https://orcid.org/0000-0001-9487-7433
ABSTRACT
Long-acting injectable antiretroviral therapy (LAI-ART) can offer people living with HIV (PLWH) a promising alternative to daily oral therapy. This article highlights the issues, challenges and conditions related to introducing LAI-ART into the social lives of PLWH and HIV-care practices in Senegal. Semi-structured interviews were conducted with 42 PLWH in two hospital care units in Dakar and with 13 healthcare providers and 6 peer educators. Interviews were transcribed, thematically coded and analysed using a cross-sectional approach. We found three key issues. First, simplifying living with HIV: PLWH respondents perceive LAI-ART as an opportunity to ease the burden associated with taking tablets. This enthusiasm may however be qualified by an ambivalent relationship with injections and is subject to certain conditions. Second, certain constraints linked to the medicalisation of care are to be anticipated, including the obligation to go to the hospital every two months for injections. These findings foreshadow the new management work for medical follow-up expected to fall on PLWH and caregivers. Third, the challenges of introducing LAI-ART in Senegal are to ensure adequate organisation of care and supply and sustainability of the program. These results clarify how to implement programs to introduce LAI-ART into real life in the West African context.
Introduction
Clinical trials have shown the efficacy of a long-acting injectable antiretroviral therapy (LAI-ART) administered every four to eight weeks for people living with HIV (PLWH) with an undetectable viral load (Margolis et al., Citation2017; Overton et al., Citation2020). Studies conducted on PLWH receiving LAI-ART in clinical trials attest to the high acceptability of these treatments (Kerrigan et al., Citation2018; Murray et al., Citation2018). LAI-ART would help alleviate the challenges related to daily adherence with an oral treatment (Mantsios et al., Citation2020; Sued et al., Citation2022). Although the results of studies conducted outside of clinical trials vary greatly, they confirm this potential for simplification (Carillon et al., Citation2020; Dandachi et al., Citation2021). These advantages and the feasibility of these therapies are also shared by healthcare providers involved in the clinical trials, despite any obstacles identified (Mantsios et al., Citation2021). Thus, LAI-ART would be an opportunity for improving individual health and the broader trend in HIV transmission (Bland & Crowley, Citation2018). However, these results are from studies conducted in the Global North. Studies carried out in sub-Saharan Africa remain rare.
West and Central African countries are broadly affected by the HIV epidemic (over 12% of the world's PLWH). Moreover, many challenges persist there (UNAIDS, Citation2021a): limited prevention and treatment options, the issue of stigma, adherence, and viral suppression. In this context, LAI-ART could provide genuine opportunities. Nevertheless, the organizational, logistical, and clinical challenges of implementing LAI-ART are numerous (Chandiwana et al., Citation2021).
Therefore, an exploratory study was conducted in Senegal to determine the conditions for the acceptability of these therapies and the feasibility of their implementation. This article highlights the issues, challenges, and conditions related to introducing LAI-ART into the social lives of PLWH and HIV-care practices in Senegal, as seen from the perspective of the individuals concerned.
Material and methods
The HIV epidemic in Senegal is concentrated with a prevalence of 0.3% in the general population and 27% among men who have sex with men (MSM). In 2021, of the estimated 33,000 PLWH who know their HIV status in Senegal, 79% are on ART, and among them, 69% have an undetectable viral load (UNAIDS, Citation2021b).
A qualitative study was carried out in 2021–2022 in Dakar in three hospital HIV care units. Semi-structured interviews were conducted with PLWH followed up in two of these care units. Lasting between 30 minutes and 90 minutes, the interviews were conducted in French (Senegal's national language) or Wolof (the lingua franca) in the health facilities, depending on the interviewee's preference. At one of these sites, the study team conducted an observation of these consultations. Interviews were carried out with peer educators and healthcare professionals working in all three HIV care facilities that are national and international reference facilities that provide training for health workers and conduct clinical trials. One of the facilities is specifically dedicated to serving key populations. Nearly 500 patients are followed up in this site, three-quarters of whom are MSM. Approximately 2000 PLWH are followed up in the two other facilities.
To be included, the PLWH must be 18 years or older and on ARV treatment for at least one year. Participants were selected when they came for consultations, according to their diversified socio-demographic profiles in terms of sex, age, education level, and length of time on treatment. We applied the principle of empirical saturation to determine the number of interviewees. Participants were encouraged to describe the trajectory of their lives and care and their daily experience of HIV and to share their preconceived perceptions of injectable treatments. The investigators presented LAI-ART as a new prospect for treatment that is not yet routinely available that would involve two intramuscular injections every two months. Identification of the health professionals sought to demonstrate the diverse range of socio-professional individuals involved in care for PLWH in the study sites. They were contacted through inter-professional networks, followed by the snowball effect. The interviews sought to explore the feasibility of LAI-ART implementation in routine care.
Interviews were recorded, translated, anonymized, and re-transcribed. They were thematically coded, then organized into Excel files and analyzed using an iterative content analysis approach (Patton, Citation2002). The initial cross-sectional thematic analyses were presented to the team for validation. Data were examined using a cross-sectional approach.
Each participant signed an informed consent form before taking part in the study. The study project has obtained ethical and administrative authorization from the National Ethics Committee for Health Research in Senegal.
Results
The results have been organized around three key issues drawn from the cross-sectional analysis of the data.
Characteristics of interviewees
Overall, 42 PLWH participated in this study: 10 women and 32 men (including 20 MSM), age 18–62 years, who have been on ARV treatment for at least 1 year up to 20 years. All participants are clinically stable and take one tablet per day at a set time. Three quarters of live in Dakar or in its suburbs, and their socioeconomic class is middle to lower. Their education levels vary greatly. Half of those who are employed hold jobs in the informal sector.
In addition, 6 peer educators (5 men involved in the care of MSM and 1 woman who works with the general population) and 13 healthcare professionals participated: 1 biologist, 1 nurse, 1 pharmacist, 8 physicians, and 2 social workers. Among them were six men and seven women ranging in age from 30 to 52 years, most of whom had substantial experience working in the field of HIV services.
Simplifying living with HIV
For the PLWH study participants, managing ART on a daily basis has become routine. ARV treatments are seen as allies when confronting the disease. Nevertheless, most participants report feeling weary, mainly because of “having to constantly hide so that people don't know what you are suffering of” (Male, 27 years). As varied as they are, the recounted experiences of ART are all characterized by the task of managing secrecy. For the interviewed PLWH, medicinal tablets are an external tangible sign of the disease. Consequently, discretely managing the use of ART through concealment practices burdens PLWH with daily constraints.
In this context, injectable treatments are unanimously viewed as a win for discretion: they would mean “not having to hide [oneself]” and “not having to hide [the drugs]”. This young woman attests:
If it's a shot, once you get the injection at the hospital, you have nothing else to worry about. No one can guess that you’re getting shots for HIV (…). There’ll be more confidentiality (…). You won't have to justify why you’re taking drugs (…); there won't even be any suspicions!
In addition, taking medication is associated with a mental burden: “thinking about them” and “not forgetting them”. Injectables are thus seen as guaranteeing peace of mind.
Two-thirds of interviewees regard injectables as a solution “just to avoid taking drugs”. The motivation is not so much about getting injections as it is avoiding the constraints related to taking medications daily.
Remedicalization
A biomedical and medicalized response to the issue of adherence
In the healthcare providers’ discourses, injectables are mobilized as a way to regulate, and even resolve, adherence for PLWH. “You’re relaxed (…), one problem is solved (…); if there's a failure, it's virological. You remove the problem of adherence”. Some say they are “relieved” and “reassured” and perceive it as “decreasing their workload.” This optimistic outlook, nevertheless, depends on the regularity of visits to a hospital where the products will be stored and injections will be administered.
Injections: a medical procedure with multiple understandings
Among the interviewees, previous experiences with injections (malaria treatment, for example) are often associated with both pain and recovery. This ambivalence is reflected in their pre-conceived relationship to LAI-ART. Respondents frequently expressed a fear of shots. Caregivers mention some patients’ “horror” or “phobia of shots”. They fear excruciating pain from the intramuscular injections. However, most PLWH put it into perspective, pointing out the temporary discomfort from the pain and the advantage of not having to take tablets. These results suggest a prior favorable benefit-risk ratio regarding injectables and confirms that its mode of administration is not what is sought after but rather its perceived social effects.
In addition, four PLWH mentioned the possible “complications with injections when administered poorly” or cases among their social network or “failed shots” with profound consequences (disability or amputation). One of the physicians calls attention to the possibility of a “blunder”: “giving someone an injection in the sciatic nerve will result in a disability.” The iatrogenic risks are often mentioned with vigilant conviction without generating a form of defiance toward LAI-ART.
Hospital-centrism causing treatment challenges
For the two-thirds of PLWH, follow-up for the infection usually includes a medical consultation every three months and biological exams every six months. Treatment duration lasts three, and up to six, months. However, PLWH may return more often because drugs are not available due to drug stockouts. Some mobilize a relative or peer educator to pick up their treatment. If PLWH must travel in the regions, they can find a stopgap solution in another care facility. Such flexibility is compromised with LAI-ART, which raises concerns among both patients and providers.
One healthcare professional is concerned about the sustainability of gains made in demedicalizing care: “For years we have advocated for demedicalized care. Now, if we require people to return to [a specific] facility, it's contradictory (…); we risk disrupting all that we’ve achieved”. This professional is concerned that any ensuing technicization of care will result in a trade-off that limits human contact with patients.
Some healthcare providers worry about the timing of injections and that their dispensation is strictly assigned to hospitals. These constraints are poorly adapted to the individuals’ mobility and their concerns about going to the hospital as seldom as possible. They compromise access for patients who live in remote areas. Most caregivers see LAI-ART as a risk, leading patients to delay their appointments. For all the PLWH, appointments are a constraint: more appointments mean needing to be more available and paying for more transportation. Some also worry about how to access LAI-ART when they travel. These findings foreshadow the additional tasks related to medical follow-up expected to fall on PLWH and caregivers, with keeping hospital appointments for injections as the major concern.
Adapting the care system
Strengths: expertise and confidence in innovations
The health professionals’ discourses converge toward the recognition of a local experience regarding the integration of new ART in Senegal (Desclaux et al., Citation2002). Healthcare providers affirm their capacity to adapt and a willingness to experiment with LAI-ART and to anticipate patients’ acceptance of the treatment, based on relationships of trust.
The interviewed PLWH profess confidence both in the medical staff and in treatment innovations. Two-thirds of have experienced the efficacy and benefits of simplified treatments. These positive experiences shape their perceptions of treatment innovations associated with well-being. Nevertheless, for the PLWH, the prospect of LAI-ART (re-)introduces the fear of side effects or even of being a “guinea pig”. Therefore, PLWH's initial enthusiasm depends on prior experimentation on others, the physician's approval, and the absence of side effects.
Making care more complex
For healthcare providers, introducing an alternative to tablets in routine care involves a new care circuit ensuring confidentiality, a continuous supply of products, implementation of a consolidated patient alert and reminder system, and the promotion of delivery of hybrid care (injectables and tablets). Moreover, for the majority of PLWH, maintaining their follow-up in their usual care facility with the pre-existing medical team is a pre-requisite for the use of LAI-ART. This prior knowledge helps guarantee trust and confidentiality. These requirements pose an immediate challenge for structuring these two treatment modalities.
This complexification of care reminds healthcare professionals of the need to train medical teams and to consider the communication issues surrounding LAI-ART: finding the appropriate terminology for talking about treatment (to clearly distinguish from a vaccine) and guarding against inaccurate information.
Issues of equity and sustainability
The interviewed caregivers are concerned about possible geographic and medical disparities in access to LAI-ART. Given the medical contraindications, patients will be selected on virological and clinical criteria. While such selection is commonplace, it raises concern. Patients with adherence challenges and a detectable viral load cannot use LAI-ART. In addition, this selection happens in a context of recent standardization of treatment regimens: “With dolutegravir, you can stop applying triage (…). With injectables, we have to perform triage all over again”, worries one female caregiver.
Lastly, the issue of sustainability and, with it, the cost of treatments that would limit their widespread access create necessary conditions for the introduction of LAI-ART. One female caregiver frets:
The national program must be able to take over (…); that is not guaranteed because today they have standardized the treatment for all patients; it isn't expensive, and it works well (…). The program will have a hard time changing that routine.
Discussion
This qualitative exploratory study provides empirical data on the issues and challenges of introducing LAI-ART to treat HIV infection in a West African country. By highlighting three key issues – simplifying living with HIV, remedicalization, and adapting the care system – we are able to identify the pre-requisites and challenges for implementation.
The results consolidate the existing data on the challenges of living day-to-day with ART (Eshun-Wilson et al., Citation2019), especially in the West African context (Coutherut & Desclaux, Citation2014; Taverne et al., Citation2012). They confirm that LAI-ART corresponds to PLWH's need to see their lives simplified (Kerrigan et al., Citation2020) and supports progress toward making the disease invisible, thus reinforcing the analyses of ART as a “technology of invisibilization” (Beckmann, Citation2013; Mattes, Citation2014). LAI-ART would guarantee easing the psychological, logistical, and social burden thus far associated with tablets, decrease the fear of stigma, and thus contribute to improving the quality of life for PLWH (Simoni et al., Citation2021). LAI-ART would potentially solve problems in the social realm (Desclaux & Egrot, Citation2015), feeding the hopes and expectations of PLWH (Alfieri, Citation2021).
However, injections raise forms of ambivalence that, although certainly commonplace (Bierlich, Citation2000), still need to be taken seriously. On the one hand, if the fears associated with injectables can be counter-balanced by their perceived advantages, it suggests potential reluctance when PLWH try out LAI-ART. To be sure, studies conducted in the context of clinical trials only report very rare cases of dropouts, and PLWH mention improvements in side effects over time (Mantsios et al., Citation2020). However, because the relationship to injections depends on sociocultural contexts (Hardon, Citation2015; Reeler, Citation1990), these results from studies conducted in the Global North can hardly be generalized. Also, in the present study, the interests of the PLWH relate to the perceived effects of LAI-ART more than the tool itself. Using LAI-ART will depend on, among other things, striking a balance between simplifying life and the repeated experience of getting the shots. These results confirm the need to transition to experimentation in real life with emphasis on both the long-term and subjective experience of injections. On the other hand, these fears about unsafe injections are reminiscent of the risks of infection and transmission of pathogens with serious consequences (Kotwal, Citation2005; Lachenal, Citation2014), especially in connection with the history of HIV (Pepin, Citation2011). The safety of injections should be a priority in the schemes to introduce injectables both in practice and as a research topic.
The remedicalization (Nguyen et al., Citation2011) of care, taken from the optimistic outlook of the eradication of HIV, takes on a unique resonance in light of the paradigm of demedicalization of HIV care (Decroo et al., Citation2013). The risk is that all efforts deployed to deliver care beyond the hospital walls and to include association actors in the care continuum would be called into question. This finding encourages programs that introduce LAI-ART to include association actors and to adapt their role by supporting their expertise.
Moreover, while biomedicalization helps reduce the obstacles to treatment adherence, it cannot hide problems with keeping appointments and the social and structural inequalities underlying these challenges. In effect, LAI-ART shifts the issue of drug-intake adherence toward ensuring PLWH keep appointments for the injections. This issue, one already affecting tablet intake (Carillon, Citation2011), re-emerges with all the more intensity since LAI-ART requires strict surveillance of PLWH. LAI-ART cannot address the issue of keeping appointments for injections, nor can it eliminate the vulnerabilities that expose individuals to the risk of interrupting their medical follow-up or the structural inequalities of access to care. These findings are a reminder for the need to consider the social determinants of access to care in treatment implementation schemes.
Lastly, the results highlight the significant organizational challenges that echo the views expressed in the literature (Cresswell & Lamorde, Citation2022). The introduction of LAI-ART may force the care system to confront supply and sustainability challenges (David, Citation2019). This finding spurs a consolidation of the care structures’ “innovation readiness” (Van den Hoed et al., Citation2022).
The present study has limitations. The study was conducted in three urban “reference” sites. Some of the mentioned challenges would certainly be exacerbated in a less well equipped or decentralized context. The participating PLWH are getting treatment. The challenges related to the medicalization of care will potentially be amplified tenfold for PLWH who are far from care. Data were collected from patients who had no major problems with adherence. Nevertheless, they highlight the potential advantages of LAI-ART for patients facing adherence challenges. Recruitment of PLWH during their medical consultations and conducting interviews in a healthcare setting generate a social desirability bias, leaving little room for any expression of critical viewpoints.
Conclusion
This exploratory study sheds important light on the challenges and conditions for introducing LAI-ART into the lives of PLWH and into overall HIV care in Senegal. It prompts an understanding of injectables as an opportunity to simplify living with HIV. It encourages vigilance in setting the proper conditions for administering the injections and assessing individuals’ experience of the LAI-ART over the long term. The study also calls for an enabling environment to sustain LAI-ART access programs and to meet the challenges of keeping appointments and supplying products. Lastly, it is a reminder of the need to take the social determinants of treatment access into account and to redefine the overall HIV care strategies by bringing in association actors. These results provide insights on how to deploy programs to introduce LAI-ART into real life in the West African context.
Acknowledgements
We gratefully acknowledge all the participants. The authors acknowledge Sharon Calandra who translated the article.
Disclosure statement
No potential conflict of interest was reported by the author(s).
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References
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