The literature search for involvement of PLWHA as expert patients in ART provision in SSA produced 50 articles. Twenty-four articles were excluded as they did not reveal information on PLWHA involvement in care or ART provision. Of the 26 remaining articles, 6 were excluded as they described a nurse-based care model without an explicit involvement of PLWHA. Another 9 articles were excluded as lay providers were involved in psychosocial support and adherence support, but not in ART provision, and PLWHA were not involved or PLWHA involvement was not explicitly described.
Three articles illustrated the positive impact of involvement of PLWHA in psychosocial and adherence support on adherence and treatment outcomes. But as these articles did not mention an involvement of PLWHA in ART provision, they were excluded for further analyses [5
In addition, we excluded 4 articles from rural Uganda where community health care workers (CHWs) or volunteers provided ART at patients' homes without involving PLWHA. The CHWs were trained, salaried, and equipped with a motorbike and mobile phone, whereas social recognition was the main motivation for the volunteers. Outcomes obtained were comparable with conventional care. It is hypothesized that these ART delivery models, primarily based on CHW and volunteers, could serve as a role model for further involvement of PLWHA in ART provision and care [15
We only found four articles, including our own experience in Tete, involving PLWHA in ART provision in SSA. One article described the increased medication adherence as a result of a peer-delivered direct observed treatment (DOT) strategy during the first 6 treatment weeks of antiretroviral treatment at a health facility in Mozambique [19
]. This study was further discarded, as PLWHA were involved only in the initial 6 weeks of ART provision, and since to our understanding DOT is not compatible with the proposed process of reinforced self-management for PLWHA to become expert patients. describes the research strategy and results.
Results of literature search on PLWHA involvement in ART provision.
summarizes the three articles retrieved describing PLWHA involvement in ART provision. We did not find published examples of PLWHA involved in decision making of ART initiation.
Study characteristics of included articles.
The first two articles discuss the same cluster randomized controlled trial in Kenya
, comparing a community-based care model to a conventional-clinic-based care model. Trained PLWHA, known as Community Care Coordinators (CCC), delivered ART monthly at the patients' homes and referred patients if clinical problems occurred. Every three months patients were invited for a routine visit at the clinic. Each CCC took care of 8 to 20 clinically stable adult patients on ART. Patients perceived CCC as their confidents and advocates. By playing this role, CCC obtained insights into adherence and psychosocial issues. The clinic regarded the CCC as an extension of the clinic staff. The outcomes obtained were comparable to those with conventional care but clinic visits were reduced by 50%. The authors concluded that trained PLWHA have the additional advantage of their day to day experience of living with HIV [20
We documented our own experience in Mozambique
, where PLWHA are involved in community ART provision with as main objective to improve the retention in care and relieve the health facilities. Adult patients stable on ART were invited to self-form peer groups of maximum six members, called community ART groups (CAG). Interested patients were capacitated during an information session on the CAG dynamic, including community ART delivery, adherence support, and social support. Monthly the CAG members meet in the community to check pill counts, to verify the health status of members, and to choose a representative to travel to the clinic. He/she reports the adherence and health outcomes and collects a drug refill for all CAG members at the clinic. Every six months, all members are invited for a routine clinic visit, CD4 check and an interactive group session. This dynamic is driven by mutual support and the need to obtain an easier refill, integrated in the patients' daily life in the community. No financial or material incentives were given. Of the patients in CAG, 97.5% were retained after a median follow-up time of 12.9 months [22
Both programs fit in the concept of the expert patient, as PLWHA were motivated to acquire skills to manage their condition and to support fellow peers, using their day-to-day experience of living with HIV (). In both programs PLWHA functioned as partner in care and a bidirectional referral system was installed, as sick patients were referred to the clinic and the community network was used for tracking of patients lost to followup.
Application of conceptual framework to the programs in Kenya and Mozambique.
In both Kenya and Mozambique PLWHA acquired skills to provide ART, to refer sick patients to the clinic, to report on treatment outcomes, and to give psychosocial support [20
]. In Kenya, CCC were trained in medical and psychosocial tasks to become expert patients. Being PLWHA, they were able to understand and resolve psychosocial barriers to adherence of their peers in the community to an extent that was not obtained during consultations at the health facility [20
]. In Mozambique, all patients in CAG were engaged on a voluntary basis and capacitated to participate in the daily care of themselves and their peers. PLWHA self-formed support groups and met monthly in the community to share information and problem-solving skills regarding physical and psychosocial issues. Major problems were reported to the health staff and feedback was debated at the next meeting in the community, resulting in an information loop between health facilities and the community [22
In Kenya the CCC benefitted from a formal training and were remunerated as CHW. There was a solid monitoring system in place to facilitate regular control and supervision by the healthcare workers, and CCC were held accountable for their daily performances [20
]. In Mozambique the peers were involved from the start in the process of planning and implementation of the CAG dynamic, which resulted in a feeling of ownership and motivated the PLWHA to stay involved in the CAG dynamic. Affordability and accessibility of ART refill was improved for CAG members. These direct benefits were a straightforward incentive to motivate PLWHA to become engaged in their own care [22
In both countries the motivation for expert patients to take responsibility was strengthened through the proximity with their fellow peers in the community, as they added their day-to-day expertise of living with HIV to their acquired knowledge. This resulted in unique relationships among peers, built on common needs, confidence, and reciprocity [20
]. CCC in Kenya were perceived by the patients as their advocates, a relationship which enabled them to bring practical solutions for psychosocial problems related to adherence where the traditional care providers had failed, and to ensure the communication between the PLWHA in the community and the healthcare workers [20