« Conceptualizing the model for the "Adolescent Transition Clinic and Peer Support Program" | Main | Finding out the needs: the research study (Part 2) »
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 July 23, 2007 02:43 AM
Trackback Pings
TrackBack URL for this entry:
http://www.watsonblogs.org/cgi-bin/mt/mt-tb.cgi/1255
