Themes arising from monthly meetings
During the first year, six themes emerged from the content analysis of the meeting transcripts: confidentiality and "community" disclosure; roles and responsibilities; logistics; clinical care partnership; ART adherence; and PDA issues. Confidentiality and "community" disclosure were key issues during the first few months after entering the field, when CCCs frequently encountered questions from patients' partners, neighbours and the general population about their activities and role in the community. This experience is exemplified in the following quote from a CCC:
"Her husband followed and as we continued, her husband was waiting for us outside the neighbour's house. When I had finished serving the patient, her husband asked me what we were doing with his wife and I answered him that I was explaining to her about the group based in Mosoriot of which she is a member and I am the leader of that group."
In order to avoid the AIDS label (and its stigma) and ensure patient confidentiality, the CCCs eventually chose to define themselves as health counsellors attached to a project at the rural health centre. To ensure consistent messaging, CCCs requested that clients who were unwilling to disclose their HIV status identify the CCC as a health counsellor to individuals who expressed curiosity. Early in Year 2 of this programme, CCCs recommended that community disclosure and stigma issues be dealt with by an increase in community mobilization activities, as well as by referring patients to support groups. Though stigma remained an issue within the community after 16 months, CCCs no longer reported this as a significant issue for the project.
Two sub-themes emerged within the major theme of CCCs' roles and responsibilities: client expectations and clinic staff expectations. Some clients indicated to the CCCs that they felt that the CCCs should provide them with gifts, such as sugar, or assist in times of financial crisis, as highlighted by this quote by a CCC:
"She [the client] told me to be taking sugar to her during every visit ... She claims that her daughters-in-law rush to her house after my departure because they think that I usually take sugar to her with my large back bag."
Initially, the CCCs felt some discomfort with these requests, but over time, they were able to more clearly define their role as patient care advocates, who could refer patients to social and food services within AMPATH, but who could not provide direct assistance to families. Year 2 meeting transcripts identified no significant conflicts between clients' expectations and responsibilities of the CCCs or the clinic.
The sub-theme of clinic staff expectations emerged during the 10th month of field work. As individuals working from their homes, the CCCs faced issues of competing agendas, and during the 10th month, it was noted that one CCC had failed to make some of his assigned home visits due to his participation in election activities. As a result, his patients were forced to visit the clinic to collect their medications. Other issues encountered during the month included failure of two of the CCCs to come to the clinic for the weekly PDA data downloads and tardiness in getting to monthly meetings. The supervising clinical officer and study staff clearly reinforced the clinical staff's expectations of the CCCs that they adhere to their patient visits, ensure that PDAs are downloaded on a routine basis, and notify the team if they are going to be late for meetings.
During Year 2 in the field, the majority of conflicts with clinic expectations were self-corrected by the CCCs. For example, one CCC failed to acknowledge a vital sign alert at the patient's residence. However, when subsequently reviewing the visit data, the CCC identified the alert and returned to the patient's house for a recheck, which was found to be normal. It was also noted that CCCs were turning off their cellphones during work hours and so could not be reached by the clinic. Clinic expectations about availability were reinforced and this problem did not recur.
With regard to logistics, the CCCs and their clients were given the opportunity to set the times and places for monthly visits. Eventually, most visits occurred at either the patients' or the CCCs' homes because early in the process, CCCs recognized that, due to numerous interruptions and confidentiality concerns, they could not conduct visits at more public venues, such as AMPATH's food distribution site in Mosoriot. As reported by one CCC:
"So, the only thing I saw in the distribution site is that there are so many patients coming to the site and most of them were pleading for help. One of them came to me and asked for help, but I told her to come to the clinic. I also noted that it could be good to meet patients privately to avoid disturbances."
Some patients requested evening visits. However, this was generally discouraged by both the CCCs and the study staff because of safety concerns about travelling after dark. Visit schedules were able to accommodate patients' and CCCs' needs without adding evening visits.
CCCs initially encountered some issues with patients failing to be available at the times and locations scheduled for their monthly visits because of unexpected issues arising, such as funerals, and in rare instances, because the patient had moved without informing the CCC. The strategy developed between the supervising clinical officer and the CCC was to request that patients pass by the homes of their CCCs prior to leaving the area in order to reschedule or postpone appointments. In addition, the clinical officer suggested that the CCCs ask patients about their intention to move at each visit. If CCCs were still unable to contact patients after three separate tries, they were told to refer those patients to AMPATH's outreach team for follow up.
The only logistical issue raised during Year 2 of field work was related to poor cellphone coverage around some of the clients' homes, an issue that could not be directly addressed by the project, but did not prevent the CCCs from performing their duties.
The position of CCCs in the clinical care partnership began evolving within the first month of field work when it became clear that the CCCs were able to identify psychosocial concerns that were not being identified and discussed during clinic visits, such as alcohol abuse, food insecurity, domestic discord, and HIV disclosure issues. Such issues were not always addressed in the clinic, and a referral form was developed that allowed the CCCs to communicate these concerns to the clinical staff.
The importance of the CCCs in the care partnership remained a consistent theme throughout the two years of field work. In addition to identifying psychosocial issues, CCCs provided trusted and reliable linkages between AMPATH's pharmacy, outreach and clinical teams and the patients to deal with important issues, such as adherence to medications or clinic appointments.
Over the two years of field work, the theme of cART adherence repeatedly emerged during the monthly meetings. The initial adherence issue was what to do with the excess tablets identified during monthly pill counts. Because of the complexity of collecting and returning excess pills, it was decided that the CCCs should simply record the number of excess tablets and allow the clinic to reconcile the patients' medications. The CCCs felt that they were more accurate at assessing adherence than the clinic because patients could not hide their pills during home visits. Thus, as one CCC put it:
"I learnt that patients never cheat when they are at their homes than when they come here at the clinic because most of them can give you the pills to count, but they sometimes leave other pills at home when coming to the clinic."
In addition to monitoring adherence, CCCs were involved in adherence support, which included identifying issues that adversely impacted medication adherence (e.g., religious beliefs, alcohol use and domestic issues), explaining changes in the number of pills that needed to be taken (e.g., when DDI 200 mg tablets were out of stock, they had to be replaced with four 50 mg tablets), and explaining changes in formulation (e.g., when combivir replaced individual zidovudine and lamivudine). One example of information that the CCCs were able to glean about adherence beliefs is as follows:
"... both clients had the same problems of not adhering to their drugs because of their religious faith ... The patient had relied most on church norms and wanted to leave the drugs. So, we told him that going to church was not bad and trusting in the Lord was good, but he should do both."
One CCC accompanied her poorly adherent patient to the clinic in order to provide support to the clinic staff in reinforcing adherence behaviours. CCCs also played a key role in tracking patients who had been displaced during the post-election violence that occurred during January and February 2008.
CCCs initially had some difficulties with using the PDAs in the field. There were problems keeping the PDAs' batteries charged, as well as issues with data entry. Paper forms were distributed to all CCCs to be used for back up when their PDAs lost charge or the CCCs had difficulties with data entry. A PDA refresher course was given four months into field work, and a tutor was assigned to the two CCCs who were having the most difficultly with data entry. PDA issues were cited much less frequently as problems during Year 2, when the most significant problems encountered were: a stolen PDA, which was subsequently recovered, but was not functional upon retrieval; and a problem with the study computer preventing the timely download of data from the PDAs for approximately a month.
The only new theme that emerged during the second year of the project was the unexpectedly large number of pregnancies among stable patients being cared for by the CCCs. The CCCs felt that the majority of these pregnancies were unintended, and there was general discussion of how to better serve the reproductive health needs of their clients. However, other than general recommendations, such as referring patients to family planning services, there was no significant resolution of this issue.