The search strategy identified 5150 papers, 2803 articles were excluded as duplicates and 2012 articles were excluded during title and abstract review. Of the remaining 335 papers, a total of 111 papers on PLWH perceptions of self-management in LMIC were identified and included in the review (Fig. 2). Of the included studies, 70% were conducted in Africa, 26% in Asia, 3% in South America and 1% in North America. The quality of the included articles was moderate.

Fig. 2

PRISMA flow chart of study selection

Context dimension

The context related experiences of PLWH were organized into four themes: condition specific, physical environment, social environment, and individual and family themes.

Condition specific

PLWH suffered from a wide range of physical symptoms, including fatigue, weight loss, pain, stiffness, itching, dyspnea, and gastrointestinal and gynecological problems [17,18,19,20,21,22,23,24,25,26,27,28,29,30]. These symptoms made it difficult for PLWH to work and perform their daily activities. Comorbidities such as tuberculosis and noncommunicable diseases added to the burden. PLWH often feel better after starting ART; however, many patients experience significant side effects from the medication. Long-term side effects include osteoporosis, changes in cholesterol levels, liver disease, lactic acidosis, and others. Minor side effects include headache and fatigue [17, 18, 20, 21, 26, 30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52]. Medication side effects and the burden of taking multiple pills per day have been cited as barriers to ART adherence [17, 19, 30, 40, 49, 50, 53,54,55,56,57].

“I sometimes stop taking my medications, because of their side-effects; they make me aggressive. I treat my child so badly for saying anything at all. That's why I stop taking them, it's for my kid's sake. My double-dose pills give me diarrhea.” [58]

“The pills ... they make me feel like sleeping ... at work I feel like sleeping ... at times I skip pills for two days and take them during weekend.” [43]

PLWH initially resist to accepting their diagnosis of HIV [46, 59]. This is partly or fully linked to the incurability of the disease and its stigma, loneliness, sadness and suicidality that often lead to psychological problems. These disease-specific issues make self-management practices more challenging. The following quote illustrates the perspective of the disease:

"I feel like why should I live in this world, or what am I living for? Sometimes I get completely down, emotionally depressed. Sometimes I even feel like killing myself or committing suicide [60]

Physical environment

The physical environment has a major impact on patients' ability to self-manage, which is more pronounced in LMICs. The greatest barrier to self-management was limited access to healthcare facilities due to long distances to the clinic. Because specialized HIV clinics were not available within reasonable distances, patients often had to travel long distances for their appointments [20, 21, 34, 39, 42, 50, 56, 61,62,63,64,65,66,67,68,69,70,71]. Other problems with health facilities include a lack of integration of services, which is reported mainly by PLWH with co-morbidities (19, 26, 72]. Another problem was that the design of the facility didn't provide privacy for PLWH [65, 68, 70, 73].

"I came from very far, over 50 km from here. Before coming to the hospital, I had to plan the money for the trip to the clinic. In fact, my extra medicine was finished yesterday. [11]

"The problem is the location of the clinic. The waiting area is in an open place, so whoever goes there will know that they are infected with HIV, but some of us have not disclosed our status for fear of losing respect...., that really discouraged me from coming” [70]

The organization of HIV care affects self-management: PLWH complained about long waiting times, short consultations with providers, and the risk of postponing appointments, often due to a shortage of health care workers [39, 52, 55, 71]. Lack of certain necessary diagnostic materials (e.g., CD4 test not available) and drugs (e.g., ART out of stock) are often mentioned [19, 21, 51, 52, 61, 65, 74, 75].

PLWH may also face other non-medical barriers to self-management: unstable housing and water insecurity [22, 50, 62, 76) and food insecurity [21, 33,34,35,36,37, 40, 50, 69, 77,78,79,80,81,82,83,84,85]. Taking ART without food exacerbates side effects and leads to lower adherence. PLWH called for support in the form of skills training and education to help them cope with their problems and also to relieve pressure on the health system. Some illustrative quotes:

"If you want to enjoy taking these pills and have them help you, you need to have some food. If you have some food, then there is no other problem."  [77]

"They tell us to eat fruits and vegetables and here in Dares Salaam you have to buy all these things. Maybe they should give us some help. Right now, you can go a day without eating and you cannot even afford an orange. [33]

Social environment

Our literature review shows that the social environment has a huge impact on the self-management of PLWH. HIV is a highly stigmatized disease, which makes PLWH very reluctant to disclose their status. Fear of disclosure inhibits self-management in many ways [21, 22, 29, 31,