Abstract
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.
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Acknowledgments
The authors would like to thank all the study participants for taking part in the study. We would also like to acknowledge the data entry personnel, data managers, administrative and clerical staff, for enabling the management, interpretation, and publication of these data. We are also grateful to the AMPATH clinical and administrative staff, for their dedication in caring for patients, and their attentiveness in accurately recording their patients’ data. This research was supported in part by a grant to the AMPATH Partnership from the United States Agency for International Development as part of the President’s Emergency Plan for AIDS Relief (PEPFAR) and Lifespan/Tufts/Brown Center for AIDS Research (LTB CFAR NIH/NIAID fund P30AI042853). The contents of this study are the sole responsibility of AMPATH and do not necessarily reflect the views of USAID or the United States Government.
Author contributions
All authors made substantial contribution to the conceptualization and design, acquisition of data, analysis and interpretation of data. The first author (JW) drafted the article and all authors listed played an important role in revising the manuscript for intellectual content. All authors provided final approval of the version to be published and are accountable for all aspects of the work.
Disclosure
The authors report no conflicts of interest in this work.