic during an afternoon when the clinic would normally be operating with its regular cohort of patients (majority adults maybe mixed in with some of our young adult Friends). This would involve as described moving patients around such that during this particular afternoon every week, the clinic would serve just young adults. Then the unique initiatives would be gradually integrated once the young adults are set into this time period. The thought is that this would be more cost-effective to start because the clinic infrastructure is in place, the young adults are already IDI patients with comprehensive care covered like all the other patients, and shifting patients would be relatively straightforward and require minimal time. Providing the resource allocation estimates and the initial concept paper (describing the type of clinic we envision/conceptualize), we have requested from Finance to create a budget for a clinic. This initial budget would assume just the physical infrastructure and budget for every cost a clinic would require from overhead to drugs. From there we will then, depending on the model we use, narrow the budget down based upon what it is already in place or can be provided for in other ways.

One other thing we have also had to think about is the process of keeping the clinic staff informed about the needs we have observed, the study, and the interventions we have conceptualized (clinic and support program). It is not just about informing them and trying to bring them on board with the project, but listening to their experiences working with IDI adolescent/young adult patients, assessing what they think about the importance of adolescent/young adult care at the IDI, what needs of adolescent patients they see and believe are most pressing to address, and their opinions and ideas about the suggested intervention. Monthly general staff meetings (GSMs), departmental meetings, inter-departmental leader meetings provide the chance for informal discussion. In the near future, I would like to administer more of a formal staff survey/assessment asking the aforementioned questions. We would be sure to provide the results and conclusions that we have drawn to date in the surveys.

We had to gain IRB approval for this study, a process which always takes a lengthy amount of time. In the interim, we were granted permission to run a pilot- we administered 12 questionnaires (no FGDs). This was very helpful in multiple ways. Its success as documented spurred the IDI’s Scientific Research Committee to push ahead for expedited IRB review of the proposal. It also gave us some data which allowed us to make some critical modifications to the questionnaires, and evaluate which needed information we may not have been getting from the questionnaires alone- such information would need to be brought out in the FGDs, the guides for which were accordingly modified.

After gaining approval and securing the financial resources, we began study operations!—a time and manpower intensive period. Earlier in the summer we had worked hard with data management to generate what would be elusive information about the 379 or so active (visited the IDI for treatment or medicine-refill in the last six months, or not “lost to follow-up”). We called them and invited them to come at designated times to participate in the study. On all the days they came at 2 PM, and in the first hour they would fill out the questionnaires (administered, meaning that we as facilitators reviewed each question thoroughly beforehand and answered questions during completion). They had the choice to fill out an English version or a Luganda (the local language) version. At around 3 or 3:15 we provided refreshments and snacks, and then organized the young adults into groups of 8-12 for the focus group discussions.

I led two of the 'young adult' focus groups out of seven and observed a third. It was a great learning and fun experience, and more importantly it was a great chance to hear directly from our young adult patients what their needs are and how we can best help them. I improved in moderating with each focus group discussion I led, but I still have a lot of work to do on that. It helps to have the tapes so I can now go back and listen.

After the FGDs, we gave each participant some money for transport reimbursement and a small stipend for their time and participation. We ran seven focus group discussions (almost two each day) for the active young adult patients—each had one moderator and up to two observers. The moderator facilitated the discussion following the guides and keeping the discussion on track, while the observers took notes. The discussions were tape recorded for subsequent transcription (key to the data analysis process). Many participants were much more comfortable discussing in Luganda, so since myself and one other were only in proficient in English (I’ve learned some Luganda, but I certainly can’t lead a focus group discussion in it!!), we separated out those comfortable with English and those not. Four of the focus groups were in English, and four were done in Luganda

We ran an 8th focus group discussion among healthcare providers, the third group I moderated (see photo below). Holding such a focus group is necessary because the healthcare providers have critical insight into the needs and clinical/non-clinical experiences of the adolescents/young adults, and also have fresh perspectives and ideas. I wanted to get a diverse group of healthcare providers, both adult and pediatric-oriented (there aren't adolescent-specialized care providers!). After all, if you just have IDI care providers who are trained in adult care, and who care for adults at the IDI, you're missing information that pediatricians who work with the subset regularly may be able to provide. And those pediatricians are available right around the corner at the PIDC (Pediatric Infectious Diseases Clinic, IDI's partner). I also wanted to make sure we got others beyond just doctors/nurses/counselors who interact with young adults at the IDI clinic and might have insights into how to improve their experiences and cater to their needs. So participants included one participant at IDI clinic reception, IDI pharmacy dispenser, 2 IDI (adult-oriented) doctors, 2 IDI counselors, 2 IDI nurses, 1 PIDC (pediatric-oriented) doctor, 1 PIDC counselor, and 1 PIDC nurse. It went extraordinarily well, and the information we got was terrific--I believe in large part due to the diverse group and the exchange of ideas and information between them within the discussion.

Though operations were intense and a bit chaotic, the study went off very well! We generated a lot of data, and from being involved with much of it (moderating and observing FGDs, briefly reviewing the completed questionnaires), my sense was that the information we obtained would answer most if not all of our questions and be invaluable in informing the development of the clinic and support systems we wanted to design. We’ll see if that’s the case as we proceed the data entry/analysis and manual content analysis of the FGDs.

Managing the overall operation and being in charge of all the little details really gives you an idea of all the little things that have to be accounted for…and all the challenges that come up and require immediate on-the-go solutions! The operations were made possible by the many critical functions performed by the people involved in the study: the canteen procuring and preparing large amounts of food and drinks (sodas, waters, bananas, samosas, cakes); a few people making literally hundreds of phone calls to get the number of participants we needed, the study team working late into the evening hours running the FGDs and administering the questionnaires and debriefing, transferring the audio streams to the computer using complicated software, preparing stationary and prepping moderators/observers, making sure participants who come early are kept occupied (many came hours early, and others joined who were already present for care on that particular day), securing rooms, etc.

I have learned so much from helping manage the detailed planning, organization and administration of this study, but even more from working with and under the supervision of people with great knowledge of the issues, long-term experience with high-level research, and leaders in their various fields. There are so many subtleties that I hadn't previously taken into account involved in conducting high-quality and effective research, and many different methods I did not know or had not been well-versed in. Working on this study has been a great learning experience, and will serve as foundation of knowledge and experience (a launching point, so to speak) for research I may conduct in the future.

I mentioned before that the study contained a five page questionnaire and focus group discussions---a combination of quantitative and qualitiative research that I believe can give us as full a picture as possible of what we are looking for. I am fairly comfortable with and have previously done quantitative research---recently, related to these very issues, and in Uganda(!) during my work in December-January (winter break) in the eastern district of Iganga. I knew a little bit about qualitative research, but to be honest I didn't have much faith in it as an effective tool for collecting data. But my supervisor, with long experience using research methods, showed me both in previous studies and through our study how effective qualitative methods can be in bringing out data that cannot be found in quantiative questionnaires. For instance, there were many things we wanted to know in our study that our long, comprehensive questionnaire couldn't really give us---but we were able to target these in our focus group discussion guides and fill the gaps found in the questionnaires.

So the questionnaire:

I designed the original draft/template of the questionnaire trying to think of every possible way to bring out information that could help our research and ways to phrase them such as to optimize clarity of data. It underwent seven reviews by different groups of people, each bringing different perspectives to the table. I was thrilled with the comprehensive review and quality control, though by the end of the process I decided I never wanted to look at that questionnaire or any other again:-)!! Here’s a sample of what we targeted:
----Comfort level attending the IDI clinic and quality of experience (whether youth-friendly)
----Comfort level being treated in same clinic as older adults (and interactions/familiarity if any)
------Type of clinic most desirable (particularly a separate clinic time period just for young adults versus the current system versus other alternatives)
------Problems they may be facing (whether or not) regarding for example disclosure, taking medications, concerns about future etc
------Whether they talk about these problems with their care providers at the IDI, whether feel comfortable doing so, what might make them more comfortable if they desire, if they do or want to with what care providers (counselors, nurses, doctors etc)
------Whether desire for seeing designated care providers, regular follow-up, meet with counselor every time etc
-------Whether support groups in home communities, whether desire for peer support groups, desire to discuss issues with peers, and level of HIV/AIDS knowledge they feel they have

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The conceptualized model:

The proposed Adolescent Transition Clinic and Peer Support Program at the IDI would provide comprehensive care of adolescents (approximately ages 16-24) transitioning from pediatric to adult care. The integration of the characteristic needs of HIV-infected adolescents into the IDI clinical setting and into their support systems is essential for the facilitation of effective pediatric to adult care-transition. The ‘Adolescent Transition Clinic and Peer Support Program’ would consist of a separate clinical time period exclusively for adolescents at the IDI going hand-in-hand with peer support groups. As previously described, the IDI clinic is unique especially because of its “creativity initiative”, which helps create a support community among patients and fosters de-stigmatization. To remind: while waiting for care at the clinic, patients in the clinic play board games, draw, and paint. Groups of patients at different times engage in ‘music-making’, which brings the clinic to life. One possibility is for some of the adult patients who are involved in music-making and teaching entrepreneurship to be active during the Transition Clinic time period, with the hope that adolescents would join the music-making and take part in other activities like entrepreneurship. This initiative would be consistent with the goal of creating a youth-friendly environment that the adolescent patients will be drawn towards.

This transitional model would establish a youth-friendly clinical setting. More time will be allotted for each patient (the separate clinic time period would allow this), with doctors and counselors prepared to refer patients to appropriate resources as necessary and subsequently follow up on that. Patients would be encouraged to meet regularly with a counselor. The development of a strong, trusting ‘healthcare provider’-patient relationship is critical. Patients will see the same doctor, nurse (some patients come just for ‘nurse visits’ rather than see a clinician), and counselor each visit, which will aid in this process. The issue of the young adults consistently seeing the same care providers is especially important for this group of IDI Friends (again, all patients are referred to as "Friends". Doctors and counselors will need to cultivate the relationship, such that over time the adolescent/young adult patients will gain trust and be more willing to utilize them as valuable resources and guides. As adolescents can be less secure than adults, this will require healthcare providers to proactively work to get to know their patients and bring to light any problems or challenges (extending beyond medical care) that they are dealing with. At current, the IDI follows up with patients via phone only if they do not come for their monthly visit. Follow-up with adolescents in the ‘Transition Clinic’, however, would occur regularly to ensure continued care, especially given that adolescents are more likely to drop out of care than adults.

The idea of changing the clinical mentality and altering accustomed healthcare provider-patient relationships will require focus group discussion among primary care-providers to get their feedback on and reaction to the proposed model, and integrate their input. Subsequently, training workshops would be conducted to help equip the healthcare providers to effectively care for adolescents and address their unique needs.

The other major component of comprehensive care is the establishment of peer support groups for all the adolescents/young adults in care at the IDI and PIDC, meeting once every month. This will bring HIV-infected adolescents together with their peers to form a supportive community working towards awareness, understanding, and prevention. The peer support groups will help bridge the HIV knowledge gap, as revealed in the aforementioned PIDC sexual reduction risk study. They will provide resources and concrete strategies for safe sexual activity and prevention, and foster the development of life skills. A fundamental component of this will be the initiative of ‘adolescent involvement’: facilitation of peer support activities, creation of communication materials and dissemination of information etc. This will facilitate participatory awareness and empower these emerging young adults to take charge of their own futures and health care needs.

Specifically, in the peer support groups, the goal is to a) develop communication and information materials (presentations, brochures, posters) with the adolescents, b) conduct innovative skills learning (drama, poetry, writing etc), c) facilitate the sharing of information, challenges, and achievements in a youth-friendly environment, and d) encourage adolescents to get involved in community extracurriculars (sports, debates etc), apprenticeships, and outreach.

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The model described is a conceptualization, an initial idea which has given direction to the overall project (a concept of what we might see in the long run) and more importantly served as the framework for the ‘needs assessment’ research study we are currently in the process of conducting. The study “Assessing the transitional healthcare needs of HIV-positive young adults in resource limited settings” involves both a quantitative component (lengthy questionnaire) and a qualitative component (focus-group discussions). The problem statement was critical in informing what areas/issues (e.g. whether there is the stigma of being in a clinic with young adults, or a lack of effective peer support networks etc) we needed to explore in the study and how we would go about (methods) doing so The suggested model informed what specific interventions we would target for evaluation of desire/need (e.g. the desire/neede to arrange for young-adult patients to meet with a counselor every visit, the desire/need to provide information about HIV and other STIs etc).

However, the problem statement must be validated or refuted by the results and conclusions drawn from the research study, currently in progress. From there, we will be able to develop an official model that is based not on the problem statement, but on the needs and desire of the young adult patients as explicitly expressed and demonstrated during the research study.

The IDI is cited as a model for HIV/AIDS care, treatment, research, and training in Africa; my experience here has done nothing but affirm that for me. The IDI provides free care and antiretroviral/psychosocial treatment for over 10,000(!!) patients, trains doctors from around Africa (thus far from over 22 countries), conducts cutting edge research, and empowers patients to be agents of change in their home communities through innovative initiatives. One of these is the “creativity initiatives”. Because of the high volume of patients receiving care at the IDI, patients have to wait for quite a long time. All patients at the IDI are called ‘Friends’. The queuing system is set up so that patients’ names are not called out; rather each patient is given a number and they see their care providers when their number is posted. During the wait, groups of patients sing and play music, others play board games, other draw and paint, and still others participate in entrepreneurship activities (like making beads and necklaces for small income). This has fostered de-stigmatization and created a community of support: patients can look forward to their visits to the IDI.

That’s the organization I’m working with. What is the project I’m working on?
Before describing the specific project, some background is necessary…

In recent years anti-retroviral treatment has reached more and more HIV-infected children in Uganda, affording them the opportunity to live longer and higher-quality lives. However, as this subset of successfully treated children progresses through late adolescence and into adulthood, they require specialized transitional care to support their unique needs, which the exclusively child- and adult-focused HIV care systems currently in place are unable to meet. At both the IDI (containing the adult infectious diseases clinic) and the PIDC (the pediatric infectious diseases clinic), there is a large subset of HIV-infected adolescents, in the age range of roughly 17-24.

My role this summer has been to lead the team that has been tasked to create a model to provide comprehensive care of the HIV-positive adolescents at the IDI and PIDC. We have named it "The Adolescent Transition Clinic and Peer Support Program". In this model, the unique needs adolescents will be catered to and their overall well-being looked after.

More details to come very soon…