Abstract
Introduction
Availability of anti-retroviral treatment has changed HIV in to a manageable chronic disease, making effective self-management essential. However, only a few studies in low- and middle-income countries (LMICs) reported experiences of people living with HIV (PLWH) on self-management.
Methods
This meta-synthesis of qualitative studies investigated perspectives of PLWH in LMICs on self-management. Various databases, including PubMed, EMBASE, EBSCO, and CINHAL, were searched through June 2022. Relevant additional articles were also included using cross-referencing of the identified papers. We used a thematic synthesis guided by the "Model of the Individual and Family Self-Management Theory" (IFSMT).
Result
PLWH in LIMICs experience a variety of challenges that restrict their options for effective self-management and compromises their quality of life. The main ones include: misconceptions about the disease, poor self-efficacy and self-management skills, negative social perceptions, and a non-patient-centered model of care that reduces the role of patients. The experiences that influenced the ability to practice self-management are summarized in context (the condition itself, physical and environmental factors, individual and family factors) and process factors (knowledge and beliefs, relationship with the health care worker, self-regulation skills and abilities, and social facilitation). Context and process greatly impacted quality of life through the self-management practices of the patients.
Conclusion and recommendation
PLWH encounter multiple challenges, are not empowered enough to manage their own chronic condition, and their needs beyond medical care are not addressed by service providers. Self-management practice of these patients is poor, and service providers do not follow service delivery approaches that empower patients to be at the center of their own care and to achieve an effective and sustainable outcome from treatment. These findings call for a comprehensive well thought self-management interventions.
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Introduction
HIV (human immunodeficiency virus) affected close to 38 million adults and children worldwide by the end of 2020 [1]. Fortunately, the emergence of antiretroviral treatment (ART) and its availability has turned HIV from a life threatening disease into a manageable chronic disease [2]. This has resulted an emergence of new challenges that include long-term medication use and associated complacency, and multi-morbidities. This has necessitated a shift from provider centered health care services to self-management (i.e., how patients manage their illness) practices as part of patient care practices. This practice is crucial for chronic diseases management, as only patients can oversee the day-to-day care of themselves. Self-management practice among PLWH consists of medical management; maintaining, changing or creating healthy behaviors; and dealing with the emotions of living with the chronic disease [3]. The practice of self-management requires a set of skills such as problem solving, decision making, resource utilization, forming a patient/health care provider partnership, and action taking [4].
The effects of programs to improve self-management have been studied in randomized controlled trials (RCTs) in high income countries [5,6,7]. In one of these studies showed that self-management programs for PLWH had significant short-term improvements in physical, psychosocial, health literacy, and behavioral outcomes (8]. Mobile-based self-management interventions, though feasible and effective, are usually focused on a very limited aspect of self-management, e.g., reminders to improve medication adherence [9]. The most promising outcomes were achieved in HIV self-management programs that comprised a combination of skill training, phone counseling, counseling with symptom management manuals, and technology assisted interventions [8).
Though the need to practice self-management in the service delivery is crucial for patients and the health system, its practice in the health care system and research on its modality of implementation in low- and middle- income countries (LMICs) is limited [5,6,7,8]. In these countries self-management interventions could have a great impact, because it is less expensive, but potentially more effective than traditional provider-centered chronic care [10]. In order to come up with acceptable and effective interventions for PLWH in LMICs, an understanding of the components of self-management and the perspectives of patients towards self-management intervention is important. The evidence from high income country setting showed that the "Individual and Family Self-Management Theory" (IFSMT) offers a good model of factors that influence self-management [11].
The purpose of this paper is to report synthesized understanding of the perceptions and experiences of HIV patients involved qualitative studies [12]. Taking the patients' point of view has been shown to improve the efficacy of self-management interventions [13, 14]. While there are multiple studies on self-management as perceived by PLWH in high income countries [5,6,7], there is no synthesized evidence in developing countries that can be utilized by the health care providers. Therefore, in order to develop a starting model for future interventions, the study's aim is to determine the perceived factors that PLWH in LMIC believe affect self-management and their experiences.
Methodology
Study design
We followed the steps of meta-synthesis described by Sandelowski and Barroso [15] to summarize the findings from published qualitative studies. This approach is suitable to synthesize qualitative literature without simplifying it, taking into account the diversity of theoretical and methodological approaches.
Search strategy and databases
A comprehensive search strategy was used to identify existing literature on experiences of PLWH on self-management. The search was conducted in June 2022 using Embase, Pubmed, Google Scholar, CINHAL, MEDLINE, Psych info and the Cochrane database. The search terms included “people living with HIV/ HIV patients/PLWH/ HIV” and “self-management/selfmanagement/self-care/self-evaluation/ self-monitoring” and “interviews/interview/questionnaire/observational study/focus group/ focus groups” (Additional file 1). Moreover, hand search was conducted through cross referencing of the identified papers. The list of final citations was saved in the endnote and screened for duplicates and further processing.
Screening of identified articles
All potential articles underwent a two-stage screening based on inclusion and exclusion criteria (Table 1). After removing duplicates, articles were screened based on title and abstract to determine eligibility for inclusion. After the initial screening, the full texts of each article were read in full and assessed for inclusion. The references of the included studies were further reviewed to identify for any missed eligible papers and to include the eligible ones. The screening process was carried out by two authors of this paper (AW & TLD). A random sample of 50 articles from the title and abstract screening and all articles from the full text screening were reviewed by a third author (YT) for quality assurance to check the relevance of the papers. Disagreements on the relevance of the papers were discussed until a consensus was reached.
Critical appraisal of identified papers
We carried out a quality appraisal using the Critical Appraisal Skills Programme (CASP) checklist [16] to assess the methodological strengths and limitations of the included studies. One author (AW) carried out the appraisal, and the second author (TLD) checked the assessments. In case of disagreement between the two authors, the issues were resolved through discussions.
Approach of data extraction and meta-synthesis
The data extraction was conducted using a template prepared in Microsoft Excel. This data extraction templates includes relevant study information that include study design, key findings, and conclusions, as well as indicators of the self-management perspectives of PLHIV in the form of quotes. Data extraction was carried out independently by AW and TLD, with disagreements being discussed and settled. Line-by-line coding was done on the texts using an inductive approach, followed by grouping of codes that had similar concepts into themes. The final stage involved developing analytical ideas that went "beyond" the content of the original. Through debate, more topics were developed from the individual analytical themes.
The coding of texts and thematization were conducted using Nvivo version 12 qualitative software. The themes were then compared to the dimensions and sub-dimension of the “Model of the Individual and Family Self-Management Theory” (IFSMT) [11]. This model is suitable to approach self-management among HIV patients through individual which is focusing on patients only and family lens which focus on patient while considering the family, friendship network, and community relationships that potentially affect the health status of the patient. The model is comprehensive and can address multidimensional areas of the patient during service delivery. The model has three dimensions (see Fig. 1): context, process and outcomes. The context consists of risk and protective factors that relate to condition, social and physical environment and individual and family factors. The process of self-management is said to be determined by knowledge and beliefs, self-efficacy and social facilitation. The outcomes of treatment can be divided into proximal outcomes such as adherence to medication or distal outcomes such as quality of life.
Adjusted “Model of the Individual and Family Self-Management Theory” for PLWH [11]
Differences between the IFSMT model and the themes that emerged from the literature were observed. Changes were made accordingly and the IFSMT model was adapted to create a clear overview of the self-management perspectives of PLWH in LMICs and possible self-management intervention goals. After reciting the differences between themes developed from text coding and the dimension of the model, the thematic analysis was conducted using the dimensions and sub-dimensions of the IFSMT model. Even though the model has context, process and outcome dimensions, we only report on the first two dimensions. Since most of the identified articles did not include outcomes, we chose not to include detailed descriptions of proximal and distal outcomes into our model. We have four themes in each of the context and process dimensions (Fig. 1).
Results
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.
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, 36, 37, 39, 40, 42, 45, 46, 49, 50, 58, 62, 73, 86,87,88,89,90]. PLWH typically wait a long time before being tested, do not take their medications on time, isolate themselves from their social environment, do not attend the clinic regularly, or travel to more distant clinics to avoid disclosure.
PLWH reported being treated differently after their co-workers and employers found out about their HIV status, resulting in outright discrimination in their communities and workplaces. In some cases, disclosure led to dismissal from work. Individuals reported missing appointments because of fear of disclosure or avoiding regular sick leave [43, 57, 73, 89). Discrimination against PLWH by health care workers was also reported [22, 26, 60, 61, 65, 88, 91]. This is harmful because it makes people afraid to seek help.
"When people out there find out that you are HIV positive, they treat you badly. Sometimes, if you are employed, you may lose your job if you disclose your status. Even in the family, if you disclose that you are HIV positive, your people may stop eating with you, they just ignore you, saying that you are useless because you can die any time. You can even be denied a loan from the system because of your sero status—they claim that you can die any time and therefore default" [18]
"Some of the doctors and even counselors wear masks when they talk to an HIV-positive person. They also turn their faces away from us. If doctors treat us with such indifference, how can we expect others to be considerate?" [92]
While disclosure can lead to social support, it can also lead to harassment. PLWH struggled with alienation from partners, experienced verbal harassment and violence, and were excluded from activities [50, 63].
Culture in general, and gender inequality in particular, seemed to have a major impact on the care and support of people with HIV. Gender inequality seemed to reduce self-management [31, 36, 42, 82]. In most developing countries, health issues are seen as women's issues, which makes men reluctant to engage in self-care and visit a clinic. On the other hand, this has also led to a lack of support for women, as men who help their wives (for example, by accompanying them to their PMTCT appointments) are perceived as weak [31, 36, 82]. The cultural belief that caregiving is weakness was particularly damaging because women with HIV were often financially dependent on their husbands. Husbands who did not see the value of self-management could even prevent women from practicing self-management [31, 36, 40, 42, 70, 71, 93, 94]. Examples include refusing to use a condom, not providing money to travel to a health facility, or forbidding their partner from using ART. Community-based problems interfere with proper self-management, leading to poorer treatment outcomes.
"If a woman is HIV positive, people think she was a prostitute. ...and then these [women] are discriminated against. ...if they are known to be on ART. So, women are ashamed to participate in PMTCT or HIV testing for fear of being shamed." [36]
Individual and family
How well HIV is managed depends on a person's or family's characteristics. The patient's work status, financial situation, level of education, family dynamics, and unhealthy behaviors are some examples of individual and family behaviors that affect the patient's state of self-management and treatment outcomes [21, 29, 39, 78, 80, 89, 95, 96]. The ability to work is very important; it was seen as a source of pride and purpose for PLWH and was sometimes used as a coping mechanism [21, 89, 96]. Not being able to work meant having to rely on others for financial support. The financial situation, combined with the cost of care, has a significant impact on self-management [17, 23, 26, 30, 32, 34, 38, 39, 42, 45, 54, 55, 65, 72, 79, 80, 89, 91, 97,98,99]. For example, if a family or person cannot afford to travel to the clinic or to buy medication, this will negatively affect their adherence to ART treatment.
“Working for myself has helped me so much during this period of “sickness” and I don’t worry about anything.” [80]
Patients' level of education has a significant impact on their ability to process information and solve problems, which affects their adherence to treatment [31,32,33, 38, 45, 50, 53, 67, 71, 72, 77, 100]. Illiterate PLWH struggled with reading and writing but did not always seek help [45, 84]. Families with less education struggled to accept the HIV status of a family member, and as a result of their understanding, they were more fearful and prone to misconceptions.
"I don't read books about HIV because I can't read them in my office or at home because I live with other people. If they saw me reading those books, they would know my situation. So now I only get information from my providers when I go to pick up my medication.” [30]
Family dynamics and changes in life style influence both self-management and treatment outcomes. When PLWH have to care for the family, they often do not prioritize themselves and do not make time for symptom management or emotional coping. Lifestyle changes can also be challenging because they sometimes mean that the whole family has to adapt. For example, food was often shared with the entire family, which meant that the entire family had to adapt to a new diet that was appropriate for the household member with HIV [19, 42, 63, 76, 83, 93]. Unhealthy lifestyles of individuals or their families, such as addiction or stress, alcohol use, lower adherence and their ability to self-manage [43, 46, 53, 58, 67, 77, 82, 90]. The following are some illustrative quotes:
"I went to the village in December and when it was time to come back before my appointment on January 3, 2011, I could not come back. After a few days I lost another relative and so I stayed in the village. I had planned to return on January 1 for an appointment at the clinic, but I did not return. " [63]
"I have also stopped drinking so that I can concentrate on my treatment [...] I take this program seriously because my family benefited from it." [82]
Process dimension
Knowledge and beliefs, relationships with healthcare professionals, self-efficacy skills, and social facilitation skills are the four categories that are organized under the process dimension.
Knowledge and beliefs
We find that PLWH see a clear link between knowledge and self-management [17, 19, 28, 30, 31, 34,35,36,37, 39, 40, 42, 44,45,46, 49,50,51, 55, 57, 65, 67, 71, 72, 76, 80,81,82, 84, 85, 88, 94, 95, 100,101,102,103,104]. Sometimes people are unaware of their diagnosis, what exactly HIV is, what ART is, and how to take ART [23, 36, 39, 43, 65]. People first need to understand their disease and the need for treatment, then they will be able to put the advice given into context and will be more likely to adhere to it. Knowing that HIV can be controlled with medication helps with acceptance and empowerment. PLWH themselves say that when they are informed about side effects, they are more likely to adhere to the medication because they know that the side effects they experience are normal.
In addition to understanding their disease and its treatment, it is important for them to learn about self-management. PLWH need to be made aware of the need for self-management and the concept behind it so that they can act on it. It is important to teach them about healthy eating, symptom management and where to get help if needed. For example, there are clinics with peer support groups, but PLWH are often unaware of them or do not know how to access them. Some patients rely solely on information provided by health care workers [30, 39]. Others get information from the pharmacist, the community, peers, the radio, and the Internet. Information from the community and the Internet is often misleading, scaring PLWH or leading to misconceptions.
There are many misconceptions and false beliefs about HIV. A common belief is that God can heal HIV and will give a sign when ART is needed. Another common misconception is that ART is ineffective or even harmful. Some other PLWH felt that ART had cured them and stopped taking their medication [32, 33, 35, 38,39,40, 43, 44, 46, 47, 52, 59, 84, 90, 98, 100, 105]. Another misconception about treatment is that PLWH use herbs instead of ART drugs, believing that herbal use is as effective as ART with fewer side effects. There are PLWH who use herbs in addition to ART for symptom management; in most cases, they are opposed to ART [59, 106, 107]. These misconceptions significantly reduce adherence to ART, and even prevention of mother-to-child transmission has been negatively affected. Illustrative quotes:
"I stopped taking my medication while I was being baptized with holy water (in a monastery). The priests there told us to just get baptized with the holy water and stop taking antiretroviral pills; I believed in Jesus and just took the holy water to be healed". [37]
"I have been using 'imbiza' (traditional medicine) since I stopped taking ARVs..., it was my mother who said we must try the traditional healer because they said his 'imbiza' helps..." [52]
Relationship with health care worker
Relationships between PLWH and health care providers play a critical role in improving service delivery, changing attitudes of PLWH, helping PLWH to take charge of their own care, and influencing PLWH's response to treatment and ability to self-manage their condition [18, 21,22,23, 26, 28, 31, 36, 39, 42, 44,45,46, 50, 51, 55, 56, 61, 65, 70, 75,76,77, 80,81,82,83,84,85,86, 88, 91, 94, 95, 98, 100, 103, 106, 108,109,110,111]. According to PLWH, health care professionals play a variety of roles, but the most important include providing information, managing symptoms, counseling patients on social and emotional issues, and inspiring and supporting self-management by showing patients how to adopt healthy lifestyles and cope with specific challenges [45, 56, 61, 65, 84, 85, 91, 94, 98]. PLWH valued health workers' knowledge and followed their advice. Trust in the health care worker made it possible to share concerns and receive needs-based treatment [42, 44, 65, 77, 100, 103, 108]. However, the results showed that the relationship with health workers was not always good. A bad experience with a health worker made it difficult for patients to return to the clinic and communicate openly [52, 63, 65, 72, 101].
Many patients reported an initial mistrust of the health care worker, but this was overcome when they saw that the health care worker cared about them. PLWH want a professional who treats them with respect and empathy [19, 28, 35, 37, 38, 47, 60, 61, 63, 65, 68, 69, 72, 73, 88, 100, 102, 110]. It was important for the health worker to be forgiving if the PLWH missed an appointment or could not follow through with advice. Otherwise, the person will be afraid to return to care and discouraged from trying again. In order to discuss the important issues at hand, the health care worker is expected to have sufficient time for the patient. Confidentiality is essential for the patient to speak openly [36, 39, 65, 68, 75, 76, 86, 91].
In low- and middle-income countries, patients often view health care providers as authorities [35, 81]. Many PLWH are not aware that they can ask the healthcare provider about their condition and treatment. If they do not understand what the provider is saying, or if they need help with a particular issue, such as side effects, they do not want to bother the provider [39, 50, 65, 70, 102]. Being able to ask questions and communicate about problems is an important patient responsibility, but many do not seem to be aware of it. The lack of communication leads to a lack of appropriate care and misunderstandings. PLWH appreciate learning about their role and enjoy being taught how to use communication tools such as a body map, pain scale and side effect checklist [102]. The following are some of illustrative quotes:
"Before, I didn't know if I could ask the doctor about my blood condition because I didn't know if I could ask doctors questions. Now I know that when I come to the hospital, I can ask any question I want" [102]
Self-efficacy skills and abilities
Self-efficacy is the process of achieving positive outcomes and fulfilling a desire or plan by controlling one's responses and reactions, including thoughts, emotions, and actions. As presented in the previous sections, PLWH face a multifaceted problem, either from the external environment (family, community, health facility) or internal source, which will necessitate to have the skills of self-efficacy for better self-management practice and treatment outcomes. As summarized in Fig. 3, although PLWH face different problems, they all want to live longer, take care of their families, contribute to society and be healthy through improved self-management practices, treatment outcomes and quality of life [21, 22, 30, 31, 33, 35,36,37,38,39, 42,43,44,45, 48, 50, 51, 54, 55, 57, 58, 61, 65, 68, 72, 75, 77, 78, 80, 82, 86, 89, 90, 95,96,97, 100, 103, 110, 112]. Having such desires or plans is taken as motivation to derive responses and coping mechanisms of PLWH, but some others fail and take a negative path which then ruins their lives. To cope with the internal and external problems, PLWH may have different self-efficacy for problems, positive or negative coping mechanisms (Fig. 3).
Summary of perspectives of PLWH on “self-efficacy skills and abilities″ their outcomes
Healthy coping mechanisms such as spirituality, physical exercise and changing mindsets are used by many PLWH. Shifting their perspective to a positive one, rationalizing the situation and living in the moment were seen as processes that help with acceptance of their condition. PLWH reported that disclosure made coping easier, as their internal processes could then be shared with the outside world [21, 23, 26, 45, 96, 106, 109, 113].
In order to live a long and healthy life, patients not only have to learn to deal with the emotional and physical problems they experience, but they had to change their lifestyle to prevent decay from the disease or getting co-morbidities. A healthy diet was perceived as important as well as safe sex practices [21, 23, 39, 45, 50, 56, 59, 67, 69, 81, 83, 94, 109]. Starting a new lifestyle can be stressful, and PLWH prefer to have some support in the process. An important step in the process is to negotiate the lifestyle rules to fit one's lifestyle with one's family. PLWH must learn to prioritize their health, but they must do so on their own terms [17, 23, 31, 33, 35, 36, 47, 52, 66, 72, 80,81,82, 86, 100, 101]. PLWH should be made aware of their role in managing their disease and improve their self-efficacy.
Another important self-efficacy skill is symptom management and adherence. The most important preventive measure is adherence to ART through self-compassionate activities such as yoga, relaxation, daily thoughts or daily exercise were found to be helpful [19, 42, 45, 50, 56, 57, 69, 100]. PLWH use a variety of strategies to increase adherence: reminders, daily routines, having a caregiver, carrying medication with them at all times [17, 19, 30, 35,36,37,38, 42, 45, 46, 49, 50, 55,56,57, 61, 69, 77, 81, 83, 85, 100, 109]. Ways to avoid side effects were also mentioned, for example, side effects were less likely to occur when taken with water and a meal, so PLWH made sure to have these available.
"It is a matter of convincing myself. I have the confidence and the power to treat myself. My self-efficacy increases from time to time" (45)
Not all coping strategies are positive. Some people resort to unhealthy habits such as alcohol and drug abuse [42, 56, 89, 90]. Others neglect the diagnosis or blame others for the infection [43, 59, 82, 94].
"One man chose not to take his medication on Friday evenings because he wanted to go out with friends and drink beer: this selective 'non-adherence' was part of his own self-management and search for well-being, balancing health and social life" [80]
Social facilitation
PLWH need multiple types of support including social, emotional, and adherence support from family, peers, health care providers and the community. These supports help a person adapt to new condition, combat stigma and discrimination, adhere to treatment protocols, and provide financial support and other benefits [19, 25, 31, 53, 61, 96, 97, 99, 104, 111, 113, 114]. Emotional support, for example, is very important in helping people accept their health status and adjust to the "new normal". People appreciate being able to share their feelings and are grateful to be accompanied to clinic visits [25, 31, 45, 56, 61, 77, 80, 97, 99, 114].
The social environment facilitated self-management through financial support [17, 21, 30, 36, 38, 39, 53, 59, 70, 75, 77, 85, 96, 99, 103, 104, 113, 114]. Sometimes social support helped PLWH with their daily tasks. In this way, PLWH are able to access the care they need and have time to practice self-management [25]. Social support often came from partners, family and friends. Community support encouraged PLWH to disclose their HIV status [115). Most often, being open about something resulted in social support rather than prejudice.
"I have attended both a social support group and a spiritual support group. These groups are very helpful, not only in building a social network of people with similar problems, but also as a safe place to get support, I think" [25]
''My girlfriend is the only person I have disclosed to, and she has helped me to cope with the disease and to take my HIV medication on the right schedule.'' [115]
Treatment supporters were said to improve the overall health of PLWH [53, 85, 100, 101, 104, 113, 114]. Their main purpose was to ensure that PLWH take their ART, but the role often extended to emotional support, help with daily tasks and dealing with stigma. It should also be noted that although most treatment supporters were reliable, not everyone considered their role to be equally important [53].
"A treatment supporter should be there all the time. Today you are happy, tomorrow you are not; and if someone is not there for you or doesn't really understand you, they will never help you.” [53].
Another very important social facilitator is peer support [25, 39, 42, 45, 49,50,51, 54, 56, 57, 59,60,61,62, 66, 69, 71, 72, 75, 80,81,82, 87, 88, 90, 94,95,96, 103, 108, 113, 114]. PLWH described how they saw their peers as role models for adherence and how seeing them looking healthy encouraged them. Many older PLWH also describe pride in being a role model for other people with the disease. Peer support groups provided a sense of belonging, a place to check on each other outside of meetings, and a source of information. PLWH would give each other advice on disclosure, dealing with stigma, healthy eating and ways to improve adherence.
Discussion
PLWH are caught between their desire to live a healthy, productive, and quality life and the multiple problems arise from both their internal (poor understanding of their disease and its treatment, lack of disclosure, internalized stigma) and external (stigma and discrimination, lack of family or community support, lack of patient-centered care) environments. PLWH respond to a variety of internal and external problems with positive or negative coping mechanisms, which also determine their level of self-management, treatment success and quality of life. Healthcare providers tend to practice professional-centered care and lack an understanding of patients' issues beyond their medical problems. Patients want to overcome the multidimensional problems they face and then live healthy lives by acquiring relevant knowledge and skills to be at the center of their own care management (self-management).
The current meta-synthesis showed that PLWH are situated between their desire to live a healthy, productive, and quality life and the many problems that arise from both their internal and external environments. This is consistent with previous evidences that have described numerous economic, social, psychological and behavioral challenges faced by PLWH [116,117,118]. For example, UNAIDS reports showed that 21% of PLWH were denied access to health care [118]. Although these problems are common among people with other chronic diseases, they are more pronounced among PLWH. There are three main reasons for this: (1) HIV is a highly stigmatized disease due to its mode of transmission, which has a strong social and cultural impact on the patient, (2) disease management requires long-term commitment from the patient, community and health system, and (3) a single problem can create multiple chains of problems [118,119,120,121]. For example, stigma and discrimination against the patient leads to poor adherence, which increases the risk of progression to AIDS, violence, and marginalization, while reducing access to education and employment [118]. Patients should be educated to be resilient and empowered to solve problems, lead productive lives and improve their quality of life. Health professionals should support and empower patients to solve problems on their own.
PLWH respond to a variety of internal and external problems with positive or negative coping mechanisms. In line with previous studies, this meta-synthesis depicted that positive coping mechanisms can include seeking support, using problem-solving strategies, living a healthy lifestyle, and developing self-compassion and mindfulness. With these skills, they can easily overcome problems and improve their quality of life [122,123,124]. In contrast, negative coping mechanisms, such as avoidance and escapism, denial, isolation, and substance use or addiction [117, 124], are ineffective in overcoming problems; rather, they complicate them. They usually lead to other problems including substance abuse, non-adherence to treatment, non-disclosure, anxiety, and depression, all of which affect patients' quality of life [117, 125]. It is imperative for patients to choose positive coping mechanisms when they encounter problems; this requires patients to be self-aware, self-efficacious, and have a positive outlook. Patients themselves and health care professionals should enhance skills of patients for a better quality of life.
Health care providers, according to PLWH, lack an understanding of patients' issues beyond their medical problems. They practice professional-centered care that ignores the chronicity of the disease, is inadequate to empower patients, and ignores the role of the patient, making care management unsustainable [126,127,128]. This type of care management has increased costs and increased patient burden on the health care system, which negatively impacts treatment outcomes [126, 128, 129)]. Recently, providers have increased their demands for patients to learn to cope with their disease and self-manage, and to learn and incorporate self-management into their service delivery [130, 131]. It is essential to follow a methodical, patient-centered approach that empowers patients having chronic disease to actively participate in daily disease management and decision making, complemented by improved provider knowledge and skills.
The desire of PLWHs is to overcome the multidimensional problems they face and live healthy lives. They have a desire to acquire relevant knowledge and skills to be the center of their own care management (self-management). Several studies show that patients play an important role in mitigating the negative effects of chronic diseases [126, 132]. Patients are in a better position to manage their chronic disease for two reasons: (1) they know their condition better than others; much of living with a chronic condition is done without external support; and (2) better treatment outcomes are achieved only when they are engaged, as they continually make decisions that affect the course of their disease. Self-management offers the opportunity to put patients at the center of their own care with full responsibility, contributing to better outcomes, higher quality of care and reduced burden on the healthcare system. Thus, the inclusion of self-management as a service component is key to increasing positive treatment outcomes for patients and reducing the burden on the healthcare system.
Implication for practice
Our paper provides a good overview of the experiences of HIV patients and their need for self-management. We have identified possible interventions areas that will optimize the care of HIV patients, especially in developing countries. A special focus should be given during service delivery or intervention to PLWH that goes beyond the medical problems of patients. A comprehensive SM intervention package is needed to halt the negative impact of HIV and promote positive outcomes. Integration of SM intervention packages into routine service delivery and treatment guidelines, followed by capacity building of service providers, should also be considered.
Health care workers should also pay more attention to their relationship with patients, as this has a significant impact on service delivery. They should ensure that they create a safe, open environment where PLWH feel comfortable to share experiences and ask questions. In addition, empowerment workshops for PLWH should be considered. In this way, PLWH can learn about their rights and responsibilities and improve their self-management skills.
Implication for future research
Self-management interventions for other chronic diseases, such as diabetes, hypertension, and heart failure, have been studied in LMICs and have been shown to improve physiological indicators, self-care knowledge, and quality of life in people with chronic diseases [133]. However, this practice has not been well studied among HIV patients, so the development and testing of SM interventions among PLWH is critical for the health care system in developing countries. Thus, the authors recommend exploring self-management interventions packaged with IFSMT effectiveness on improvement of the treatment outcomes among HIV patients. Furthermore, the development of tools for patient self-assessment and for health care providers to assess patients' SM practices is recommended.
Limitations of this study
The study has some limitations that need to be mentioned. The study was initially designed as a mixed-methods review and was registered in Prospero on April 19, 2021 (ID: CRD42021247459). Later, due to the large number of qualitative studies available, we changed to a meta-synthesis of qualitative studies. A review depends on the quality and value of the included studies. While the quality of the included studies was mostly good, their individual value is mostly moderate due to small sample sizes. It must also be acknowledged that a large proportion of the included studies (70%) were conducted in Africa and the applicability to other developing countries outside the African continent may be limited.
Conclusion
PLWH have a desire to live healthy, productive, and quality lives; however, they face multiple problems that come from both themselves and the external environment. In addition, because of their lack of knowledge and self-efficacy skills, PLWH face more complicated problems as a result of their responses to the primary problems. These complicated and multifaceted problems, coupled with a lack of support and proper chronic care management by the health facility, limit functionality, reduce productivity, worsen health status, and affect the quality of life of the patient. In addition, the negative impact extends to the family or society, resulting in increased burden and lost productivity, and to the health care system, resulting in increased burden.
In order to achieve better and more sustainable disease management and to improve outcomes and quality of life, patients should be engaged and empowered to manage their own care. Patients are in a better position than healthcare providers to monitor their chronic disease on a daily basis, and better outcomes can be achieved if they are engaged. Self-management practices offer us a better opportunity to put the patient at the center of his or her own care, with appropriate guidance from well-informed providers. In addition, both patients and providers have called for a more structured and comprehensive package of self-management interventions to overcome barriers and ensure a fulfilling life. The development of tools for patient and provider self-assessment of patients' SM practices, and the development and testing of SM interventions among PLWH, are critical to the health care system in developing countries.
Availability of data and materials
Not applicable.
References
UNAIDS. UNAIDS Data 2021 - HIV burden. Geneva: Joint United Nations Programme on HIV/AIDS (UNAIDS). 2021.
Atun RA, Gurol-Urganci I, McKee M. Health systems and increased longevity in people with HIV and AIDS. BMJ. 2009;338:b2165.
Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1–7.
Center for the Advancement of Health. Essential elements of self-management interventions. Washington, DC: Center for the Advancement of Health. 2002.
Areri HA, Marshall A, Harvey G. Interventions to improve self-management of adults living with HIV on antiretroviral therapy: a systematic review. PLoS ONE. 2020;15(5):e0232709.
Bernardin KN, Toews DN, Restall GJ, Vuongphan L. Self-management interventions for people living with human immunodeficiency virus: a scoping review. Can J Occup Ther. 2013;80(5):314–27.
Aantjes CJ, Ramerman L, Bunders JF. A systematic review of the literature on self-management interventions and discussion of their potential relevance for people living with HIV in sub-Saharan Africa. Patient Educ Couns. 2014;95(2):185–200.
Millard T, Elliott J, Girdler S. Self-management education programs for people living with HIV/AIDS: a systematic review. AIDS Patient Care STDS. 2013;27(2):103–13.
Cooper V, Clatworthy J, Whetham J, Consortium E. Health interventions to support self-management in HIV: a systematic review. Open AIDS J. 2017;11:119–32.
van Olmen J, Ku GM, Bermejo R, Kegels G, Hermann K, Van Damme W. The growing caseload of chronic life-long conditions calls for a move towards full self-management in low-income countries. Global Health. 2011;7:38.
Ryan P, Sawin KJ. The individual and family self-management theory: background and perspectives on context, process, and outcomes. Nurs Outlook. 2009;57(4):217–56.
Britten N. Qualitative research on health communication: what can it contribute? Patient Educ Couns. 2011;82(3):384–8.
Trappenburg J, Jonkman N, Jaarsma T, van Os-Medendorp H, Kort H, de Wit N, et al. Self-management: one size does not fit all. Patient Educ Couns. 2013;92(1):134–7.
Schipper K, Abma TA. Coping, family and mastery: top priorities for social science research by patients with chronic kidney disease. Nephrol Dial Transplant. 2011;26(10):3189–95.
Sandelowski M, Barroso J. Handbook for synthesizing qualitative research. New York: Springer Publishing Company Inc. 2007.
Critical Appraisal Skills Programme (CASP). CASP Systematic Review Checklist. Oxford, UK: CASP UK - OAP Ltd. 2018.
Hing M, Hoffman RM, Seleman J, Chibwana F, Kahn D, Moucheraud C. “Blood pressure can kill you tomorrow, but HIV gives you time”: illness perceptions and treatment experiences among Malawian individuals living with HIV and hypertension. Health Policy Plan. 2019;34(Supplement_2):ii36–44.
Selman L, Simms V, Penfold S, Powell RA, Mwangi-Powell F, Downing J, et al. 'My dreams are shuttered down and it hurts lots’—a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda. BMC Palliat Care. 2013;12(1):35.
Matima R, Murphy K, Levitt NS, BeLue R, Oni T. A qualitative study on the experiences and perspectives of public sector patients in Cape Town in managing the workload of demands of HIV and type 2 diabetes multimorbidity. PLoS One. 2018;13(3):e0194191.
Nyamathi AM, Sinha S, Ganguly KK, William RR, Heravian A, Ramakrishnan P, et al. Challenges experienced by rural women in India living with AIDS and implications for the delivery of HIV/AIDS care. Health Care Women Int. 2011;32(4):300–13.
Angwenyi V, Aantjes C, Kajumi M, De Man J, Criel B, Bunders-Aelen J. Patients experiences of self-management and strategies for dealing with chronic conditions in rural Malawi. PLoS ONE. 2018;13(7):e0199977.
Majumdar B. An exploration of socioeconomic, spiritual, and family support among HIV-positive women in India. J Assoc Nurses AIDS Care JANAC. 2004;15(3):37–46.
Marie Modeste RR, Majeke S. Self-care symptom-management strategies Amongst women living with HIV /AI DS in an urban area in KwaZulu-Natal. Health SA Gesondheid. 2010. https://doi.org/10.4102/hsag.v15i1.509.
Martin F, Kiwanuka T, Kawuma R, Zalwango F, Seeley J. Tasks and strategies of self-management of living with antiretroviral therapy in Uganda. AIDS Patient Care STDS. 2013;27(12):697–706.
Khumsaen N, Stephenson R. Adaptation of the HIV/AIDS self-management education program for men who have sex with men in Thailand: an application of the ADAPT-ITT framework. AIDS Edu Prevent Off Publ Int Soc AIDS Edu. 2017;29(5):401–17.
Thomas B, Nyamathi A, Swaminathan S. Impact of HIV/AIDS on mothers in southern India: a qualitative study. AIDS Behav. 2009;13(5):989–96.
Cobbing S, Hanass-Hancock J, Deane M. Physiotherapy rehabilitation in the context of HIV and disability in KwaZulu-Natal. South Africa Disabil Rehabil. 2014;36(20):1687–94.
Nyamathi AM, William RR, Ganguly KK, Sinha S, Heravian A, Albarrán CR, et al. Perceptions of women living with aids in rural India related to the engagement of HIV-trained accredited social health activists for care and support. J HIV AIDS Soc Serv. 2010;9(4):385–404.
Gaden A. A Comparative study of the barriers to HIV self-management among Myanmar migrant and Han Chinese women in Yunnan, China. Independent study project (ISP) collection. 2017;2736.
Wang K, Chen WT, Zhang L, Bao M, Zhao H, Lu H. Facilitators of and barriers to HIV self-management: Perspectives of HIV-positive women in China. Appl Nurs Res. 2016;32:91–7.
Kim MH, Zhou A, Mazenga A, Ahmed S, Markham C, Zomba G, et al. Why did i stop? Barriers and facilitators to uptake and adherence to ART in option B+ HIV care in Lilongwe, Malawi. PLoS ONE. 2016;11(2):e0149527.
Musumari PM, Feldman MD, Techasrivichien T, Wouters E, Ono-Kihara M, Kihara M. “If I have nothing to eat, I get angry and push the pills bottle away from me”: a qualitative study of patient determinants of adherence to antiretroviral therapy in the Democratic Republic of Congo. AIDS Care. 2013;25(10):1271–7.
Ngarina M, Popenoe R, Kilewo C, Biberfeld G, Ekstrom AM. Reasons for poor adherence to antiretroviral therapy postnatally in HIV-1 infected women treated for their own health: experiences from the Mitra Plus study in Tanzania. BMC Public Health. 2013;13:450.
Hardon AP, Akurut D, Comoro C, Ekezie C, Irunde HF, Gerrits T, et al. Hunger, waiting time and transport costs: time to confront challenges to ART adherence in Africa. AIDS Care. 2007;19(5):658–65.
Renju J, Moshabela M, McLean E, Ddaaki W, Skovdal M, Odongo F, et al. “Side effects” are “central effects” that challenge retention in HIV treatment programmes in six sub-Saharan African countries: a multicountry qualitative study. Sexually Trans Infect. 2017. https://doi.org/10.1136/sextrans-2016-052971.
Flax VL, Yourkavitch J, Okello ES, Kadzandira J, Katahoire AR, Munthali AC. “If my husband leaves me, I will go home and suffer, so better cling to him and hide this thing”: the influence of gender on Option B+ prevention of mother-to-child transmission participation in Malawi and Uganda. PLoS ONE. 2017;12(6):e0178298.
Bezabhe WM, Chalmers L, Bereznicki LR, Peterson GM, Bimirew MA, Kassie DM. Barriers and facilitators of adherence to antiretroviral drug therapy and retention in care among adult HIV-positive patients: a qualitative study from Ethiopia. PLoS ONE. 2014;9(5):e97353.
Kumarasamy N, Safren SA, Raminani SR, Pickard R, James R, Krishnan AK, et al. Barriers and facilitators to antiretroviral medication adherence among patients with HIV in Chennai, India: a qualitative study. AIDS Patient Care STDS. 2005;19(8):526–37.
Sanjobo N, Frich JC, Fretheim A. Barriers and facilitators to patients’ adherence to antiretroviral treatment in Zambia: a qualitative study. SAHARA J Soc Aspects HIV/AIDS Res Alliance. 2008;5(3):136–43.
Murray LK, Semrau K, McCurley E, Thea DM, Scott N, Mwiya M, et al. Barriers to acceptance and adherence of antiretroviral therapy in urban Zambian women: a qualitative study. AIDS Care. 2009;21(1):78–86.
Oskouie F, Kashefi F, Rafii F, Gouya MM. Barriers to self-care in women of reproductive age with HIV/AIDS in Iran: a qualitative study. Pan Afr Med J. 2017;28:231.
Skovdal M, Campbell C, Nhongo K, Nyamukapa C, Gregson S. Contextual and psychosocial influences on antiretroviral therapy adherence in rural Zimbabwe: towards a systematic framework for programme planners. Int J Health Plann Manage. 2011;26(3):296–318.
Dahab M, Kielmann K, Charalambous S, Karstaedt AS, Hamilton R, La Grange L, Fielding KL, Churchyard GJ, Grant AD. Contrasting reasons for discontinuation of antiretroviral therapy in workplace and public-sector HIV programs in South Africa. AIDS Patient Care STDs. 2011;25(1):53–9.
Wringe A, Roura M, Urassa M, Busza J, Athanas V, Zaba B. Doubts, denial and divine intervention: understanding delayed attendance and poor retention rates at a HIV treatment programme in rural Tanzania. AIDS Care. 2009;21(5):632–7.
Areri H, Marshall A, Harvey G. Exploring self-management of adults living with HIV on antiretroviral therapy in North-West Ethiopia: qualitative study. HIV AIDS (Auckl). 2020;12:809–20.
Ahmed SI, Farooqui M, Syed Sulaiman SA, Hassali MA, Lee CKC. Facilitators and barriers affecting adherence among people living with HIV/AIDS: a qualitative perspective. J Patient Exp. 2019;6(1):33–40.
Musheke M, Bond V, Merten S. Individual and contextual factors influencing patient attrition from antiretroviral therapy care in an urban community of Lusaka Zambia. J Int AIDS Soc. 2012;15(Suppl 1):1–9.
Skovdal M, Maswera R, Kadzura N, Nyamukapa C, Rhead R, Wringe A, et al. Parental obligations, care and HIV treatment: how care for others motivates self-care in Zimbabwe. J Health Psychol. 2020;25(13–14):2178–87.
Bofill LM, Lopez M, Dorigo A, Bordato A, Lucas M, Cabanillas GF, et al. Patient-provider perceptions on engagement in HIV care in Argentina. AIDS Care. 2014;26(5):602–7.
Martin F, Kiwanuka T, Kawuma R, Zalwango F, Seeley J. Tasks and strategies of self-management of living with antiretroviral therapy in Uganda. AIDS Patient Care STDs. 2013;27(12):697–706.
Skovdal M, Wringe A, Seeley J, Renju J, Paparini S, Wamoyi J, et al. Using theories of practice to understand HIV-positive persons varied engagement with HIV services: a qualitative study in six Sub-Saharan African countries. Sexually Trans Infect. 2017. https://doi.org/10.1136/sextrans-2016-052977.
Miller CM, Ketlhapile M, Rybasack-Smith H, Rosen S. Why are antiretroviral treatment patients lost to follow-up? A qualitative study from South Africa. Trop Med Int Health. 2010;15(Suppl 1):48–54.
Nakamanya S, Mayanja BN, Muhumuza R, Bukenya D, Seeley J. Are treatment supporters relevant in long-term antiretroviral therapy (ART) adherence? Experiences from a long-term ART cohort in Uganda. Glob Public Health. 2019;14(3):469–80.
Oskouie F, Kashefi F, Rafii F, Gouya MM, Vahid-Dastjerdi M. Facilitating factors of self-care among HIV-positive young women in Iran: a qualitative study. Int J Adolesc Med Health. 2018. https://doi.org/10.1515/ijamh-2017-0172.
Grant E, Logie D, Masura M, Gorman D, Murray SA. Factors facilitating and challenging access and adherence to antiretroviral therapy in a township in the Zambian Copperbelt: a qualitative study. AIDS Care. 2008;20(10):1155–60.
Tokwe L, Naidoo JR. Lived experiences of human immunodeficiency virus and hypertension in the Eastern Cape, South Africa. Afr J Prim Health Care Fam Med. 2020;12(1):e1–8.
Nyanzi-Wakholi B, Medina Lara A, Munderi P, Gilks C. on behalf of the DTT. The charms and challenges of antiretroviral therapy in Uganda: the DART experience. AIDS Care. 2012;24(2):137–42.
Oskouie F, Kashefi F, Rafii F, Gouya MM. Barriers to self-care in women of reproductive age with HIV/AIDS in Iran: a qualitative study. Pan Afr Med J. 2017;28:231.
Musheke M, Bond V, Merten S. Self-care practices and experiences of people living with HIV not receiving antiretroviral therapy in an urban community of Lusaka, Zambia: implications for HIV treatment programmes. AIDS Res Ther. 2013;10(1):12.
Srivastava N, Nyamathi AM, Sinha S, Carpenter C, Satyanarayana V, Ramakrishna P, et al. Women living with AIDS in rural Southern India: perspectives on mental health and lay health care worker support. J HIV AIDS Soc Serv. 2017;16(2):170–94.
Iroezi ND, Mindry D, Kawale P, Chikowi G, Jansen PA, Hoffman RM. A qualitative analysis of the barriers and facilitators to receiving care in a prevention of mother-to-child program in Nkhoma Malawi. Afr J Reprod Health. 2013;17(4):118–29.
Salem BE, Bustos Y, Shalita C, Kwon J, Ramakrishnan P, Yadav K, et al. Chronic disease self-management challenges among rural women living with HIV/AIDS in Prakasam, Andhra Pradesh, India: a qualitative study. J Int Assoc Providers AIDS Care. 2018;17:2325958218773768.
Ware NC, Wyatt MA, Geng EH, Kaaya SF, Agbaji OO, Muyindike WR, et al. Toward an understanding of disengagement from HIV treatment and care in sub-Saharan Africa: a qualitative study. PLoS Med. 2013;10(1):e1001369.
Mwangome M, Geubbels E, Klatser P, Dieleman M. Perceptions on diabetes care provision among health providers in rural Tanzania: a qualitative study. Health Policy Plan. 2017;32(3):418–29.
Gourlay A, Wringe A, Birdthistle I, Mshana G, Michael D, Urassa M. “It is like that, we didn’t understand each other”: exploring the influence of patient-provider interactions on prevention of mother-to-child transmission of HIV service use in rural Tanzania. PLoS ONE. 2014;9(9):e106325.
Venables E, Edwards JK, Baert S, Etienne W, Khabala K, Bygrave H. “They just come, pick and go.” The acceptability of integrated medication adherence clubs for HIV and non communicable disease (NCD) patients in Kibera, Kenya. PLoS ONE. 2016;11(10):e0164634.
Mbonye M, Seeley J, Ssembajja F, Birungi J, Jaffar S. Adherence to antiretroviral therapy in Jinja, Uganda: a six-year follow-up study. PLoS ONE. 2013;8(10):e78243.
Elwell K. Facilitators and barriers to treatment adherence within PMTCT programs in Malawi. AIDS Care. 2016;28(8):971–5.
Kuteesa MO, Seeley J, Cumming RG, Negin J. Older people living with HIV in Uganda: understanding their experience and needs. African J AIDS Res AJAR. 2012;11(4):295–305.
Lubega M, Musenze IA, Joshua G, Dhafa G, Badaza R, Bakwesegha CJ, et al. Sex inequality, high transport costs, and exposed clinic location: reasons for loss to follow-up of clients under prevention of mother-to-child HIV transmission in eastern Uganda - a qualitative study. Patient Prefer Adherence. 2013;7:447–54.
Chinkonde JR, Sundby J, Martinson F. The prevention of mother-to-child HIV transmission programme in Lilongwe, Malawi: why do so many women drop out. Reprod Health Matters. 2009;17(33):143–51.
Rachlis B, Naanyu V, Wachira J, Genberg B, Koech B, Kamene R, et al. Identifying common barriers and facilitators to linkage and retention in chronic disease care in western Kenya. BMC Public Health. 2016;16:741.
Bogart LM, Chetty S, Giddy J, Sypek A, Sticklor L, Walensky RP, et al. Barriers to care among people living with HIV in South Africa: contrasts between patient and healthcare provider perspectives. AIDS Care. 2013;25(7):843–53.
Henning M, Chi C. Exploring factors associated with a teacher’s self-efficacy in HIV prevention education in Lusaka, Zambia. Int J Equity Health. 2011. https://doi.org/10.1186/1475-9276-11-S1-A4.
Mwangome MN, Geubbels E, Klatser P, Dieleman M. “I don’t have options but to persevere”. Experiences and practices of care for HIV and diabetes in rural Tanzania: a qualitative study of patients and family caregivers. Int J Equity Health. 2016;15:56.
Ciambrone D, Loewenthal HG, Bazerman LB, Zorilla C, Urbina B, Mitty JA. Adherence among women with HIV infection in Puerto Rico: the potential use of modified directly observed therapy (MDOT) among pregnant and postpartum women. Women Health. 2006;44(4):61–77.
Watt MH, Maman S, Earp JA, Eng E, Setel PW, Golin CE, et al. “It’s all the time in my mind”: facilitators of adherence to antiretroviral therapy in a Tanzanian setting. Soc Sci Med. 2009;68(10):1793–800.
McGrath JW, Winchester MS, Kaawa-Mafigiri D, Walakira E, Namutiibwa F, Birungi J, et al. Challenging the paradigm: anthropological perspectives on HIV as a chronic disease. Med Anthropol. 2014;33(4):303–17.
Parimi P, Mishra RM, Tucker S, Saggurti N. Mobilising community collectivisation among female sex workers to promote STI service utilisation from the government healthcare system in Andhra Pradesh India. J Epidemiol Commun Health. 2012;66(Suppl 2):62–8.
Russell S, Martin F, Zalwango F, Namukwaya S, Nalugya R, Muhumuza R, et al. Finding meaning: HIV self-management and wellbeing among people taking antiretroviral therapy in Uganda. PLoS ONE. 2016;11(1):e0147896.
Russell S, Namukwaya S, Zalwango F, Seeley J. The Framing and fashioning of therapeutic citizenship among people living with HIV taking antiretroviral therapy in Uganda. Qual Health Res. 2016;26(11):1447–58.
Skovdal M, Campbell C, Madanhire C, Mupambireyi Z, Nyamukapa C, Gregson S. Masculinity as a barrier to men’s use of HIV services in Zimbabwe. Global Health. 2011;7:13.
Wallace DD, Payán DD, Then-Paulino A, Armenta G, Fulcar MA, Acevedo R, et al. Perceptions and determinants of healthy eating for people with HIV in the Dominican Republic who experience food insecurity. Public Health Nutr. 2020. https://doi.org/10.1017/S1368980020002694.
Duff P, Kipp W, Wild TC, Rubaale T, Okech-Ojony J. Barriers to accessing highly active antiretroviral therapy by HIV-positive women attending an antenatal clinic in a regional hospital in western Uganda. J Int AIDS Soc. 2010;13:37.
Ware NC, Idoko J, Kaaya S, Biraro IA, Wyatt MA, Agbaji O, et al. Explaining adherence success in sub-Saharan Africa: an ethnographic study. PLoS Med. 2009;6(1):e11.
Murithi LK, Masho SW, Vanderbilt AA. Factors enhancing utilization of and adherence to prevention of mother-to-child transmission (PMTCT) service in an urban setting in Kenya. AIDS Behav. 2015;19(4):645–54.
Zhang YX, Golin CE, Bu J, Emrick CB, Nan Z, Li MQ. Coping strategies for HIV-related stigma in Liuzhou China. AIDS Behavior. 2014;18(Suppl 2):S212-20.
Nyamathi A, Ekstrand M, Srivastava N, Carpenter CL, Salem BE, Al-Harrasi S, et al. ASHA-life intervention perspectives voiced by rural Indian women living with AIDS. Health Care Women Int. 2016;37(4):412–25.
Sabin LL, Desilva MB, Hamer DH, Keyi X, Yue Y, Wen F, et al. Barriers to adherence to antiretroviral medications among patients living with HIV in southern China: a qualitative study. AIDS Care. 2008;20(10):1242–50.
Earnshaw VA, Bogart LM, Courtney I, Zanoni H, Bangsberg DR, Orrell C, et al. Exploring treatment needs and expectations for people living with HIV in South Africa: a qualitative study. AIDS Behav. 2018;22(8):2543–52.
Zhou YR. Help-seeking in a context of AIDS stigma: understanding the healthcare needs of people with HIV/AIDS in China. Health Soc Care Commun. 2009;17(2):202–8.
Nyamathi A, Hanson AY, Salem BE, Sinha S, Ganguly KK, Leake B, et al. Impact of a rural village women (Asha) intervention on adherence to antiretroviral therapy in southern India. Nurs Res. 2012;61(5):353–62.
Joseph EB, Bhatti RS. Psychosocial problems and coping patterns of HIV seropositive wives of men with HIV/AIDS. Soc Work Health Care. 2004;39(1–2):29–47.
Wekesa E, Coast E. Living with HIV postdiagnosis: a qualitative study of the experiences of Nairobi slum residents. BMJ Open. 2013;3(5):e002399.
Makoae LN, Greeff M, Phetlhu RD, Uys LR, Naidoo JR, Kohi TW, et al. Coping with HIV-related stigma in five African countries. J Assoc Nurses AIDS Care JANAC. 2008;19(2):137–46.
Russell S, Seeley J. The transition to living with HIV as a chronic condition in rural Uganda: working to create order and control when on antiretroviral therapy. Soc Sci Med. 2010;70(3):375–82.
Yang Y, Lewis FM, Wojnar D. Life changes in women infected with HIV by their husbands: an interpretive phenomenological study. J Assoc Nurses AIDS Care JANAC. 2015;26(5):580–94.
Kebaabetswe PM. Barriers to participation in the prevention of mother-to-child HIV transmission program in Gaborone, Botswana a qualitative approach. AIDS Care. 2007;19(3):355–60.
Fredriksen-Goldsen KI, Shiu CS, Starks H, Chen WT, Simoni J, Kim HJ, et al. “You must take the medications for you and for me”: family caregivers promoting HIV medication adherence in China. AIDS Patient Care STDS. 2011;25(12):735–41.
van Loggerenberg F, Gray D, Gengiah S, Kunene P, Gengiah TN, Naidoo K, et al. A qualitative study of patient motivation to adhere to combination antiretroviral therapy in South Africa. AIDS Patient Care STDS. 2015;29(5):299–306.
Layer EH, Brahmbhatt H, Beckham SW, Ntogwisangu J, Mwampashi A, Davis WW, et al. “I pray that they accept me without scolding:” experiences with disengagement and re-engagement in HIV care and treatment services in Tanzania. AIDS Patient Care STDS. 2014;28(9):483–8.
MacLachlan EW, Potter K, Hamunime N, Shepard-Perry MG, Uusiku J, Simwanza R, et al. “We are now free to speak”: Qualitative evaluation of an education and empowerment training for HIV patients in Namibia. PLoS ONE. 2016;11(4):e0153042.
Xie T, Yang JP, Simoni JM, Shiu CS, Chen WT, Zhao H, et al. Unable to be a human being in front of other people: a qualitative study of self-isolation among people living with HIV/AIDS in China. J Clin Psychol Med Settings. 2017;24(3–4):211–22.
Nachega JB, Knowlton AR, Deluca A, Schoeman JH, Watkinson L, Efron A, et al. Treatment supporter to improve adherence to antiretroviral therapy in HIV-infected South African adults: a qualitative study. JAIDS J Acquir Immune Defic Syndrom. 2006;43:S127–33.
Bwirire LD, Fitzgerald M, Zachariah R, Chikafa V, Massaquoi M, Moens M, et al. Reasons for loss to follow-up among mothers registered in a prevention-of-mother-to-child transmission program in rural Malawi. Trans R Soc Trop Med Hyg. 2008;102(12):1195–200.
Syed IA, Sulaiman SAS, Hassali MA, Thiruchelvam K, Syed SH, Lee CKC. Beliefs and practices of complementary and alternative medicine (CAM) among HIV/AIDS patients: a qualitative exploration. Eur J Integrative Med. 2016;8(1):41–7.
Unge C, Ragnarsson A, Ekström AM, Indalo D, Belita A, Carter J, et al. The influence of traditional medicine and religion on discontinuation of ART in an urban informal settlement in Nairobi, Kenya. AIDS Care. 2011;23(7):851–8.
Van Tam V, Pharris A, Thorson A, Alfven T, Larsson M. “It is not that I forget, it’s just that I don’t want other people to know”: barriers to and strategies for adherence to antiretroviral therapy among HIV patients in Northern Vietnam. AIDS Care. 2011;23(2):139–45.
Marie Modeste RR, Majeke SJ. Sources and types of information on self-care symptom management strategies for HIV and AIDS. Curationis. 2014;37(1):127.
Shin S, Muñoz M, Zeladita J, Slavin S, Caldas A, Sanchez E, et al. How does directly observed therapy work? The mechanisms and impact of a comprehensive directly observed therapy intervention of highly active antiretroviral therapy in Peru. Health Soc Care Community. 2011;19(3):261–71.
Li L, Wu S, Wu Z, Sun S, Cui H, Jia M. Understanding family support for people living with HIV/AIDS in Yunnan, China. AIDS Behavior. 2006;10(5):509–17.
Wamoyi J, Renju J, Moshabela M, McLean E, Nyato D, Mbata D, et al. Understanding the relationship between couple dynamics and engagement with HIV care services: insights from a qualitative study in Eastern and Southern Africa. Sexually Trans Infect. 2017. https://doi.org/10.1136/sextrans-2016-052976.
Duwell MM, Knowlton AR, Nachega JB, Efron A, Goliath R, Morroni C, et al. Patient-nominated, community-based HIV treatment supporters: patient perspectives, feasibility, challenges, and factors for success in HIV-infected South African adults. AIDS Patient Care STDS. 2013;27(2):96–102.
O’Laughlin KN, Wyatt MA, Kaaya S, Bangsberg DR, Ware NC. How treatment partners help: social analysis of an African adherence support intervention. AIDS Behav. 2012;16(5):1308–15.
Nachega JB, Knowlton AR, Deluca A, Schoeman JH, Watkinson L, Efron A, et al. Treatment supporter to improve adherence to antiretroviral therapy in HIV-infected South African adults. A qualitative study. J Acquir Immune Defic Syndr. 2006;43(Suppl 1):S127-33.
Remien RH, Mellins CA. Long-term psychosocial challenges for people living with HIV: let’s not forget the individual in our global response to the pandemic. AIDS. 2007. https://doi.org/10.1097/01.aids.0000298104.02356.b3.
McIntosh RC, Rosselli M. Stress and coping in women living with HIV: a meta-analytic review. AIDS Behav. 2012;16(8):2144–59.
UNAIDS. HIV and stigma and discrimination. 2021.
Swendeman D, Ingram BL, Rotheram-Borus MJ. Common elements in self-management of HIV and other chronic illnesses: an integrative framework. AIDS Care. 2009;21(10):1321–34.
Aidsmap. HIV criminalisation laws around the world 2020. https://www.aidsmap.com/about-hiv/hiv-criminalisation-laws-around-world.
Idemudia ES, Olasupo MO, Modibo MW. Stigma and chronic illness: a comparative study of people living with HIV and/or AIDS and people living with hypertension in Limpopo Province South Africa. Curationis. 2018;41(1):e1–5.
Kalichman SC, Kalichman MO, Cherry C, Swetzes C, Amaral CM, White D, et al. Brief behavioral self-regulation counseling for HIV treatment adherence delivered by cell phone: an initial test of concept trial. AIDS Patient Care STDS. 2011;25(5):303–10.
Kumar S, Mohanraj R, Rao D, Murray KR, Manhart LE. Positive coping strategies and HIV-related stigma in south India. AIDS Patient Care STDS. 2015;29(3):157–63.
Tong H, Zhou Y, Li X, Qiao S, Shen Z, Yang X, et al. Stress coping strategies and their perceived effectiveness among HIV/AIDS healthcare providers in China: a qualitative study. Psychol Health Med. 2022;27(4):937–47.
Rodkjaer L, Chesney MA, Lomborg K, Ostergaard L, Laursen T, Sodemann M. HIV-infected individuals with high coping self-efficacy are less likely to report depressive symptoms: a cross-sectional study from Denmark. Int J Infect Dis IJID Off Publ Int Soc Infect Dis. 2014;22:67–72.
Josefien van Olmen GMK, Bermejo R, Kegels G, Hermann K, Van Damme W. The growing caseload of chronic life-long conditions calls for a move towards full selfmanagement in low-income countries. Globalization Health. 2011. https://doi.org/10.1186/1744-8603-7-38.
Grilo AM, dos Santos MC, Gomes AI, Rita JS. Promoting patient-centered care in chronic disease. Patient Centered Med. 2017. https://doi.org/10.5772/67380.
Schreiner N, DiGennaro S, Harwell C, Burant C, Daly B, Douglas S. Treatment burden as a predictor of self-management adherence within the primary care population. J Appl Nurs Res. 2020;54:151301.
Samiei Siboni F, Alimoradi Z, Atashi V, Alipour M, Khatooni M. Quality of life in different chronic diseases and its related factors. Int J Prev Med. 2019;10:65.
Bos-Touwen I, Dijkkamp E, Kars M, Trappenburg J, De Wit N, Schuurmans M. Potential for self-management in chronic care: nurses’ assessments of patients. Nurs Res. 2015;64(4):282–90.
Chambers LA, Rueda S, Baker DN, Wilson MG, Deutsch R, Raeifar E, et al. Stigma, HIV and health: a qualitative synthesis. BMC Public Health. 2015;15(1):848.
Clark NM, Gong M, Kaciroti N. A model of self-regulation for control of chronic disease. Health Educ Behav. 2001;28(6):769–82.
Hearn J, Ssinabulya I, Schwartz JI, Akiteng AR, Ross HJ, Cafazzo JA. Self-management of non-communicable diseases in low- and middle-income countries: a scoping review. PLoS ONE. 2019;14(7):e0219141.
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TLD, AMC, YT, MS conceived the study, involved in the study design, data analysis, drafting the manuscript and critically reviewing the manuscript. GM and MS involved in data analysis and critically reviewing the manuscript. All authors read and approved the final manuscript.
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Self-efficacy skills andabilities.
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Dadi, T.L., Wiemers, A.M.C., Tegene, Y. et al. Experiences of people living with HIV in low- and middle-income countries and their perspectives in self-management: a meta-synthesis. AIDS Res Ther 21, 7 (2024). https://doi.org/10.1186/s12981-024-00595-7
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DOI: https://doi.org/10.1186/s12981-024-00595-7