This study examined the contribution of expert patients to an HIV program in an ART clinic in Malawi, to understand the performance and level of acceptability of patient involvement in formal HIV service delivery. Expert patients are living with HIV themselves and, at the time of study, were already on ART for several years. All expert patients had a partner living with HIV, but some were now widowed. They all live in low income areas around the hospital and have a similar level of formal education as the patients they support. The background and proximity of expert patients and patients’ illness and treatment experiences suggest they may be able to relate with each other on a more personal level.
This study shows that numerous tasks previously performed by nurses and patient care attendants were successfully taken on by expert patients involved in ART services. To some extent, expert patients represent a unique cadre of health workers in that they utilize both newly acquired task-shifted ‘health care’ skills, as well as personal experiences of illness and treatment.
Two recent studies from Kenya [14
] examined the performance of expert patients who provided ART delivery and follow-up in remote communities with the use of an electronic decision support tool. These studies found that expert patients performed similarly to formal health professionals and that they could take on a wide range of tasks and perform them well, with positive outcomes for ART delivery and follow up of patients [14
]. Another study from Mozambique shows that expert patients supporting treatment as part of a ‘community ART group’, may also help to improve retention in care and adherence to ART [16
]. The Mozambique program also demonstrated that providing group counselling increased the efficiency and potential impact of expert patients. Our study showed that, similar to the previously published studies mentioned above, when assessing the performance of the expert patients compared to the nurses, there were minor differences in measurement of patients’ weight, height and temperature. These differences can be expected with two measurements made by different individuals regardless of their health-related training. In terms of counseling skills, we observed that most patients received essential information and adequate support, as judged by patients themselves.
Furthermore, expert patients were widely accepted by patients who valued the care they were given, and who portrayed expert patients as ‘role models’. This observation also suggests that, in their role as patient themselves, expert patients may also assist in improving relations between health providers and patients [17
]. The positive perception of the role of the expert patient by patients themselves is further reinforced by the view that they are ‘like them’, as patients put it, and more likely to understand patients circumstances and respect confidentiality compared to other health workers. Similar to our findings, other studies have shown that people living with HIV like to receive information about HIV from other HIV positive persons [19
In relation to other health staff, previous studies describe that formal health workers may initially be skeptical about expert patients, but that their reservations tend to diminish over time [12
]. We show that formal health staff perceived the expert patients’ clinical competency to be somewhat inferior to the standard of care they provide. However, expert patients were explicitly accepted by nurses and clinical offers in the context of recurrent staff shortages in the HIV clinic.
Last, we argue that expert patients themselves benefit from working within the health care team, taking on a professional role whilst supporting others, and increasing their skills and knowledge on HIV care. Previous studies have also highlighted that the involvement of people living with HIV in HIV care is associated with increased quality of life and self-esteem [20
], pride in being a part of the health care team [10
] and decision making, disclosure of one’s own status and formation of more support groups [10
]. However, concerns regarding the sustainability of expert patient-led interventions need further attention, as a number of expert patients in this setting left because they were unsure about future resources (such as volunteers’ stipend) being made available to them and to the expert patient program.
Some of the limitations of this study include the relatively small number of expert patients studied, and the short period for data collection, which may have precluded our ability to observe rare but important safety concerns, or potential institutional resistance. In addition, the awareness that they were being assessed might have affected the performance of expert patients. Because this study was a site-specific observational study in a clinic that benefits from additional NGO resources, results may not be generalizable to other settings. However, the results from this study mirror the results observed in similar studies conducted in other countries [14
] suggesting overall positive performance and acceptability of expert patients working within ART services in sub-Saharan Africa.