Despite WHO’s UTT, uptake and awareness of treatment guidelines across the various regions of Tanzania has been differential. This qualitative study revealed key barriers and facilitators to HIV care post-UTT in Northern Tanzania - individual factors including low health literacy, misinterpretation of health messages; interpersonal factors including perceived stigma and poor communication with healthcare providers, as well as structural factors such as poverty, facility-related barriers, and unawareness of the government-led UTT policy.
Despite one-on-one HBC counseling, plus mandatory health seminars for new ART initiates and individuals re-engaging in care, there were still major gaps in knowledge. Besides knowing their HIV status and the need for treatment, participants had limited ability to describe either diagnosis or treatment. Studies have shown that higher health literacy is associated with higher retention in care and viral suppression (Kalichman & Rompa 2000; Wawrzyniak et al. 2013). Health literacy seemed to vary by whether participants were never in care or formerly in care. It is plausible that those who previously come in contact with the healthcare system are more knowledgeable about their health than those with limited contact; however, how health literacy in this study participants compare to other PLHIV currently in care was not explored. Nevertheless, all participants consistently reported wanting more information about their health/treatment to increase their HIV health literacy.
Furthermore, misinformation about HIV diagnosis and treatment was prevalent; mostly received through various sources including, friends, family, HBCs, and pre-ART health seminar classes. For example, those never in care expressed it was better not to initiate treatment than to initiate and then discontinue care – a message received from the mandatory health seminar. This may be due to misunderstanding health messages or an unintended consequence of strict adherence messaging. Although some described health seminars as a valuable health source, it remains unclear if participants misunderstood the information or if misinformation occurred due to health staff’s low literacy. Similar findings were reported in a study conducted in Iringa, southern Tanzania, which assessed community HIV/AIDS knowledge and health communication. Understanding HIV/AIDS messaging varied significantly among participants with different levels of education and marital status (Rumisha et al. 2005). Even among those with high comprehension, poor application of HIV/AIDS messages, which could be attributed to culture, illiteracy, and/or poverty, was observed.
We found that the quality of participant-to-healthcare provider interactions were limited and participants expressed a desire to this strengthen communication. Most felt unable or prepared to seek additional information about their health or treatment regimen. Further efforts should assess how to improve healthcare provider engagement with patients to ensure dissemination of clear and accurate health information. Our findings highlight the potential for HBCs to serve a key role in bridging the communication gap between PLHIV and health facility providers. In SSA and other resource-limited settings, there has been limited research conducted on health dissemination messaging and strategies; some publications have targeted the role of internet in health dissemination and access (Edejer 2000; Shiekh 2014), or health information systems (Mutale et al. 2013), with few focused on patient comprehension. A recent systematic review by Schipper and colleagues (2015) assessed dissemination strategies to educate patients about their health and found that consistent patient involvement was critical, including a plan that involved healthcare providers early in the process. Although not comprised of studies in SSA, they showed that early patient engagement was important and systemic dissemination plans involving patients and healthcare providers were instrumental in effective communication.
In this study, we observed that despite government’s efforts, PLHIV had limited awareness of the Test and Treat policy in name. There have been widespread efforts to provide ART to all PLHIV in Tanzania; however, gaps in disseminating this national program remains, particularly for individuals in the rural areas who often have limited access to information and experience high levels of poverty. Those with access to information reported that health information campaigns, HBCs, and radio announcements were helpful in delivering information on the current recommendations for treatment. These modes of communication are common across SSA (Rumisha et al. 2005) and these findings suggest their potential to provide targeted health messaging and outreach to PLHIV who may not be in care or at risk for discontinuing care. This study highlights the need to adapt modes of communication to reach targeted populations that may not have access to health messages delivered through popular channels.
It is important to note that these barriers revealed in this study have long been reported among PLHIV in SSA and in spite of Test and Treat. We observed that socio-structural factors such as poverty – limited access to money for food, transportation, and other basic needs further contribute to individuals not initiating or continuing in care despite universal access to ART. Distance to the clinic and long wait times at the clinics were also reported as barriers to care. These socioeconomic and structural barriers to ART observed in this study suggest that access for the most vulnerable PLHIV hinges on addressing socioeconomic barriers to care. These findings are supported by the extensive body of research in SSA on barriers to care (Connelly 2011; Geng et al. 2010; Ma et al. 2016; Roura et al. 2009) and emerging studies on the use of incentives which have showed some success in encouraging PLHIV to engage in ART (Bassett et al. 2015; McCoy et al. 2017). For example, a study by McCoy (2015) in the same region of Tanzania as the current study, found that short term cash and food assistance improved ART possession, appointment attendance, and reduced loss to follow up.
This study is one of the few studies that explored barriers and facilitators to care in Northern Tanzania post-Test and Treat implementation. The ability to triangulate qualitative results on health literacy with the quantitative assessment allowed for a more robust assessment. Notably, this study elicited perspectives from two key groups of PLHIV – PLHIV never in care and those formerly in care. However, exploring some of these questions among individuals that were in care may have allowed for key comparisons and added to the understanding of how this group differs from those who are in care. Additionally, although our assessment covered all constructs within the socio-ecological framework, we focused on resounding themes within each constructs as emphasized by the participants instead of highlighting all the barriers within each categories, as previously done in other studies.