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A Qualitative Investigation of Patients’ Transitional
States of Engagement in HIV-Related Medical Care
Stephanie Koch, MS, Mary Gerkovich, PhD, Karen Williams, PhD, Julie Banderas, PharmD
Introduction
Results
Engagement in care following an HIV positive
diagnosis carries essential clinical and public
health implications, including:
• careful management of the disease
• minimization of viral load,
• maintenance of a healthy CD4 count
• transmission prevention
Patients experience difficulty staying engaged in
care and often transition into and out of care.
• Six main themes emerged from the data
• Each contained subthemes that describe the
issues more specifically.
• Factors related to transitions in engagement
varied greatly among individuals
• Major themes that were reported by the
majority of individuals include the following
factors:
Conclusion
Objective
Discover factors related to engagement in HIVrelated medical care with emphasis on
transitions into and out of care.
Methods
• Qualitative study based on sesmi-structured
individual interviews.
• Interviews were transcribed and
independently coded for themes by two of
the investigators
• All coding was fully reconciled
Figure 1. Overlap of factors related to
engagement in care
General Clinic Factors
Personal Factors
Support Factors
Clinic factors
Follow-up and outreach
Lack of coordination with medications
Scheduling difficulties
PCP lacks HIV treatment knowledge
Recognition of HIV status
Domestic responsibilities
Feeling overwhelmed by HIV status
Impact of stigma
Mental and emotional stability
Trying to avoid health care system
Using previous success as motivation
Access to information
Case manager assistance
Act to benefit or please others
Support programs
Sample
HIV+ individuals who have had periods of
non-engagement in medical care.
• n = 22
• 50% male
• 50% Black
• Time since diagnosis: 2-26 yrs
• 22% (n=5) living with HIV for >20 yrs
Health FactorsResources
Desire for positive health status
Health is OK-no need for care
Health perception
Health problems
Make HIV part of regular health care
Taking care of routine medical care
Treatment Factors
Employment status
Financial issues
Homelessness or unstable housing
Acquiring and keeping services
Transportation
Incarceration
Burden of Treatment
Effects and expectations of ARVs
• Factors that enable or hinder care engagement
vary among HIV-positive persons; the data
demonstrate that a deterrent for one patient
may act as a motivator for another.
• Factors related to engagement should be
individualized, based on evaluation upon care
entry and during each subsequent contact.
• Findings support an existing framework and
indicate the need for evaluation of funding
priorities, as well as changes at the health care
system and policy levels.
• Our conceptual framework addresses
engagement transitions and can help providers,
case managers, clinic staff, and administrators
understand the complexity of factors to be
accounted for when developing efforts to
support better engagement in care.
Acknowledgement
Research supported by a grant from the
University of Missouri Research Board.
Thanks to our TMC colleagues.