Collecting qualitative data from people with HIV who are not in medical care: Protocol for a national semi-structured telephone interview project (Preprint)

Abstract

The Medical Monitoring Qualitative (MMP-Qual) Project was designed to collect qualitative data from people with HIV (PWH) not engaged in medical care that would complement quantitative data collected by the Medical Monitoring Project (MMP)—a national surveillance system—and inform MMP’s recruitment and data collection methods.

Our objectives are 1) to describe the methodology of this project, 2) to reflect on the challenges and lessons learned from conducting qualitative telephone interviews at a national level, and 3) to describe how we used and plan to use the qualitative data to evaluate our recruitment procedures and quantitative data collection instrument, and knowledge of HIV care engagement.

We used quota sampling to identify and recruit participants who had participated in the structured MMP interview into the MMP-Qual Project. To be eligible participants must have had an HIV diagnosis, been ≥18 years, lived in an MMP jurisdiction, and have not been engaged in HIV medical care. From 2018–2019, we conducted semi-structured telephone interviews with 34 PWH across the United States about several topics (e.g., barriers and facilitators to care, experience with surveys). Four trained interviewers conducted semi-structured 60-minute telephone interviews with 36 participants. Data collection lasted from August 2018 to May 2019.

One-hundred-and-thirteen people were eligible to participate in the MMP-Qual Project. Of people recruited, 28% refused participation. Of those who accepted participation, 63% were interviewed and 37% were no-shows. Forty-four percent of participants were ≥50 years, 76% were male, 65% were Black or African American, and 34% lived in the South.

We learned that it is possible to obtain rich qualitative data from PWH who are not in care via telephone and that this mode might be conducive to talking about sensitive topics. We also learned the importance of flexibility, communication, and coordination, as we relied on health department staff to perform recruitment and had difficulty implementing our original sampling strategy. We hope that other projects will learn from our experience conducting qualitative telephone interviews with PWH on a national level.