Introduction
While disengagement from HIV care threatens the health of persons living with HIV (PLWH) and incidence‐reduction targets, re‐engagement is a critical step towards positive outcomes. Studies that establish a deeper understanding of successful return to clinical care among previously disengaged PLWH and the factors supporting re‐engagement are essential to facilitate long‐term care continuity.
Methods
We conducted narrative, patient‐centred, in‐depth interviews between January and June 2019 with 20 PLWH in Lusaka, Zambia, who had disengaged and then re‐engaged in HIV care, identified through electronic medical records (EMRs). We applied narrative analysis techniques, and deductive and inductive thematic analysis to identify engagement patterns and enablers of return.
Results
We inductively identified five trajectories of care engagement, suggesting patterns in patient characteristics, experienced barriers and return facilitators that may aid intervention targeting including: (1) intermittent engagement;(2) mostly engaged; (3) delayed linkage after testing; (4) needs time to initiate antiretroviral therapy (ART); and (5) re‐engagement with ART initiation. Patient‐identified periods of disengagement from care did not always align with care gaps indicated in the EMR. Key, interactive re‐engagement facilitators experienced by participants, with varied importance across trajectories, included a desire for physical wellness and social support manifested through verbal encouragement, facility outreach or personal facility connections and family instrumental support. The mechanisms through which facilitators led to return were: (1) the promising of living out one's life priorities; (2) feeling valued; (3) fostering interpersonal accountability; (4) re‐entry navigation support; (5) facilitated care and treatment access; and (6) management of significant barriers, such as depression.
Conclusions
While preliminary, the identified trajectories may guide interventions to support re‐engagement, such as offering flexible ART access to patients with intermittent engagement patterns instead of stable patients only. Further, for re‐engagement interventions to achieve impact, they must activate mechanisms underlying re‐engagement behaviours. For example, facility outreach that reminds a patient to return to care but does not affirm a patient's value or navigate re‐entry is unlikely to be effective. The demonstrated importance of positive health facility connections reinforces a growing call for patient‐centred care. Additionally, interventions should consider the important role communities play in fostering treatment motivation and overcoming practical barriers.