The association between ethnicity, stigma, beliefs about medicines and adherence in people living with HIV in a rural area in Indonesia

More than 36 million people who are infected with the human immunodeficiency virus (HIV) worldwide require antiretroviral therapy (ART) to reduce mortality and the number of new HIV infections [1]. ART is a lifetime medication and adherence to treatment is necessary to be effective [2]. Based on a definition by the World Health Organization (WHO), we understand adherence to be the extent to which a person’s behavior in taking medication corresponds with agreed recommendations from a health care provider [3]. Stigma, family responsibilities, and problems with schedule and routine have been recognized as barriers to adherence [4].

Stigma is understood as a society’s attitude in disgracing a person or group [5]. Feeling stigmatized is very common in people living with HIV (PLHIV). PLHIV can notice the stigma resulting in marginalizing behavior towards the PLHIV [6]. It has been shown that stigmatized PLHIV were less able to manage their disease [7]. Previous studies have also shown that stigma was a significant predictor for a lower level of ART adherence in developing and developed countries [8].

Beliefs about Medicines is a concept of cognitive representation of medicines which has been introduced by Horne et al. [9]. They developed a questionnaire to quantify people’s beliefs of the necessity of taking medications versus concerns about adverse effects. In particular, having concerns about adverse effects and not being convinced of the necessity of the medicines have been found to be associated with non-adherence to ART [10]. Providing information and communicating about the complexity of ART and possible adverse effects may improve adherence [11].

Papua is the easternmost island of Indonesia. In the province of Papua, the majority of the population are indigenous Papuans. Ethnic non-Papuans are migrants from other Indonesian islands, mostly to seek employment. Indonesia is one of Asia’s countries with the fastest growing rate of HIV infections according to the Indonesian Ministry of Health and WHO. The prevalence of HIV infections in the province of Papua is 2.4% which is 24 times higher than the national rate in Indonesia. Of the 25.000 people living with acquired immune deficiency syndrome (AIDS) in Papua [12], less than 6000 PLHIV are on ART [13]. The main mode of transmission is through unprotected sex between heterosexuals [12]. In contrast to other areas in Indonesia, most of the inhabitants of Papua are Christians.

In 2014, the Indonesian government set the strategic target to have 80% of PLHIV covered by ART over 5 years [14]. This may effectively decrease the epidemic. Maintaining adherence to ART has been regarded as a major component to achieve this goal. A number of studies have investigated the level of ART adherence in Indonesia, but so far, these merely covered urban cities in Indonesia with a different sociodemographic and epidemiological context to Papua [15, 16]. Only one Indonesian study explored the effect of stigma, again in an urban population not using a validated scale to assess stigma [16]. As far as we are aware, beliefs about medicines have not been studied systematically in Indonesia. Understanding which factors are associated with low medication adherence is the base to develop interventions to improve treatment of HIV in rural areas like Papua [17].

This study aimed to investigate the association between stigma, beliefs about medicines, sociodemographic characteristics including ethnicity and adherence in people living with HIV in Papua, Indonesia.

This cross-sectional study showed that based on self-reporting, more than one-third of PLHIV in Papua, Indonesia were non-adherent. This was lower than in another Indonesian study performed in an urban area [16], but results are difficult to compare because of differences in methods and instruments used. In line with previous studies, the main reasons for non-adherence were forgetfulness, being careless about taking ART, and experiencing adverse effects [25]. Ethnicity and experiencing stigma were significantly associated with non-adherence.

Strength and Limitation.

This was the first study to examine ART adherence in a predominantly heterosexual group of PLHIV living in rural Indonesia where data is scarce. We recruited participants when they came to pick up their medication, in one region in two hospitals in Indonesia with about 10 years of experience to care for HIV patients. Our data may not be generalizable to other settings and regions. For practical reasons, we used hospital health care professionals to recruit patients. We assured patients that participation was voluntary, but some patients may have felt obliged to participate. We used questionnaires and achieved the sample size needed. The study also presents some caveats that need to be discussed. We chose self-reporting to assess adherence. Giving socially desirable answers and recall-bias are among the disadvantages of this method [26]. It was outside the scope of this cross-sectional study to use other methods. The two study hospitals used paper-based medical records and there were insufficient data available to calculate adherence using for example refill rates. Previous studies suggest that in PLHIV, self-reporting is a suitable method [27]. We used the MARS questionnaire that has been developed and validated in schizophrenia patients [18] and the use in PLHIV so far was limited [28]. Therefore, a cut-off point for non-adherence has not been defined previously. In our study, PLHIV had to achieve a score of at least 8 out of 10 to be adherent. This is relatively high compared to studies in mental health. We chose this cut-off after using sensitivity analysis. This cut-off point is acceptable to be used since there is small difference between using 80 and 90% adherence due to virological failure [29]. Finally, the available data were insufficient to investigate the association between adherence and clinical proxy outcomes such as CD₄ counts or viral load. In our setting, those outcomes are infrequently assessed because of lack of resources.

Ethnic group was found to be associated with adherence. Being Papuan increased the likelihood of being non-adherent. One of the reasons for this could be the difficulties in communication between health professionals and PLHIV. Most of the health professionals are non-Papuans and therefore do not speak the local language. This is consistent with another study which revealed that miscommunication between PLHIV and health providers decreased the satisfaction with treatment due to lack of psychological support from health providers [30]. It also caused emotional stress and feeling of discomfort due to loss of self-confidence [31]. The most recognized complaints of PLHIV about physicians are related to communication, not clinical competencies [30]. More work is needed to investigate reasons for non-adherence in Papuans. Our findings highlight the importance to investigate the impact of ethnicity on health care in Indonesia which has 300 ethnic groups, in other regions with a similar mix of ethnicities.

The second result of this study found that stigma, as assessed by the HIV stigma scale, was a significant factor to diminish adherence for PLHIV [8]. Only one of the HIV stigma subscales, feeling more distant, was associated with non-adherence whereas blame and discrimination were not significant. Experiencing stigma could lead to fear to lose one’s companion, and this may result in avoiding treatment hence non-adherence [22]. PLHIV may try to isolate themselves from others in an attempt to protect themselves as a way to cope with the stress of having an HIV infection [32].

In contrast to other studies, the adherent and the non-adherent group were similar in their responses on the BMQ [10]. They perceived a relatively high necessity for ART, but also relatively high concerns and worries about overuse and harmful effects. The decision to take ART may not be based on the ratio of risk and benefit of ART alone, but other factors such as stigma were also important. We also found that the difference between the necessity and concern scores were positive for both groups. It means PLHIV were more positive about their medication than they feared to experience adverse effects.

Our results have practical implications for health providers. The first step should be to address communication barriers between health providers and Papuans. Good communication skills may be essential to achieve this. More Papuan social workers from religious institutions may help Papuan PLHIV to solve the miscommunication issues. Overall, more work is needed to disentangle the reasons of why Papuans are more likely to be non-adherent.

Distancing, one type of stigma also needs to be addressed. Clinical strategies may be less successful without changing behavior associated with stigma in society. Awareness about existing stigma may help health professionals to understand patients. Addressing non-adherence may need a tailored intervention based on PLHIV’s needs. Ultimately, health providers are recommended to be active not only to discuss possible adverse effects but also to talk about stigma-related issues with PLHIV. Collaboration between health providers and social workers may encourage the patient’s family to be active in reducing distance by providing more information about HIV. Psychological consultations for PLHIV to learn accepting their HIV status should also be available. Such interventions may lead to increased self-esteem of stigmatized PLHIV to not isolate themselves and actively visit health centers without hesitation.

In conclusion, self-reported adherence was relatively low in PLHIV in Papua, Indonesia. Ethnicity of being Papuan, and feeling distant from others because of their HIV status were associated with non–adherence. Targeted interventions should be developed to improve adherence in this PLHIV group.