While the impact of health literacy on PWH is frequently discussed, less is known about how health literacy status affects utilization of CHW services among this population. The results of the current analysis indicate health literacy level was significantly associated with receiving coaching from CHWs, specifically that individuals with inadequate health literacy had more coaching encounters with CHWs. Further, individuals with marginal health literacy were significantly more likely to have an HIV primary care visit at 6 months. Individuals receiving transportation coordination, concrete services, coaching, and emotional support had a significantly higher frequency of CHW encounters than individuals who did not receive those services from CHWs. This suggests that these specific patient services (transportation coordination, concrete services, coaching, emotional support) cut across health literacy levels and consistently require more assistance from CHWs in the HIV primary care setting.
Coaching, or “health coaching” is a commonly cited component of CHW work, in which they provide counseling and assist with problem solving to promote self-management for their individuals 23,24. In our study, CHW coaching consisted of help with HIV or non-HIV disease management or services, harm reduction education, HIV disclosure, safer sex, or life skills conversations. A recent systematic review identified 61 studies pertaining to types/characteristics of CHW interventions, 48 of which described CHWs in health education/coaching roles 24. However, the majority of the articles focused on cancer prevention/treatment and cardiovascular disease.24. In the context of diabetes management, CHWs have been particularly effective for individuals with low health literacy, who have significantly more visits with CHWs as compared to those with high health literacy 25. Our study is the first to describe CHW coaching for PWH of varying health literacy levels. Our data show that in an HIV primary care patient population, those with inadequate health literacy had 3.58 higher odds of receiving coaching from a CHW, and had 3.91 more encounters with CHW, as compared to those who did not receive coaching. This suggests that individuals with inadequate health literacy receive more help navigating health care services and HIV-specific disease management, requiring more visits with CHWs than individuals with marginal or adequate health literacy. Our data provide support that CHWs play an important role in the HIV health care team in supporting patients with their care and treatment, as we see no significant differences in rates of viral load suppression or HIV primary care visits at 6 months between health literacy categories in this cohort.
Factors improving retention in care for PWH have been widely studied, and are an area in which CHWs have been effective 15,26. One study reported that among PWH who are racial/ethnic minorities with behavioral health comorbidities, those receiving peer support experienced significantly fewer gaps in HIV primary care 15. Similarly, a systematic review of interventions with PWH as peers found positive effects with regard to linkage to care and retention in care 16. Further, low health literacy can be a barrier for individuals with regard to retention in care 27. However, a study assessing the effect of health literacy on HIV clinical outcomes found that individuals with poor health literacy did not have reduced levels of ART adherence or poor retention 28. Similarly, our data show that individuals with lower health literacy did not have poor retention in care. In fact, individuals with marginal health literacy were significantly more likely to have an HIV primary care visit at 6 months post-intervention, relative to those with adequate health literacy. This suggests services provided by CHWs, such as coaching, may assist with retention in care for individuals with marginal health literacy. However, for PWH with lower health literacy, CHWs may be addressing other priority needs and medical care may be less of a priority.
It is known that PWH have complex and varied needs, both clinical and non-clinical, regardless of health literacy status 29,30. These needs, or social determinants of health (SDOH), encapsulate a wide range of economic, social, and environmental factors 31,32. In a study of 15,964 PWH in the United States, 23% reported at least one SDOH indicator, while 25% indicated 4 or more indicators 30. Further, 31.7% had difficulties with transportation, which is consistent with the 32.5% of our cohort who received transportation coordination from a CHW 30. Our data demonstrate that emotional support was the most commonly reported purpose of CHW encounter. Stigma associated with an HIV diagnosis can have a significant negative effect on mental health, as can unmet needs for social determinants of health, which may explain why 88.2% of our cohort received emotional support from a CHW 33,34. Logistics support, such as making appointment referrals, health care appointment reminders, updating care plans and medical records), was also common in this cohort. PWH often require complex and multi-faceted care, as many have co-occurring mental and substance use disorders 35. Similarly, nearly one third of the individuals in our cohort had a mental health diagnosis or substance use disorder. Consequently, logistical support, such as healthcare navigation and appointment reminders, is a much-needed service. In our cohort, CHWs provided logistical support to nearly half (46.9%) of all individuals, further underlying the importance and utility of this service in HIV primary care. While patient navigators have filled this role in some settings, our study demonstrates that CHWs also assist PWH with these needs.
This study is not without limitation. First, while CHWs can help educate individuals and improve their HIV-related knowledge, this program was not designed to improve overall health literacy. No sites in this study screened for health literacy among CHWs, which could potentially strengthen programs in the future where CHWs interact with individuals of limited health literacy. Second, while the CHW program included training on educating individuals about treatment and how to read and understand lab results, our analysis did not directly measure changes in the client knowledge about HIV disease management or HIV health services. The focus of CHW intervention was to provide education, motivation, and support for treatment adherence which was included as part of coaching. Previous studies of CHW peer intervention have led to increase, but non-significant changes, in HIV knowledge during a 12-month period 15. Future studies should include a knowledge score. Third, the individuals in this study were a convenience sample of those willing to work with a CHW and were enrolled in a non-randomized fashion. As there is no control group, the effect of health literacy on CHW utilization and health outcomes can only be compared among individuals who interacted with CHWs. However, there were no significant differences between individuals who stayed in the study versus those who were lost to follow up regarding demographic characteristics and health literacy. Fourth, this study follows individuals over a 6-month period, which is likely not long enough to truly ascertain the impact of health literacy on utilization of CHW services within this cohort. Lastly, this study includes individuals from ten different clinic locations. While we controlled for clinic location in our regression models, differences in populations and CHW program models across sites may affect the generalizability of these results. Despite the limitations, this paper makes important contributions to the literature. Our results indicated that CHWs can reach populations across the literacy spectrum.