Adherence to antiretroviral treatment among adolescents living with HIV/AIDS: Integrative Literature Review

Review Article

Vol. 16 nº 2 - Apr/Jun - 2019
Pages:110-
119

Adherence to antiretroviral treatment among adolescents living with HIV/AIDS: Integrative Literature Review

Authors: ^¹, ^², ^³, ^⁴

¹Bachelor’s degree in Nursing from the Paulista School of Nursing of the Federal University of Sao Paulo. Sao Paulo, SP, Brazil.

²Doctorate in Science from the Federal University of Sao Paulo (UNIFESP). Professor at the Multidisciplinary Center of Cruzeiro do Sul of the Federal University of Acre (UFAC). Cruzeiro do Sul – AC – Brazil

³Doctorate in Science from the Federal University of Sao Paulo (UNIFESP). Professor at the Paulista School of Nursing of the Federal University of Sao Paulo (UNIFESP). Sao Paulo, SP, Brazil

⁴Doctorate in Science from the Federal University of Sao Paulo (UNIFESP). Nurse in the Hospital Infection Control Service of the Sao Paulo Hospital of the Federal University of Sao Paulo. Sao Paulo, SP, Brazil

Correspondence:

Mayra da Silva Marques
Rua Napoleao de Barros, nº 754, Vila Clementino
Sao Paulo, SP, Brazil. Zip Code: 04024-002
( may-marques11@outlook.com )

Submitted on 10/02/2018
Approved on 02/09/2019

Keywords: Medication Adherence; HIV; Acquired Immunodeficiency Syndrome; Teenager.

Abstract

OBJECTIVE: To identify in the literature the factors that interfere with adherence to drug therapy in adolescents living with HIV/AIDS.
DATA SOURCES: An integrative literature review was carried out, with searches in five databases. The descriptors in health sciences (DeCS) and Medical Subject Headings (MeSH) were used, namely: medication adherence, HIV, Acquired Immunodeficiency Syndrome, adolescent and Medication Adherence, HIV, Acquired Immunodeficiency Syndrome, Adolescent, respectively. Full articles in Portuguese, English and Spanish from 2007 to 2017 were selected.
DATA SYNTHESIS: Thirty-four articles were found and after applying the inclusion criteria, six articles were selected. Of these, five in Portuguese (83.3%), carried out in Brazil and one in English (16.7%), carried out in the United States of America. Regarding the type of study, four of them had qualitative data (66.6%), one had mixed methodology (16.7%) and one was a literature review (16.7%). After reading the selected articles, four categories emerged regarding adherence: factors related to drug characteristics, treatment effects and dosage, social and economic factors and age group.
CONCLUSION: Knowledge of the factors that influence adherence is essential for nurses and other health professionals to be able to provide comprehensive care and develop strategies that favor adherence to treatment, improving the attitude of adolescents and their caregivers, enhancing their self-care capacity.

INTRODUCTION The human immunodeficiency virus (HIV) is the causative agent of acquired immunodeficiency syndrome (AIDS), a disease that affects the human immune system and mainly affects CD4+ T lymphocytes. HIV uses the deoxyribonucleic acid (DNA) of these cells for the viral replication process and subsequently causes their destruction, resulting in a reduction in the overall count of these lymphocytes, which makes the body more vulnerable to infections ¹ . The first cases were identified in the United States of America in the early 1980s and subsequently spread throughout the world, including Brazil. The disease has become a pandemic and a serious public health problem ^2,3 . According to the latest national epidemiological bulletin, since the appearance of the disease in Brazil (1980) until June 2017, there have been 882,810 notifications of cases of patients living with HIV/AIDS in the country. From 2007 to June 2017, a total of 194,217 cases were reported to the National Disease Reporting System (SINAN), compared to 6,861 cases in 2007. In the first half of 2017, 16,365 new cases were reported, which represents a significant increase ⁴ . In 2007, 104 new cases were reported among adolescents, and in the first half of 2017, 688 cases were reported, representing an increase of approximately 600% in just ten years ⁴ . Despite the increasing number of cases, mortality among this population has been decreasing in Brazil since 1996, with the creation of Law No. 9,313/96, which guarantees all people diagnosed with the disease access to medication through the Unified Health System (SUS) ¹ . Data from the United Nations Programme on HIV /AIDS (UNAIDS) showed an increase in the total number of adolescents aged 15 to 19 living with HIV/AIDS in 25 countries, from approximately 800,000 in 2005 to 940,000 in 20155. HIV infection has recently been considered a chronic and potentially controllable disease, since the emergence of combination antiretroviral therapy (ART) and the availability of biomarkers, such as CD4 T lymphocyte count and viral load, to monitor its progression. These advances have greatly improved people’s lives6 . ^Upon entering human cells, the virus causes an uncoordinated multiplication of infected cells. Antiretrovirals act on several phases of replication, slowing the development of the disease and reducing the amount of virus in the ^body7 . However, it is known that the effectiveness of treatment depends on good adherence and correct use of medication, avoiding the emergence of resistant strains ⁸ . The factors for adherence among children and adolescents are diverse, considering that children often depend on their caregiver to administer the medication, and therefore it is necessary that not only the child but also their caregiver be responsible for adherence. Bronwyne et al. ⁹ analyzed the barriers and facilitators to adherence within the pediatric community in South Africa, where the main factor for non-adherence was the unpleasant taste of the medication and the amount to be ingested, considering that the tablets are large and the child often takes the tablets more than once a day. In addition, problems with administration by the caregiver, who is not always the only one, have been reported, leading to failures in the administration of the drug. In Brazil, studies ^10,11 show a reality not very different from that of South Africa when it comes to the scenario of adolescents. The difficulty in administering the complex therapeutic regimen, which often requires a change in lifestyle for which the caregiver and the patient are not prepared; the failure of the caregiver to disclose the diagnosis for fear of stigma and prejudice; the difficulties related to young people understanding the need for treatment; and the palatability of the drugs. Given the lack of drugs exclusive to this age group, these are conditions that interfere with the process of adherence to treatment. These factors favor the clinical progression of the disease, which can lead to serious outcomes and death in the child or adolescent. In view of the above, it is possible to highlight that adherence to drug therapy is a daily challenge and nursing professionals, as members of the multidisciplinary team in health services and care for people living with HIV/AIDS, have a fundamental role in developing strategies that aim at adherence to treatment in the adolescent population, to improve the attitude of the adolescents and their caregivers. Thus, the objective of the present study was to identify the factors that interfere with adherence to drug therapy in adolescents living with HIV/AIDS, and thus contribute so that health professionals can provide comprehensive care by strengthening and improving the decision-making capacity regarding adherence to treatment of this population. METHOD Ethical aspects This study was submitted to and approved by the ethics and research committee of the Federal University of Sao Paulo under protocol number 1376/2017. An integrative literature review was carried out on the factors that interfere with adherence to drug therapy in adolescents living with HIV/AIDS. The research was carried out from September 2017 to May 2018, and the six methodological steps of the integrative review were used ^12,13 . In the first stage, the guiding question of the study was formulated: “What are the main factors that interfere with adherence to antiretroviral treatment in adolescents?”. Based on the elaboration of the question, the keywords were defined, according to the descriptors in health sciences (DeCS) and the Medical Subject Headings (MeSH), namely: medication adherence, HIV, Acquired Immunodeficiency Syndrome, adolescent and Medication Adherence, HIV, Acquired Immunodeficiency Syndrome, Adolescent , respectively. In the second stage, the criteria for inclusion and exclusion of the studies were established and the databases for the search were defined. The inclusion criteria were: national and international articles, published between 2007 and 2017, in Portuguese, English and Spanish, with full texts available, related to the research question. The exclusion criteria adopted were: theses and dissertations and articles whose theme did not refer to the central object of study of the research. The scientific databases used were: Scientific Electronic Library Online (SCIELO) and US National Library of Medicine (PUBMED), and through the Virtual Health Library (BVS) the following databases were accessed: Latin American and Caribbean Literature in Social and Health Sciences (LILACS), Nursing Database ( BDENF), Medical Literature Analysis and Retrieval System Online (MEDLINE). The selection of articles was first made by reading their titles/abstracts, and finally the studies were analyzed in full. Figure 1 shows how the search was performed in each database.

Figure 1. Stages of article selection in the databases analyzed in the present study.

For the third stage, an instrument was developed to organize and analyze the results found (Table 1), which included: (1) authors, place and date of publication, (2) objective of the study, (3) Type of study/method, (4) main results and (5) level of evidence, according to the Melnyk and Fineout-Overholt model ¹⁴ :

Level 1 – Evidence from a systematic review or meta-analysis of all relevant randomized controlled trials or from clinical guidelines based on systematic reviews of randomized controlled trials; Level 2 – Evidence from at least one well-designed randomized controlled trial; Level 3 – Evidence from well-designed clinical trials without randomization; Level 4 – Evidence from well-designed cohort and case-control studies; Level 5 – Evidence from a systematic review of descriptive and qualitative studies; Level 6 – Evidence from a single descriptive or qualitative study; Level 7 – Evidence from expert opinion and/or expert committee reports.

In the fourth stage, the analysis of the studies that were included in the review was carried out, where the previously selected articles were read in full and the inclusion criteria were applied. In the fifth stage, the results were discussed and in the sixth, the descriptive report of this integrative review was constructed. RESULTS Through the methodology employed, six articles were selected, five in Portuguese (83.3%), carried out in Brazil and one in English (16.7%), carried out in the United States of America. The oldest study dates from 2009, and the most recent from 2015, with two studies being published in 2013. Table 1 shows a summary of the articles selected for this study, presented in ascending chronological order: The research presented was published in journals in three areas of knowledge: four in nursing (66.6%), one in psychology (16.7%) and one in medicine (16.7%). Regarding the training of the first author of the studies, 66.6% (n=4) are nurses, 16.7% (n=1) are psychologists and 16.7% (n=1) are dentists. In the design of the selected studies, four of them are qualitative (66.6%), one used mixed methodology (16.7%) and one performed a literature review (16.7%). Regarding the classification of the level of evidence according to the selected method, it can be noted that all studies are type VI, that is, evidence derived from a single descriptive or qualitative study. It is known that adherence to treatment is a phenomenon that has several dimensions, not depending on a single factor to occur. Regarding the objective of this review, that is, to identify the factors that interfere with adherence to drug therapy in adolescents with HIV/AIDS, after reading the selected articles, four categories emerged in relation to adherence, described below: Factors related to the characteristics of the drugs Among the six selected studies, five (83.3%) present factors related to the drugs as barriers to non-adherence. Factors such as the number of pills to be ingested and characteristics of the drug, such as the taste, odor and size of the pills, which are not suitable for this population, are cited. Factors related to the effects of treatment and dosage Five studies (83.3%) present the objective of treatment as a factor for non-adherence, due to the fact that treatment does not cure the disease, only controls it, which implies taking these drugs throughout life. The same studies also point out that adherence is limited by the number of times the medication needs to be taken, at rigid times that almost always conflict with the adolescents’ daily activities, such as going to school, for example, as well as the various side effects. Social and economic factors Infection with the human immunodeficiency virus still carries with it a great deal of stigma, prejudice and discrimination. These factors make it difficult to cope with the disease in several ways, such as adherence to drug therapy. This fact is brought up in four studies (66.6%) that make up this review. Situations in which there is a need to take the medication in public are an obstacle to adherence, since many adolescents see that this moment may favor the discovery of the diagnosis by others. Fear of rejection, prejudice and discrimination often means that the disclosure of the diagnosis is postponed, both by the caregiver to the adolescent and by the adolescent to his/her partner, a fact that may influence the increase in transmission of the disease, due to the beginning of the sexual life of adolescents. One of the studies (16.7%) also brings up the economic issue as a limiting factor for adherence. Although medications are distributed free of charge in many countries, treatment goes far beyond that, including the need for routine monitoring at health units, something that can be affected by the lack of money for transportation, for example. Even things that seem simple, such as maintaining a good diet to maintain good health, can be difficult to achieve in underdeveloped countries. Factors related to age group Difficulties in adherence are perceived more frequently in adolescents than in children, due to the characteristics of this age group, such as feelings of rebellion and various questions. It is possible to notice a cycle when talking about factors related to adolescents: the lack of autonomy on the part of the adolescent to take the medication is reported in one study (16.7%), where the caregiver wants the adolescent to take care of himself, aiming at his well-being. However, for people to be able to perform self-care, they need to be encouraged and informed, and adolescents often have difficulty understanding the severity of the disease or the goals of treatment, which means they do not understand why they should take the medication, a point that is addressed in 50% of the studies (n=3). The absence of symptoms due to the correct use of antiretrovirals is reported as a barrier in one study (16.7%), given that when there are no symptoms, adolescents understand that there is no longer a need to continue treatment. DISCUSSION Adherence to antiretroviral treatment among adolescents living with HIV/AIDS is a challenge for health professionals and services. Understanding the factors and characteristics that interfere with adherence to therapy among adolescents living with HIV/AIDS is an important tool for identifying the main health needs of this population and proposing specific coping strategies to increase adherence to therapy and reduce morbidity and mortality. The physical and organoleptic characteristics of medications and their side effects are still one of the greatest barriers to adequate adherence and are reported in several studies ^21-25 , which is in line with the results found in our research. Some strategies have been used to circumvent palatability issues, such as taking the tablets with food or other liquids other than water, in order to mask the taste and odor ^9,21 . This is an extremely important issue that should be addressed by the entire team, checking the possibility of changing the regimen being used or combining it with other medications that can alleviate adverse effects, such as antiemetics in cases of vomiting, for example. Hawkins et al. ²⁶ studied the factors that interfere with adherence and found a significant relationship between non-adherence and weekends. This can be explained by the fact that adolescents have a more active social life on weekends. The same study also shows that adherence is impaired when medications have to be taken outside the home environment, a fact that is consistent with other studies ^21-23 , and is related to the prejudice, discrimination and stigma that many people with the disease still suffer today, and who fear that their diagnosis will be discovered if they take their medications in public places. Economic issues should be considered when caring for adolescents, since absence from appointments may be due to a lack of money for transportation ²¹ , or even to buy medications. Maintaining good health, which is essential for treatment, involves a financial issue. A study conducted in South Africa ⁹ shows that caregivers consider keeping children and adolescents healthy a threat to their financial stability, both due to the upfront cost of food and subsequent costs after their appetite improves. The level of education of caregivers has been associated in some studies with low adherence of adolescents to medication ^21,22. Health professionals should be aware of the level of education of caregivers, aiming at strategies that favor their understanding of the information that will be passed on, given the complexity of the medication regimen. Some authors show that dependence on the caregiver to remind the adolescent about taking the medication ²¹ and forgetfulness ²² are important factors for non-adherence. Although the adolescent is in a phase where he/she seeks autonomy, this attitude does not reflect well when it comes to adherence to his/her own treatment, where he/she lacks commitment on his/her part to assume this self-care, being almost always dependent on the caregiver to remind him/her of the medication. The use of reminders, such as alarm clocks or cell phones, has been widely used so that doses are not forgotten, due to the large number of pills to be taken, several times a day ^21,24 . The caregiver sometimes postpones revealing the diagnosis to the adolescent, due to the possible reactions of the adolescent. However, this attitude makes it difficult for adolescents to understand the need for and importance of treatment, and they are also prevented from seeking support and coping networks, such as activities with other HIV-positive adolescents and educational groups. Health education, whether with the adolescent or their caregiver, has been shown to be an important factor in adherence to therapy and should be encouraged, as it improves the connection and relationship of trust between adolescents and their caregivers with health professionals, strengthening bonds ^21,24,25,27 . Listening empathetically, making room for adolescents to bring up their doubts and questions about their condition or treatment makes them feel welcomed, improving adherence. CONCLUSION Non-adherence to drug therapy can cause serious complications to the health of adolescents, and may even lead to death. From this study, it was possible to know which are the main factors that interfere with adherence and that this is a multifactorial phenomenon that requires an interdisciplinary and multiprofessional approach. It is clear that although we have made progress in the pharmaceutical field, existing antiretrovirals still cause several side effects, requiring more investment in this area, since it is a chronic disease that requires lifelong treatment. Health education can provide the general population with more information about HIV/AIDS, reducing the stigma and prejudice that still surrounds the disease, in addition to providing adolescents and their caregivers with important information, given the complexity of living with HIV, improving the attitude of young people and enhancing their self-care capacity. A limiting factor in this work was the scarcity of studies with this population, considering that many studies do not have an approach focused on the adolescent population, working with children and adolescents or adolescents and adults, which ends up not taking into account the specificities of this age group. In addition to the population studied, we highlight the level of evidence of the studies included in the review, which are derived from a single descriptive or qualitative study (VI), emphasizing the importance of strengthening studies on the subject through the publication of studies with a better level of evidence. It is also necessary to carry out more studies analyzing factors that can act as facilitators and strategies that can be addressed to obtain adequate adherence, overcoming the barriers described in this study. NOTE Financial Support: National Council for Scientific and Technological Development (CNPq) – Benefit Process: 123707/2017-0.

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