Retaining Patients in HIV Care: An Insider Action Research Study

By Nancy Murphy, Erin Athey, Alfred Larbi, & Nnemdi Elias

    Retaining Patients in HIV Care: An Insider Action Research Study

    About the Author

    Nancy Murphy, Erin Athey, Alfred Larbi, & Nnemdi Elias
    Murphy - Nurse Practitioner; Athey - Nurse Practitioner & Founder/CEP of C3 Cares; Larbi - Manager of Site Contracts & Budgets; Elias - Physician
    Red Bank, NJ, US
    1 Article Published
    Nancy Murphy, Erin Athey, Alfred Larbi, & Nnemdi Elias

    Dr. Nancy Murphy is a nurse practitioner. She holds a PhD in Social Welfare from the Graduate Center, City University of New York. She is an experienced clinician, patient advocate, implementation specialist and educator. At the time of the research, she was a faculty member in the Graduate Nursing Program at Howard University and practicing at United Medical Center’s HIV clinic, in Washington, DC. Her clinical practice has been with diverse populations impacted by negative socio-economic determinants of health. She has conducted several "inside action research" projects, in both clinical and academic settings. ORCID ID 0000-0002-9748-4632
    Dr. Erin Athey is a family nurse practitioner who has spent nearly two decades in Washington, D.C., as a clinician, educator, and community-engaged scholar to improve health outcomes for those who are under-resourced and disenfranchised. Her experiences have led her to develop several innovative, community-based initiatives that focus on improving health literacy and bringing healthcare into these communities. These experiences, combined with her desire to improve access to care in the communities for whom she has dedicated her career, inspired her to create C3 Cares – a nurse-led, primary care provider placing clinics directly in DC’s public and affordable housing communities.
    Dr. Alfred Larbi is a manager at an integrated global, full-service CRO with specialized expertise in medical device, novel technology and combination products. He previously worked for an NIHR UKCRC registered academic clinical trials unit in Cambridge, UK and a safety net hospital in Washington DC primarily supporting healthcare research operations in various ways at each institution. Alfred also holds a Master’s degree in Public Health degree from the George Washington University, where he was awarded a graduate research assistantship.
    Dr. Nnemdi Elias is a Yale University-trained physician, board certified in Addiction Medicine and Internal Medicine. She completed her residency in Internal Medicine/Primary Care at University of California, San Francisco and holds a Masters in Public Health from University California, Berkeley. Dr. Elias has held various senior medical positions, including Chief Medical Officer at the DC Department of Health and Chief of the HIV/AIDS Care and Treatment section of the Centers for Disease Control and Prevention Global AIDS Program in Dar es Salaam, Tanzania. She is currently focused on changing the “Zipcode Paradigm” through social entrepreneurship and service.

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    Project Summary

    Retaining patients in care is a critical aspect of HIV clinical practice. People living with HIV (PLWH) are likely to continually adhere to HIV treatment when they remain in continuous care. Retention in HIV care is associated with viral suppression (< 200 copies/ml on viral load testing) which improves immune function, decreases individual morbidity and mortality, reduces or eliminates the risk of HIV transmission (Undetectable = Untransmittable), and overall enhances patient’s health and wellbeing (Center for Disease Control and Prevention [CDC], 2022; Eisinger et al., 2019). Sustained retention in HIV care provides the necessary foundation for “treatment as prevention” (CDC, 2021b).

    Reporting on data from 2019, the CDC estimates that of the 1.2 million people living with HIV, approximately 65% are receiving care, 50% are retained in care, and 56% are virally suppressed (CDC, 2021b). The reasons for low retention in HIV care are multifaceted, with negative social determinants of health playing a major role. Despite a very large body of research on the retention of patients in HIV care, there has been and continues to be little focus on the interplay of clinic operations and interpersonal practices among interdisciplinary HIV team members as an intervention to address and improve the retention of patients in HIV care. Therefore, this study, conducted from 2015 to 2016, took up this question using an “Inside Action Research” approach (Coghlan & Brannick, 2014).

    This research highlights a detailed description of “how to” develop and implement a successful patient retention in HIV care protocol. Describing the importance and expected behaviors/actions of team members and clearly explicating their roles, which supports the shift from task-holding to task-sharing (not task-shifting) is another distinctive contribution of this research. In addition, the iterative processes undertaken by the team during this project are laid out. 

    Project Context

    The research was conducted at an urban, hospital-based HIV clinic in the mid-eastern region of the US from February 2015 – October 2016. The clinic patient population was majority black men and women (99%). Over 90% of patients had Medicaid or a Medicaid-managed care plan. The clinic also received HRSA Ryan White funding. The staff participants (9 women, 1 man) were 10 racially and ethnically diverse (African-American, Black African, Caucasian-American) individuals. Staff participants included: 2 case managers, 1 case manager supervisor, 1 community health worker, 1 clinical patient navigator, 1 front desk officer/retention associate, 2 nurse practitioners, 1 registered nurse, and 1 physician/medical director. The two nurse practitioners (both practicing in the clinic and part of the staff participants in the research) were also the principal investigator (PI) and co-investigator (Co-I) of the study. Except for the PI and Co-I, involvement in the project was approached as an extension of the staff participants’ regular job duties and was guided by Inside Action Research Principles for Acting Ethically in Organization and Workplace Inquiry (Practice Manual PowerPoint Slides 6 & 7). The study was approved by the IRB of Howard University. Informed consent was waived.

    The grounding philosophies for this research, including democratic professionalism (Dzur, 2008; Murphy, 2015; Thompson, 2014), critical feminist theory (Lorde, 1984), and social justice praxis (Kagan et al., 2014), directed the (1) ethics of the study, (2) interpretative lens of the research, (3) choice of theories and methods, and (4) the behavior of the researchers. All three philosophies are intentional in sharing authority and addressing issues of inequities, power, justice, and relationships. These philosophies undergird this research because these concepts influence how clinicians work together on interdisciplinary teams, the kind of care and service provided for patients, and ultimately affect patient retention.

    Research Goal, Method, and Outcome

    Study Goals and Rationale

    The study addressed the following research questions with the explicit goal of improving patient retention in HIV care:

    1. What are the core components of interdisciplinary patient retention in HIV care practices?
    2. What are the specific practices of the interventions, services, treatments, etc., related to each component?
    3. How should the labor and responsibility for the core components and the practices of an interdisciplinary team dedicated to improving patient retention in HIV care, be divided among the team members, accounted for, and coordinated?
    4. What other factors impact the development and implementation of interdisciplinary team retention in care practices, in a real-world setting?

    Literature Review

    The cause of low retention in HIV care is multifaceted and includes various factors. The social determinants of health (SDoH) such as low socioeconomic status, lack of food, and housing insecurity (Zinski et al., 2015) all negatively impact retention. Disparities in retention have also been documented by race, gender, age, HIV exposure, place of birth, and geographic locations (Anderson et al. 2019). Additionally, individuals with a history of substance use disorders, mental health issues, incarceration, homelessness or marginally housed, children, adolescents, young adults, and pregnant women, are all at risk for inconsistent or less than continuous HIV care (Eaton et al., 2014).

    The patient’s perception of their clinic experience as well as their perception of their own health influences decisions to remain engaged in care. A Veterans Affairs HIV primary care clinic study found that barriers to retention in HIV care involved dissatisfaction with clinic wait times, low confidence in clinicians, and customer service concerns (Wessinger et al., 2017). The quality of a healthcare provider’s approach and her or his ability to communicate, empathize, etc. has also been highlighted as important to retention in care (Mallinson et al., 2007). Patients who stated they were “feeling healthy” during a clinic visit, also tended to have a lack of or intermittent engagement in care (Castel et al., 2015). In addition, the following factors also negatively impacted health outcomes for people living with HIV: Stigma and being an older Black woman living with HIV (Sangaramoorthy et al., 2017); Patients who frequently changed healthcare sites (Jia et al., 2014); Nondisclosure or selective disclosure of HIV status (Elopre et al., 2015); and Transitioning from pediatric to adult HIV care (Yehia et al., 2013). A plethora of interventions to improve retention in HIV care have been well explicated. Higa and colleagues completed two systematic reviews (Higa et al., 2012; Higa et al., 2016) that identified both evidence-informed practices and best practices that run the spectrum from increasing linkage to care to retention in care and re-engagement in HIV medical care. These successful practices are due to the presence of a dedicated “interventionist” whose focus is to stay closely connected with patients, using culturally sensitive and strength-based approaches, building rapport, and providing case management, to support continuous patient retention.

    Other studies have demonstrated improvement in retention in HIV care by delivering context-dependent services and population-specific interventions. These types of interventions have been particularly successful for Black and Latino men who have sex with men (Hightower-Weidman, et al., 2012), patients who are neurologically impaired, and elders (Jacks et al., 2015), women in pain (Safo et al., 2016) and people who use drugs (Meyer et al., 2013). Public health system efforts using large-scale databases to re-engage patients with HIV into care have also been effective (Saafir-Callaway et al., 2015; Udeagu et al, 2013). Continuity of care (Horstmann et al., 2010) and reconceptualization of how HIV services are organized (McNairy & El-Sadr, 2010) have also been recommended as approaches to improving care retention. Sitipati et al. (2012) utilized multiple modalities to re-engage patients, demonstrating that a formalized clinic approach with a strategic framework was needed for effective retention efforts.


    Study design, theories, and methods

    Action research (AR) and institutional ethnography (IE) were the methodological approaches used for this interdisciplinary study.  AR was selected as it bridges the gap between theory and practice via reflection and inquiring into the cyclical AR processes of (1) constructing, (2) planning action, (3) taking action and, (4) evaluating action, which are central to the development of actionable knowledge (Coghlan & Brannick, 2014, p. 13).  AR focuses on collaboration, engagement, power sharing, and capacity building (Stringer, 2007, pp. 20-24), and allows for degrees of participation, research, action, and reflective practices, based on context, situation, and available resources (Hughes, 2008, p. 386). This study is further differentiated as insider AR (Coghlan & Brannick, 2014) because the researchers/facilitators who conducted the study are also nurse practitioners within the research organization and provide HIV care. The IE tradition of research (Smith, 2005, 2006) focuses on learning “how things happen”. It provides a way of working with participants to explicate the extended regulatory, bureaucratic, professional, legislative, economic, and other relations that structure individual and team practices.

    Insider Action Research Phases/Cycles

    The insider action research cycles progressed in seven phases. Details of the study phases are provided in the Practice Manual Slides 32 & 33.

    Data collection/generation and data analyses

    Several types of data were collected and generated throughout the study and were organized as follows: (1) raw data – written field notes, (2) transformed data – field notes transformed into Word documents, (3) first-person inquiry data – researchers’ reflective journals, (4) process data – logistic notes & timelines, (5) directional & developmental data – retention resources, documents, and practice manual, and (6) analytic data – methodological decision notes, coding notes, dialogical/analytic notes.

    Field notes (Couhlan & Brannick, 2014; Emerson et al., 2011) included team and individual meetings, emails, informal interactions, training and development sessions, and a final learning circle.  Handwritten data and printed data were stored in a locked cabinet to which only the researchers had access. Electronic documents were stored in the researchers’ computers, which were password protected.  Grounded theory methods directed the researchers to conduct data analysis throughout the study, along with methodological decisions and theoretical sampling, which determined next steps in research direction and data collection. Transformed data were openly coded and analytic memoing was utilized (Charmaz, 2006), along with the dialogical method (Rowell et al., 2017; Shor & Freire, 1987) in the development of the categorical themes of the research.


    Core Components and Related Practices of Interdisciplinary Patient Retention Practices (IHRP) 

    The detailed results of the research questions were generated and placed into the Practice Manual (see PowerPoint slides). Ten core components of patient retention practices were identified. The detail of those practices and who was responsible for each practice was developed through the iterative AR cycles. This included patient care practice values, relational practices, task sharing, and the study’s ethics. The retention practices describe the steps and processes the research team determined as necessary to retain this specific patient population in continuous HIV care.

    Study preparation: Supporting leadership, clarifying and adjusting clinic operations

    Prior to the initiation of the patient retention in HIV care AR project, the clinic experienced a turnover in leadership with a new medical director and various staff positions. Therefore, during study preparation, the researchers first focused their efforts on supporting the new leadership with an orientation to current clinic operations.  Several practices were adjusted to provide a foundation from which to begin the research. The clinic staff worked to improve the organization of clinic records.  A triage sheet that included brief medication adherence questions, pharmacy information, patient contact, alternate contact information, and a yes/no question as to whether or not alternate contact was aware of the patient’s HIV status was implemented. The NPs and MDs were assigned a designated patient panel and appointment scheduling was updated. 

              Improving interpersonal team relational practices to support patient care and healthy team relationships. As a first step, the retention team met and discussed the scope of the project in order to address the core components of retention in HIV care, their practices, as well as the division of labor and accountability for this work. The researchers focused on the approach of deeply supporting patients, and goodwill toward patients and reinforced that using “tough love” with the patients, as a default, would not support an environment of trust and progress. The researchers also focused on therapeutic alliance, and how this would provide a foundation for interpersonal relational practices between the staff and patients, as well as, among the team members (Practice Manual Slide 7). The concepts of reflective practice, managing the grapevine, and limiting private conversations to 10 minutes or less were introduced to the group in order to foster healthy interpersonal relationships and also to focus the team’s attention on patient care. At regular team meetings, the importance of using “wise speech” criteria (is it kind, true, timely, necessary, helpful) with teammates was encouraged along with directly communicating with colleagues any misunderstandings, questions, etc., before speaking with supervisors or other colleagues about an issue of concern. These were woven into the Practice Manual (Slides 9 & 10), repeatedly discussed at team meetings, mentored, and reinforced. Concerns related to fear, uncertainty, and trepidation surfaced about trying out these new behaviors. Several individuals reported “it was not easy” to enact these practices, but the rewards and positive outcomes once they “took the leap” resulted in better working relations and greater trust.

              Moving from individual retention of knowledge and task-holding to interdisciplinary retention of knowledge and task-sharing. Developing interdisciplinary retention practices required individuals to move away from retaining individual knowledge about retention practices and move towards interdisciplinary knowledge and task-sharing. It was discovered that most of the participants knew very well their own practices but did not know the work practices of others. As the research progressed, sharing and explicating the roles and responsibilities of all team members helped staff to know where they fit in and how they could combine efforts with others.

    To share information and better improve communication about patients, a weekly case conference was implemented with the Medical Case Management (MCM) team and one of the team NPs with extensive experience working with interdisciplinary teams and HIV case management. This NP provided supervision to the MCM team on care planning and acted as a liaison between MCM and the other NP/MD providers. In addition, the lead MCM team met weekly with the RN and NP/MD providers to review patient panels and highlight cases that were retention priorities.  Each provider also instituted “huddles” with clinical team members so that the pressing needs of scheduled patients were discussed prior to their appointment each morning. The MCM team also implemented a charting and reporting style “SBAR-NOF” (Situation, Background, Action, Response – Next Steps, Outcomes, and Follow-up) in order to improve charting. This facilitated consistent communication in meetings and in the documentation.

    Co-occurring events competing with clinic resources for retention

    Throughout the study phases, the researchers learned that the retention of patients in HIV care project would not always be the priority for the clinic. At various times over the course of the study, the clinic addressed a wide range of anticipated and unanticipated co-occurring events which competed for staff time and resources. These external events included site visits from outside regulators, clinic staff turnover, mandatory hospital events, and an unforeseen reduction in the hospital workforce – all of which created obstacles to conducting this research. During these times, the researchers and members of the clinic team were required to shift gears and reorganize the research plans, as clinic staff was needed to refocus efforts that took time away from the retention project.


    The findings of this study are congruent with other published retention in HIV care intervention studies which have identified that retention approaches are highly context-dependent and should focus on nurturing customer service with caring and emotionally encouraging communication and positive messaging to patients, (Higa, Crepas & Mullins, 2016; Higa, Marks, Crepas, Liau & Lyles, 2012; Wessinger, 2017). What this study offers to the vast literature on retention in HIV care is a detailed description of “how to” develop and carry out a patient retention in HIV care protocol which addresses clinic operations, the complexities of interpersonal team practices, the challenges of anticipated and unanticipated co-occurring events, and the real-world realities of managing the clinic milieu – all labor-intensive human endeavors.

    The closest example of a detailed retention in HIV care protocol was presented by Sitapati et al. (2012). However, although their quality improvement program demonstrated a detailed protocol for retention efforts, it did not address the significance of the interaction between team colleagues, nor did it explicate a mechanism for colleagues to provide feedback and contribute to the protocol. This insider AR was the first research on retention in HIV care in which the core components and their properties were identified along with an explication of coordination and collaboration among those providing the retention services. As well, it addressed the manner and attitude in which colleagues would engage with patients and one another.

    Describing the importance of team relationships and clearly explicating the roles of each member of the team so that team members can move from task-holding to task-sharing is another distinctive contribution of this research.  It is important to note here the difference between the term “task-sharing” and the more popular term “task-shifting”, as there is a concern that “task-shifting” can be experienced by those not in leadership as “task-dumping”, often assigning extra responsibilities to team members, without appropriate resources and often without their input.

    Further, this project used the frameworks of democratic professionalism and therapeutic alliance as a foundation for this clinic’s practice, which allowed the research project to establish underlying core values and a caring approach to patient care. It created a space for clinic colleagues to analyze their practices and behaviors, enact new and well-thought-through relational practices to improve collaborative care and provide feedback about the evolving core components of the retention in care protocol. The research findings also highlighted the complexity of doing this type of insider action research due to the nature of power relationships among staff, multiple and ever-changing competing priorities, as well as challenges to the changing cultural environment.

    The creation of the “Practice Manual” for the interdisciplinary team practices for retaining patients in HIV care was also unique, as it was developed to ensure the sustainability of the model after the research project ended and to inform others – both inside and outside of the institution – of the practices that had been created in relation to retention in HIV care. It was also established early on that the manual would be the intellectual property of all of those on the interdisciplinary patient retention in HIV care team, and therefore, each member of the team could freely present the manual and share the research findings with others.

    In another feature, the financial value of the “Missed Visit Protocol” was uniquely measured in relation to the broader healthcare system, by calculating return on investment (ROI) using a model which includes treatment costs that are defined by patient’s CD4 count (Larbi et al., 2018). CD4 count is an indicator of immune function in people living with HIV and one of the key determinants for the need of opportunistic infection prophylaxis (Larbi et al., 2018). The ROI analysis offset gains from investment ($152,356.77) with costs required to apply the protocol in practice. The latter cost was calculated using micro-costing direct measurement methods, to allow for a measure of the financial value of resources used to implement the protocol to be taken (Larbi et al., 2018). The “Missed Visit Protocol” is outlined on Slide 17 in the Practice Manual and subsequent slides outline each team member responsibilities relative to this protocol.

    The research efforts of the interdisciplinary retention in HIV care team were geared towards improving patient outcomes in a meaningful and measurable way. A key patient benefit of the preliminary research performed by the team was an increase in the number of patients who achieved a suppressed HIV viral load over a 12-month measurement period i.e., 81 to 95 (p = 0.04) (Larbi et al., 2018). Another key benefit was a decrease in the number of patients in need of prophylaxes for HIV-related opportunistic infections, i.e., 21 to 13 (p = 0.06) (Larbi et al., 2018).


    Insider action research is highly context and setting-dependent. Therefore, the findings of this study are not expected to be generalizable to other settings.  However, it is likely that other HIV clinics share some of the same characteristics as this clinic and would benefit from the rich descriptions and findings of this study.  The challenges and limitations related to insider action research include (1) pre-understanding of the setting, (2) playing dual roles as an employee and researcher, and (3) the influence of organizational politics (Coghlin & Branick, 2014). The researchers did conduct pre-research reflective journaling and dialogue on assumptions and biases related to the research questions and methods and continued these practices throughout the duration of the study, in an effort to manage these potential limitations.


    This research highlights the need for detailed protocols to address retention in HIV care and also emphasizes the need for dedicated time and resources allocated to retaining patients in care.  Future research on retention in HIV care should focus on the importance of interpersonal team relational practices, as well as, addressing power dynamics among the HIV team providers that may create barriers to providing patient-centered care. As demonstrated, there is strong evidence to suggest that improvements in physiological and healthcare expenditure outcomes can be linked to the quality of patient retention practice (Larbi et al., 2018). Ongoing national strategies (The White House, 2021) and new novel longitudinal methods for assessing retention continue to address improving retention in HIV care (Mody, 2021). However, the impact of the fluid nature of the practice manual, the transforming perspectives and practices of the healthcare team, and the benefits of documenting practices and protocols should not be underestimated. These factors require constant vigilance, appropriate supervision, and ongoing attention – and should have a greater focus in the field of retention of patients in HIV care. 


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    To cite this work, please use the following reference:

    Murphy, N., Athey, E., Larbi, A., & Elias, N. (2023, March 17). Retaining Patients in HIV Care: An Insider Action Research Study. Social Publishers Foundation.

    Copyrighted by Creative Commons BY-NC-SA

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