Introduction
Effective antiretroviral therapy (ART) has dramatically reduced morbidity and mortality associated with HIV infection [
1] and can prevent transmission to sexual partners [
2]. Good adherence to effective treatment should not only improve physical health, but also psychological wellbeing by empowering patients to take an active role in managing their condition [
3]. Modelling studies have shown that if sufficient numbers of people living with HIV (PLWH) are diagnosed and take sustained and effective treatment, new HIV infections could be eradicated within the next two decades [
4]. In 2014, the Joint United Nations Programme on HIV/AIDS (UNAIDS) proposed a target of ending the AIDS epidemic by 2030 [
4]. The report set out three milestones that would need to be achieved by 2020 in order to reach this target: (1) 90% of all people with HIV knowing their HIV status; (2) 90% PLWH who know their diagnosis receiving continuous treatment and (3) 90% of people with diagnosed HIV having viral suppression [
4].
At the end of 2017, globally 75% of PLWH knew their status, 79% of those who knew their diagnosis were on treatment and 81% of those on treatment had viral suppression [
5]. In the UK, the UNAIDS targets had been met [
6,
7]. Despite these successes, delay to treatment uptake and poor adherence to medication continue to pose important challenges. The number of people with diagnosed HIV who were not taking ART was likely to be an underestimate because not everyone who is prescribed ART actually receives or takes it [
8]. Furthermore, although nonadherence is a common cause of treatment failure, it is not synonymous with undetectable viral load. Several studies show that nonadherence to ART remains suboptimal: a meta-analysis of 84 studies across 20 different countries found the mean rate of ART adherence (defined as ≥ 90%) was 62% [
9]. Since rates of adherence tend to decline over time [
10], it is important that barriers to adherence are addressed before viral load becomes detectable.
There is a comprehensive literature on factors influencing adherence to ART. In common with most behaviors, adherence is a product of motivation and ability [
11]. In order to optimize ART uptake and adherence, there is a need to understand why people with HIV may not want or be able to initiate and continue to take ART. One approach is to consider the perceptions (e.g. beliefs about HIV and ART) that may influence motivation together with the practicalities (e.g. capability and resources) influencing the ability to adhere.
The beliefs influencing uptake and adherence can be conceptualized by the Necessity Concerns Framework (NCF). Studies across the UK and the USA show that beliefs about personal necessity for ART and concerns about potential adverse effects predict delay to uptake and nonadherence [
10,
12‐
15]. These studies used the Beliefs about Medicines Questionnaire (BMQ), a valid and reliable method of quantifying adherence related beliefs (Necessity Beliefs and Concerns) using items identified in qualitative studies [
16,
17]. While previous studies have found that the NCF is relevant in minority ethnic groups [
13] it is not clear whether the items in the BMQ capture all of the salient issues in people from black African and black Caribbean communities in the UK. Lower rates of engagement with treatment and care have been observed within these communities when compared to the overall UK population of people living with HIV [
18,
19].
Factors influencing engagement with HIV care have previously been identified in studies conducted in Africa and the Caribbean, as well as with people from black African communities living in the UK. A recent systematic review (n = 59) of studies reporting on factors influencing decision-making among PLWH in Africa identified three groups of challenges: (1) those associated with poverty, stigma and unpredictable life events, (2) challenges relating to the health care system, and (3) self-efficacy and social, financial and practical support [
20]. A systematic review of studies conducted in Latin America and the Caribbean (n = 53) identified several barriers to adherence to ART among PLWH in the Caribbean [
21], including perceptions of HIV providers, alcohol use, a lack of social support for adherence, having children and experiences of side effects [
21].
Studies conducted with people from black African communities living in the UK have identified several barriers to accessing healthcare services including HIV-associated stigma, fear of discrimination, the perception that accessing healthcare was unnecessary in the absence of symptoms and competing priorities (such as housing and employment issues) [
22]. Fewer studies have identified barriers to ART uptake and adherence. A study conducted 20 years ago identified several concerns about ART among black African PLWH living in London including concerns about short and long-term side effects, lack of confidence in ART, distrust of the medical profession and fears of discrimination [
23]. One study found lower attendance in care among black African PLWH who believed that only God can cure HIV; however, religiousness (e.g. attendance at religious services and religious beliefs) was not associated with initiation of ART or subsequent changes in viral load [
24]. The quality of doctor-patient relationships may be an important determinant of adherence to ART: in a study of African migrants in London, some participants felt that their concerns about side effects had not been taken seriously, and had stopped treatment as a result [
25].
Given the lack of current research focusing on perceptual barriers to ART uptake and adherence among black African and black Caribbean PLWH in the UK, the aim of this study was to identify the salient perceptual barriers to ART uptake and adherence in a sample of people of black African and black Caribbean descent living with HIV in London.
Methods
This was a cross-sectional, qualitative, interview-based study. Qualitative methodologies are optimal to examine participants’ views and experiences [
26].
Sampling
Study participants were recruited from specialist HIV outpatient clinics at Homerton University Hospital and King’s College Hospital in London, UK. Patients were eligible if they were ≥ 18 years, had a diagnosis of HIV, were of black African or Caribbean ethnicity, were born in Africa or the Caribbean, had been prescribed ART for ≥ 12 months and were assessed by clinicians as being nonadherent to ART according to 2012 British HIV Association (BHIVA) guidelines [
27]. Purposive sampling was used to reflect a broad range of geographical provenance and stage of HIV infection (asymptomatic vs symptomatic) (Table
1).
Table 1
Sample characteristics (n = 52)
Gender | | |
Female | n (%) | 35 (60) |
Age | | |
Years | Median (IQR) | 44 (37–49) |
Region of birth | | |
West Africa | n (%) | 23 (44) |
East Africa | n (%) | 17 (33) |
Other Africa | n (%) | 2 (4) |
Caribbean | n (%) | 10 (19) |
Employment | | |
Professional | n (%) | 8 (15) |
Manual | n (%) | 5 (10) |
Unemployed | n (%) | 37 (71) |
Student | n (%) | 2 (4) |
Symptomatic statusa | | |
Symptomatic | n (%) | 28 (53) |
Asymptomatic | n (%) | 24 (46) |
Years since HIV diagnosis | Median (IQR) | 9 (3–12) |
Years since treatment start | Median (IQR) | 6 (3–9) |
Recruitment
Potential participants were informed about the study by their HIV clinicians and introduced to study researchers during routine visits. Consistent with the main study aim, patients were told that the purpose of the study was to understand their perceptions and experiences of ART. Written informed consent was obtained. Approval for this study was granted by the City and East London Research Ethics Committee (11/LO/0970). Participants were reimbursed £20 for their time and expenses.
Data Collection
Data were collected through in-depth, individual face-to-face interviews conducted in clinical settings by experienced qualitative researchers (EG, JSp). Interview guides were semi-structured, consisting of open-ended questions and prompts to explore participants’ experiences of ART, including what taking treatment meant to the participant and its importance in their life, how they took treatment, and whether they had concerns about taking ART (and conversely not taking it). Demographic characteristics were obtained by a self-report questionnaire.
Data Analysis
An independent service transcribed each recording verbatim, which was then reviewed for quality by the Researcher who conducted the interview (EG or JSp). Data were analyzed using framework analysis [
28]. This method was chosen because it allows for the inductive exploration of patients’ accounts while also enabling the exploration of pre-defined theory [
28]. Our analysis was guided by the Necessity Concerns Framework [
16]. Each transcript was read whilst listening to the recording. Two researchers (EG and JSp) initially developed a framework of key issues and themes. This framework was used to code a further subset of interviews and was refined through discussion. A comprehensive data chart was then constructed by extracting segments of data from the transcripts and arranging these in a matrix according to emerging themes. The corpus of extracts was managed using NVivo 10.0.
Discussion
This study identified perceptual barriers to ART in people of African and Caribbean heritage living in the UK. Consistent with studies conducted across long-term conditions [
29], these barriers could be grouped into two categories—doubts about the necessity for ART and concerns about adverse effects. The findings are consistent with an extended common-sense model of self-regulation [
11], which proposes that although the behaviors that patients adopt to cope with their illness are often at odds with medical advice, they make sense when viewed in the light of patients’ beliefs about their illness and treatment. Understanding patients’ common-sense perspectives of their condition and treatment is an important first step in the development of strategies to increase adherence.
Five of the beliefs identified represented doubts about the necessity for ART. The perception that treatment is not necessary in the absence of symptoms and a preference for non-pharmacological methods of controlling HIV were consistent with those identified in a previous study conducted with men who have sex with men (MSM) who declined a clinically indicated recommendation to initiate ART [
17]. The belief that faith in God can cure HIV was previously identified in a study of newly diagnosed black African men and women receiving treatment for HIV in London, where over a third of frequent church attenders believed that HIV could be cured by faith in God [
24]. Other beliefs identified in the current study which may influence patients’ perceptions of their personal necessity for ART include patients’ doubts about the validity of their HIV diagnosis and a fatalistic view of HIV as an incurable, untreatable disease.
Five of the themes identified in this study related to patients’ concerns about ART. In common with previous studies [
10,
14,
17], many patients had concerns about side effects, potential long-term effects due to toxicity and a physical repulsion to ART. Fears of discrimination leading to the need to conceal one’s HIV status from others have been previously documented among people from black African communities in Europe [
30‐
32], and HIV stigma has been associated with lower adherence [
33]. An additional concern identified in this study was a lack of time between the diagnosis of HIV and the recommendation to initiate ART. Many people reported being overwhelmed by their simultaneous diagnosis of HIV and committing to life-long treatment. In this context, patients felt that they did not have sufficient time to articulate their concerns about ART before initiating treatment. This is an important consideration given that late diagnosis (CD4 count < 350 cells/mm
3) is common among people from black African and black Caribbean communities in the UK [
27,
34] meaning that a significant proportion of people in these populations are recommended immediate initiation of ART. Importantly, UK and international HIV treatment guidelines now recommend that patients should start ART as soon as possible after diagnosis, regardless of their CD4 count, so prescribing practices will need to consider the patient’s preparedness to ensure a successful treatment initiation [
1]. Evidence that people who have strong concerns about ART at the time of a treatment recommendation are more likely to decline treatment or to be nonadherent 12 months later highlights the need to elicit and address concerns about ART at this stage of the care pathway [
10]. PLWH in this study described being unable to take in or recall the information that they were given in this context, demonstrating the need for tailored interventions and support with appropriate information resources.
These findings show the importance of understanding patients’ beliefs about HIV and ART in order to ensure that the rationale for ART can be communicated in a way that makes sense to the individual and which does not conflict with their existing beliefs. Most of the themes identified in this study are present in the Beliefs about Medicines Questionnaire (BMQ-ART) [
10,
16], which can be used to elicit beliefs about ART. Cognitive behavioral techniques may be useful to explore and challenge unhelpful or inaccurate beliefs. Patients’ doubts about their personal necessity for ART may be addressed by presenting the medical rationale for ART in a way that addresses or aligns with a patient’s common sense view. Concerns about side effects may be addressed during consultations by routinely discussing unwanted effects that they may be experiencing, providing relevant pharmaceutical treatment and advice that is tailored and appropriate to the individual. Fears about potential unwanted and adverse effects may be addressed by exploring the potential benefits of ART with the patient and weighing this up against the likelihood of short and long-term unwanted effects. In this study, many patients were concerned that their HIV status would be revealed to others by the conspicuously large size and vivid color of their ART tablets. It is possible that generic medicines, which are less distinguishable in their appearance, may help address these concerns.
The findings of this study should be interpreted in the light of its limitations. This was a cross sectional study and although patients were asked about different points in their treatment journey, they were not followed over time, therefore we were unable to determine which beliefs were more prevalent at each timepoint (diagnosis, recommendation of treatment and ongoing adherence). While it is possible that some patients may not have been forthcoming in disclosing nonadherence, the range of beliefs elicited suggests that patients felt able to discuss the issues pertinent to them. The use of qualitative methods was appropriate to examine beliefs about ART in previously under-researched groups, however it was not possible to determine the strength the beliefs identified using this approach. Further studies using quantitative methods are required to determine how strongly these beliefs are held and whether they differ between cultural groups. Since the interviews were conducted there have been significant developments in research and treatment which may impact on patients’ beliefs about ART and treatment decisions. Following robust evidence that individuals with an undetectable viral load on ART are not able to transmit HIV to others [
2] a test and treat approach where all people diagnosed with HIV are recommended to start ART as soon as possible has been adopted [
35]. This has led to initiatives to help individuals to initiate ART as close as possible to receiving their diagnosis. Furthermore, since these interviews were conducted there has been the development of newer
fixed dose, single tablet regimens, and generic medicines consisting of smaller, more discreet pills tablets which may reduce concerns about disclosure of HIV through ART.
Acknowledgements
This manuscript presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Reference Number RP-PG-0109-10047). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The study sponsor is Brighton and Sussex University Hospitals NHS Trust. We thank our colleagues from the SUPA Programme Management Group (PMG) who provided insight and expertise that greatly assisted the study design and development: Lucy J. Campbell, Trudie Chalder, Simon Collins, Scott Harfield, Kathryn King, Heather Leake Date, Paul McCrone, Susan Michie, Iris Mosweu, Mark Nelson, Nicky Perry, Caroline Sabin, Winnie Sseruma, and Sarah Walker. We dedicate this paper to our PMG member, colleague and friend, Professor Martin Fisher, who sadly passed away in April 2015. We also thank all the participants who provided their time and shared their experiences so openly. We are grateful to the staff at Homerton University Hospitals and King’s College Hospital, including Principal Investigators Jane Anderson and Frank Post, for their continued support.
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