Poor adherence to ART is a well-known problem with implications for patients’ and public health due to the spread of (resistant) HIV [15
]. This study sought to identify the most relevant determinants of adherence through interviews with 61 patients in 4 different health clinics in northern Tanzania anno 2010, six years after the introduction of ART in the region. Our findings indicate that the majority of patients have a basic understanding of the meaning of adherence to medication. The perception of improved health, the desire to live a similar life as non-infected community members, having children and being a good parent were identified as key-adherence motivating factors. Support from friends and family members and the active role of home based care providers were important facilitators of adherence. The use of alcohol, the unavailability of food, stigma, status disclosure concerns, and the clinics dispensing too few pills were identified as potentially important barriers to adherence. These findings suggest avenues for supporting adherence through changes at the individual, interpersonal, community and health care level.
According to behavioral theories, patients’ knowledge about a health behavior forms the basis for their so-called outcome expectancies, and the value attached to these outcomes which shapes people’s attitudes towards the behavior [7
]. In the present study, the majority of patients had adequate basic understanding on adherence in the sense that they are supposed to take pills at the right time and lifelong. However, there was also what we perceived to be a common misunderstanding concerning taking medication and the use of alcohol. Some patients stop taking medication because they believe that one should not drink at all
(not even incidentally and moderately) while on ARV. Hence, since alcohol drinking is part of culture in the study area, many patients are faced with dilemma to either stop drinking alcohol completely and take medication, or stop medication even when they drink a moderate amount of alcohol on a particular occasion. Similar beliefs have also been observed in a study by Sankar (2007), who found that 85% of his African-American respondents strongly believed that ART and alcohol do not go together [17
]. What our study identified was that this belief about alcohol use seems to be, at least in this region, mainly introduced by the health care providers. No doubt their intention was to limit problematic alcohol (i.e., upon inquiry health care providers reported to do this for general health, promotion of safe sex, and to tackle the problem of excessive alcohol use while on ART) while keeping patients on ART, rather than patients not taking the medication when drinking (some) alcohol. However, the practice of prohibiting alcohol use completely when or ARV’s, which for many patients may be unrealistic, seems counterproductive and it is also not required from a pharmacological viewpoint. Hence, this finding suggest that in addition to patients with problematic drinking behavior, health care providers should be the focus of intervention efforts since they can better acknowledge that patients will
consume alcohol, and instead of prohibiting alcohol discuss with patients under what conditions alcohol use is acceptable.
Knowledge and motivations are not only based on information received from others, but also arises from experiences patients have had with the treatment [9
]. With regard to this aspect, patients mentioned improved health after the start of ART as a motivation to continue with ART. However, this same experience also turned out to de-motivate some other patients, since they stopped the use of ART after their health had improved. The latter perception has also been observed in other studies, where patients indicated difficulties in adhering during times of decreased symptoms [18
]. The patients presumably felt less urgency to continue with the medication because the symptoms, which initially prompted them to take their medication, disappeared. It seems that to prevent this problem, it is important that health care providers intervene on the belief that medication is only required or beneficial when symptoms are present. Instead, as some patients indicated in this study, improved health is ideally perceived as a reason to continue the treatment because of its experienced benefits. Although the key difference between patients experiencing improved health as a reason to continue versus discontinue treatment were not identified in this study, a logical explanation seems to be the level of understanding or belief in how the disease and the treatment works i.e., patients’ explanatory model of the disease and treatment, cf., [20
]. Indeed, although all patients knew the basic instructions for medication intake, very few patients in this study displayed understanding of how HIV works, affects the body and how the treatment disrupts that process. Hence, improved understanding of these (long-term) processes may prevent patients to halt treatment when symptoms disappear. Other key motivational beliefs were also identified, namely the need to take care of one’s family and the desire to live like an ordinary person. Identifying these key needs no an individual level, and linking them long-term adherence to these beliefs (in line with Motivation Interviewing and the Self-determination theory [21
], seems to be important to induce high levels of motivation to adhere to ART.
Discrepancies between medical knowledge and patient beliefs were also observed in relation to the power of prayer, since some patients stopped using ART after they had been prayed for as an act of faith. Religion is an important part of life of the people in the study area and there are number of faith healers who claim to have the power to heal diseases including HIV/AIDS. Stopping treatment after prayer has also been observed in other studies [22
] and it seems difficult to challenge such religious beliefs. A possible approach could be to mobilize church leaders, since they might be the most trustworthy source for patients to alter such beliefs (i.e., rather than physicians, nurses or community workers).
Furthermore, and in accordance with the theories discussed [7
], the extent to which patients reported to be successful in adhering depended on whether their efforts were being facilitated or obstructed, and on their self-regulatory skills to cope with such barriers. Factors that facilitated adherence were at the interpersonal level (i.e., practical and emotional social support) [25
], and at the health care level (i.e., home-based care providers). Factors that obstructed adherence were mentioned more often, and resided at the individual and interpersonal level (i.e., lack of food, fear for stigma and disclosure) as well as at the health care level (i.e., lack of privacy at the clinic, and insufficient availability or provision of pills). This form of malpractice, namely providing insufficient pills while stocks were sufficient, was also observed in a previous study by the authors in the same area [26
]. After discussing this with clinics they changed their procedures and offered patients sufficient pills to bridge the time between two visits, including a few extra pills in case the patient could not make it to the clinic at the appointment date. Regarding the barriers at the individual and interpersonal level, these seem more difficult to alter. A lack of food common is common among people in this region. One recommended strategy is that health care providers discuss with patients facing this problem whether they can more strategically ration their food and otherwise take the medication in the absence of food (since first-line treatments in this region do not need to be combined with food). Another strategy is to attempt to reduce the financial burden for patients by lowering visit frequency to the clinic for adherent patients [27
] or linking them with microcredit schemes [28
]. Regarding the interpersonal level, successful, well-conducted stigma-reducing interventions are scarce although a recent review reveals there are several promising programs that can be adopted [29
Side-effects were also reported by many patients as a problem, although the participants in the current study indicated that this did not affect their adherence, which is contrary to findings in many other studies in which side effects were found to hamper adherence e.g., [30
]. This could be explained by the fact that patients in this area had an option to switch to another regimen, or simply by the fact that participants in this study were those patients still retained in treatment (i.e., those with severe side effects are more likely to drop out) [29
]. Hence reported ways of dealing with barriers were changing medication by the health care provider, who should systematically inquire about such issues, and taking the medication until the side-effects resided.
Regarding strategies to improve adherence, our respondents recommended that the clinics should be integrated into the other services provided by the health care institution to maintain discretion. Some patients turned to clinics further away from their homes in order to avoid being recognized when visiting the clinic, which introduces additional barriers to the continued use of care due to the travel distance. Patients also indicated that clinics should provide sufficient pills and they stressed the importance of social support and the reduction of stigma about HIV in the community. Hence, patients perceived the key challenges to adherence to reside in their environment. Although these recommendations are highly valuable, the results of this study also suggest it is key to address behavioral determinants at the individual level: knowledge and misconceptions about the treatment and adherence; motivation to continue ART use despite waning of symptoms; skills and confidence for disclosure, coping with stigma, alcohol use and other barriers to taking ART continuously and life-long.
These findings and patients’ suggestions have broader implications for other HIV care in Tanzanian clinics as well as for future research. In sum, our recommendations for supporting adherence based on this study are, first, to improve counseling by the health care providers [c.f., [32
]. This counseling should focus on providing patients a deeper understanding of how HIV and the treatment works and the responsible use of alcohol (knowledge); appealing to patients’ personally relevant goals achieved through adhering to the treatment (e.g., ability to take care of family) and reducing de-motivating factors (such as dealing with side-effects or promoting disclosure to deal increase a sens of support) [33
]; and dealing with barriers such as a lack of food. Clinic changes recommended are to always provide patients with a more than sufficient amount of pills and to allow patients to keep their HIV status confidential by not creating a separate location for HIV treatment in the clinic. Finally, community support (or at least, a reduction of perceived stigma) and eradicating the belief that prayer can cure HIV could be tackled by combined efforts of community or governmental organizations and religious leaders. Hence, in order to improve adherence and quality of life of patients with HIV, a multi-level health promotion intervention is required [33
]. However, which interventions are most effective and feasible in this setting -also considering the limited time health care professionals have per patient - should be subject to future intervention studies.
This study had several limitations. It is a qualitative study relying on patients self-reports and perception of adherence influences retrospectively. Moreover, socially desirable answers may have occurred. Finally, although there was a relatively large sample size and patients were selected from four clinics, the sample is too small for the results to be generalized to all Tanzanian patients and clinics.