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
July 23, 2007
Finding out the needs: the research study (part 1)
The study we are in the process of conducting seeks to determine the needs of HIV-infected adolescents at the IDI, and what specialized care they may require. There is a dearth of literature and knowledge on transitional care of adolescent/young adult patients in general. In the initial literature review I conducted, there was no known transitional healthcare research of any kind in Africa to date, and what existed in the US had nothing on young adults with HIV;AIDS (a lot more on cystic fibrosis, other disorders etc.) So to our knowledge, there was little literature or research conducted on transitional healthcare needs of adolescents/young adults, and nothing in resource limited settings (e.g. Africa!). Initially we thought of conducting our study just as operational research--i.e. a study just to evaluate a component of IDI operations to help inform interventions we might undertake (e,g the transition clinic etc) to help meet the needs of our young adult Friends. But we realized the potential utility of this study to provide critical information about transitional healthcare for young adult patients, specifically young adult patients with HIV, and even more importantly young adult patients with HIV in resource-limited settings like Kampala Uganda.
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
Posted by Vijay Narayan at 02:43 AM | Comments (0) | TrackBack
July 16, 2007
Conceptualizing the model for the "Adolescent Transition Clinic and Peer Support Program"
I left off in the last entry giving the background of my project to create a specialized support and clinical care model for HIV-infected adolescents. The idea for this project—way back when— came from the observations and testimonies of a number of people involved in the care of IDI adolescent patients, all of whom saw glaring needs that were not being met by the current system. Based on this information, we developed the problem statement (hypothesis) and suggested a model that could potentially meet the needs of the HIV-positive adolescents at the IDI that were identified by a number of care providers.
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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.
Posted by Vijay Narayan at 02:19 PM | TrackBack
July 10, 2007
Update on the project!
I’ve now been in Kampala, Uganda for over a month, and it’s more than about a time I provide some updates on my work here! To start it has been wonderful to back in Uganda. I was here for four weeks over winter break, working with a rural development NGO in the eastern rural district of Iganga. In Kampala I am working with the Infectious Diseases Institute, or the IDI, which is located in a huge complex including the national referral hospital (Mulago), Makerere University Medical School, Pediatric Infectious Diseases Clinic (formerly part of the IDI), Johns Hopkins-Makerere Collaboration, UCSF-Makerere Collaboration, and more.
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…
