Experiences and expectations of patients living with HIV on their engagement with care in Western Kenya

PURPOSE: In resource-limited HIV care settings, effective and innovative interventions that respond to the existing challenges along the HIV care continuum are urgently needed to realize the benefits of antiretroviral therapy (ART). Initiating effective ART adherence dialog in an environment that promotes patient engagement in care is key. It is therefore critical to enhance our understanding about how patients living with HIV in these regions conceptualize and experience patient engagement. This study explores HIV patients’ perceptions, experiences and expectations of their engagement in care. MATERIALS AND METHODS: We sampled 86 patients from three Academic Model for Providing Access to Healthcare (AMPATHplus) sites, one urban and two rural. We conducted 24 in-depth interviews and eight focus group discussions in either Swahili or English. Audio recordings of the interviews were transcribed, and then translated into English. We performed content analysis after thematic coding. RESULTS: Patients living with HIV in Kenya desire active engagement with care. However, their engagement was inconsistent and varied depending on the provider. Patients had a sense of how provider’s interpersonal behaviors influenced their level of engagement. These included various aspects of provider–patient communication and relationship dynamics. Patients also highlighted relational boundaries that influenced the level and kind of information they shared with their providers. Aspects of their psychological, social or economic wellbeing were often viewed as personal and not discussed with their clinicians. Patients identified factors that would promote or impede their engagement with care including those related to patients themselves, providers, and the healthcare system. CONCLUSION: Patients living with HIV desired more active engagement in their care. In addition, they desired clinicians to engage in more social behaviors to promote patient engagement. To address existing patient engagement barriers, HIV care systems in the region should apply contextualized patient-centered interventions.