Original research ‘Staying alive’ with antiretroviral therapy: a grounded theory study of people living with HIV in Peru Juan Manuel Leyva-­Moral,1,2 Patrick Albert Palmieri ‍ ‍ ,3,4 Blanca Katiuzca Loayza-­Enriquez,2,5 Kara Lynette Vander Linden,6,7 Ursula Elisa Elias-­Bravo,8,9 Genesis Masiel Guevara-­Vasquez,2,10 Lucy Yonmey Davila-­Olano,11 Mariela Patricia Aguayo-­Gonzalez1,2 To cite: Leyva-­Moral JM, ABSTRACT Palmieri PA, Key questions Background To achieve an optimal quality of life through Loayza-­Enriquez BK, et al. chronic disease management, people living with HIV ‘Staying alive’ with antiretroviral What is already known? (PLHIV) must adhere to antiretroviral therapy (ART). ART therapy: a grounded theory ►► Antiretroviral therapy is effective at maintaining an has been available throughout Peru since 2004 without study of people living with HIV undetectable viral load for people infected with HIV in Peru. BMJ Global Health cost in all regions; yet only 60% (43 200) of PLHIV receive essential for the long-­term management of HIV as a 2021;6:e006772. doi:10.1136/ ART and 32% are virally suppressed. Despite the low chronic condition. bmjgh-2021-006772 adherence, little is known about the experience of PLHIV ►► Individual and collective social beliefs provide a wide with ART adherence in the context of Latin America. range of meanings to antiretroviral therapy with Handling editor Seye Abimbola Methods A constructivist grounded theory design was some beliefs limiting adherence. used to understand the ART adherence experiences of ►► Additional supplemental ►► Existing evidence suggests HIV care is not person PLHIV in Northern Peru. Unstructured interviews were material is published online only. centred as there is unidirectional communication conducted with 18 participants resulting in theoretical To view, please visit the journal and a lack of mutual respect that negatively impacts online (http://​dx.​doi.​org/​10.​ saturation. All interviews were recorded, immediately adherence. 1136/​bmjgh-​2021-​006772). transcribed and analysed concurrently with data collection using constant comparative analysis with ​Atlas.​ti (V.8) What are the new findings? software. Rigour was maintained through openness, ►► People infected with HIV learn to appreciate antiret- Received 29 June 2021 reflexivity, audit trail, memo writing, debriefings, member roviral therapy as their life source through experien- Accepted 5 October 2021 checks and positionality. tial learning as they trying to maintain their quality Results The core category ‘staying alive’ emerged of life. through the interaction of four categories, including: (1) ►► Authentic presence, effective communication and overcoming barriers; (2) working with the healthcare team; mutual respect offered by healthcare professionals (3) tailoring self-­care strategies; and (4) appreciating motivate people infected with HIV to tailor self-­care antiretrovirals. Adherence is not a spontaneous outcome, strategies to fit their lives. instead, the surprise of HIV diagnosis transitions to living with HIV as a chronic disease. The healthcare team What do the new findings imply? helps PLHIV realise ART is their life source by enhancing, ►► Adherence to antiretroviral therapy evolves from in- supporting and facilitating self-­care and overcoming dividual beliefs and personal perspectives about HIV barriers. to a shared framework with healthcare professionals Conclusion Adherence emerges from experiential providing mutual support. learning as PLHIV recognised ART as their life source in ►► Person-­centre care for people infected with HIV balance with their desire to continue living a normal life. needs to focus on develop trusting relationships with Social support and healthcare team interventions help authentic presence, effective communication and © Author(s) (or their PLHIV implement tailored self-­care strategies to overcome mutual respect. employer(s)) 2021. Re-­use personal, social, and structural barriers to adherence. ►► Future interventions should be tailored to people and permitted under CC BY-­NC. No situations to maximise adherence while concurrent- Healthcare professionals need to recognise the challenges commercial re-­use. See rights ly respecting their strong desire to maintain a good and permissions. Published by confronted by PLHIV as they learn how to continue living BMJ. while trying to stay alive. quality of life. For numbered affiliations see end of article. PLHIV including 16 000 unaware of their Correspondence to INTRODUCTION infection.2 HIV accounts for 1.8% of the Professor Dr Patrick Albert Palmieri; Globally, about 40 million people are living total disease burden and 1.9% of the total ​patrick.​palmieri@​uwiener.​ with HIV (PLHIV) with two million in Latin annual deaths (2200) in Peru.3 4 Since 2010, edu.​pe America.1 In Peru, there are at least 72 000 prevalence has risen by almost 25%, and Leyva-­Moral JM, et al. BMJ Global Health 2021;6:e006772. doi:10.1136/bmjgh-2021-006772  1 BMJ Global Health AIDS-­ related deaths have increased by 15%.5 PLHIV theory evolves from the multiple realities, positions and need to adhere to antiretroviral therapy (ART) in order subjectivities of the participants are explored through a reduce the risk for transmission and to manage HIV as constant comparative approach. As such, the interpreta- a chronic disease. Despite ART being available without tive understanding results in a theory grounded in the cost in all regions of the country,6 Peru has achieved words and experiences of the participants.38 The study is only moderate progress in managing PLHIV7 as 60% (43 reported according to the criteria recommended by the 39 200) know their status and 60% receive ART. Further- Standards for Reporting Qualitative Research (online more, only 32% of Peruvians living with HIV are virally supplemental table 1). suppressed.8 These data are estimates as there is not a national monitoring system.9 Peru has not provided data Setting for the newest country score card.10 The study was conducted in Chiclayo, a city in Northern As PLHIV attribute meaning to their interactions with Peru in the department of Lambayeque, with a popula- people and objectives as a social process,11 they select, tion of 645 000. Due to the decentralised public health organise, reproduce and transform the meaning of living system and the fragmented HIV reporting in Peru, with HIV. Although ART adherence is negatively impacted regional data are not readily available from the central by the realities of daily living, PLHIV can be adherent government.40 However, the HIV unit at the regional between 80%12 and 95%13 to maintain viral suppression. hospital where this study was conducted manages about This means there is some room for omissions, oversights, 250 PLHIV each year; more than half non-­ adherent and errors. Adherence is complicated as PLHIV report with ART.40 PLHIV receive free health services from a negative perceptions about ART side effects,14 efficacy15 core team composed of a clinical nurse coordinator, an and healthiness.16 Furthermore, adherence risk has infectious disease physician, and a midwife with support been associated with concerned about dependency,17 services provided by laboratory, nutrition, pharmacy and body changes16 and fatigue.18 Due to past experiences, psychology professionals. Similar to most Latin American some PLHIV associate ART with approaching death.19 countries, Peru is officially a Catholic country with most In the context of Peru, one small study with data from people identifying as Catholic. As a result, PLHIV often 2006 focused on facilitators and barriers to ART adher- feel stigmatised and experience discrimination41 as their ence reported risk was also related to concern about side HIV infection is considered a divine punishment for sin.42 effects (74%), perceived danger (19%) and doubts about efficacy (16%).20 Despite these negative perspectives, many PLHIV realise ART keeps them alive.21–24 Sample Previous grounded theory studies related to PLHIV and Theoretical sampling43 was used to select participants as ART adherence have largely focused on access to care,25 the interviews progressed. The strategy sought to achieve physician practices such as communication,26 counsel- maximum variability44 while the analysis provided the ling strategies such as by community pharmacists27 and participant profiles necessary to achieve theoretical sensi- symptom management.28 Other studies have focused on tivity.45 The nurse responsible for coordinating the HIV targeted populations such as HIV-­positive drug users,29 unit verbally invited patients to participate in the study sex workers,30 young people31 and asymptomatic people during their normally scheduled visit. The nurse coor- infected with HIV.32 While most grounded theory studies dinator was well known to the HIV community for her about ART adherence are from an African context,33 professionalism, community engagement and commit- none were identified for Latin America. Furthermore, in ment to improving the quality of life for PLHIV in the the context of Peru, little is known about the experiences region. In addition, the research team was familiar to of PLHIV with ART. As such, the purpose of this study was the HIV community due to multiple interactions during to develop a theory about the meaning of ART adherence previous studies. After receiving a verbal explanation from the experiences of PLHIV in the Northern region about the study accompanied by written materials, of Peru. patients opting to participate in the study were able to schedule an interview appointment, at their discretion, with the principal investigator. This provided potential METHODS participants with an opportunity to review the written Study design materials prior to the informed consent process at the This study adopted a constructivist grounded theory time of the interview. The initial inclusion criteria were approach34 35 to understand ART adherence as a adults with an HIV diagnosis, clinically managed at the social process for theory development. According to HIV unit, presenting with sufficient mental capacity to Charmaz,36 constructivist grounded theory provides ‘a participant in an interview. The sample size was deter- method of conducting qualitative research that focuses mined by the theoretical saturation of the data,46 esti- on creating conceptual frameworks or theories through mated for scheduling purposes between 15 and 25 partic- building inductive analysis from the data.’ Through this ipants.36 47 48 At the end of the interview, each participant study design, the methodological flexibility originally was provided with a supermarket gift card with a value of proposed by Glaser and Strauss37 is maintained as the US$25. 2 Leyva-­Moral JM, et al. BMJ Global Health 2021;6:e006772. doi:10.1136/bmjgh-2021-006772 BMJ Global Health Data collection were completed after each session to summarise discus- Interviews were conducted from September 2018 to May sions, identify potential areas for clarification, note 2019 by experienced qualitative researchers (JML-­ M, congruences and incongruences with other interviews BKL-­E) in a secure private location of the hospital. At the and inform sampling. Transcripts were independently beginning of each interview, participants were provided reviewed multiple times by the researchers (BKL-­ E, detailed information about the study and questions were JML-­M) to become familiar with the content prior to answered prior to the interviewer obtaining the written coding. Data analysis involved open, axial and selective informed consent. Then, demographic information was coding as phrases, expressions and words that denoted collected during a short conversation prior to moving into specific content were assigned a descriptive code.50 the interview. Data were collected in Spanish through an Through a process of continuous critical reflection, the unstructured interview to explore the meaning of ART, 106 initial codes were organised by researchers (BKL-­E, health system experiences, relationships with healthcare JML-­M, MPA-­G, PAP) into 13 subcategories and grouped professionals, self-­care practices, adherence weaknesses into four categories with an interpretative meaning.58 and strengths, and challenging experiences related to No deviant cases were observed. Memos captured impor- adherence. tant information for discussion, questions and reflection Typical for a grounded theory study,49 50 whether as the codes and categories emerged from the data, classic,46 Straussian51 or constructivist36 approach, the including properties and dimensions.59 With constant unstructured interview52 begins with a single grand tour comparative analysis and collaborative conversation,60 question53—‘Tell me about your experience with taking the research team (BKL-­E, JML-­M, KLVL, MPA-­G, PAP) your antiretroviral medication each day.’ From this single developed a deep understanding about the relationships question, participants described their experience. Brief between the categories. Finally, a clear core category field notes were collected to note potential areas for addi- emerged to explain the phenomenon with theoretical tional inquiry or requiring clarification. The interviews, sensitivity.61 62 lasting 45–90 min (most about 70 min), were digitally The credibility, originality, resonance and useful- recorded and immediately transcribed for continuous ness34 of the results were demonstrated through open- analysis by the research team.35 54 Theoretical saturation ness, immediate transcription, memoing, constant was achieved with 18 interviews, and no interviews were comparative analysis, theoretical sampling, saturation repeated. The COREQ55 checklist, Consolidated Criteria and sensitivity, and a substantive theory.63 64 Two experi- for Reporting Qualitative Studies, was used to guide the enced qualitative researchers with diverse backgrounds reporting of this process (online supplemental table 1). interviewed the participants to limit bias, while record- The participants were informed about the voluntary ings, transcripts and memos established an audit trail. nature of their participation, their ability to withdraw Member checking was completed at the end of each from the study at any time without providing a reason, interview through a brief discussion with participants to the confidentiality of their participation, and the deiden- confirm the accuracy of the interpretation captured from tification of data for reporting. Once all questions were their interview. Verbatims were translated into English answered, each participant was asked to sign an informed and verified by two bilingual research team members, consent. Given the sensitivity of the research topic, partic- applying a previously reported process,65 to insure the ipants were instructed during the informed consent translated verbatims retained not only syntax but also the process to report any feelings of emotional distress original meaning. The results were verified with external during the interview. Although there were no unantici- consultation, with minor refinements for two category pated situations, the interviewer was prepared to contact names. The core category was collectively noted to define the healthcare team, if necessary, to protect participant the central meaning without further recommendations. safety within the context of the confidentiality agree- ment.56 Physical study documents were secured external to the HIV unit while digital files were maintained on a Reflexivity password-­protected laptop. No data that could result in For a grounded theory to be methodologically rigorous66 participant identification was collected during the inter- the two interviewers and the other researchers engaged view. A pseudonym was chosen by each participant to in the data analysis need to be reflexive67 as categories facilitate their ability to learn how their data contributed emerge from the data68 rather than preconceptions to the grounded theory. forced into the data. In this regard, the research team (multidisciplinary, multilingual, multicultural and multi- Data analysis national) recognised their interactions with participants The data were analysed concurrently throughout data and discussions with colleagues can influence the study collection using constant comparative analysis34 with the​ design, data collection and analysis, and interpretation as Atlas.​ti (V.8) software. This analytical process resulted written results.69 The team maintained an open dialogue in each interpretation and associated finding being with ample opportunity for self-­reflection. Open commu- compared with the existing findings emerging from the nication and reflexive practices resulted in the team constant comparative analysis.57 Interview debriefings achieving a deep understanding of the data. Leyva-­Moral JM, et al. BMJ Global Health 2021;6:e006772. doi:10.1136/bmjgh-2021-006772 3 BMJ Global Health RESULTS opportunity to consolidate ART adherence and remain In total, 18 participants living with HIV were interviewed, vigilant in protecting their family. including 11 men, 7 women and a transgender woman, between the ages of 18 and 59 years. The participants He [my husband] also knows that he has to protect him- self, although I remember a doctor telling us both that if I reported actively taking ART and acquiring HIV through was undetectable, I couldn't hurt him. But I don't want to the sexual route. Most of the participants reported an risk it. I do not dare. It’s been 4 years now and we have al- undetectable viral load (12) with four detectable and ways taken care of ourselves. Although he wanted to make two uncertain. Sociodemographic characteristics for the it normal [condomless] because the doctor said so, but I sample are presented in table 1. keep saying no (Catherine). The core category ‘staying alive’ represents adherence I feel relieved, happy, because I am taking my treatment. through experiential learning as PLHIV develop strat- Thanks to this NGO I had my son and I hope that my son egies to achieve an equilibrium in living, socially and does not have this disease, they are still studying him. I'm healthy, despite their HIV infection. Staying alive emerges dying to think that I might have infected him (Margarita). from four interconnected categories, including: (1) over- coming barriers; (2) working with the healthcare team; The health system presents a myriad of barriers that (3) tailoring self-­care strategies and (4) appreciating must be overcome to achieve adherence. This acceptance antiretrovirals. As a substantive theory underpinning the is characterised by PLHIV simply obeying, or submitting, experience of PLHIV with ART adherence, staying alive to the norms, including consciously resigning them- necessitates PLHIV overcoming a series of personal prob- selves to the consequences of norms. Wait times, privacy, lems and external barriers to care for themselves. Largely anonymity, visit length and bureaucracy are all barriers focused on ART adherence, survival needs to be balanced limiting access to care and interfering with activities of with maintaining a meaningful quality of life. daily living, such as working and caring for children. [Adherence] It is like my pass to be able to survive day by I think that attention must be faster. The procedures are day, because if I do not take it [the pills] I feel that I am very cumbersome. We have responsibilities and asking per- going to decline and I would not continue my life, at least mission from a company [employer] for several days affects as I had planned, since my defenses are going to fall, it can you (Antonio). affect me and I can die (Oscar). A major concern for PLHIV is privacy violations are Rather than simply obeying medical advice, adherence uncontrollable. They become ‘visible’ in the waiting room is the personal understanding about what is happening, clearly identified as ‘infectiología’ (name of the infection realising there is an effective treatment and access to area in Spanish) in the same vicinity as other medical health and social resources. PLHIV seek autonomy specialties when seeking care. Although they want to despite their dependence on the health system. In this keep their diagnosis hidden, PLHIV believe anyone who regard, healthcare professionals maintain a critical role sees them waiting in this area will be suspicious about in helping PLHIV understand their disease, access their their diagnosis. This generates discomfort which they medications, and manage their new reality through are forced to accept as there is no other option to stay personalised care with a humanised approach. Once the alive. These medical visits are essential because their ART personal problems and external barriers are overcome prescriptions are provided at this time. and trusting relationships with healthcare professionals I always say to my wife, what are they [the other patients are consolidated, self-­care strategies emerge as effective waiting in the room] going to think? Of course, they will ART to manage the HIV infection as a chronic disease. know that I have HIV if I come to the door where they say Figure 1 is the visual interpretation of the theory to infectious diseases […] If you meet someone you know and explain how PLHIV are staying alive with ART. ask you what you are doing here in infectious diseases, you have three or four options to say: I have tuberculosis, I have a virus, a parasite, or HIV and any of those are frowned Overcoming barriers upon. The name [infectiology] is wrong for me (Jorge). Establishing a favourable relationship with ART requires PLHIV to face the HIV diagnosis, accept the changes Another concern of PLHIV is the excessive number to their lives, and learn to live with the feelings of guilt of students, including interns and residents, entering and regret. For the most part, these feelings are based and exiting the ‘infectiología’ area during their appoint- on the discriminatory and stigmatising experiences they ments. This is an additional barrier related to balancing reported following diagnosis. Consequently, they fear privacy concerns with the required monitoring for medi- infecting their partners, a fact that on many occasions cation distribution. PLHIV feel uncomfortable and results in celibacy or feeling obligated to reveal their vulnerable when revealing confidential information with serostatus before beginning a new relationship. Similarly, so many bystanders. The environment and policies place PLHIV with children or expected to have them, struggle them in a difficult position where they often submit to with the possibility of their children becoming infected. make things simple. They emphasise; however, they really Ultimately, managing their fear and guilt results in an dislike this disrespect of their privacy. 4 Leyva-­Moral JM, et al. BMJ Global Health 2021;6:e006772. doi:10.1136/bmjgh-2021-006772 Table 1 Participant characteristics Viral Name (Pseudonym) Age Sex Relationship status Year of diagnosis Transmission route Education Profession Load Sexuality Antonio 36 Male Single 2015 Sexual Secondary Industry Undetectable Heterosexual Carlos 42 Male Single 2014 Sexual College Commercial Does not know Homosexual Caterine 38 Female Cohabiting 2006 Sexual Elementary Grocery Undetectable Heterosexual Flor 59 Female Cohabiting 2016 Sexual Secondary Housewife Undetectable Heterosexual Florence 44 Female Single 2015 Sexual Secondary Housewife Undetectable Heterosexual Gustavo 35 Male Single 2015 Sexual Secondary Construction Detectable Heterosexual Jorge 24 Male Cohabiting 2016 Sexual College Business Undetectable Heterosexual Juan 49 Male Single 2015 Sexual Secondary Cook Does not know Bisexual Margarita 22 Female Cohabiting 2016 Sexual Elementary Housewife Undetectable Heterosexual Leyva-­Moral JM, et al. BMJ Global Health 2021;6:e006772. doi:10.1136/bmjgh-2021-006772 Michael 35 Male Cohabiting 2014 Sexual Secondary Construction Undetectable Heterosexual Micky 33 Male Single 2017 Sexual Secondary Cook Undetectable Homosexual Miguel 23 Male Single 2018 Sexual College Architecture Detectable Homosexual Monica 23 Female Cohabiting 2016 Sexual Secondary Bus Detectable Heterosexual Oscar 18 Male Single 2017 Sexual College Student Undetectable Bisexual Ricardo 27 Male Single 2015 Sexual College Engineer Undetectable Heterosexual Rosen 46 Transgender Single 1993 Sexual College Tourism Detectable NA Tulipan 25 Female Single 2015 Sexual Secondary NA Undetectable Heterosexual Walter 20 Male Cohabiting 2018 Sexual College Student Undetectable Homosexual NA, not available. BMJ Global Health 5 BMJ Global Health taking it, and I'll always be grateful to him because he made me open my eyes (Margarita). [The nurse] told me in a bad mood ‘you are not invincible! I know patients who have done very well and the next day have been bad. So, you must take the medication proper- ly!’. I did it and I'm still here (Ricardo). In addition to physicians and nurses, PLHIV recognise good care is provided by all members of the healthcare team. PLHIV recognise their overall state of health is improved by everyone working together. Several partici- pants noted the important collaborative role of pharma- cists and psychologists in maximising the effectiveness of their care. He [psychologist] is giving me very good recommenda- tions that I am trying to put into practice in my daily life and yes, he is taking good care of me. I am still with the psy- chologist on that subject of anxiety and I am doing much Figure 1 Theoretical representation for ‘Staying alive’ with better (Oscar). antiretroviral adherence. The pharmacist is the one who has given me most information. She does not just give me my medicines, no, she explains everything to me. When the doctor changed … practitioners [referring to students] listen too. I am my medicine because of the resistance I made it shocked ashamed because they [medical records] are private things me a lot because I was taking care of myself a lot, I did not and I do not know them, and they are going to meet other have sex, I took the medicine on time…they explained and people and talk (Walter). reassured me, especially the pharmacist giving me all that information and showing they cared for me. I will never Working with the healthcare team forget that (Miguel). Life attributed to the ART emerges from the central role of healthcare teams, among which 'infectólogos' (infec- Tailoring self-care strategies tious disease physicians in Spanish) and nurses are the Self-­care is experientially learnt by PLHIV with accept- central professionals interacting with PLHIV. In terms ance of the diagnosis and increased familiarity with the of physicians, PLHIV respect their scientific knowledge, treatment. As PLHIV engage in more self-­ care, they as well as their remarkable human gifts. The nurses are become aware of the relationship to living longer and appreciated for their personal proximity, protection and better. Increased trust and better communication with technical knowledge. Participants constantly reiterated the healthcare team results in PLHIV learning how to ‘they treated me well’ to define courtesy, familiarity, avail- change a series of habits, including diet, exercise, alcohol ability, accessibility, decision making, awareness, resolv- consumption, drug intake, sex, and treatment adher- ability and individualisation. PLHIV compare the physi- ence. Thus, PLHIV realise strengthening adherence cians and nurses to ‘angels’ responsible for watching results from their better self-­care. over their lives, a figure of special relevance in practicing Catholic countries. I have to be aware of what the treatment is, do things that do not affect me, deprive myself of some things. If not it If it weren't for them [health care professionals], I would [ART] will not work for me and I will get worse (Miguel). no longer be here. So, I tell him that the staff of doctors, and more than all the nurses and technicians, for me com- On a personal level, self-­care involves protecting them- ing to them is like I feel like a family, they are angels to me selves from situations that endangered them emotionally. (Carlos). This involves developing strategies for secretly taking medications to prevent exposures that can result in Situations that could be considered inadequate care stigma and discrimination. or poor professional conduct are perceived by PLHIV as rough but well intended. PLHIV focus on the comments I prefer to take them [ART] away and so nobody finds out. from the healthcare team as strategies to motivate them Just like when I'm at home, when I'm with my partner, we to achieve health and wellness. What in other circum- wait for people to leave and how we know that we have the stances might result in a complaint, in the case of PLHIV pills in our pockets, we take out the bottle, and that’s it. You know, in case they react badly (Ricardo). is reason for reflection and sincere appreciation. When I got pregnant, I stopped taking the treatment be- Establishing a routine for taking ART at the same cause I thought it would hurt my little boy; I didn't take time requires considerable effort, especially for PLHIV it for a month and the doctor yelled at me angrily ‘you who travel, work long hours or maintain an active social have to take it because that won't hurt the baby!’ and I kept life with alcohol consumption. Despite understanding 6 Leyva-­Moral JM, et al. BMJ Global Health 2021;6:e006772. doi:10.1136/bmjgh-2021-006772 BMJ Global Health how to achieve medication efficacy, PLHIV struggle to work, to be with my friends. I also rest with peace of mind manage the competing demands of living with staying because I take it the moment I go to sleep, thinking and alive. However, they are often willing to make unilateral asking God that I will be better. Also, I think that it cleanses decisions that put their adherence at risk. All participants my blood more, that it kills the virus; in the talks I have had with the nurses they explained to us that if you are pend- acknowledge having missed doses, either by forgetfulness ing your medicine, the opportunity will come to kill all the or consciously for a reason. As they realised there is not viruses (Juan) an immediate effect on the results of their lab tests, they were not too stressed and move on with their life. Finally, the recognition of ART as a life source is accom- panied by a feeling of dependency and submission to Sometimes I have a meeting out there and I don't take it [ART]; I put it off the next day because I know I'm going medications. PLHIV understand their chronic disease to drink. One day only and the next day I will take it again, does not allow many exceptions to the medical manage- otherwise it would put my life in danger (Micky). ment plan. In other words, PLHIV realise their health and their ability to continue living depends on their Engaging in self-­care is managed concurrently with adherence. poor advice from family members, as well as their personal For a while my stomach hurts, it burns, but what am I going beliefs about physical changes and fears of side effects. to do? I have to take it [ART]. It makes me want to vomit, PLHIV may suspect they would have problems, and some but I have to take it by law. I have to drink water to make are convinced that ART will make them feel terrible, due it happen, but despite everything it is a relief because I am to past experiences. However, fear of immune relapse alive (Margarita). or other complications continues to motivate PLHIV to keeping taking their medication. This necessity as well as the potential consequences for failure is reinforced DISCUSSION through conversations with the healthcare team. This study describes how ART is a life source for PLHIV. It [ART] makes me fat and I don't like to see myself like As evidenced by the participant voices, they focus on this. That is what bothers me and I have seen that since ‘staying’ alive’ to continue living. Similarly, researchers I have started taking the pill again, I was getting fat again in other areas of the world with different sociocultural and that bothers me, but I still take it, thanks to the nurse contexts reported PLHIV are adherent to stay alive.23 70 71 who told me that if I wanted to die or be in Intensive Care, In some low/middle-­income countries, however, PLHIV so I would stop taking mediation (Carlos). call ART toxic due to the side effects or exposure as they become visible for discrimination.72 73 Appreciating ART Appreciating antiretrovirals as a life source requires experiential learning rather than When initiating ART therapy, there are a series of side obeying medical orders. PLHIV mature in understanding effects including gastric discomfort, dizziness, weight their infection as a chronic disease with the help of the gain and nightmares. Although feelings emerging during healthcare team and significant people in their lives. the initial phase are often described as intense and diffi- Staying alive requires PLHIV to learn how to manage cult to manage, with time, reflective thinking, individu- barriers to personal wellness such as stigma, prejudice alised care and tailored prescribing protocols, PLHIV and discrimination.74–77 report being able to adapt to the new reality, essential to The relationship between PLHIV and their health- stay alive. care team directly contributes to ART adherence. When PLHIV perceive better treatment, they are more At first, adverse reactions were difficult for me, but little by little they [health care professionals] have taught me that I adherent.78 Good engagement with the healthcare team live with that and I started to overcome it, I already got the results in more effective information exchanges with idea of what I have. This is yes or yes; I have to take them PLHIV.79 Some researchers address the ‘good patients’ (ART) (Ricardo). (obedient, patient, courteous, attentive, intelligent, clean, honesty, gracious) as the most effective in adapting However, memories about these side effects continue to the new lifestyle, adhering to ART and attending to be associated with beliefs constructed by social inter- appointments.80 81 This study found caring relation- actions with others in considering how to continue living ships with the healthcare team, including the authentic with changes in therapy. For PLHIV, the medications presence of nurses, was similar to the other, but older, produce changes in their bodies, which they must accept studies.82 83 However, this finding is not generalisable as as the ‘price to pay’ to stay alive. Still, they feel grateful many healthcare professionals continue to demonstrate to the healthcare team and to science for allowing them a lack of knowledge,84 maintain paternalistic attitudes85 the opportunity to continue living. PLHIV often describe and avoid discussing sexual health.41 Despite 21% of medications as their life source and sometimes relief PLHIV in Peru being denied health services during the from their discomfort beyond the merely biological, tran- last year,86 they have more trust in their healthcare team scending the social and the spiritual. than people with a HIV negative status.82 The effective It [ART] is giving me more desire to live, so I feel better, information exchanges within the context of a trusting I no longer have discomfort, I have more desire even to provider–patient relationship may explain the lack of Leyva-­Moral JM, et al. BMJ Global Health 2021;6:e006772. doi:10.1136/bmjgh-2021-006772 7 BMJ Global Health participant concern about ART medication knowledge in Strengths and limitations this study. To the best of our knowledge, this is the first study to PLHIV try to adhere to ART because they recognise report ART adherence experiences of PLHIV in Latin the medication keeps them alive. As a result, the defini- America using a grounded theory approach. Further- tion of engagement proposed by Higgins et al.87 needs to more, this is the first study to report such experiences be reevaluated in the Peruvian context. Engagement, or from Peru. The research team has extensive experience ‘the desire and capability to actively choose to participate in qualitative methods, including grounded theory, as in care in a way uniquely appropriate to the individual well as previously published studies focused on improving in cooperation with a healthcare provider or institution the lives of Peruvians living with HIV. The research study for the purposes of maximising outcomes or experi- design was rigorous as theoretical sampling facilitated a ences of care’ should also address survival. In this study, diverse sample; the constant comparative analysis resulted the participants choose to engage in self-­care but always in understanding the participant experience rather than with the belief that non-­adherence would result in their inductively positioning the experience in a preconceived premature death. The submission to adherence has been context; and theoretical saturation was achieved. described in other studies as the only way people infected Despite the strengths, there are three limitations with HIV can continue to live.23 88 In addition to adher- for discussion. First, the sample represents a younger ence, this study describes the ways PLHIV engage in self-­ segment of the population principally in the second care activities, including health promotion. Similar to and third decades of life. However, this sample is similar the findings reported by Iribarren et al.89 PLHIV engage to the age profile of an earlier study reported in the in diverse self-­care activities, such as taking medications, region.40 Second, the results should not be generalised modifying activities, altering diet, seeking help, waiting, further than the Peruvian context without similar managing thoughts, changing attitudes and altering cultural and contextual characteristics. In Peru, as in the physical environment. These results are consistent other countries located in the Andean region of South in different groups and contexts such as people living American, the regional culture and developing economy in rural areas,90 and older women living with HIV.91 In context coupled with strong Catholic identity is dissim- general, adherence appears as the social representation ilar to other regions such as Africa and Asia. As such, of staying alive. the results could be informative for the similar sociocul- In addition to staying alive, the social context of living, tural contexts of other countries in the Andean region of such as going to clubs to drink and dance, was important South America. Third, translating interviews can result for PLHIV to connect with friends and meet acquain- in bias due to the adaptation of words and phrases from tances. In this regard, alcohol consumption is reported Spanish to English. As the research team was mostly to impact ART effectiveness and to contribute to missing bilingual and a previously reported strategy was used for doses.92–94 However, participants in this study adapted the translation process, the risk for bias was minimised ART management to plans to consume alcohol or to have but not eliminated. The original quotes to support the a ‘night out on the town’ because they believed mixing categories in Spanish with translations in English are alcohol with ART would produce severe side effects. This provided in online supplemental table 2 for transparency is especially a problem for PLHIV with strong alcohol-­ in reporting. The supplemental table also contains addi- antiretroviral toxicity beliefs.95 96 PLHIV with a history of tional data for each category as a best practice to facilitate intentionally missing ART doses to engage in substance future metasynthesis in ART adherence. abuse (including alcohol) having lower ART adherence Finally, as an important methodological notation, the and poorer treatment outcomes.93 The participants in incorporation of maximum variation sampling could this study, however, reported personalised but cohe- have limited the findings to patterns observed across sive strategies for ‘rescheduling’ rather than missing or participants with significance derived from their hetero- skipping doses to balance their desire to live with the geneity.99 The resulting theory may be broader in scope reality of staying alive. They decided to implement these as a result of the sampling strategy. Future inquiries with tailored strategies thanks to the support of their health- more homogeneous samples resulting from different care team. sampling strategies may provide additional depth to Access to ARTs was a limited factor that interfered with better inform the categories of the current theory. adherence for participants in this study. Previous studies found long lines and difficulty getting appointments were barriers for adherence to treatment.97 98 Although CONCLUSION the data were not consistently observed in this study, Adherence emerges through experiential learning as several participants complained about numerous proce- PLHIV recognised ART as their life source. Adherence dures, as barriers, to schedule a new or reschedule an is not a spontaneous outcome, instead, the surprise of existing appointment. Previous research in this region HIV diagnosis gradually transitions to living with HIV as of Peru found PLHIV were able to access medications a chronic disease. There are essential cognitive processes despite the barriers with the assistance of their health- to assess ART in terms of recognising the benefits and care team.40 implementing self-­care strategies, including overcoming 8 Leyva-­Moral JM, et al. BMJ Global Health 2021;6:e006772. doi:10.1136/bmjgh-2021-006772 BMJ Global Health personal, social and structural barriers related to adher- Ethics approval Ethical committee approval was provided by the Comité de ence. Healthcare professionals need to understand the Ética en Investigación del Hospital Regional Lambayeque (Ethics Committee of the Regional Hospital of Lambayeque) through resolution 0812-­009-­18. challenges encountered by PLHIV as they strive to be Provenance and peer review Not commissioned; externally peer reviewed. adherent with ART. Importantly, PLHIV trying to person- alise strategies to continue living while staying alive. In Data availability statement Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as online supplemental order to maximise adherence, interventions may need to information. This is a qualitative study. As such, the complete transcripts may be tailored for individual situations with effective commu- not be published in a public. However, all data (quotes) relevant to the study are nication and mutual support. Community-­based partic- published in the manuscript or the supplemental information. But, we are prepared to provide additional data upon request such as extended quotes. ipatory research and other qualitative research designs may be helpful for future studies to further understand Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been adherence dynamics as a survival strategy rather than peer-­reviewed. Any opinions or recommendations discussed are solely those compliance with a therapeutic plan. of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content Author affiliations includes any translated material, BMJ does not warrant the accuracy and reliability 1 Grup de Recerca Infermera en Vulnerabilitat i Salut (GRIVIS), Departament of the translations (including but not limited to local regulations, clinical guidelines, d'Infermeria, Universitat Autonoma de Barcelona, Barcelona, Spain terminology, drug names and drug dosages), and is not responsible for any error 2 Qualitative Health Research, Evidence-­Based Health Care South America: A JBI and/or omissions arising from translation and adaptation or otherwise. Affiliated Group, Lima, Peru Open access This is an open access article distributed in accordance with the 3 South American Center for Qualitative Research, Universidad Privada Norbert Creative Commons Attribution Non Commercial (CC BY-­NC 4.0) license, which Wiener, Lima, Peru permits others to distribute, remix, adapt, build upon this work non-­commercially, 4 College of Graduate Health Studies, A.T. Still University, Kirksville, Missouri, USA and license their derivative works on different terms, provided the original work is 5 Facultad de Medicina Humana, Universidad San Martin de Porres, Chiclayo, Peru properly cited, appropriate credit is given, any changes made indicated, and the 6 Department of Research, Saybrook University, Pasadena, California, USA use is non-­commercial. See: http://​creativecommons.​org/​licenses/​by-​nc/​4.​0/. 7 Glaser Center for Grounded Theory, Institute for Research and Theory ORCID iD Methodologies, Poway, California, USA 8 Patrick Albert Palmieri http://​orcid.​org/​0000-​0002-​0765-​0239 Escuela de Enfermería, Universidad Cientifica del Sur, Miraflores, Peru 9 Estrategia Sanitaria de Prevención y Control de VIH-­SIDA, Hospital Regional Lambayeque, Chiclayo, Peru 10 Departamento del Desarrollo de Investigación Básica Clínica, Hospital Regional Lambayeque, Chiclayo, Peru 11 Servicio de Obstetricia, Hospital Regional Lambayeque, Chiclayo, Peru REFERENCES 1 Joint United Nations Programme on HIV/AIDS. Fact sheet 2021: Twitter Juan Manuel Leyva-­Moral @juanleyvamoral, Patrick Albert Palmieri Premiminary UNAIDS 2021 epidemiology estimates, 2021. 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