The human immunodeficiency virus is a major public health problem that has claimed the lives of more than 34 million people world-wide.1 In 2014 alone, 1.2 million people died from HIV-related causes globally. At the end of 2014, 36.9 million people were reported to be living with HIV, and two million people are estimated to be newly infected each year. In mid-2015, it was estimated that only 54% of all PLWH knew that they were infected.1 The United States Centers for Disease Control and Prevention (CDC) estimates that at the end of 2012, 1.2 million people in the U.S. aged 13 years and over were living with HIV, which includes 156,300 people who did not know that they were infected. In 2014, 44,073 new infections were estimated annually with the highest numbers of new infections occurring in people aged 25–29 years, who were Black/African American, through male to male sexual contact.2
The introduction of combination antiretroviral therapies (ART) available since the 1990s has dramatically decreased morbidity and mortality associated with HIV infection.3 With the availability of ART, HIV is now a treatable yet complex chronic illness. Access to care and ongoing engagement in care for antiretroviral (ARV) medication adherence and psychoeducational support are critical to achieving the desired outcomes of reducing risk of further HIV transmission, morbidity and mortality, and managing other commonly co-occurring health, social and behavioral conditions, thereby maximizing wellness. Gardener et al.4 reported that PLWH who had been tested but not well-engaged in care accounted for a large proportion of patients with detectable HIV viral loads, and further identified that there were significant gaps in testing and engagement. Similarly, Stinson et al.5 examined HIV viral load for those remaining in care after testing and those lost to follow-up, and found significantly greater virologic suppression in those engaged in care compared to those lost to follow-up. Mattson et al.6 and Skarbinski et al.7 found that individuals who knew their HIV diagnosis and were linked and engaged in care adopted less risky sexual behavior and had a lower HIV transmission rate, underscoring the point that effective treatment prevents further HIV transmissions. With ongoing linkage and engagement in care showing results of persistently lower HIV viral loads and lower transmission rates, it is imperative to better understand what keeps people engaged in care.
In 2013, the HIV Care Continuum Initiative directed US federal departments to accelerate efforts to test and engage PLWH into care.8 To this end, the continuum developed a series of steps or stages of care that if followed are likely to lead to HIV viral load suppression. The first step is to be tested and diagnosed for HIV. The next step is to link all HIV-infected patients to a health care provider within one month of the initial diagnosis/positive test. The final stages require ongoing engagement in order to control the infection and subsequent HIV viral load suppression through lifetime administration of ART.
Data compiled in the US shows significant gaps along the HIV Care Continuum from testing to engagement and treatment. The 2014 CDC report, HIV in the United States: The Stages of Care,9 pointed out several facts: approximately 14% of Americans with HIV in the US do not know that they are HIV-infected. Of those who do know their HIV diagnosis, 80% are initially linked to HIV care but only 40% are actually retained or engaged in HIV care, and only 30% reach the goal of HIV viral load suppression. In response to these poor outcomes the US National HIV/AIDS Strategy has set an ambitious goal that 85% of newly diagnosed patients must enter care within one month of their diagnosis.10 Globally, the Joint United Nations Programme on HIV and AIDS (UNAIDS) has set a goal that by the year 2020, 90% of all PLWH will know their HIV status, 90% will be diagnosed and receive sustained antiretroviral therapy, and 90% of people receiving ART will have viral suppression.11 To reach these goals and to control further transmissions by suppressing HIV viral load, engagement is a priority.
A systematic review conducted on the role of patient engagement as a risk factor for healthcare outcomes in chronic disease reinforces the notion that meeting outcome goals will require enhanced engagement. In this review, Simmons et al. found that patient engagement helps individuals “self-manage chronic disease” and improve outcomes.12(p.1–2) The authors stressed that patient engagement itself might be one of the most influential and “modifiable risk factors” for chronic disease outcomes. They recommended that patient engagement measures should be included as a component of ongoing health risk assessments, but did not address health systems, structures or practices that promoted engagement.
Engagement is not simply retention in care but the ongoing process/connection/partnership between the patient and the health care system that influences self-care and retention.
Engagement is influenced by a variety of factors that can be categorized as individual characteristics and resources (gender, age, resilience, mental health, coping mechanisms, financial means), health care system/practice characteristics and resources (wait times, privacy, coaching and coordination), and societal attitudes and resources (stigma, transportation, social services, health insurance). What is clear is that engagement is not simply a responsibility of the patient, rather efforts must be taken within and across each sphere for maximal patient engagement.
In the US, a renewed emphasis on improving primary care and outcomes associated with primary care has generated new health care delivery models, structures and processes aimed to promote patient-centeredness and patient engagement. These changes targeted quality, safety, efficiency, communication, teaching and coaching roles of providers, adapt structures to facilitate patient flow for ease of care access, and incorporate tools to support patient self-management. Similarly the international community through the leadership of the World Health Organization13 has produced a report in 2000 that comprehensively outlines a strategy for improving health systems throughout the world and emphasizes that systemic improvements are needed to reach goals to promote, restore and maintain health. The concept of people-centered health care that focuses on responsiveness to patients and their families, improves access to services and designs systems that improve upon the organization and delivery of care are highlighted as essential to a well-functioning health system.
Several qualitative studies have captured engagement from the perspective of health care structures, processes and practices. Christopoulous et al.14 and Koester et al.15 found that empathy without judgment was key to engagement. Bakken et al.16 and Bofill et al. suggested that having a connection with a health care provider that was “not paternalistic or directive”17(p.604) but collaborative, where the provider helped the patient manage their HIV care, allowed for involvement in care planning and accepted individual preferences as key to engagement. They found that patients who had this kind of relationship with a health care provider reported better adherence to treatments and consistency in taking medications. Similarly, Greene and Yedidia18 found that for patients with complex chronic conditions, there was a perception of provider support that was predictive of participation in self-management, a key component of engagement. Bofill et al.,17 Messer et al.19 and Reimen et al.20 found that for PLWH, in addition to empathy and collaboration, a critical component of this provider-patient relationship was maintaining confidentiality and discretion as patients were concerned with the stigma associated with the disease. Bogart et al.21 found that patients experienced considerable difficulties with scheduling appointments, inflexible clinic hours, long wait times and disrespectful communication from the health care team as barriers to engagement.
A search of the JBI Database of Systematic Reviews and Implementation Reports, Cochrane Library, MEDLINE and CINAHL found several reviews that examined the relationship between engagement and health outcomes,12,22-29 self-management and outcomes, and specific intervention strategies to retention in care. In a quantitative review conducted by Rosen and Fox22 retention rates of HIV patients in sub-Saharan Africa were examined at different stages along the HIV care continuum, and they found loss of patients at every stage. Two systematic reviews presented a narrative analysis of quantitative studies examining practices that promoted linkage to care.23-24 Govindasamy et al.24 focused on retention in care of patients during the period of receiving a HIV-positive diagnosis and taking ARV medications, and identified transportation costs, travel distance to the clinic, long waiting times, stigma and fear of confidentiality as important factors in this initial period of health care. Higa et al.23 provided a narrative review of 10 quantitative studies of interventions supporting linkage to and retention in care, highlighting the importance of provider behaviors (rapport, coordination, teaching, coaching and counseling). Three systematic reviews examined the effectiveness of self-management programs or interventions. Although not directly addressing engagement, these studies are valuable as self-management is seen as an outcome of engagement.25-27 A quantitative systematic review examining the use of mHealth HIV self-management interventions led to the conclusion that mHealth might be a strategy in the self-care management toolbox.25 A mixed methods systematic review on technology-based self-care methods and its impact on antiretroviral adherence supported the value of self-care technology approaches.26 In this study 12 qualitative studies were included, however there was no report of the patient experience beyond identification of the strategies used. Millard et al.27 in a quantitative systematic review explored self-management educational interventions and found that these interventions led to short-term improvements in physical, psychosocial, health knowledge and behavioral outcomes. However, this review did not specifically address whether these interventions improved engagement in care. Liau et al.28 reported that their systematic review on interventions to promote linkage to and utilization of HIV medical care was a qualitative systematic review, however all of the studies were quantitative and a narrative review of the studies was presented. They identified the importance of coordinating care, using motivational counseling, accompanying patients to medical visits and indicated that almost all interventions focused on individual level factors. Flores et al.29 recently published a meta-synthesis of qualitative studies examining patient and provider experiences on linkage and retention in care of HIV-infected individuals. They examined an eight-year period of literature retrieved from three major databases, opting however not to use critical appraisal based on lack of universal agreement as to what constituted good qualitative research. Findings identified significant barriers in three streams of influence: intrapersonal (psychological state and information challenges), societal (healthcare provider interactions, societal experience) and cultural-attitudinal (life demands, quality of care and structural barriers) which influenced entry and ongoing retention in care.
The majority of the systematic reviews have been quantitative, using narrative review as the synthesis approach. Only one study truly examined the qualitative literature, but examined the broad influences on engagement at the intrapersonal, societal and cultural-attitudinal levels.29 Although this was invaluable to understanding the concept of engagement, more clarity is needed on health care system structures, provider practices, care delivery and programmatic processes that PLWH and their providers find to be supportive of engagement. This proposed study will therefore review qualitative studies examining the experience and impact of health care delivery on health care engagement for PLWH receiving primary care in the US. Health care engagement is defined as an ongoing process/connection/partnership between the patient and the health care system that influences involvement in self-care (self-management, adherence) and achieving the desired outcomes of the steps of the Care Continuum (from initial testing to initial linkage to care, ongoing lifetime engagement in care, and subsequent HIV viral load suppression). To truly change and transform our primary care system to be more responsive to the needs of PLWH, we must look at the system through the eyes of patients and their health care providers. Synthesizing this literature will inform efforts at restructuring and transforming the health care system.
Types of participants
This review will consider studies that include adults, aged 18–65 years, infected with HIV who have received a clinical diagnosis of HIV and their health care providers (physicians, nurses and others providing care to these patients in the primary care health care setting).
Phenomena of interest
This review will consider studies that evaluate the experiences with health care structures/processes/practices that influence engagement in adults infected with HIV and their health care providers.
This review will consider studies from a US perspective that examine the experiences with health care structures/processes/practices that influence engagement of PLWH and their health care providers in primary health care settings (clinics, physician offices, and other community-based health care settings).
Types of studies
This review will consider studies that provide qualitative data including but not limited to, designs such as phenomenology, ethnography, grounded theory, action research and qualitative descriptive.
Studies that address other components of engagement without addressing health care structures/processes/practices will be excluded. Studies that address an acute care hospitalization will also be excluded.
The search strategy aims to find both published and unpublished studies. A three-step search strategy will be used in this review. An initial limited search of MEDLINE, CINAHL and Web of Science will be undertaken followed by analysis of keywords contained in the title or abstract and index terms used to describe relevant articles. A second extensive search will be undertaken using all identified keywords and index terms. The third step will be a hand search of the reference lists, bibliographies of all relevant articles and all identified reports for additional studies and the table of contents of the following journals: AIDS, PLOS One, AIDS Patient Care and STDs, and the Association of Nurses in AIDS Care. Studies published from 1997 to the present will be considered for inclusion in the review. In 1997 highly active antiretroviral therapy (HAART) became the HIV standard of care.30
The databases to be searched include:
- MEDLINE (PubMed)
- EBSCOhost-Academic Search Premier TRIP
- Web of Science
The search for unpublished or grey literature will include:
- Dissertation Abstracts International
- MedNar/Google Scholar
- Virginia Henderson Nursing Library
- Robert Wood Johnson Foundation Research and Publications
- Health Resources and Services Administration Special Projects of National Significance.
Initial keywords to be used will be:
- Qualitative research
- HIV/Human Immunodeficiency Virus
- AIDS/Acquired Immune Deficiency Syndrome
- Engagement in HIV care
- Retention in HIV care (HIV Retention)
- HIV care continuum
- Linkage to HIV care (HIV Linkage)
- Adherence with HIV care
- HIV self-management
- HIV primary care.
Assessment of methodological quality
Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion using the Joanna Briggs Institute's critical appraisal instrument for use in Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI).31 A preliminary review of the literature identified a high volume of qualitative studies on this topic. All studies will be appraised using the full criteria, however, papers not meeting criteria 2, 3, 4 and 8 will be excluded without further review as they are considered lower quality studies. Any disagreement will be referenced and resolved by discussion or consultation with a third reviewer.
Data will be extracted from papers included in the review using the standardized JBI Data Extraction Tool for Qualitative Evidence.32 The data extracted will include specific details about the phenomena of interest, populations, study methods and experiences/perceptions of significance to the review question and specific objectives. Data will be extracted from studies by two reviewers independently using this data extraction function, a tool that logs study findings including textual data and study conclusions as reported by the author(s). The reviewers will then assign a level of validity or credibility such as unequivocal, credible or unsupported evidence to each finding. Primary authors will be contacted to clarify/gain additional information pertaining to the methodological appraisal stage and data extraction.
Qualitative research findings will, where possible, be pooled using JBI SUMARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation- through assembling the findings rated according to their quality and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice.
1. World Health Organization [Internet]. HIV/AIDS Data and Statistics; 2016. [cited 2016 July 18]. Available from: http://www.who.int/mediacentre/factsheets/fs360/en/
2. Centers for Disease Control and Prevention [Internet]. Statistics Overview; 2016. [cited 2016 July 18]. Available from: http://www.cdc.gov/hiv/statistics/overview/index.html
3. Palella FJ Jr, Delaney KM, Moorman AC, Loveless MO, Fuhrer J, Satten GA, et al. Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. HIV Outpatient Study Investigators. N Engl J med
1998; 338 13:853–860.
4. Gardner EM, McLees MP, Steiner JF, Del Rio C, Burman WJ. The spectrum of engagement in HIV care
and its relevance to test-and-treat strategies for prevention of HIV infection. Clin Infect Dis
2011; 52 6:793–800.
5. Stinson K, Ford N, Cox V, Boulle A. Patients lost to care are more likely to be viremic than patients still in care. Clin Infect Dis
2014; 58 9:1344–1345.
6. Mattson CL, Freedman M, Fagan JL, Frazier EL, Beer L, Huang P, et al. Sexual risk behaviour and viral suppression among HIV-infected adults
receiving medical care in the United States. AIDS (London, England)
2014; 28 8:1203–1211.
7. Skarbinski J, Rosenberg E, Paz-Bailey G, Hall HI, Rose CE, Viall AH, et al. Human immunodeficiency virus transmission at each step of the care continuum in the United States. JAMA Intern Med
2015; 175 4:588–596.
9. Centers for Disease Control and Prevention. Vital signs: HIV diagnosis, care, and treatment among persons living with HIV-United States. MMWR
2014; 63 47:1113–1117.
10. Office of the National AIDS Policy, 2015. National HIV/AIDS Strategy for the United States: Updated to 2020. Office of the National AIDS Policy, Washington, D.C. [internet]. [cited 2016 July 18]. Available from: https://aids.gov/federal-resources/national-hiv-aids-stratgy/nhas-update.pdf
11. Joint United Nations Programme on HIV/AIDS (UNAIDS). 90-90-90: An ambitious treatment target to help end the AIDS epidemic. [internet]. [cited 2016 July 18]. Available from: www.unaids.org/en/resources/documents/2014/90-90-90
12. Simmons LA, Wolever RQ, Bechard EM, Snyderman R. Patient engagement as a risk factor in personalized health care: a systematic review of the literature on chronic disease. Genome Med
2014; 6 2:16.
13. World Health Organization (WHO). The world health report 2000. [internet]. [cited 2017 January 18]. Available from: http://www.who.int/whr/2000/en/
14. Christopoulos KA, Massey AD, Lopez AM, Geng EH, Johnson MO, Pilcher CD, et al. “Taking a half day at a time:” patient perspectives and the HIV engagement in care continuum. AIDS Patient Care STDS
2013; 27 4:223–230.
15. Koester KA, Morewitz M, Pearson C, Weeks J, Packard R, Estes M, et al. Patient navigation facilitates medical and social services engagement among HIV-infected individuals leaving jail and returning to the community. AIDS Patient Care STDs
2014; 28 2:82–90.
16. Bakken S, Holzemer WL, Brown MA, Powell-Cope GM, Turner JG, Inouye J, et al. Relationships between perception of engagement with health care provider and demographic characteristics, health status, and adherence to therapeutic regimen in persons with HIV/AIDS. AIDS Patient Care STDs
2000; 14 4:189–197.
17. Bofill LM, Lopez M, Dorigo A, Bordato A, Lucas M, Cabanillas GF, et al. Patient-provider perceptions on engagement in HIV care
in Argentina. AIDS care
2014; 26 5:602–607.
18. Greene J, Yedidia MJ. Provider behaviors contributing to patient self-management of chronic illness among underserved populations. J Health Care Poor Underserved
2005; 16 4:808–824.
19. Messer LC, Quinlivan EB, Parnell H, Roytburd K, Adimora AA, Bowditch N, et al. Barriers and facilitators to testing, treatment entry, and engagement in care by HIV-positive women of color. AIDS Patient Care STDs
2013; 27 7:398–407.
20. Remien RH, Bauman LJ, Mantell JE, Tsoi B, Lopez-Rios J, Chhabra R, et al. Barriers and facilitators to engagement of vulnerable populations in HIV primary care in New York City. J Acquir Immune Defic Syndr (1999)
2015; 69 (suppl 1):S16–24.
21. Bogart LM, Chetty S, Giddy J, Sypek A, Sticklor L, Walensky RP, et al. Barriers to care among people living with HIV in South Africa: contrasts between patient and healthcare provider perspectives. AIDS Care
2013; 25 7:843–853.
22. Rosen S, Fox MP. Retention in HIV care between testing and treatment in sub-Saharan Africa: a systematic review. PLoS Med
2011; 8 7:e1001056.
23. Higa DH, Crepaz N, Mullins MM. Identifying Best Practices for Increasing Linkage to, Retention, and Re-engagement in HIV Medical Care: Findings from a Systematic Review, 1996–2014. AIDS Behav
2016; 20 5:951–966.
24. Govindasamy D, Ford N, Kranzer K. Risk factors, barriers and facilitators for linkage to antiretroviral therapy care: a systematic review. AIDS (London, England)
2012; 26 16:2059–2067.
25. Tufts] KA, Johnson KF, Shepherd JG, Lee JY, Bait Ajzoon MS, Mahan LB, et al. Novel interventions for HIV self-management in African American women: a systematic review of mHealth interventions. J Assoc Nurses
2015; 26 2:139–150.
26. Saberi P, Johnson MO. Technology-based self-care methods of improving antiretroviral adherence: a systematic review. PloS One
2011; 6 11:e27533.
27. Millard T, Elliott J, Girdler S. Self-management education programs for people living with HIV/AIDS: a systematic review. AIDS Patient Care STDs
2013; 27 2:103–113.
28. Liau A, Crepaz N, Lyles CM, Higa DH, Mullins MM, DeLuca J, et al. Interventions to promote linkage to and utilization of HIV medical care among HIV-diagnosed persons: a qualitative systematic review, 1996–2011. AIDS Behav
2013; 17 6:1941–1962.
29. Flores D, Leblanc N, Barroso J. Enroling and retaining human immunodeficiency virus (HIV) patients in their care: A metasynthesis of qualitative studies. Int J Nurs Stud
30. AIDS.Gov. [internet]. A timeline of HIV/AIDS. [Cited 2016 November 20]. Available from: https://www.aids.gov/hiv-aids-101/aids-timeline/
31. Lockwood C, Munn Z, Porritt K. Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation. Int J Evid Based Healthc
2015; 13 3:179–187.
32. The University of Adelaide: The Joanna Briggs Institute, The Joanna Briggs Institute. Joanna Briggs Institute Reviewers’ Manual. 2014 Edition. 2014.