Date Published: April 19, 2012
Publisher: Hindawi Publishing Corporation
Author(s): Tom Decroo, Wim Van Damme, Guy Kegels, Daniel Remartinez, Freya Rasschaert.
Since the introduction of antiretroviral treatment, HIV/AIDS can be framed as a chronic lifelong condition, requiring lifelong adherence to medication. Reinforcement of self-management through information, acquisition of problem solving skills, motivation, and peer support is expected to allow PLWHA to become involved as expert patients in the care management and to decrease the dependency on scarce skilled medical staff. We developed a conceptual framework to analyse how PLWHA can become expert patients and performed a literature review on involvement of PLWHA as expert patients in ART provision in Sub-Saharan Africa. This paper revealed two published examples: one on trained PLWHA in Kenya and another on self-formed peer groups in Mozambique. Both programs fit the concept of the expert patient and describe how community-embedded ART programs can be effective and improve the accessibility and affordability of ART. Using their day-to-day experience of living with HIV, expert patients are able to provide better fitting solutions to practical and psychosocial barriers to adherence. There is a need for careful design of models in which expert patients are involved in essential care functions, capacitated, and empowered to manage their condition and support fellow peers, as an untapped resource to control HIV/AIDS.
By the end of 2010, approximately 5,1 million people were receiving antiretroviral therapy (ART) in sub-Saharan Africa (SSA) representing only 49% of people in need of treatment . For those fortunate enough to access ART, HIV infection became a chronic disease requiring lifelong treatment. However, retention in ART is a huge challenge. In 2010, a systematic review reported 80.2% (CI 78.0–82.4%), 76.1% (CI 72.4–79.7%), and 72.3% (67.4–76.9%) retention in ART at 12, 24, and 36 months of treatment, respectively, .
Based on our own experience, working in an HIV program in Tete, Mozambique, where patients are involved in the ART provision through community ART groups, we wanted to analyse how PLWHA can become expert patients and get involved in ART provision. In order to structure our thinking about the involvement of PLWHA as expert patients, we developed a framework to illustrate the different elements required to reinforce HIV self-management and to empower PLWHA to become engaged in the care for their condition as expert patients (Figure 1).
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.
In SSA, a huge proportion of the population needs to adhere daily to life-preserving medication, a process which requires an uninterrupted supply integrated in daily life in the community. We found two innovative pilot models in SSA showing the feasibility of involving PLWHA in tasks such as ART provision. Both models reduced barriers to ART refill, decreased dependency on health services and resulted in health outcomes comparable to facility-based care. Using their day-to-day experience of living with HIV, expert patients were able to provide better fitting solutions to practical and psychosocial barriers to adherence. These results seem consistent with theoretical insights and practical experiences from diabetes and other chronic diseases in the West. An extension of these pilots is needed to evaluate the scalability in different contexts. There will be a need for careful design of such models according to the local contexts and realities to explore if PLWHA can become expert patients, capacitated and empowered to manage their HIV and support fellow peers, as an untapped resource to control HIV/AIDS.