Two Meetings and a Football Match

This week we had 2 meetings about our next steps with the Family Needs Assessment for the children under 18.  Our first one was discussing how to organize the focus groups and the approach that we should use when addressing the children.  We sorted out things like when to hold the focus groups, how many children will be in each group, what age ranges should we use, who will be participating, how will we explain the focus groups to the patients, how should we document what is being said and what form of consent do we need.  Since this took quite a while, we held another meeting the following day with our pyschosocial counselors, Laetty and Edmond, to translate the questions and an introduction paragraph for asking patients to participate.  Lizzy was an invaluable resource by typing out all the meeting minutes and giving her input.  Also this week I was able to skype with Dr. Cohen, the founder of this clinic, and get her input on our progress thus far and next steps for the future.

The agenda for the first meeting is listed below:

Here are examples of the questions that we would like to ask children (ages 12-21) in the focus groups with the translations following:

• Status Disclosure Guhishura uko uhagaze
• How many people know about your HIV status? Ni abantu bangahe bazi uko uhagaze?
• Who have you told? Ni bande wamenyesheje?
• Have they told anyone? Explain. Hari uwo babibwiye? Sobanura.
• When? Why did they reveal this to them? Ni ryari? Ni mpamvu ki yatumye babibamenyesha?
• Who have you not told about your status?  Why not? Ni bande utabwiye uko uhagaze? Ni mpamvu yihe?
• Describe a time when you were at risk for someone discovering your HIV status. Sobanura igihe byari bigiye kuba ko umuntu amenya/avumbura uko uhagaze.
• How did the situation end? Ese byarangiye gute?
• What would make it easier for you to reveal your status?
• In boarding school? Ku ishuli wiga urarayo?
• In your home?  Mu rugo?
• Boarding School Kubaba ku ishuli/ku biga barara
• How do you go about hiding your HIV status (keeping it private)? Ese ubigenza ute kugirango uhishe uko uhagaze.
• In boarding school? Ku ishuli wiga urarayo?
• In your home?  Mu rugo?
• How do you experience stigma from HIV? Ese witwara gute mu guhabwa akato
• Ask for details, stories. Baza asobanure mu magambo arambuye
• When have you missed ARV doses?  Why? Ni ryari utafashe imiti? Ku yihe mpamvu?
• What are solutions for avoiding this? Ni ibiki byafasha mu kwirinda iki kibazo?
• How does the stigma that you experience at boarding school affect your ARV adherence?
• How could this be prevented?
• Self-Confidence Kwigirira ikizere
• Do you feel appreciated at school?  At home? Wumva ushimwa ku ishuli? No mu rugo?
• Are your strengths applauded/rewarded? Ese imbaraga zawe ubona zishimwa?
• How are you disciplined? Ese uhanwa ute?
•   Do you feel that it is deserved? Wumva guhanwa biba bikenewe?
• When do you feel confident in yourself?  Ni ryari wumva wiyizeye wowe ubwawe?
• How does Self-confidence affect your ARV adherence?
• Miscellaneous
• font-family: "arial" , "helvetica" , sans-serif; text-indent: -0.25in;">How can the people in the clinic improve your medication adherence? Ni gute abaganga bagufasha mu gufata imiti neza? 

In other news, Germany lost in the semifinals of the Euro Cup.  So that was sad.

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.

Clinic-wide Meeting

Last week, we had our scheduled meeting led by Dr. Gilbert, Edmond and myself with all the nurses, Abel and the psychosocial team to discuss the Family Needs Assessment.  My main agenda for the meeting was to get clarification as to why this data was collected and try to tease out nurses’ and counselors’ ideas on what information could help them practice better.  I know that we could make correlations from the data that we already had, however, I wanted to gain the team’s perspective to better direct my analysis and suggestions.  They answered my questions patiently (although it was 2:30-4 on a Thursday, so people were ready to go home) and we were able to determine several areas of focus for small group sessions.  These areas included substance abuse, child abuse, HIV stigma and being an orphan.  Edmond presented an explanation as to the current state of the government-funded social services in Rwanda and we discussed whether or not WE-ACTx would benefit from using these.  Since it looks like the funding is limited and most social services are only for temporary problems, there is not much support.  One option is to search for NGO’s addressing social issues preventing ARV adherence in Kigali and forming relationships with them.

In addition, we discussed whether or not it would be valuable to organize small focus groups of children under the age of 18.  It was agreed that children are more honest without their parents present and asking them about our four areas of focus in this setting could be very beneficial.

We all agreed that the next steps for the remaining 4 weeks are to determine children for the focus groups and perform the sessions in Kinyarwanda.  To do this, we will need a psychosocial counselor, either Laetty or Henriette, present in addition to a translator. 

Since all the counselors are off work this week for a training, I spent my time composing a list of Focus Group questions, translating the remainder of the speadsheet data with Augustin and arranging a meeting for next week.  In the meantime, I began working with our data analyst, Jackie, to gather data on patients that we still need viral loads for in order to use it for any correlations or deductions regarding ARV adherence.

Happy Independence Day, Rwanda!

This is the agenda I composed for our meeting.

Family Needs Assessment

In 2014 and 2015, counselors from WE-ACTx for Hope administered a Family Assessment Survey to individuals who were parents of a child under the age of 18 who was being treated at the clinic.  The counselors orally administered a paper survey in Kinyarwanda, the national language, and the data was input into an Excel spreadsheet for analysis and utilization. The clinic wanted to survey HIV positive parents about their children who were 18 years of age and under to determine what familial or social factors they find amongst participants and possibly draw correlations between these components and ART (antiretroviral therapy) adherence.

I spent a large portion of Tuesday reviewing the data with 2 counselors at the clinic.  It is compiled from a massive Excel spreadsheet into organized graphs based on different components of the survey, including demographics, family and income level.