August 20, 2007
Approaching "the end", but really "just the beginning"...
My time in Uganda is rapidly coming to an end. To my sadness I will shortly be departing. To my joy, I will leave with a large collection of things that one can’t put their hands around, so called “intangibles”: diverse experiences, accomplishments, challenges, frustrations, friendships, lifelong friendships that border on deeper kinship, knowledge, perspectives, understanding, and above all memories that will last me a lifetime and beyond. This has already been my second trip to Uganda with many more to come (I don’t make empty promises!); the country has become a second home to me. My time in Uganda was not just spent speeding around Mulago Complex and the IDI. I got to know Kampala—it was the first real city I lived in (Providence doesn’t count in my book) and it grew on me very quickly. I saw and came to know the country of Uganda on a much more intimate level than my first time here-- I traveled to the north—Gulu, Kitgum, Lira, and took a brief sojourn to Rwanda—the land of rolling hills. But most frequently—on most weekends and spare days I was to and fro my other Uganda “home” in the eastern district of Iganga—continuing full force with the project I started there in December/January to help provide education and healthcare access to Iganga’s rural areas where there is little if any infrastructure. We made great progress there too, and it was fun reconnecting with the special people I met and grew so fond of during my first venture into this country.
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”.
Posted by Vijay Narayan at 11:44 AM | Comments (0) | TrackBack (0)
August 07, 2007
Moving ahead with the actual "adolescent transition clinic and peer support program"
The research study assessing the needs of adolescents has been a core part of my work this summer, laying the groundwork for creation of the adolescent transition clinic and peer support program by ascertaining whether it is even needed, why it is needed, and in what ways such a program should and can feasibly be structured/organized to best meet the unique characteristic needs of the IDI’s adolescent/young adult patients.
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”.
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.
Posted by Vijay Narayan at 11:56 PM | Comments (0) | TrackBack (0)
July 31, 2007
Finding out the needs: the research study (Part 2)
Continuing with describing the study tools: after finalizing the needs assessment questionnaire, we formulated focus-group discussion guides---to guide the moderators in facilitating the discussions. The questions and probes were most carefully conceived to find very specific data just as the quantitative questionnaires were. Yet as I mentioned, FGDs (focus-group discussions) can bring out different kinds of information and insights than questionnaires. The FGD questions included what young adults see in their futures, their problems and concerns, who they talk to about their problems, whether and how/how not the IDI has helped them with their problems and challenges, and what kind of clinic they would design if they were given the choice.
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.
Posted by Vijay Narayan at 04:05 AM | Comments (0) | TrackBack (0)
