Focus Groups Update

After looking at the data from the 181 patients surveyed during the Family Needs Assessment that focused on children under 18, we discovered that 1/3 of the patients never reported their viral load during the survey.  This meant that we would not be able to correlate their health outcomes to their management of HIV since ARV adherence is determined via viral load per the most recent WHO guidelines (2015).  Therefore, I compiled a list of patient names and our data analyst helped me to search the national EMR and WE-ACTx for Hope's paper records to fill in the gaps.  While about 1/4 of them were not on ARV's as of yet, the addition of this data was still important.  Now, instead of 67% response rate, we have an 85% rate of data that we could correlate to ARV adherence.

Another concern was the duplication of one patient name on the list in addition to not all the survey results being translated into English.  Therefore, I sat down with one of our bilingual employees that assists our data analyst and spent several hours finished translating.  Initially we were translating from Kinyarwanda and conversing in English, but when we discovered that Swahili was a better method of understanding each other, we switched to that.  He would translate the Kinyarwanda written responses into Swahili and then I'd write them in collouqial English.  Additionally, we discovered while doing this that many of the "Comments" sections which were filled in were not done so in legible Kinyarwanda.  Therefore, some of the results still remain in Kinyarwanda since they weren't legible to a native speaker.  Alas!

After these strides, we planned to sit down on Thursday with the doctor and one of the trauma counselors to discuss the details of our next steps: organizing Focus Groups.  We needed to determine things such as which age groups we'd group together, how many children would be in each focus group and how to supportively word the questions to encourage responses.  While at the Nyacyonga clinic with Edmund, we discussed his impressions of the focus group draft of questions.  He pointed out that he wasn't clear on what a focus group was since he's never done one before.  I explained that focus group sessions would allow for more specific information and for us to ask more questions and hone in on responses as to what and why these factors are affecting HIV adherence.

Nyacyonga Again

Nyacyonga Clinic

Yesterday was my second visit to Nycoyonga, the slightly less urban clinic that WE-ACTx For Hope partners with to assist in providing care once per week.  I traveled with Edmund, our trauma counselor, and Dr. Gilbert, our clinic doctor.  It was my turn to shadow Dr. Gilbert was he finished some patient consultations.  He saw 6 patients in total, with concerns ranging from chlamydia to pelvic inflammatory disease (PID).  His adviced also ranged from giving antibiotics (Deoxycycline) to going to the closest hopsital for X rays and blood work.  

One of the HIV positive patients came in because he recently had a Rapid HIV test at a different clinic that came up negative.  This man had been HIV positive for 10 years and on ARV's for 8 years.  His wife was HIV negative, so they are considered a discordant couple.  He wanted to talk to the Dr. Gilbert because he wanted to stop his ARV's since he had now tested negative for HIV.  His wife was also encouraging this.  Dr. Gilbert was explaining the mechanism of action of HIV and why, even though he still have HIV and needed to take ARV's, the test had said he was negative.  Thus, he left choosing to remain on his medication and glad that he had consulted the doctor.  Smart man.

Dr. Gilbert setting up in one of the offices.

Edmund, me, Dr. Gilbert and Chantal.

Random fact about Dr. Gilbert:  While working in Partners in Health (PIH) in Rwanda before he joined WE-ACTx, he worked alongside Paul Farmer multiple times, who also taught him how to perform a lumbar puncture at one point.

Random fact about Edmund: Before becoming a trauma counselor, he was a self-taught professional photographer.  He used to photograph weddings and other events (which explains why the lighting on this photo is way better than my others - he helped us figure it out!).

Nyacyonga Clinic

                                  

                                       Nyacyonga Clinic

    Located about a 40 minute drive outside Kigali (per private car), we sped past the dwindling villages until we reached this clinic perched upon a hill.  The nurse was very relaxed as patients passed their HIV tracking books (Kubonana Na Muganga) through the metal grates of the open windows and the social worker-in-training typed their names into the Rwandan National Electronic Medical Record (EMR) to check their insurance and registration.  They then passed whichever combination of meds the patient needed back through the window along with their little tracking books.

Here are some of the materials (aside from the computer and EMR) that the clinic used to ARV info:

List and explanation of dosing of ARV's for children under 15yo

Book to track discordant couples, or couples with one
HIV+ partner and one HIV negative partner

Book of Patient records (Dossier) plus a prescription pad

See a brief video of the scenic drive here: