Profile of expert patients and patients interviewed
The average age of the seven expert patients (five females and two males) was 35 years – ranging from 27 to 45 years. The length of time they were on ART ranged from three to six years. They all have children, all of whom are HIV uninfected, except for one whose mother was started on ART after the child’s birth. All expert patients lived within walking distance from the hospital. Table
2 outlines demographic information about each expert patient.
Table 2
Expert patient demographics at time of study
EP1 | 27 | F | 3 years 4 months | Spouse | HIV-infected | 3; HIV uninfected | Primary school | Vitals and Triage, Counseling |
EP2 | 34 | F | 3 years 1 months | Widow | HIV-infected | 1; HIV uninfected | Junior Certificate | Vitals and Triage, Counseling |
EP3 | 39 | F | 3 years 2 months | Spouse | HIV-infected | 2; HIV uninfected | Primary school | Vitals and Triage, Counseling |
EP4 | 34 | F | 3 years 7 months | Widow | HIV-infected | 3; (1 HIV infected; 2 HIV uninfected) | Junior Certificate | ART Clerk Assistant |
EP5 | 35 | F | 4 years 4 months | Widow | HIV-infected | 1; HIV uninfected | Junior Certificate | Vitals and Triage, Counseling |
EP6 | 34 | M | 2 years 10 months | Spouse | HIV-infected | 2; HIV uninfected | Junior Certificate | ART Clerk Assistant |
EP7 | 45 | M | 6 years 3 months | Spouse | HIV-infected | 2; HIV uninfected | Junior Certificate | Counseling, Translation, ART Clerk Assistant |
Almost two thirds (n = 66) of all patients interviewed were female and their average age was 34 years. Over two thirds (n = 69) of patients had received some primary education, a minority (n = 17) reported they had no education at all and few (n = 15) had at least two years of secondary education.
The study documents that expert patients contribute to a number of essential tasks within the facility. They facilitate patient flow management and triage, take patients’ vital signs, temperature and heights/weights. In addition, expert patients conduct individual and adherence counseling for ART, and assist with record keeping.
In order to assess the competency of the expert patients in taking temperatures and anthropometric measurements, reassessment of 93 patients was carried out by a nurse. There were minor differences in all readings between the expert patients and the nurse. The mean weight difference between the expert patient and the nurse was −0.003 kg, SD 0.2 (95% CI −0.04-0.03); the mean height difference was 0.006 cm, SD 0.5 (95% CI −0.1- 0.1); and the mean difference in temperature readings was 0.06 °C, SD 0.6 (95% CI −0.06-0.2).
To assess whether essential ART information was conveyed during counseling sessions performed by expert patients, patients were asked on exit interview what the content of the session was. Based on un-prompted responses by patients counseled, the most frequently reported content of counseling sessions focused on ART provision, side effects, drug taking instructions, the need for treatment adherence, and the statement that ‘ARVs are not a cure for AIDS’.
When more specific questions were asked, almost all patients (79/81) stated that ART is taken for the rest of their life. All patients correctly stated that ART is taken twice a day. Sixty-one of the participants affirmed that only one pill is taken, and 18 stated that two pills are taken each time; the remaining two patients did not know how many pills they would need to take each day. Those who stated the need to take two pills also mentioned the need to take cotrimoxazole preventive therapy with the ART. All participants stated that sharing medication with others is not allowed. Eighty of 81 participants correctly mentioned that non-adherence to ART could have consequences to their health. Over half (44/81) of the participants mentioned drug resistance and 46% (37/81) mentioned that low immunity could lead to the occurrence of other (opportunistic) infections.
In addition, after counseling with an expert patient, most participants correctly stated at least three serious side effects that a person may experience while on ART as stated in the MoH standardized counseling guidelines. About 60% (49/81) mentioned vomiting, whilst few respondents mentioned diarrhea and abdominal pain. Upon inquiry about jaundice, 91% (74/81) stated that they had to see a clinician if experiencing jaundice; 9% (7/81) stated the need to continue taking the medication. All 81 participants stated that one needs to see a clinician if experiencing severerash and sores.
Based on program reports, expert patients carry out an average of 175 counseling sessions and 4865 patient vital signsrecording per month. Direct observations showed that a counseling session takes 15 minutes on average, whilst vitals and anthropometric assessment on each patient takes four minutes on average. The expert patients therefore carry out 368 hours of nurse tasks each month, which in absolute terms would translate into two and a half full-time nurse equivalents per month.
Expert patient acceptability
All seven expert patients stated that they felt generally accepted by patients. However, expert patients felt they are viewed with some suspicion at first when they disclose to other patients that they are also on ART themselves. This trend seems to change with time and further interactions between patients and expert patients. One of the expert patients stated: in the first days the patients could not believe that we are also HIV positive because they expected that people who are HIV positive are supposed to always look sick and have poor health (Female expert patient, 34 years). Another expressed that when they [PLHIV] believe that you are like them, they become close to you in order to receive comfort from you, and you end up understanding each other easily (Male expert patient, 45 years).
Some expert patients expressed that they felt valued by patients for being a ‘role model’, or a ‘model of hope’, promoting positive living and adherence to ART. One patient mentioned: I see how healthy she [the expert patient] is (Female patient, 36 years). One of the expert patient added: I tell them [patients] that all things are possible but it is good that they [patients] should follow the advice from the doctors and nurses. I tell them that if they do this, they can have a long life, like me (Male expert patient, 34 years).
Overall, expert patients appear to be relatively well accepted as service providers by patients, mainly because expert patients were seen as more responsive to patients’ requests. A patient explained: there is a big difference [between expert patients and formal health care workers];when you ask expert patients they answer you in a good manner and if they are not too busy they can even escort you to the place you want to go without any complaint (Female patient, 42 years).
Observations and interviews revealed that patients were not always aware that the clinic staff member who they were seen by during consultations was an expert patient. Expert Patients appeared to disclose their status less frequently than expected to new patients compared to patients followed longer in the clinic. Patients were told by the expert patient themselves that they were also taking ART.
Confidentiality was particularly valued by patients, who saw expert patients as reliable sources of support. One of the patients expressed that because she knows that the expert patient can keep her secret because they know the problem we are facing when you are taking these ARVs (Female patient, 34 years).
Patients also expressed feeling less discriminated against, and treated more fairly by expert patients. When they [expert patients] have seen their relative or they have a friend who also wants to receive ARVs, said one of the patients, they don’t put them in front; they do according to their number in the queue (Male patient, 33 years).
Patients expressed that they feel closely related to the life experience of expert patients. Expert patients are people who are also taking these ARVs, said one of the patients, so they differ from other health care workers just because expert patient take ARVs they are able to understand you [better] than others (Female patient, 15 years).
Some health care workers expressed that expert patients were efficient as they could delegate a number of tasks to them. Their [expert patients’] work is good because it’s time saving and I don’t see any problems in how they care for the patients” (Female Nurse, 51 years). However, other health care workers expressed that the performance of expert patients is not optimal, particularly in recording vital signs. One of the clinical officers stated that he accepts a lower standard [of care] to improve efficiency in terms of time (Male Clinical Officer, 34 years).