Client Perspectives and Experiences With HIV Patient Navigation in the United States: A Qualitative Meta-Synthesis

Abstract

Patient navigation is increasingly utilized to link and (re)engage persons with HIV to care. Understanding client experiences with HIV patient navigation can facilitate intervention design and translation of evidence to practice. We conducted a qualitative meta-synthesis of client experiences with HIV patient navigation. Data were analyzed using thematic synthesis. We identified seven relevant studies; all collected data via in-depth interviews with persons with HIV who participated in HIV patient navigation. Four interrelated themes emerged from analysis that pertain to (1) the complexity of the health and social service environment and the holistic approaches taken by the navigator, (2) the profound significance of the client–navigator relationship, (3) client reluctance to end the navigation program, and (4) client self-efficacy and feelings of hope and psychological change as a result of their navigation experience. The unifying theme across all studies was the value and impact of the client–navigator relationship on client experience and quality of life. Programs should consider hiring navigators who possess strong relational skills and are peers of the clients, and clearly delineating the role of the navigator. Research should examine the impact of the client–navigator relationship on client outcomes and further investigate how participating in patient navigation affects client self-efficacy, client resiliency, and the role of posttraumatic growth to achieve improved HIV outcomes. This review underscores the significance of the relationship within intensive, multilevel interventions for individuals and communities marginalized and isolated from health and social service systems.

Keywords

qualitative research health research HIV/AIDS lay health advisors/community health workers

Background

Due to targeted prevention efforts, the incidence of human immunodeficiency virus (HIV) in the United States has decreased over time (Centers for Disease Control and Prevention, 2018a). However, disparities persist within marginalized and disenfranchised groups, due in large part to social and structural factors that drive HIV acquisition, transmission, and associated health outcomes (De Jesus & Williams, 2018; Mugavero, Amico, Horn, & Thompson, 2013; Pellowski, Kalichman, Matthews, & Adler, 2013). National HIV prevention goals direct that once diagnosed, persons with HIV (PWH) should be immediately linked and retained in care for sustained viral suppression (White House Office of National AIDS Policy, 2015). In 2015, 73% of persons in the United States with diagnosed infections were linked to HIV medical care in a timely manner, and only approximately 60% were retained in care and virally suppressed (Centers for Disease Control and Prevention, 2018b) with even poorer linkage and retention rates for racial/ethnic minorities compared to whites (Mugavero, Amico, Horn, & Thompson, 2013). Interventions that identify PWH, link and retain them to care with the goal of viral load suppression, while addressing key structural drivers of HIV are a priority (Auerbach, Parkhurst, & Caceres, 2011; Frieden, Foti, & Mermin, 2015).

One intervention that aims to improve linkage and retention while addressing social and structural barriers to care is patient navigation. Developed to address disparities in cancer care, patient navigation is a patient-centered model of care where health workers, known as patient navigators, support clients to overcome barriers and access disconnected health systems with the goal of enhanced linkage and retention (Freeman & Rodriguez, 2011). Patient navigation shares traits common to advocacy, health education, case management, and social work and is related to other historically significant HIV peer support and community-based assistance programs (Bradford, Coleman, & Cunningham, 2007; Vargas & Cunningham, 2006). Patient navigation is increasingly utilized in HIV (Bradford et al., 2007; Farrisi & Dietz, 2013; Thompson et al., 2012), with quantitative evidence for positive associations with linkage, retention, and viral suppression (Bradford et al., 2007; Mizuno et al., 2018).

Less is known about client experiences with navigation, how their experiences affect service engagement, and their priorities for care (Land, Hathorn, & Ross, 2011; Peart, Lewis, Brown, & Russell, 2018; Tan, Wilson, & McConigley, 2015). To address this gap, and provide data for the development, implementation, and evaluation of HIV patient navigation interventions (Newman, Thompson, & Roberts, 2006; Sandelowski & Leeman, 2012; Thomas & Harden, 2008; Toews et al., 2017), we conducted a qualitative meta-synthesis (Nye, Melendez-Torres, & Bonell, 2016; Sandelowski, Docherty, & Emden, 1997) to understand and describe client experiences with HIV patient navigation, in order to facilitate research to practice for the benefit of public health programs and practitioners.

Method

We followed the American Psychological Associ-ation’s Journal Article Reporting Standards for qualitative meta-syntheses to report this review (Levitt et al., 2018).

Search Strategy

A librarian with expertise in building and conducting systematic literature searches developed the search methods and conducted the searches. Studies were located from searches in MEDLINE (Ovid), Embase (Ovid), PsycINFO (OVID), and CINAHL (EBSCOhost) using a combination of HIV or AIDS and Patient Navigation indexing and keyword terms. Supplementary searches were conducted in PubMed, Scopus, and Google Scholar, as well as a hand search of key HIV prevention journals and reference checks of included studies. The search was limited to studies published from January 1, 1996, through October 15, 2018 (last date search performed). Citations were uploaded to DistillerSR, a database program used for managing systematic reviews.

Determining Study Eligibility

Peer-review articles, published in English, of studies conducted in the United States with PWH aged ≥18 years were included in the study. Book chapters, conference abstracts, dissertation/theses, magazine/newsletter articles, webpages, and studies reporting only quantitative findings were excluded. We limited our search to studies conducted in the United States because of the unique and complex challenges PWH experience engaging with health and social systems in the United States. Two reviewers independently screened titles and abstracts, then full reports to identify relevant studies. Discrepancies were resolved through discussion.

Abstracting Study Characteristics and Assessing Study Quality

For each relevant article, two reviewers independently abstracted study design, setting and recruitment, study quality, client and navigator characteristics, and intervention activities. Study quality was evaluated using the Critical Appraisal Skills Programme (CASP) qualitative checklist (2017) and scored according to Butler, Hall, and Copnell (2016). Scores range from 0 to 10; 9 to 10 indicating high quality, 7.5 to 9 indicating moderate quality, and <7.5 indicating low quality. Discrepancies were resolved through discussion.

Qualitative Data Coding and Analysis

For data analysis, we used Thomas and Harden’s (2008) thematic synthesis method, best suited for when analytic findings will be used for program practice, intervention development, and evaluation (Nye et al., 2016). To develop the codebook, two reviewers independently identified inductive codes from two relevant articles. Once a draft codebook was developed, all coauthors were involved in reviewing, refining, and piloting the codebook. After piloting, the codebook was revised and finalized.

For each relevant article, two reviewers independently coded data. Each reviewer highlighted segments of text (words, sentences, or paragraphs) and then assigned codes to those segments. Only researcher interpretations of primary data located within the results section of the article were coded (Butler et al., 2016; Toye et al., 2014; Zimmer, 2006). We did not code text in the introduction, methods, or discussion sections, or participant quotes in the results section (Thomas & Harden, 2008). The reviewers confirmed the segments of text they coded, and then within each coded segment, the codes they assigned to those segments. Discrepancies were resolved through discussion until reviewers were in agreement regarding both the segments of coded text and the assigned codes. Because of the small number of relevant studies, we did not calculate intercoder reliability. However, using a team-based approach with multiple coders (Sutton & Austin, 2015), intercoder agreement can be achieved by relying on intensive group discussion and consensus (Harry, Sturges, & Klingner, 2005; Saldaña, 2009).

A qualitative data analysis management program, NVivo 12™ (NVivo), was used to manage data. Coded data were reviewed by the lead author to confirm coding consistency across all articles. To begin, segments of coded text were organized around the five most common codes (Ryan & Bernard, 2003). Data were further ordered based on similarities and relationships between codes (Sandelowski & Leeman, 2012) via a process of constant comparison (Ryan & Bernard, 2003). Themes emerged through active reading of each article and noting insights, confirming and comparing findings across all studies, reevaluating organization of the data, and finally through writing and intensive editing to clarify themes (Thomas & Harden, 2008). All coauthors periodically reviewed and confirmed the analytic process and findings.

Results

Study, Client, and Navigator Characteristics

Seven studies were identified as relevant (Broaddus, Hanna, Schumann, & Meier, 2015; Broaddus, Owczarzak, Schumann, & Koester, 2017; Fuller et al., 2018; Koester et al., 2014; Parnell et al., 2017; Sullivan et al., 2015; Westergaard et al., 2017). Primary data across all studies were collected via in-depth interviews, and data were analyzed using thematic analysis (Sullivan et al., 2015; Westergaard et al., 2017), directed qualitative content analysis (Broaddus et al., 2017), framework analysis (Fuller et al., 2018), ethnographic inductive methodology and grounded theory (Koester et al., 2014), and an unnamed systematic method (Broaddus et al., 2015). CASP study quality scores ranged from 7.5 to 9.5/10 (M = 8.4), or moderate to high quality (Table 1).

Table 1

Study Characteristics of Relevant Studies Reviewed (n = 7)

Study (Year)	Objective	Location	Design	Data Collection Method	Data Collection Dates	Data Analysis Method	CASP Score (0-10)	Funding Source
Broaddus et al. (2015)	To describe client barriers to care, how navigators decrease barriers, and client perspectives on the study	Wisconsin	Intervention study (pilot phase) with qualitative data results	Interview	February to August 2013	Cited “systematic methods,” but no specific analytical approach identified	7.5	DHHS/HRSA Special Projects of National Significance Initiative, Systems Linkages and Access to Care, grant number H97HA22698
Broaddus et al. (2017)	To contribute generalizable knowledge and understand experiences of clients who participated in the study	Wisconsin (Madison and Milwaukee)	Intervention study with qualitative data results	Interview	Winter 2013 to Spring 2014	“Directed qualitative content analysis”	9	DHHS/HRSA, Special Projects of National Significance Initiative, Systems Linkages and Access to Care, grant number H97HA22698
Fuller et al. (2018)	To understand the experiences of clients who participated in the study	Louisiana, Massachusetts, Wisconsin, North Carolina	Intervention study with qualitative data results	Interview	January 2014 to April 2015	Framework analysis	9.5	DHHS/HRSA, Special Projects of National Significance Initiative, Systems Linkages and Access to Care, grant number U90HA22702
Koester et al. (2014)	To examine the interactions between navigators and their clients in order to understand how the patient-navigator model worked in practice.	San Francisco, California	Ethnographic, supplemental qualitative data collection	Interview	December 2010 to October 2011	Grounded theory	8.5	National Institute on Drug Abuse grant number R01DA027209
Parnell et al. (2017)	To describe encounters between clients and navigators, and characterize adaption and use of engagement domain components	North Carolina	Intervention study with qualitative data results	Interview	2014	Cited an “iterative process” but no specific analytical approach identified	9	DHHS/HRSA, Special Projects of National Significance Initiative, Systems Linkages and Access to Care, grant number H97HA22695
Sullivan et al. (2015)	To explore experiences of clients who participated in the study	Chapel Hill, North Carolina	Intervention study with qualitative data results	Interview (via telephone)	Not reported (study dates January 2011 to August 2014)	Thematic analysis	9.5	DHHS/HRSA Special Projects of National Significance Initiative, Systems Linkages and Access to Care, grant number H97HA15148
Westergaard et al. (2017)	To evaluate a mobile health and peer support intervention	Baltimore, Maryland	Intervention study with qualitative data results	Interview	September 2013 to November 2014	Thematic analysis	7.5	National Institutes of Health/National Institute on Drug Abuse grants R34DA033181, U01DA036297, and K23DA032306

NOTE: CASP = Critical Appraisal Skills Programme; DHHS/HRSA = U.S. Department of Health and Human Services/Health Resources and Services Administration.

Per study eligibility, all participants were HIV-positive. Participant ages ranged from 18 to 68 years, and all studies included racial/ethnic minorities as part or all of the sample. Studies also included participants who identified as gay, bisexual, or men who have sex with men (MSM), and transgender (Broaddus et al., 2015; Parnell et al., 2017), had a history of incarceration (Broaddus et al., 2015; Broaddus et al., 2017; Fuller et al., 2018; Koester et al., 2014; Westergaard et al., 2017), or were incarcerated at the time of the study (Koester et al., 2014), had a history of homelessness (Fuller et al., 2018; Westergaard et al., 2017), or substance use (Westergaard et al., 2017), and were out of HIV care (Broaddus et al., 2015; Broaddus et al., 2017; Parnell et al., 2017; Westergaard et al., 2017; Table 2).

Table 2

Client Characteristics of Relevant Studies Reviewed (n = 7)

Study (Year)	Sample size (n)	Study Population	Recruitment Process	Inclusion/Exclusion to Be Interviewed	Age Minimum/Maximum and Mean/Median (Years)	Sex/Gender	Race/Ethnicity	Other Notable Characteristics
Broaddus et al. (2015)	16	PWH, primarily black MSM	Participant names were generated from the navigator client list	Participated in the intervention	18/68, M = 33.7	11 Male, 3 female, 2 TG (MTF)	13 African American, 2 Hispanic, 1 White	3 Had history of incarceration, 8 were out of care
Broaddus et al. (2017)	30	Newly HIV+ and initiating HIV care for the first time, out of care for 60 days, or at risk of falling out of care, history of incarceration	Navigators referred clients for invitation to participate in interviews	Participated in the intervention	22/68, M = 39.7	12 Male, 8 female (missing 10 records)	16 African American, 9 White, 3 Latino, 1 African, 1 Indian	3 Interviews conducted in Spanish, 9 had history of incarceration
Fuller et al. (2018)	24 (Louisiana 14, Massachusetts 1, North Carolina 1, Wisconsin 8)	PWH recently released from prison	Intervention staff set up times and locations for the investigators to meet study participants	Intervention participant, provided verbal consent, released from prison in previous 18 months, and expressed interest in participating in interviews	25/59, M = 45.9	21 Male, 3 female	18 African American, 6 White	3 Some college, 12 HS/GED, 7 some HS, 1 <eighth grade; 3 homeless; all have history of incarceration (M = 6.7 years)
Koester et al. (2014)	31	PWH leaving the San Francisco jail system	Participants were selected by convenience sample, approached and asked to participate	Had ≥2 contacts with navigator and completed 2, 6, and 12 months postrelease assessments	18/65 (71% were 41-65)	25 Male, 6 female	15 African American, 13 White, 2 Latino, 1 more than 1	All have history of incarceration (9 incarcerated 1-10 times, 5 incarcerated 11-20 times, 4 incarcerated 21+ times)
Parnell et al. (2017)	11	PWH out of care (6-9 months since last doctor appointment)	Purpose sampling technique. Clients approached by their navigator, obtained verbal consent, referred to research team for formal consent and data collection	PWH, ≥18 years, speak English, worked with a navigator for care engagement, willing to participate in an interview	24/57, Mdn = 39	5 Male, 5 female, 1 TG	8 African American, 2 White, 1 Other	8 Heterosexual, 2 gay/bisexual, 1 did not identify. 4 some HS, 3 HS, 4 some college
Sullivan et al. (2015)	21	PWH women of color	Women who participated in the intervention were screened for eligibility to participate in interviews, and then were contacted via phone and invited to participate	1 contact with nurse guide 8 months prior to interview (intervention completed)	27/62, M = 44.8	All participants were female	All participants were African American	9 < HS, 2 HS, 9 > HS; annual income 16 <$10,000, 2 $10-30,000, 2 >$30,000; 1 private insurance, 12 public insurance, 7 uninsured
Westergaard et al. (2017)	12	PWH, predominantly Black, male and low-income.	Clinic electronic medical record produced list of those lapsed in HIV care. Clinic staff contacted patients by phone and invited to participate in the intervention. Interviews were conducted with the first 12 participants	>18 years, PWH, >10000mL copies, no visit with HIV provider in 6 months, and willing to attend 1 visit. Excluded medical or psychiatric conditions	Mdn = 49.3 (interquartile range 45.0-54.6)^a	12 Males^a	17 African American^a	Use 6 months prior to enrollment^a: 14 cigarette, 10 marijuana, 4 heroin, 8 alcohol, 3 cocaine, 3 injection drug use; 14 high school GED; 8 annual income <$5,000; 7 hepatitis C seropositive; 5 ever homeless, 9 history of incarceration

NOTE: PWH = people with HIV; MSM = men who have sex with men; TG = transgender; MTF = Male to female; HS = high school; GED = General Educational Development.

Out of 19 randomized into the intervention.

Titles of the individuals functioning as navigators included linkage to care specialist (Broaddus et al., 2015; Broaddus et al., 2017; Fuller et al., 2018), case manager (Fuller et al., 2018), peer (Fuller et al., 2018), bridge counselor (Fuller et al., 2018; Parnell et al., 2017), patient navigator (Koester et al., 2014), nurse guide (Sullivan et al., 2015), and peer navigator (Westergaard et al., 2017). For ease in presenting the results of analysis, all titles were changed to navigator. Navigators were nonmedical professionals (Broaddus et al., 2015), nurses (Sullivan et al., 2015), case managers and disease intervention specialists (Fuller et al., 2018), and had bachelor’s degrees or were clinical social workers (Broaddus et al., 2017; Fuller et al., 2018; Parnell et al., 2017). Navigators sometimes shared personal characteristics with the client, such as HIV positivity, history of incarceration (Fuller et al., 2018; Koester et al., 2014), or familiarity with the client’s community (Westergaard et al., 2017). Length of time navigators spent with clients ranged from one 45-minute video conference (Fuller et al., 2018) to 8 to 10 months of intensive interaction (Broaddus et al., 2015; Broaddus et al., 2017; Fuller et al., 2018; Koester et al., 2014; Sullivan et al., 2015). Navigators communicated with clients in-person (Fuller et al., 2018; Koester et al., 2014; Westergaard et al., 2017) or via video conference (Fuller et al., 2018), phone (Fuller et al., 2018; Sullivan et al., 2015), or text message (Westergaard et al., 2017).

Client Experiences With HIV Patient Navigation

Four interrelated themes emerged from analysis that pertain to the health and social service system and care environment, the profound significance of the client–navigator relationship, client reluctance to end the navigation program, and client self-efficacy and feelings of hope and psychological change as a result of their navigation experience.

Theme 1: Navigators Provide Continuity and Inclusive Support Across Multiple Systems of Care

Systems are fragmented and the navigator provides continuity

Navigators helped clients negotiate complex and fragmented health and social service systems, which can be burdensome for clients (Broaddus et al., 2017). Working within and across multiple systems, navigators became “knowledge brokers,” functioning as a “repository of memory,” providing continuity and unifying the client experience (Broaddus et al., 2017). For the client, lack of clarity about the navigator role within the larger health system or the distinction between the navigator and other service providers may cause hesitation to engage with or confusion regarding the need to discharge from the navigator’s care (Broaddus et al., 2017).

HIV navigators provide support for both HIV and social service needs

Navigators acknowledged the realities of client health and social service needs beyond HIV care (Broaddus et al., 2017; Sullivan et al., 2015). As they introduced themselves to clients, navigators would emphasize their role in care (re)engagement and their availability to provide nonmedical resources and support central tots navigating health systems (Parnell et al., 2017).

Navigators provided HIV-specific advocacy by addressing dissatisfaction with medical care (Parnell et al., 2017), scheduling appointments (Fuller et al., 2018), accompanying clients to medical appointments (Parnell et al., 2017), interpreting medical information, and educating clients about medication adherence, safety, interactions, and side effects (Sullivan et al., 2015). While providing HIV support, navigators emphasized the relationship between the client’s health and the impact to the client’s family (Parnell et al., 2017). While some clients reported not learning anything new about managing HIV because their clinician provided sufficient education (Sullivan et al., 2015), others considered their navigator a lifesaver for their assistance with accessing antiretroviral therapy (Fuller et al., 2018). Overall, navigator support expedited client connections to care (Fuller et al., 2018).

Clients viewed assistance with nonmedical services as more important than assistance with medical services (Fuller et al., 2018). Nonmedical assistance included navigators assessing needs, assistance with accessing food, residency, housing, mental health care, substance use treatment (Broaddus et al., 2017), health insurance (Broaddus et al., 2017; Parnell et al., 2017), and job readiness programs (Fuller et al., 2018). Navigators also provided transportation to appointments (Parnell et al., 2017), reviewed eligibility for social programs, helped obtain and complete forms, coordinated between various support programs, and brainstormed solutions to problems (Broaddus et al., 2017).

Theme 2: Relationship With the Navigator Is Fundamental to the Client Experience

Clients attributed the success of the navigation program to the dimensions of the relationship with their navigator (Broaddus et al., 2017).

The relationship is comfortable and familial

Clients described the relationship as comfortable, sometimes depicting the navigator as a member of the family (Broaddus et al., 2015). Clients reported enjoying spending time with the navigator during home visits (Parnell et al., 2017).

Clients appreciate a personable, encouraging, and genuine navigator

Clients viewed navigators as proactively checking on their well-being and facilitating access to resources (Broaddus et al., 2017). They noted their navigator’s kindness, reliability, and affection (Sullivan et al., 2015), and appreciated when they listened and provided nonjudgmental encouragement (Westergaard et al., 2017). Navigator earnestness to listen made it easier for clients to share their experiences (Parnell et al., 2017). The availability of the navigator was seen as a sign of the relationship’s authenticity (Sullivan et al., 2015). Clients described navigators as motivating and helping (Broaddus et al., 2017), providing assistance beyond their navigator duties, or being available after hours to talk (Broaddus et al., 2017; Sullivan et al., 2015). Clients appreciated the navigator’s problem-solving abilities (Parnell et al., 2017; Sullivan et al., 2015), and their persistence in addressing client dissatisfaction with medical care, which often motivated clients to return to care (Parnell et al., 2017). For some clients, perceptions of the navigators evolved over time, learning that the navigator was a resource to help, rather than a monitor of their behavior (Broaddus et al., 2017).

The presence of the navigator is evidence that someone cares

Clients appreciated having a person designated to help them and found it comforting to be able to contact the navigator after the intervention ended (Fuller et al., 2018). The genuine friendliness and heartfelt concern of the navigator gave clients a feeling they were cared for (Sullivan et al., 2015), as did the navigator’s patience and flexibility to help the client engage in care (Parnell et al., 2017). For incarcerated clients, contact from the navigator before release was proof that someone on the outside cared for them (Fuller et al., 2018). Likewise, for clients who were separated or estranged from family, the navigator provided a sense that someone cared (Broaddus et al., 2017).

The value of shared experiences and empathy

Clients valued the presence of a peer (Westergaard et al., 2017); the relationship with a navigator who is a peer was different and potentially more meaningful for clients (Koester et al., 2014). When clients knew the navigator understood or shared their priorities, it enhanced their interest in returning to HIV care (Parnell et al., 2017) and brought value to their interactions with services (Koester et al., 2014). Shared experiences served as a motivating factor to follow the navigator’s advice; some clients were not as willing to take advice from someone without similar life experiences (Koester et al., 2014).

Psychosocial support is an important component of the relationship

Navigators provided emotional support and social connection (Broaddus et al., 2017; Parnell et al., 2017). They increased comfort with an HIV diagnosis (Broaddus et al., 2015), and clients believed that the social support and encouragement they received facilitated their engagement in HIV care (Parnell et al., 2017; Westergaard et al., 2017). Clients consistently endorsed the navigator’s support, regardless of whether they had strong or limited social support networks. For clients with strong ties to friends and family or other networks, the navigator provided additional encouragement (Fuller et al., 2018). For clients without stable sources of support, navigators may have been the primary source of support (Fuller et al., 2018), in which a personal connection was especially important and fulfilling (Broaddus et al., 2015; Broaddus et al., 2017; Fuller et al., 2018; Sullivan et al., 2015). For incarcerated clients, the navigator and the program addressed gaps in supportive networks that may have deteriorated while clients were incarcerated (Broaddus et al., 2017). Compared with other service providers, navigators provided more support and paid closer attention to their needs (Broaddus et al., 2017).

The relationship functions as a buffer against stigma

The relationship with the navigator was cited as a buffer against client perceptions and experiences of HIV stigma and shame, which may have kept them from engaging in care (Broaddus et al., 2015) or with their family (Broaddus et al., 2017; Sullivan et al., 2015).

The relationship leads to care engagement

Clients noted the relationship with their navigator as motivation to prioritize engagement in care (Broaddus et al., 2015) and as the reason for continued adherence to HIV treatment (Sullivan et al., 2015).

Theme 3: Clients Are Reluctant to End the Navigation Program

Clients reported feelings of loss and sadness when describing the experience of ending the navigation program (Westergaard et al., 2017). Even for clients who understood the program was time-limited and were prepared to manage their own care, some were anxious about leaving the program (Broaddus et al., 2017).

Unprepared to leave and/or need more assistance

Clients wanted to continue working with their navigator because they felt unprepared to engage in HIV care (Sullivan et al., 2015). Some incarcerated clients needed continued assistance navigating nonmedical support services to facilitate transition into the community and minimize potential barriers (Fuller et al., 2018).

The desire to maintain a relationship with their navigator

Clients were reluctant to end the intervention, especially when they formed close bonds with the navigator (Fuller et al., 2018). Clients wanted to maintain their relationship for as long as possible (Broaddus et al., 2017), and some intended to keep in contact if they encountered barriers to care or simply to touch base (Broaddus et al., 2015).

Burden of starting over

Clients expressed anxiety about transitioning out of the program because they viewed their relationship as an investment (Broaddus et al., 2015; Broaddus et al., 2017). They may be resistant to establishing new relationships (Sullivan et al., 2015) with their next care provider because of the emotional burden of continuing to disclose their story to people over and over again (Broaddus et al., 2015; Broaddus et al., 2017).

Theme 4: Participation in a Navigation Program Can Instill Hope and Transform Lives

Working with the navigator engendered hope

Working with the navigator and participating in the navigation program gave clients a feeling of meaning, worth, hope, and desire (Broaddus et al., 2017; Fuller et al., 2018). Learning from their navigator that adhering to their medication meant they could live a long life increased their sense of hope (Sullivan et al., 2015).

Navigator models positive behaviors and self-efficacy

Clients regarded their navigator as a role model, or embodiment of a goal (Koester et al., 2014), and motivational speaker (Broaddus et al., 2017). Navigators motivated clients to be more accountable for their health (Broaddus et al., 2015) and reinforced skills that enabled clients to manage their care with increasing independence (Broaddus et al., 2017; Fuller et al., 2018; Sullivan et al., 2015). Clients intended to continue engaging in HIV care after the end of the program (Broaddus et al., 2017; Sullivan et al., 2015), and expressed confidence in their ability to do so (Fuller et al., 2018; Parnell et al., 2017).

Clients experience personal reflection and psychological change

The support and insight that the navigators offered helped clients feel optimistic about the future, which for some was a significant shift in perspective (Sullivan et al., 2015). Clients described the timing of the navigator coming into their lives as inspired or ordained, the navigator “finding them when they needed to be found” (Broaddus et al., 2017). When clients shared life experiences and common values with their navigator, the navigator became a personification of transformation with which the client could easily identify (Koester et al., 2014).

Discussion

This meta-synthesis of the experiences of PWH participating in HIV patient navigation elucidates the complexity of the client environment within which navigation occurs, the significance of the client–navigator relationship to the client navigation experience, the reluctance to end the program, and the learned skills and hope engendered as a result of their navigation experiences. The first theme regarding fractured care systems and the holistic social service and medical care support provided by navigators is consistent with our understanding of barriers to social services and health care. Client feelings of hope, empowerment, and self-efficacy as a by-product of participation in navigation emerged during the final stage of analysis as a notable outcome of the navigation process. The value and significance of the client–navigator relationship and the reluctance to leave the navigation program were primary themes across most of the studies, and over the course of our analysis, the relationship clearly emerged as the most salient and overarching theme of the client experience, uniting the studies.

Patient navigation is most often associated with functional aspects of care such as coordinating services and addressing barriers (Bradford et al., 2007; Freeman & Rodriguez, 2011). However, the navigation process also provides critical relational support (Cook, Canidate, Ennis, & Cook, 2018), instrumental in improving client psychosocial well-being and adherence to care (DiMatteo, 2004). A relationship is a feeling or sense of emotional bonding with another person—feeling that one is recognized, appreciated, cared about, understood, and in union with another (Perlman, 1979). The relationship between a navigator and client can provide emotional support and facilitate trust, and it can be much stronger than the typical relationship between a patient and service provider (Davis et al., 2017). Our analysis indicated that clients overwhelmingly endorsed the presence of the navigator in their lives, valued the navigator’s empathy and support of their emotional concerns, considered their navigators as friends and confidants, and they felt they were not alone in their HIV experience. When the navigator was a peer, shared life experiences established trust and respect, which facilitated uptake of care and deepened the relationship. Other research has found that clients prefer peers to deliver emotional support and linkage to care (Cook et al., 2018). In the context of patient-centered care, when a patient feels they are “known as a person” by a clinician, it is significantly and independently associated with improved HIV outcomes (Beach, Keruly, & Moore, 2006).

The client–navigator relationship is not an independent function of navigation, but rather, the relationship is the foundation of and medium through which navigator functions are enabled and services delivered (Freeman & Rodriguez, 2011; Phillips et al., 2014). In our analysis, one of the more significant functions of the relationship was the provision of social support. Social support is defined as the network structure of relationships, functional support (emotional, psychological, tangible, or informational) offered, perceived adequacy of this support, and it is often operationalized by measures of perceived support (Green, 1993). This review found navigators offering all aspects of functional support, and perceived support was evident across the data. The relationship also facilitated engagement in care, and served as a buffer against stigma, outcomes identified in other literature (Burgoyne, 2005; McLeroy, Bibeau, Steckler, & Glanz, 1988; Wohl et al., 2010). In some cases, the client came to see the navigator as a personification of their goals, as a model of health and achievement. These opportunities for personal reflection and transformation, increased self-efficacy, and feelings of hope and personal worth were secondary outcomes of the relationship and participation in the navigation program. Patient empowerment and activation is a natural outcome of navigation due to the patient-centered, strengths-based approach to care coordination and relational support (Carroll et al., 2010; Yosha et al., 2011).

Implications for Practice and Research

The findings from this review highlight a number of recommendations for practice. Regarding navigator training and preparation for practice, strong interpersonal skills may be equally as important as knowledge of medical and social service systems. Programs may consider including or enhancing basic relationship-building skills such as demonstrating empathy, active listening, and communicating care for the client in the navigator training curriculum. It may also be beneficial to hire navigators who are peers of their clients or have shared life experiences. In addition, the program should clearly delineate the role of the navigator, and the navigator should inform the client of the parameters of their relationship, including the time limitation. Intentional planning around phasing the client out of the navigation program may be especially important for clients without immediate, stable social support networks and social capital, including those with a history of incarceration. Finally, continuity across service providers and systems of care is critical when considering developing and implementing an HIV navigation program. Programs should be holistic in design and approach and able to address client needs beyond HIV care. Programs should also consider emphasizing a strengths-based approach to client care and practice, acknowledging the self-determination of the client.

There are a number of research questions identified for future inquiry. Five of the seven studies included a partial or full sample of PWH with a history of incarceration. The current analysis did not intentionally disaggregate the experiences of those with and without a history of incarceration; however, anecdotally we found that clients receiving navigation during their transition from jail into the community may have experienced heightened feelings of personal growth, and further exploration on this topic should be considered. It is also worth exploring whether the amount of time the client spends developing a relationship with their navigator has an impact on HIV-related health outcomes. Likewise, how long beyond the intervention do the impacts of the client–navigator relationship last, and do outcomes change or decrease? Furthermore, are benefits amplified by particular aspects of the relationship between the navigator and client, and more broadly, what are the essential components of interpersonal relationships for public health intervention? Finally, as we identified, navigation can facilitate personal growth, hope, and self-efficacy, which has potential downstream benefits for the client and health system. Future research should consider role of client resiliency and post-traumatic growth in HIV care.

Strengths and Limitations

As the field of HIV patient navigation and care coordination evolves, there is continued need for clearer definitions of models of care. Our review did not define or operationalize HIV patient navigation, as such our search may have inadvertently excluded potentially relevant articles. However, an experienced librarian conducted the literature searches and ensured that our search methods were sound. Five of the seven primary studies were funded under the U.S. Department of Health and Human Services, Health Resources Services Administration, Special Projects of National Significance grant, and among those studies, there are common study locations and dates of data collection. It is unclear whether findings from these studies are independent of one another. It is increasingly common to assess study quality in meta-synthesis (Lewin et al., 2015), and the moderate to high quality of the primary studies lends credibility to our analysis. The method used to synthesize data in this review, thematic synthesis, was developed specifically to assess intervention need, appropriateness, and acceptability (Barnett-Page & Thomas, 2009), and for the practical application of those findings for theory development, program, and research (Ny et al., 2016) which should appeal to programs seeking to implement patient navigation.

To date, no systematic review has been conducted of PWH experiences with HIV patient navigation in the United States. Our review seeks to advance public health research and practice by articulating key experiences and perspectives of PWH, and drawing recommendations that can be applied to the development, implementation, and evaluation of HIV patient navigation intervention and programs. Patient navigation is a systems-level intervention where a fundamental mechanism for action is the interpersonal relationship. The lived experiences of PWH are complex and varied, yet this analysis found that almost universally, the client–navigator relationship was central to their navigation experience and broader quality of life. This review underscores the importance of the relationship within patient-centered approaches for PWH and provides insight into the interpersonal dynamics between a client and navigator. Intensive, multilevel interventions, such as HIV patient navigation are not the brief, easily replicable interventions preferred in public health (Frieden, 2010; Kaufman, Cornish, Zimmerman, & Johnson, 2014). Yet, as long as individuals and communities are marginalized and isolated from health and social service systems, patient-centered interventions such as HIV patient navigation may be a necessary public health strategy to engage and retain the most underserved and vulnerable in HIV care.

Footnotes

Authors’ Note:

Special thanks to James Carey, PhD, Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention, and Elizabeth Rohan, PhD, MSW, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, for their review. This work was entirely funded by the U.S. government. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. There are no conflicts of interest to report. All authors are federal government employees and the content of this report is not subject to copyright in the United States.

ORCID iD

Katherine B. Roland

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