Clinical knowledge about HIV, cancer, as well as effective and secure treatments for PLWH has primarily resulted from research efforts. These advances have contributed to an aging population facing other chronic conditions like cancer. Thus, the participation of underrepresented minorities and PLWH in CTs is crucial, requiring their engagement and the support of their healthcare providers. The objective of this study was to describe the perception of healthcare professionals regarding PLWH’s understanding and participation of CTs for HIV-related cancers. The results can highlight the barriers for this population to participate in CTs based on the perception of the healthcare professionals.
According to healthcare professionals, the involvement of PLWH in HIV-related CTs can be affected by limited knowledge or awareness about the benefits of their participation in CTs. Similar to the Project Accrue [12], the majority of PLWH, in the opinion of healthcare providers, knew little or nothing about HIV-related cancers and their risk factors, or CTs for HIV-related cancers. This lack of knowledge about CTs could be challenging for cancer-related CTs accrual [8, 12]. Thus it is important to explore the facilitators and barriers to participation in CTs.
The facilitators for PLWH to join HIV-related cancer CTs in PR differed from those reported by Project ACCRUE, where the informants were members of the community advisory board and directors of organizations serving PLWH [12]. In PR, the main facilitators reported by the healthcare professionals were, knowing the risk of HIV-related cancers, CTs conducted at organizations serving PLWH, and that they would receive free treatment. In Project ACCRUE [12], the main facilitators for PLWH to join HIV-related cancer CT were safety information about CTs, information specific to cancer among PLWH/AIDS, and the benefits of the trial. A high level of trust in healthcare professionals was important for strong participation in CTs according to previous studies performed in PR with PLWH and women by Ortiz et al., [13] and Rivera-Díaz et al., [14] respectively. To increase awareness and determining participation in CTs among PLWH thrusting relationships with scientists, and healthcare professionals [15], hearing from individuals who have participated in CTs or written information where important. Whereas in the ACCRUE study [12], hearing from someone who participates in CTs was considered extremely helpful to increase awareness about CTs. These aspects should be considered when promoting and recruiting PLWH to cancer-related CTs.
The principal barriers when considering CTs participation reported by the key informants in the ACCRUE [12] study were similar to those mentioned by participants in PR, i.e., lack of knowledge about CTs in general, fear of the unknown, and distance to the trial site. Additionally, the stigma related to being in a CT for HIV-related cancers and feeling like guinea pigs were identified as barriers for HIV-related cancer CT participation in PR, as reported by the healthcare providers. Through the years stigma and distrust negatively affected the engagement of PLWH in their clinical management and research [16, 17], and this remains a challenge for healthcare providers and researchers.
Unfortunately, most of the healthcare providers who participated in PR didn’t know where to find information about CTs of HIV-related cancers for their patients, differing from the participants from North Carolina [12] who knew that they could find this information at medical centers, hospitals or the internet. This could represent a limitation for the participation of Puerto Rican PLWH in CTs that need further evaluation. It is important to educate healthcare professionals about where they can find information about CTs for HIV-related cancers that they can provide this information to their patients. Moreover, our participants reported that the principal needs of their organizations to raise awareness about HIV-related cancers and CTs are offering training to staff and providing informative materials and educational sessions for their community.
The limitations of this study include its small sample size and the lack of generalizability to the population of healthcare providers that care for PLWH in PR due to its convenience (non-probabilistic) sampling. Nonetheless, to our knowledge, this study was the first to describe healthcare providers’ perception of PLWH about the knowledge and participation of Puerto Rican PLWH about CTs for HIV-related cancers. Given the high burden of cancer and HIV in PR and the low participation of Hispanics in cancer-related CTs including Puerto Ricans, recognizing this information is crucial for advancing care in PLWH in PR. Further research should identify targeted interventions to increase knowledge of PLWH about CTs and their participation in CTs for HIV-related cancers.
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