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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 August 20, 2007 11:44 AM
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