TY - JOUR
T1 - Conceptualising engagement with HIV care for people on treatment
T2 - the Indicators of HIV Care and AntiRetroviral Engagement (InCARE) Framework
AU - the InCARE Stakeholder Group
AU - Keene, Claire M.
AU - Euvrard, Jonathan
AU - Amico, K. Rivet
AU - Ragunathan, Ayesha
AU - English, Mike
AU - McKnight, Jacob
AU - Orrell, Catherine
AU - Grimsrud, Anna
AU - Harley, Beth
AU - von der Heyden, Erin
AU - Eshun-Wilson, Ingrid
AU - Katz, Ingrid
AU - Arendse, Kirsten
AU - Beres, Laura
AU - Mugavero, Michael
AU - Cassidy, Tali
AU - Phillips, Tamsin
N1 - Publisher Copyright:
© 2023, The Author(s).
PY - 2023/12
Y1 - 2023/12
N2 - Background: As the crisis-based approach to HIV care evolves to chronic disease management, supporting ongoing engagement with HIV care is increasingly important to achieve long-term treatment success. However, ‘engagement’ is a complex concept and ambiguous definitions limit its evaluation. To guide engagement evaluation and development of interventions to improve HIV outcomes, we sought to identify critical, measurable dimensions of engagement with HIV care for people on treatment from a health service-delivery perspective. Methods: We used a pragmatic, iterative approach to develop a framework, combining insights from researcher experience, a narrative literature review, framework mapping, expert stakeholder input and a formal scoping review of engagement measures. These inputs helped to refine the inclusion and definition of important elements of engagement behaviour that could be evaluated by the health system. Results: The final framework presents engagement with HIV care as a dynamic behaviour that people practice rather than an individual characteristic or permanent state, so that people can be variably engaged at different points in their treatment journey. Engagement with HIV care for those on treatment is represented by three measurable dimensions: ‘retention’ (interaction with health services), ‘adherence’ (pill-taking behaviour), and ‘active self-management’ (ownership and self-management of care). Engagement is the product of wider contextual, health system and personal factors, and engagement in all dimensions facilitates successful treatment outcomes, such as virologic suppression and good health. While retention and adherence together may lead to treatment success at a particular point, this framework hypothesises that active self-management sustains treatment success over time. Thus, evaluation of all three core dimensions is crucial to realise the individual, societal and public health benefits of antiretroviral treatment programmes. Conclusions: This framework distils a complex concept into three core, measurable dimensions critical for the maintenance of engagement. It characterises elements that the system might assess to evaluate engagement more comprehensively at individual and programmatic levels, and suggests that active self-management is an important consideration to support lifelong optimal engagement. This framework could be helpful in practice to guide the development of more nuanced interventions that improve long-term treatment success and help maintain momentum in controlling a changing epidemic.
AB - Background: As the crisis-based approach to HIV care evolves to chronic disease management, supporting ongoing engagement with HIV care is increasingly important to achieve long-term treatment success. However, ‘engagement’ is a complex concept and ambiguous definitions limit its evaluation. To guide engagement evaluation and development of interventions to improve HIV outcomes, we sought to identify critical, measurable dimensions of engagement with HIV care for people on treatment from a health service-delivery perspective. Methods: We used a pragmatic, iterative approach to develop a framework, combining insights from researcher experience, a narrative literature review, framework mapping, expert stakeholder input and a formal scoping review of engagement measures. These inputs helped to refine the inclusion and definition of important elements of engagement behaviour that could be evaluated by the health system. Results: The final framework presents engagement with HIV care as a dynamic behaviour that people practice rather than an individual characteristic or permanent state, so that people can be variably engaged at different points in their treatment journey. Engagement with HIV care for those on treatment is represented by three measurable dimensions: ‘retention’ (interaction with health services), ‘adherence’ (pill-taking behaviour), and ‘active self-management’ (ownership and self-management of care). Engagement is the product of wider contextual, health system and personal factors, and engagement in all dimensions facilitates successful treatment outcomes, such as virologic suppression and good health. While retention and adherence together may lead to treatment success at a particular point, this framework hypothesises that active self-management sustains treatment success over time. Thus, evaluation of all three core dimensions is crucial to realise the individual, societal and public health benefits of antiretroviral treatment programmes. Conclusions: This framework distils a complex concept into three core, measurable dimensions critical for the maintenance of engagement. It characterises elements that the system might assess to evaluate engagement more comprehensively at individual and programmatic levels, and suggests that active self-management is an important consideration to support lifelong optimal engagement. This framework could be helpful in practice to guide the development of more nuanced interventions that improve long-term treatment success and help maintain momentum in controlling a changing epidemic.
KW - Adherence
KW - Antiretroviral therapy
KW - Engagement
KW - HIV care continuum
KW - Retention
KW - Self-management
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U2 - 10.1186/s12913-023-09433-4
DO - 10.1186/s12913-023-09433-4
M3 - Article
C2 - 37143067
AN - SCOPUS:85158002511
SN - 1472-6963
VL - 23
JO - BMC health services research
JF - BMC health services research
IS - 1
M1 - 435
ER -