Interview process

All individuals who attended any of the three clinics offering HIV services in Kisesa health centre were invited to participate in this research. No invitations or advertisements were used to invite individuals to participate in this research. There were no restrictions based on age; if a patient was less than 18 years of age, they were required to have a parent or legal guardian present. Informed written consent (for adults) and assent (for those <18 years) were obtained from all individuals who participated in this project. Figure 2.1 overviews the PIRL process used for this PhD research.

38 Figure 2.1: PIRL process

39 As individuals arrived at the clinics, a fieldworker introduced him/herself and then described the study. Since the CTC and ANC have high patient loads who often arrive to clinic before opening, the fieldworkers, upon their arrival and at regular intervals throughout the day, introduced themselves and provided information about the project to all patients in the clinic’s waiting room as a group. In the HTC, individuals tended to arrive steadily throughout the morning, which enabled the fieldworker to introduce him/herself and the project on an individual basis as the patients arrived. In each clinic, the fieldworker handed out number cards (e.g., 1-20) to clinic attendees with the intention to be in the order in which patients arrived at the clinic.

The fieldworker then invited an attendee by number to a desk located within the clinic but out of the way of normal clinic operations to conduct the brief record linkage interview.

We tried to situate the desks in a private area, but given the limited space, some were off to the side of the waiting room. The interview only involved asking for demographic information, such as name, sex, date of birth, and residence details, and did not ask for any medical information.

The primary goals of the interview were to identify the true HDSS record(s) and to confirm residence histories of all participants using the PIRL software. I trained the fieldworkers to use interview tools and ask probing questions such as, “How long have you lived in your current residence?” As a patient gave details of their residence history, the fieldworkers were trained to construct a residency timeline on a notepad (Figure 2.2).

Since the first HDSS survey was conducted in 1994, the fieldworker probed about residence history from 1994 through to the most current HDSS survey, which was through 2014, inclusive, at the time of fieldwork for the PhD research. The history of the attendee’s residency assisted the fieldworker in searching for potential matches by knowing how many HDSS records they were expected to find including their time period and location.

40 Figure 2.2: Examples of residency timelines

Shortly after PIRL was launched in the clinics, I realised there was confusion over the term “Kisesa”, which not only refers to the ward (i.e., entire HDSS surveillance area), but also one of the seven villages within Kisesa ward, and a sub-village within that village wherein the health facility is located. This realisation made it conceivable that some clinic attendees may have reported not living in “Kisesa” because they interpreted the question to mean village or sub-village rather than ward/surveillance area. As soon as I became aware of this potential issue, we ceased from asking participants if they “lived in Kisesa”

and instead asked a more open-ended question, “Where do you live?”. To assist fieldworkers and participants, I created a complete list of village and sub-villages located within the surveillance area (Figure 2.3) and ensured this list corresponded to the drop-down lists in the PIRL software. Further, I made this list part of each fieldworker’s laptops desktop background, along with other useful tools to have during the linkage interviews.

Figure 2.3: List of villages and sub-villages in Kisesa HDSS

41 The software uses demographic and residence details that a participant has shared to search through the HDSS database and output the top 20 most likely matches. Once the potential matches were on screen, the fieldworker began with the highest ranked potential match (based on match score – see Section 2.4.2) and asked the participant if s/he knew any of the other individuals listed in the household. Household membership was used as an extra step to adjudicate whether the HDSS record in question was indeed a true match. The fieldworker was instructed to assess each record in a stepwise fashion until all matches were found.

If a fieldworker’s first search did not result in identifying all HDSS records as expected from the timeline constructed during the brief interview, participants were asked if they went by any other names or had moved residence since 1994. By design, the HDSS data are collected during household-based surveys in which one household representative reports on behalf of the entire household. Therefore, the name collected during an HDSS round may not be the same as an individual reported in a health facility.

Fieldworkers, who all had experience working with HDSS data, were trained to probe for identifying information that would be on an individual’s HDSS record, update the information in the software, and repeat the search attempt.

Once all matches were made, the fieldworker ended the session in the PIRL software, at which point all collected data was deleted from the screen. If a match was not made, an open-text field in the software was available for the fieldworker to input comments from the interview that may have caused not finding a match (e.g. an individual moved into the HDSS area only two weeks prior). These notes were saved in the software for each interview session and were retrieved by the software during subsequent visits to guide the fieldworkers’ future searches.

When a clinic attendee was approached a second time and thereafter, and if they returned with their clinic ID card(s), the fieldworker input the unique clinic identifier to automatically retrieve all information saved during previous visits. At this point, the fieldworker logged the date of the new visit and checked the match status and/or match notes from the previous session(s), which enabled the fieldworker to quickly reconstruct the patient’s residency history on a timeline and determine if an HDSS record was yet to be found. If all HDSS records had been found for the patient, no further searching was required. However, if there were any HDSS records remaining to be found, these repeat visits offered an additional opportunity to link the participants’ records.

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