Participant ID number: Gender: Date: Introduction
Good afternoon ______________. and thank you for accepting to participate in this study to better understand the barriers to HIV care faced by the patients in the Mbarara ISS clinic. As you know, my name is Nneka Emenyonu and I am a student in the Doctoral program in Public Health at the University of North Carolina Chapel Hill School of Public Health. I am conducting this study as a requirement for my thesis towards a DRPH degree.
The purpose of this study is to get your views on the barriers to HIV treatment and care here at the Mbarara HIV Clinic. You are being asked to participate because you are either a healthcare provider or a patient at Mbarara ISS Clinic. I appreciate your time and honest assessment of the questions I will be asking you in a few minutes. Your answers shall be kept confidential and you shall not be identified in the course of my publication of the data. Your answer will be pooled together with those of other participants to better understand the barriers to HIV treatment HIV care in this region.
I would like to spend the next hour or so asking you some questions about your affiliation with the Mbarara ISS clinic, followed by some questions regarding the barriers
to HIV care experienced by you or your patients and finally, I would like to ask you some questions on how these barriers have impacted your HIV treatment outcomes or those of patients in your clinic.
Question guide (for healthcare providers)
1. How do you feel your patients are doing with the management of their HIV disease?
2. Have any of your patients expressed difficulties with managing their HIV disease? What are they?
3. For you, what is most difficult about treating patients living with HIV/AIDS? How so?
4. What are some of the barriers that have been expressed by your patients? Please Feel free to give specific examples.
5. What do you feel are the most important challenges to delivering HIV care and treatment in your clinic?
6. What do you see as the biggest issue or problem the clinic is currently facing? Why is that a problem? Anything else?
7. How would you rate the services of the clinic on a scale of 1-10 with 10 being excellent?
8. Is there anything else you would like to share or add to what you have talked about during this session?
Interview Guide (for UARTO cohort participants)
1. How long have you been a patient at Mbarara ISS Clinic and for how long have you been on ART?
2. Have you disclosed your HIV status? To whom have you disclosed your status a. Immediate family
b. Extended family c. Friends
d. Co-workers
e. Members of my community (church, school, etc.)
3. How often do you come to the clinic for a routine visit and/or to pick up your HIV medication?
4. How did you get to the clinic? [Probe about transport, costs, process for acquiring money, how long the distance is etc.]
5. How would you rate the services of the clinic on a scale of 1-10 with 10 being excellent?
6. Do you face any challenges in coming to the clinic for your care?
7. Which one of these do you think is the most difficult challenge to overcome: a. Having sufficient food to meet the demands of your treatment
b. Having enough money for routine transportation to the clinic c. Having childcare available when you come for your clinic visits d. Issues of stigma in your community
e. Your physical ability to travel to clinic
f. Seasonal changes in weather – e.g. rainy season
h. Amount of time spent at the clinic during your visit i. The quality of care your get at the Mbarara ISS clinic
8. Is there anything else that you would like to talk about regarding barriers to your HIV care and treatment?
Conclusion
I want to sincerely thank you again for your time in participating in this study. Your input is invaluable and will guide efforts towards improving the HIV care status in rural settings such as Mbarara. I assure you that your answers will remain confidential. You shall receive a copy of my study results upon completion of my study.
APPENDIX II: CONSENT FORM FOR PATIENTS
Consent to be a Research Subject
Mbarara University of Science and Technology, Mbarara, Uganda University of North Carolina Chapel Hill, USA
Barriers to HIV Care in Rural Uganda
Background/Purpose
Nneka Emenyonu of Mbarara University of Science and Technology and University of North Carolina Chapel Hill is conducting research to learn about barriers to HIV care in rural Uganda and to determine the impact of these barriers on HIV treatment outcomes that you experience.
I am being asked to participate in this study because I am an active UARTO cohort participant living in one of two selected communities in Mbarara within 10-20 kilometers of the Mbarara ISS Clinic.
Procedures
If I agree to participate in the study, the following will occur:
1. My participation in the study shall require a one time, one-on-one interview with the study investigator that should last about 1-2 hours in total. There will be no follow up visits after this interview.
2. I shall be interviewed one time by the study investigator. The interview will take place immediately following my consent to participate in the study and will last 1- 2 hours. Interviews will take place in a private room at the study offices in Mbarara or in another location that we will identify. Interviews will be conducted in my language of choice (English or Runyankole). The interviewers are not medical professionals and will not be able to answer questions about my health or my health care. However, I may consult health care practitioners at the Mbarara Regional Referral Hospital HIV Clinic for additional information about your HIV care at any time.