Peer Navigation for Key Populations: Implementation Guide PDF

IMPLEMENTATION GUIDE PEER NAVIGATION FOR KEY POPULATIONS ACKNOWLEDGMENTS The guide was adapted from the HIV Prevention Trials Network (HPTN) 061 Peer Health Navigators Operations Manual, Version 2.0, 15 July 2009, the Key Populations Implementation Science Study – South Africa (2016),* and Building Blocks to Peer Success: A toolkit for training HIV-positive peers (2009), developed by the Center for Advancing Health Policy and Practice at Boston University’s School of Public Health. Contributors to the materials used to develop this guide include Chris Akolo, James Baer, Parinita Bahattacharjee, Kahlib Barton, Meghan DiCarlo, Stephany Kersten, Liore Klein, Kristina Lai, Daniel Levitt, Tiffany Lillie, Giuliana Morales, Steave Nemande, Gnilane Turpin Nunez, Steve Safren, Shauna Stahlman, Virupax Ranebennur, and Brian White. Recommended citation: Peer Navigation for Key Populations: Implementation Guide. Washington, DC: FHI 360/LINKAGES; 2017. This document was made possible by the generous support of the American people through the United States Agency for International Development (USAID) and the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). The contents are the responsibility of the LINKAGES project and do not necessarily reflect the views of USAID, PEPFAR, or the United States Government. LINKAGES, a five-year cooperative agreement (AID-OAA-A-14-00045), is the largest global project dedicated to key populations. LINKAGES is led by FHI 360 in partnership with IntraHealth International, Pact, and the University of North Carolina at Chapel Hill. *Published by the Desmond Tutu HIV Foundation, the Human Sciences Research Council, Johns Hopkins University, Rollins School of Public Health, and the United States Centers for Disease Control and Prevention TABLE OF CONTENTS List of Acronyms.................................................................................i References.........................................................................................37 Introduction.............................................................................. 1 Appendix A. Intake assessment............................................. 38 2. Overview of peer navigation for HIV programs....... 3 Appendix B. Action plan*......................................................... 42 2.1 | Special considerations in working with key Appendix C. Navigator adherence populations..................................................................................4 counseling checklists................................................................... 44 2.2 | The case management team.................................4 Appendix D. Sample confidentiality statement*.......... 48 2.3 | Roles and responsibilities of the navigator....... 6 Appendix E. Sample directory of services.......................50 2.4 | Optional roles................................................................. 7 Appendix F. Sample navigator job description/ 2.5 | Linking service beneficiaries with navigators.. 8 terms of reference....................................................................... 51 2.6 | The beneficiary-navigator relationship................ 8 Appendix G. Tool for transition from 2.7 | Building trust................................................................... 9 navigation services........................................................................53 2.8 | Confidentiality................................................................ 11 Appendix H. Roles and responsibilities of peer outreach 3. Implementing navigation...............................................13 workers, navigators, and case managers.............................55 3.1 | Country/program-specific SOPs.......................... 13 Appendix I. Disclosing your status*.................................... 56 3.2 | Navigation planning.................................................... 14 Appendix J. Activities checklist for 3.3 | Follow-up sessions...................................................... 18 navigation planning and implementation............................57 4. Transition.......................................................................... 30 Appendix K. Sample client flow models*......................... 62 4.1 | Preparation for transition........................................30 Appendix L. Additional references and endnotes......... 65 4.2 | Conducting the last visit..........................................30 5. Managing navigation.......................................................32 5.1 | Hire the right navigators.......................................... 32 5.2 | Training............................................................................ 32 5.3 | Navigator/beneficiary pairing................................ 32 5.4 | Pairing with a new navigator.................................. 33 5.5 | Caseload.......................................................................... 33 5.6 | Supportive supervision............................................. 34 5.7 | Caring for navigators.................................................35 5.8 | Reimbursement for travel and time.................. 36 5.9 | Directory of services................................................ 36 5.10 | Program monitoring and evaluation.................. 36 LIST OF ACRONYMS ART Antiretroviral therapy CBO Community-based organization CD4 Cluster of differentiation 4 DIC Drop-in center FHI Family Health International GBV Gender-based violence HIV Human immunodeficiency virus HTS HIV testing services KP Key population MOU Memorandum of understanding MSM Men who have sex with men OST Opioid substitution therapy PEP Post-exposure prophylaxis PLHIV People living with HIV PN Peer navigation PrEP Pre-exposure prophylaxis SOP Standard operating procedure STI Sexually transmitted infection UIC Unique identifier code WHO World Health Organization 1 INTRODUCTION Linkages Across the Continuum of HIV Services for Key Populations Affected by HIV (LINKAGES), funded by PEPFAR and the United States Agency for International Development (USAID), focuses on key populations (KPs) — men who have sex with men, sex workers, people who inject drugs, and transgender people. In the context of increasing HIV prevalence among key populations and decreasing resources for HIV programming, it is essential that epidemic responses utilize sustainable, effective approaches for reaching, testing, linking, and retaining service beneficiaries in the continuum of HIV services. The use of such approaches is particularly important considering the UNAIDS 90–90–90 goals—that by 2020, 90 percent of all people living with HIV know their HIV status, 90 percent of people diagnosed with HIV infection receive sustained antiretroviral therapy (ART), and 90 percent of people receiving ART are virally suppressed. The HIV cascade is an organizing framework for illustrating how LINKAGES and other programs can improve services from the point at which a beneficiary is reached in the community through viral suppression for those living with HIV. The figure on the following page presents this framework and shows where peer-led interventions can support services along the cascade (Figure 1). Programs are increasingly focusing on the role peers can play in supporting HIV-positive service beneficiaries throughout the cascade, including linking them to care and helping them attend diagnostic and clinical appointments and adhere to their treatment regimens. Peers are people who share similar attributes, such as gender, sexual orientation, age, health condition, or socioeconomic status. Peer-led interventions have become a standard approach in many programs working with key populations. With training and support, KP members can reach their peers effectively with prevention commodities. such as condoms, lubricants, and sterile drug-injecting equipment, as well as information and support for behavior change to reduce vulnerability to HIV. Peers can also help link service beneficiaries to other HIV, health, and social services and to interventions that support positive health outcomes and build social cohesion. The purpose of this document is to provide guidance for programs implementing peer navigation as part of a core package of HIV-related interventions for key populations. It is part of the LINKAGES Peer Navigation Toolkit, which also includes a facilitator’s guide, PowerPoint presentations, and additional resources designed to be used in a variety of contexts, according to local needs. Each program is advised to use the information and tools provided to inform the development of country/program-specific standard operating procedures (SOPs) to ensure that all providers within the service network clearly understand their roles and responsibilities. Peer navigation (PN) SOPs should be based on the unique needs of each country/program, the composition of the teams providing services, and the existing structures providing community- and facility-based HIV services. 1 | PEER NAVIGATION Cascade of HIV Prevention, Care, and Treatment Services for Key Populations ENABLING ENVIRONMENT Human rights Gender equality Zero tolerance for stigma, discrimination, and violence Prevention HIV- Advocacy Newly Diagnosed HIV+ Care and treatment as prevention Known Positive Key populations Initiate Sustain on know status ART ART Ongoing engagement with all KPs on prevention, including Earliest access and adherence to ART for HIV-positive KPs upon HIV diagnosis, access to condoms, lubricants, needles/syringes, and in support of treatment as prevention, and regular STI screening and treatment psychosocial support. Regular STI screening and treatment, HTC, and PrEP for HIV-negative KPs. Community engagement and capacity development LINKAGES also recommends that the training manuals and accompanying tools included in the toolkit be adapted to the capacity-building and implementation needs of a program and its participants. As much as possible, key population members should be involved in the design, implementation, evaluation, and improvement of LINKAGES programs. 2 | PEER NAVIGATION 2 OVERVIEW OF PEER NAVIGATION FOR HIV PROGRAMS Comprehensive HIV programming for key populations includes service provision along the entire cascade. In the first third of the cascade, programs can use a variety of approaches for identifying, reaching, and recruiting individuals to access HIV testing and counseling services. These approaches might include enhanced peer outreach to improve the quality of behavior change communication and increase reach via social networks. The role of peer outreach workers generally ends when a beneficiary accesses counseling and testing services or, for those already living with HIV, when he or she enrolls or re-enrolls in care and treatment.* The goal for peer navigation is that newly diagnosed individuals are supported to enroll in treatment and remain within the service network to achieve viral suppression. Peer navigation picks up from where peer outreach traditionally leaves off. Peer navigators work full time as part of a case management team to assist HIV-positive service beneficiaries in enrolling in and accessing care and treatment services, while supporting them to identify and overcome barriers that interfere with achieving personal health-related goals. Peer navigators can be drawn from the pool of peer outreach workers but should receive additional training to ensure they have expert knowledge of all the relevant facility- and community- based services available for their beneficiaries. Ideally, navigators are peers whose experiences have been similar to those of the beneficiaries. For example, the LINKAGES project typically trains peer navigators who are living with HIV and within a specific KP community, so that they have an intimate understanding of the lived experience of the peers they support. It should be noted that the specifics on who peer navigators are, how they are introduced to HIV-positive KP peers, where they work, how much they get paid, and other implementation issues should be decided by the in-country team, in consultation with the KP community and implementation partners. The KP HIV program may decide that someone other than a KP peer would be best suited to be a peer navigator. For example, where KP networks are limited in size, service beneficiaries may be concerned about disclosure of their HIV status when working with a member of their own key population. For this reason, LINKAGES does not require that navigators be members of the key populations they serve. Before adapting navigator terms of reference for each country context, programs should consult with representatives of KP beneficiaries to ensure that the navigator options reflect their preferences. Criteria for navigator selection should be determined in conjunction with KP members, community stakeholders, facility staff, and other key players. Resources permitting, beneficiaries should be able to choose from a variety of navigators. These options might include community health workers trained in the provision of navigation services. 3 | PEER NAVIGATION * The term “peer outreach worker” refers to a KP individual who is trained to conduct outreach to other members of the same key population. Peer outreach workers may also be known as peer educators, peer leaders, or by other terms. 2.1 | Special considerations in working with key populations Key population members face different challenges in accessing HIV and related services compared to other potential beneficiaries. It is important to keep the following issues in mind when working with key populations. 2.1.1 | Legal barriers and enablers Laws, regulations, and policies can be barriers to effective service access and uptake. In providing support for key populations, it is important to be aware of potential legal barriers and local policies, such as anti-sodomy laws, laws against sex work, and penalties for carrying drugs for personal consumption or drug injection equipment (i.e., needles and syringes). Conversely, many people, including KP members, may not be aware of their individual rights under local law. Programs should train navigators on basic human rights and ensure that they have simple job aids to guide discussions with their beneficiaries. Where possible, programs should also ensure there are links to free or no- cost legal assistance for beneficiaries. 2.1.2 | Codes of conduct To serve as a navigator to HIV-positive peers, navigators must sign a code of conduct. Peer navigators and their service beneficiaries may be members of the same community, and therefore may encounter each other in social settings. To ensure that these navigator-peer relationships are strictly professional and confidential, appropriate codes of conduct in social settings must be articulated, understood, and agreed upon. Codes of conduct should include a clause prohibiting dating and sexual activity between navigators and beneficiaries, as well as a strict no- coercion or bribery clause, given the often criminalized and stigmatized nature of KP experience. 2.2 | The case management team In an ideal setting, peer navigators work as part of a team that addresses a variety of needs. An individual living with HIV may have clinical, psychosocial, diagnostic, mental health, substance use/dependence, gender-based violence (GBV)-related, legal, and other needs. Through the case management approach, a team of individuals works collaboratively to discuss and prioritize beneficiary needs, sharing the responsibility of ensuring that they are met. TEAM COMPOSITION will vary in each country and program based on available resources and capacities. The team might consist of a trained case manager, a clinician (nurse/doctor), and a social worker and a psychosocial counselor, in addition to a peer navigator. In settings where resources are limited, the team may include only a peer navigator, a clinician, and a navigation team supervisor. Recommended practice is that the case management team meets weekly to discuss individual cases, consider problems, and develop solutions to ensure optimal outcomes for each beneficiary. CASE MANAGERS generally have received professional training and have substantial experience supporting beneficiaries’ use of services within a network. Case management is a multi-step process to ensure timely access to, and coordination of, medical and psychosocial services for a person living with HIV and (in some models) his or her family/close support system. This process may involve all or some of the following activities: 4 | PEER NAVIGATION service planning, service plan implementation, coordination, clinical guidance, monitoring and follow-up, case conferencing, crisis intervention, advocacy for services, consultation with providers, psychosocial support, supportive counseling, and beneficiary education. 1 CLINICALLY TRAINED PROVIDERS, including doctors, nurses, and other specialists, provide clinical care. These services are essential for ensuring that beneficiaries receive relevant diagnostic tests, are prescribed appropriate medication, and are effectively monitored in terms of clinical outcomes and overall physical health. SOCIAL WORKERS HELP INDIVIDUALS, families, and groups of people cope with the social problems they face. They are usually proficient in teaching their beneficiaries the skills and mechanisms needed to improve their lives. In addition to providing professional counseling, social workers often serve as liaisons between institutions and collaborate with other health professionals to ensure beneficiary wellness. They may also address legal issues, such as assisting with hearings and providing testimony relating to their beneficiaries. Some social workers engage in research, policy development, and advocacy. They maintain case history records and prepare reports as needed for individuals and institutions. PEER NAVIGATORS have in-depth understanding of specific issues related to key populations. They collaborate with providers in the care network to support beneficiaries to enroll in care and to access and navigate the services they need to maintain healthy lives and achieve their health-related goals. Peer navigators’ duties might include referral to clinical, psychosocial, and other care and support services, accompaniment to appointments (including support with transportation), adherence support, routine appointment reminders, follow-up for missed appointments, and tracking of those lost to follow-up. They generally handle a caseload of 20 to 40 individuals living with HIV, depending on the stage of the epidemic in the area, the quality of health services, and the number of high-need individuals to whom they are providing support. More detailed information on their roles and responsibilities is provided below. This implementation guidance acknowledges that in numerous settings, peer navigators may take on many, if not most, of the roles traditionally assigned to case managers. Programs can determine independently how best navigators can complement existing services, taking into consideration local policies and regulations, navigator capacity, and resources for supportive supervision. 2.2.1 | Complementarity and task shifting In addition to the team members described above, others may be involved in case management, including HIV testing counselors, psychosocial counselors, contact investigators, and care coordinators. Their roles may overlap to varying degrees. Task shifting is an approach to reducing the burden of responsibilities on facility or other staff to improve service access and quality. It involves shifting some duties, such as intake assessment, counseling and testing, or referral, to lay workers, such as navigators. Task shifting ultimately can lead to shorter wait times, greater capacity to manage high client load, cost savings, more efficient use of resources, and improved quality of care. It is particularly helpful for KP service beneficiaries in resource-limited settings who do not have access to a case manager or a social worker. In some cases, navigators may take on some of the duties of facility-based staff as part of a task-shifting agreement developed between a community-based or nongovernmental organization and a public-sector service site. Each program will need to consider all the human resources available within the service network and decide with the various providers where navigation can enhance service access, uptake, and retention. Clearly 5 | PEER NAVIGATION defining the roles and responsibilities of each team member will be critical to the success of case management and peer navigation. For more information on the differences among peer outreach, case management, and navigation, please consult the table in Appendix H. 2.3 | Roles and responsibilities of the navigator While specific services may vary based on the needs of a given program, it is essential that navigators build the trust of their beneficiaries without judgment or prejudice. To do so, navigators and facility-based staff must work together to present themselves to beneficiaries as part of one team. A navigator can be a friend, sounding board, health educator, health care facilitator, guide, coach, advocate, and community resource. Navigators are not medical experts, substance use counselors, mental health specialists, or social workers. A comprehensive list of possible navigator roles and responsibilities is provided below. Many responsibilities may be shared with other providers within the support team. The roles correspond to the latter half of the HIV services cascade. Enroll in care and initiate treatment Refer and link service beneficiaries to clinical, psychosocial, and other support services. Navigators may be matched with HIV-positive beneficiaries shortly after each beneficiary’s positive diagnosis (for more information, refer to 3.2.1, Matching beneficiaries with navigators). Through an initial assessment and planning process, navigators support beneficiaries to access diagnostic and clinical services and initiate treatment. As part of their role, they may walk beneficiaries through the initial registration at a service site. They should have extensive knowledge of the health, psychosocial, and other support services available in their area and beyond. Navigators ensure that service beneficiaries are aware of nutrition, peer support, legal aid, psychological, GBV, and case management services and receive the necessary support to access these services. Liaise with health and other social service providers as needed.* One of the first steps of a PN program is establishing how peer navigators will work with the staff at project-supported and/or referral health facilities where HIV-positive peers seek services. Overall, navigators support beneficiaries to build an open, trusting relationship with their healthcare providers and other service providers, helping them overcome communication, transportation, and other barriers. They can organize weekly or biweekly support groups for service beneficiaries, assist group facilitators, and introduce discussion topics. A navigator may liaise directly with a service beneficiary’s clinician, social worker, health educator, legal support provider, and other providers to help ensure effective access to all relevant services, if such support is consistent with the SOPs of the KP program and is agreed upon by both the beneficiary (via informed consent) and the service facility. Navigators also maintain strong relationships with clinical and other support staff and help ensure, to the best of their ability, that the services to which they refer beneficiaries are non-stigmatizing, client-friendly, and confidential. Sustain on treatment Support service beneficiaries to adhere to their treatment regimens. Working in tandem with case managers, navigators support their beneficiaries to adhere to treatment independently. They provide training on treatment literacy to help beneficiaries understand the importance of treatment and viral suppression. They also help each beneficiary identify challenges to adherence and develop a plan for adhering to his or her treatment regimen (using the Life Steps approach).+ Support may involve a combination of counseling, goal-setting, tips, suggestions, and personal strategies. 6 | PEER NAVIGATION * Each program should develop a memorandum of understanding (MOU) between community-based partner organizations and treatment facilities to outline the roles and responsibilities of navigators and other providers collaborating on navigation. This MOU should include a client flow algorithm (see Section 3.1). + LINKAGES recommends the use of the Life Steps adherence counseling approach, described in Section 3.3.2, to support service beneficiaries to adhere to their treatment plans and achieve other important goals. Navigators provide practical advice about medication-taking cues, medication refills, clinical visits, options for obtaining medical care and treatment, side effect management, reminders, and organizational tools that have worked for them. Support may include regular calls and messages, accompaniment to appointments, evaluation and adjustment of adherence plans, and delivery of medication, as needed. Navigators may also periodically visit service beneficiaries at home, conduct pill counts, and help them interpret CD4 count and/or viral load test results. Provide counseling and emotional support. Navigators work in conjunction with other members of the case management team to provide basic counseling and support to enable their beneficiaries to navigate the continuum of HIV services, adhere to treatment, and live positively. Using a hierarchy of needs approach, which suggests that the most basic level of needs must be met before an individual will strongly desire (or be motivated to address) their secondary or higher-level needs, navigators help beneficiaries prioritize needs and provide them with appropriate support. (See 3.2.2, The first meeting, for more information on this approach.) Navigators are skilled in recognizing complex cases and understand when to refer beneficiaries for professional counseling and support. They may also host regular peer support groups to build social cohesion and participation and may help beneficiaries advocate for policy changes, services, and their individual rights Give feedback and support to team members. Navigators are positioned to receive first-hand information from beneficiaries about challenges in accessing services, breaches of confidentiality, and feedback on the services provided within the network. They participate in and report on each case at weekly consultation meetings the case management team holds to identify challenges and solutions. They also participate in weekly or biweekly supportive supervision and check-in meetings that supervisors hold to determine how things are going and to address navigators’ psychosocial and other related needs so they can optimize performance and job satisfaction. Navigators may provide technical support for the design or redesign of community- and facility-based interventions to ensure that they are culturally relevant, appropriately tailored to the needs of their service beneficiaries, strategic, and accessible. 2.4 | Optional roles Some programs may have the capacity and permission from the government to train and certify their navigators to serve as qualified HIV counselors and testers. Navigators who are both from the KP community and living with HIV intimately understand the service network and are strategically poised to provide counseling and testing to service beneficiaries. Navigators may take on the following additional roles and responsibilities if doing so is considered beneficial to a program. Reach/Recruit Conduct community-based outreach. Some programs may choose to have peer navigators who also function as community outreach workers. Their responsibilities might include conducting individual- and group-level behavior change communication sessions in hot spots and other locales, providing commodities such as condoms and lubricants, and referring beneficiaries in the community to HIV counseling and testing. Test Provide counseling and testing services. Navigators may refer partners of beneficiaries or other individuals to mobile or fixed testing sites at public or community-based facilities, or provide community-based testing directly (using oral or finger-prick testing, with referral for confirmation at a facility). Navigators may also 7 | PEER NAVIGATION accompany individuals to attend testing services. If not providing testing services directly, they may provide a directory of available testing services and/or guidance on where beneficiaries can access more information by phone, Internet, or in person at drop-in centers (DICs) or other client-friendly sites. Provide tailored post-test counseling and support to service beneficiaries. Navigators who conduct counseling and testing can provide strategic behavioral communication, motivational counseling, and commodities, including condoms, lubricants, and safe injection equipment. They can emphasize routine testing and consistent use of condoms and lubricants with sexual partners. They can also support service beneficiaries to engage partners and children at risk in accessing HIV testing services. Assist in partner notification. Navigators may assist in partner notification services, which is also known as disclosure or contact tracing. Partner notification is defined as a voluntary process whereby a trained provider asks people diagnosed with HIV about their sexual and/or drug injecting partners and then, if the HIV-positive client agrees, offers these partner(s) HIV testing services (HTS). Partner notification is provided using passive or assisted approaches. Whether or not navigators are involved in testing, they should understand the different testing modalities in their local context and be prepared to provide basic information about window periods and where individuals can be tested. 2.5 | Linking service beneficiaries with navigators A beneficiary may be linked to a navigator in different ways, depending on the client flow algorithm for a given program and the configuration of its program/case management team. Service beneficiaries may be informed about the role of navigators during HIV post-test counseling or may learn about it later from a program officer or another team member. It is important to provide service beneficiaries with options for their care, including the option not to be linked to a navigator. For those who wish to be linked, beneficiaries should be able to choose from a variety of treatment facilities, including those based in DICs and the public or private sectors. One option is for a case manager or another person to discuss navigator assignment with the beneficiary and, based on an initial assessment, determine together which navigator may be best suited to the beneficiary’s needs. This approach can help ensure that peer navigators’ caseloads are balanced. Confidentiality is critical at this stage. Beneficiaries should be informed that their health and other information will be kept strictly confidential and that navigators will have access to their information on a need-to-know basis. Beneficiaries should have the option to determine what information they are willing to share with a navigator throughout the process. Voluntary, assisted partner notification could also be offered to the newly diagnosed peer to ensure that partners receive HTS as well. 2.6 | The beneficiary-navigator relationship In the early stages of support, navigators work with each beneficiary to identify goals, develop action plans to meet those goals, and build the necessary skills so that service beneficiaries can address their own needs over time. Navigators must have in-depth knowledge of local services and must know how to link their beneficiaries to those services based on individual needs. In the absence of a case manager, navigators may need to establish and maintain contact with service providers, organizations, and facilities and to keep their beneficiaries informed about changes in personnel and services. Scheduled follow-up visits will provide opportunities to reassess needs and modify action plans accordingly. In the early stages of support, navigators work with each beneficiary to identify goals, develop action plans to 8 | PEER NAVIGATION meet those goals, and build the necessary skills so that service beneficiaries can address their own needs over time. Navigators must have in-depth knowledge of local services and must know how to link their beneficiaries to those services based on individual needs. In the absence of a case manager, navigators may need to establish and maintain contact with service providers, organizations, and Flexibility is key facilities and to keep their beneficiaries informed about changes in personnel and services. Scheduled follow-up visits Needs, barriers, goals, and priorities will will provide opportunities to reassess needs and modify action vary by individual and may be dynamic. plans accordingly. In some cases, service beneficiaries may not have many challenges to address, and regular support may be required for only a few weeks. Beneficiaries who have few or no needs may transition from PN support until they need it again in the future (see Section 4 on transition for more information). Other individuals may need intensive support in the early stages and may eventually develop the skills and capacity to manage their care independently. Some individuals may achieve self-sufficiency within the first few weeks, but may later experience challenges that require intensive support. Individuals with complex situations may require long-term support. For example, an individual may be dealing with multiple challenges that make it difficult to adhere to his or her medical appointments and/or treatment, such as homelessness, violence, substance use or dependence, or difficulty attending appointments during normal business hours. Support for complex cases may be needed for a navigator’s entire period of employment. Programs should have a standard operating procedure that determines how often and by whom a stable beneficiary should be contacted to ensure his or her needs are being met. Sample SOPs for contact frequency are provided in Section 3.3.3, Differentiated models of service delivery. 2.7 | Building trust Building rapport and trust with beneficiaries is vital to motivating change. If beneficiaries do not trust their navigators, they will be less likely to share important details, express any discomfort, and adhere to guidance. Depending on a beneficiary’s background, personality, and other factors, it may take time to build the trust required to discuss more personal and sensitive issues. Navigators should pay attention to the content of what a beneficiary is sharing (some will share only surface-level details at first) and his or her body language, which will be important indicators of how much the beneficiary is ready to share. Navigators can consider the following tips for strengthening trust with their beneficiaries.3 Start small. Before delving into a beneficiary’s biggest problem, navigators should offer useful information, positive feedback, or encouragement. It may help to try an intervention on a smaller issue early in the process. Navigators should attempt to address only problems they are reasonably confident they can handle, and they should be forthright about how much experience they have on a specific issue. If necessary, navigators can suggest that they will follow up on an issue to obtain further guidance or can refer the beneficiary to someone with substantial knowledge/experience. These steps will help build confidence in the relationship. Treat the beneficiary with respect. From the very first contact, it is critical that navigators treat their beneficiaries with respect. Navigators should review beneficiary files before meeting, meet at appointed times and locations, start sessions on time, return calls promptly, present themselves professionally, and have the necessary resources to be properly prepared for each meeting. The LINKAGES Peer Navigation Training Toolkit provides modules on active listening and counseling skills. 9 | PEER NAVIGATION Active listening is a way of engaging an individual that focuses entirely on what he or she is saying. It confirms understanding of both the content of the message and the emotions and feelings underlying the message to ensure that understanding is accurate. The characteristics of an active listening strategy include the following: Being collaborative and nonjudgmental Avoiding overstating or understating Using the language of the beneficiary or similar language The following graphic depicts the flow of an active/reflective listening strategy, to be used when discussing behavioral change with beneficiaries. There are three levels of listening (and responding), which include:4 Simple – Repeating, rephrasing; staying close to what the beneficiary has said Amplified – Paraphrasing; testing the meaning/what is going on below the surface Reflection of feelings – Emphasizing the emotional aspect of communication What listener Words Words What Words thinks speaker listener speaker speaker speaker uses hears means uses means When reflective listening is used correctly, beneficiaries are more likely to feel acknowledged and valued. Effective use of reflective listening will contribute to a relationship in which the beneficiary is more willing to deepen the conversation, build trust, and move toward making long-term change. A note on self-disclosure Disclosing personal information may be a helpful way to build rapport. Some beneficiaries will appreciate learning from navigators’ personal experiences and how they cope with challenges. However, navigators should be cautious not to dominate conversations with their personal stories. Too much disclosure, done too early, can inhibit beneficiaries from feeling comfortable sharing. 2.7.1 | Stigma, discrimination, violence, and security Stigma and discrimination against key populations are commonplace. Substantial evidence also shows that stigma in health facilities and by law enforcement services is particularly common and that it creates significant barriers to service access and redress for abuse. Global evidence suggests that key populations have an elevated risk of violence and abuse and that these experiences are common.5,6 Abuse can take various forms, including physical, sexual, psychological, and economic. Key populations may experience violence, harassment, and/or blackmail from sexual or domestic partners, sex work clients, law enforcement officials, community members, 10 | PEER NAVIGATION and even family members. 2.7.2 | Language and terms Many terms commonly used to describe key populations are derogatory or outdated. Key population members may also prefer certain terms. 2.7.3 | Mobility and hidden populations Some key populations, particularly sex workers, are highly mobile. Others, due to high levels of perceived and/or actual stigma, remain hidden and are averse to being associated with a KP-focused program or DIC. Programs need to be adaptive and responsive and consider ways that service beneficiaries who change locations can be followed up effectively. Options include assigning unique identifier codes, mobile phone- based support (i.e., reminders, notifications), and coordination with other programs in the region/country where applicable. These aspects should be considered in advance of program implementation and included in the program design. 2.7.4 | Community empowerment and social cohesion As part of a comprehensive program, navigators can play an important role in empowering key population members and groups. Community empowerment is “a collective process that enables key populations to address the structural constraints to health, human rights, and well-being; to make social, economic, and behavioral changes; and to improve access to health services.” Community empowerment is critical to improving the health and well-being of key populations and important to supporting services and facilities led by organizations of people from key populations. Navigators should understand the meaning of social cohesion and social participation, and why they can be important components of an effective HIV prevention, care, and treatment response. Where possible, navigators should be aware of opportunities for KP service beneficiaries to form groups, join groups, and participate in local events that build community resilience, increase service uptake, and reduce stigma and violence, among other positive outcomes. 2.8 | Confidentiality Navigators will need to be aware of the various ways that beneficiary confidentiality can be compromised, including in person, on the phone, through email and text messaging, and in the handling of hard copy documents. Depending on the design of the program and the agreements established with network facilities and providers, navigators may at times work offsite and interact on service beneficiaries’ behalf with a range of individuals, which can increase the risk of breach of confidentiality of beneficiary information. 11 | PEER NAVIGATION 2.8.1 | Measures for protection Programs should ensure that navigators receive sufficient training and follow strict procedures to safeguard beneficiary information in person and through digital/mobile media. Beneficiaries should be given the option of choosing to receive text messages, voicemails, and/or emails. Programs should also develop procedures for ensuring that navigators do not remove materials with beneficiary identifying information from program sites. Navigators who meet service beneficiaries offsite should not carry anything that has a service beneficiary’s contact information, including names, numbers, addresses, or other means of contact (e.g., Facebook, WhatsApp). If a beneficiary provides change of contact information while meeting with a navigator in the field, the navigator should ask the beneficiary to come to a service site (or call the navigator later at the site) to update the site’s official contact register. In addition, because navigators may often interact with facility staff, programs may need to develop agreements with service sites on the sharing of beneficiary information. Beneficiaries will need to be asked for consent for each level of sharing between providers and service sites. Navigators may be members of the same community as their service beneficiaries, and therefore may encounter service beneficiaries in social settings. They should take care in approaching service beneficiaries during these situations and should be careful not to reveal a beneficiary’s participation in the program to anyone without the express consent of the beneficiary. Service beneficiaries and navigators may have a preexisting relationship or share acquaintances. Every effort should be made to ensure that the navigator and beneficiary are comfortable in their working relationship. Where necessary, it may make sense to reassign navigators if relationship boundaries are unclear or stressed. Each program should have a system in place to address any breaches in confidentiality. Navigators who breach confidentiality should be dismissed, and programs may want to consider supporting legal action or another recourse based on local policies or laws. Programs also need to have measures in place to protect beneficiaries if a confidentiality breach has implications for their safety and well-being. Effective implementation of peer navigation requires several elements to be in place prior to initiation. The first NOTE: A sample confidentiality statement is provided in Appendix D. Programs can adapt this statement to requirement is a clear understanding of how beneficiaries will flow through the continuum of care from the point their context (inserting local laws, procedures, and/or penalties as appropriate). Programs should ensure that at which they are diagnosed through ongoing maintenance for treatment adherence and viral suppression. navigators sign two copies — one for the program files, and one for the navigator to maintain for his or her own records. 12 | PEER NAVIGATION 3 IMPLEMENTING NAVIGATION Programs may want to develop a visual schematic of this client flow and identify which individuals and/or agencies will require clarification of their roles and responsibilities as part of the case management process. Some examples of client flow models are provided in Appendix K., Sample Client Flow Models. It may also be necessary to develop formal agreements with referral sites providing clinical, psychosocial, and other services, to ensure that peer navigator roles within the process are clearly understood and to determine to what degree navigators will have access to beneficiary information. Confidentiality is critical along the entire continuum, from messaging, to record keeping, to discussing cases in case management meetings. This guide provides recommendations on maintaining confidentiality in Section 2.8, Confidentiality. Navigation prerequisites Before implementing peer navigation, programs should consider the following: The feasibility of implementing peer navigation with government and community partners (assess factors such as government buy-in and referral/counter-referral) The number of peer navigators required to meet program needs Budgeting for full-time navigators, recurring costs (such as transport and communications), and supervision Ensuring there are sufficient and competent staff to supervise the navigators The location(s) where peer navigators will be based Which facilities/providers will need to be part of the service network The kinds of agreements (e.g., memoranda of understanding) required to ensure smooth operation and client flow Refer to Appendix J, Activities Checklist for Navigation Planning and Implementation, for a complete overview of the steps required to plan and implement a peer navigation program. 3.1 | Country/program-specific SOPs Programs should develop standard operating procedures for navigation and support to ensure that each member of the case management team (including the navigator) understands his or her roles in the context of counseling, referral, linkage, enrollment, retention in care, and provision of professional services (such as mental health and drug rehabilitation services). The SOPs should explain clearly the process for determining how and when service beneficiaries are assigned to a navigator, rules of engagement, expectations in terms of privacy and confidentiality, focal point collaboration at referral sites, and standards for meeting, referral, support, follow-up 13 | PEER NAVIGATION actions, and timing. In some cases, navigators may be based at DICs or community-based organization offices. Others may be based at public-sector facilities. LINKAGES recommends the development of visual client-flow algorithms that include all major service providers to ensure navigators and service sites understand how beneficiaries should navigate within the network. Navigators should be trained in following these SOPs, and the SOPs should be periodically reviewed and updated as needed, with refresher training provided to the navigators after updates. (Refer to the Jamaica Peer Navigation Protocol, included with this toolkit, as an example of an overarching set of SOPs for navigation.) 3.2 | Navigation planning 3.2.1 | Matching beneficiaries with navigators Programs can determine how best to match beneficiaries with navigators based on beneficiary preferences, team composition, local regulations, and available resources. Some beneficiaries may need time after a positive diagnosis to adjust to their health status before meeting with a navigator. Others may wish to have prompt support so that they can ask questions and gain a better understanding of what a positive diagnosis entails. Ideally, programs should have a case manager or coordinator who can work with beneficiaries shortly after diagnosis to assess their needs, discuss available options, and jointly determine who might be an appropriate navigator (taking into consideration skills, strengths, and caseloads). Before matching a beneficiary with a navigator, it is important to obtain informed consent, ensuring that the beneficiary is aware that his or her positive diagnosis and some personal details will be shared as part of the process. If the beneficiary opts out or does not Where possible/applicable, service beneficiaries should have a need for navigation, the case be able to choose: manager, counselor, or other assigned the gender of their navigator team member should ensure that the beneficiary is provided with all relevant whether the navigator comes from their key population information and resources based on local to receive support from another person, such as a case management SOPs. Because some counselor or social worker beneficiaries may develop challenges in to opt out of support entirely the future, a coordinator for the program should check in periodically with those who opt out of navigation to determine potential or emerging needs and whether or not navigation may be needed or desired. Specific guidance on this process is provided in 3.3.3, Differentiated models of service delivery. For those who opt in, the case manager, post-test counselor, or other assigned individual can provide the beneficiary with a navigator’s contact information and can link the beneficiary to the navigator via phone to arrange a day, time, and place to meet. With the beneficiary’s consent, the navigator may also be provided with the beneficiary’s contact information for follow-up at a time determined by the beneficiary. Where navigators are based at DICs or the same facilities that provide testing, individuals may be connected directly to a navigator on the same day, or on a later day, depending on their preference. 3.2.2 | The first meeting The first navigation meeting should be focused on building a relationship with the beneficiary. Navigators should be cautious about moving too fast or trying to cover everything. Beneficiaries will often indicate either 14 | PEER NAVIGATION through verbal or nonverbal communication how comfortable they are and how much they would like to discuss in the first session. It is critical to keep in mind the guidance provided in Section 2.6 on building trust, including starting small, treating the beneficiary with respect, and utilizing active listening skills. Navigators may need to plan a day and time for a second meeting to begin discussing beneficiary needs, priorities, and support. At a minimum, navigators may wish to accomplish the following in the first meeting: 1. Introduce themselves 2. Explain their role 3. Provide emotional support and encouragement as needed 4. Discuss treatment initiation and reiterate treatment literacy messages addressed in the post-test counseling session 5. Provide contact information 6. Agree on a day, time, and place for the next meeting 3.2.3 | The second meeting By the second meeting, navigators may begin to explore a beneficiary’s specific situation and needs. In programs where a trained case manager is part of the case management team, he or she may conduct an intake assessment for newly diagnosed beneficiaries. The Intake Assessment Tool (Appendix A) is designed to collect information about the beneficiary that will help identify and prioritize an action plan based on a hierarchy of needs (see Figure 1). For example, immediate physical and medical needs, such as co-morbidity, housing, and safety, usually take precedence over emotional needs. The case manager may then meet with the navigator to discuss the beneficiary’s needs, including areas where the beneficiary may require support. SELF-FULFILLMENT NEEDS achieving one’s full potential, including creative activites SELF-ACTUALIZATION ESTEEM NEEDS prestige, feeling of PSYCHOLOGICAL accomplishment NEEDS BELONGINGNESS AND LOVE NEEDS achieving one’s full potential, including creative activites SAFETY NEEDS security, safety BASIC NEEDS PHYSIOLOGICAL NEEDS 15 | PEER NAVIGATION food, water, warmth, rest Figure 1. Maslow’s Hierarchy of Needs In programs where a case manager or nurse is not available to conduct an intake assessment, the navigator may take on this role. The sample intake assessment provided in Appendix A is intended to guide a conversation, rather than to serve as a data collection tool. There are many examples of intake assessments online, and this tool can be modified based on the available services in the community, the capacity of the navigators employed by the program, and the typical needs presented by beneficiaries. The intake assessment should include information about: Basic health needs Transportation Housing Employment Nutrition Current health status Access and utilization of health care (including HIV treatment and care) HIV risk behaviors and current partners Current or recent psychosocial challenges Current and recent substance abuse issues Each service beneficiary comes with unique knowledge, strengths, resources, needs, and challenges. When prompted with probing questions, beneficiaries are often capable of identifying what may prevent them from accessing HIV and related services. Some beneficiaries may underestimate the structures and individuals already in place to support them throughout their care. In the second meeting, navigators can work with their beneficiaries to identify key barriers to access for clinical and nonclinical services and facilitators that may help them overcome those barriers. Navigators should keep the following questions in mind: What does the beneficiary already know? What are the beneficiary’s attitudes and beliefs? How ready is the beneficiary to address his or her challenges and needs? It may take several visits before a beneficiary is prepared to go through part or all of the intake assessment. Navigators should be patient and allow their beneficiaries to set a pace that is comfortable for them. When the beneficiary is ready for a more in-depth discussion, navigators can use the following suggestions to guide the conversation: 1. Ask open-ended questions about the beneficiary’s perspective on his or her infection and treatment, and what needs he or she may have. 2. Gauge the amount of information the beneficiary can/wants to receive. (Beneficiaries who are newly diagnosed have just received a potentially life-altering diagnosis and are likely to be processing a substantial amount of new information; they may be overwhelmed by too much information.) 3. Provide information in response to goals, concerns, and problems discussed. 16 | PEER NAVIGATION 4. Ensure that the beneficiary understands the meaning of the information provided. 5. Conduct the intake assessment (if not already conducted). 6. Work with the beneficiary to establish HIV treatment and care priorities and to schedule medical and diagnostic appointments as needed. 7. Assess whether the beneficiary has adequate social support. 8. Discuss other referral needs and options. 9. Agree on a plan of action for the immediate future (if not already determined with the case manager). See below for more guidance on action planning. 10. Deal with the beneficiary’s emotional reactions (and your own).* 3.2.4 | Action plan development Assessing service beneficiary needs may take time, and some beneficiaries may feel more comfortable discussing them after the first couple of sessions. By the second or third meeting, navigators can work with their beneficiaries to develop strategies to ensure they can effectively access the services they need. Information gathered during the assessment can feed directly into the development of an action plan (Appendix B). The Action Plan Tool provides a structure for identifying all the possible needs a beneficiary may have. Together, the navigator and beneficiary can prioritize which needs must be addressed immediately and which can be addressed later. If the action plan was not developed during the first visit, navigators should begin by reviewing the intake assessment with their service beneficiaries. Culturally and KP-specific tools for social behavior change communication may assist navigators with action planning at this stage. In developing the action plan, navigators should support their service beneficiaries to identify their own needs. Navigators can make suggestions, but prioritization and goals must be based on what the beneficiary identifies and decides. In some cases, beneficiary needs and barriers may have little to do with their HIV diagnosis; navigators should respect service beneficiaries’ choices and do their best to support them. They should assist each beneficiary to develop realistic short- and long-term goals and objectives and to determine appropriate steps and timelines for achieving them. Together, the navigator and beneficiary can brainstorm potential obstacles to achieving these goals and objectives and strategize ways to overcome them. 3.2.5 | Linkage to care and treatment One of the principal roles of the navigator is to help ensure that beneficiaries are effectively linked to care and treatment services. This process will vary by program and should follow locally adapted SOPs. At a minimum, navigators will need to ensure that beneficiaries: have scheduled necessary diagnostic and medical appointments are aware of the location of their appointments, whom they will meet, and what will be done 17 | PEER NAVIGATION *Modified from Quality assurance measures for voluntary counseling and testing services. Washington: IMPACT/AIDSMARK; 2001. have the means to attend to their appointments on time, including transportation, time off work if needed, daycare, etc. are reminded of their appointments 24 hours before they take place have attended their appointments at the appropriate times are contacted in the event they did not show for an appointment (within 24 hours) The action plan that navigators develop with their beneficiaries can address potential obstacles for these initial appointments. Adherence counseling and addressing complex issues, including GBV and mental health, are discussed below. 3.3 | Follow-up sessions In the first session, service beneficiaries and navigators decide together when their next session will be and the frequency and times of the sessions thereafter. Initially, meetings with service beneficiaries are likely to be more frequent (i.e., once a week) to help them adjust to an HIV diagnosis, attend appointments, obtain prescriptions, and address immediate needs and challenges. The first few visits also tend to be the most intensive, particularly for service beneficiaries with multiple or complex needs. During these sessions, navigators should encourage, support, and help build the skills of their beneficiaries to address those needs, provide referral and linkage to available services (see below), and follow up to ensure beneficiaries access the services. Navigators and beneficiaries can review and update beneficiaries’ action plans as appropriate. Over time, meetings may become less frequent (i.e., once a month). In subsequent meetings, navigators and service beneficiaries may review action plans, address any adherence issues, and ensure that medical and related appointments are maintained. After service beneficiaries begin ART, navigators can also check whether their service beneficiaries have adjusted well to taking routine medication and are adhering to their regimens. Navigators should meet with the case management team weekly to review current cases and discuss recommendations. (Case management meetings are discussed in further detail in Section 5.6.2.) It is important to note that the goal of navigation is more than just providing direct assistance. It includes helping service beneficiaries to develop skills, identify their own needs, and access services on their own. Navigators should continue to follow up with service beneficiaries who identify few or no goals at the initial assessment, to assist with emerging needs. 3.3.1 | The minimum package of services The minimum package of services that may occur during a navigation session is as follows: RELATIONSHIP BUILDING: Spend extra time building rapport with the beneficiary. Rapport building is critical for the success of the navigator-beneficiary relationship, particularly during the first few visits. GENERAL HEALTH EDUCATION: Help improve the beneficiary’s knowledge of the factors associated with his or her own health. For example, if a beneficiary identifies that he or she has a chronic ailment, such as diabetes or asthma, the navigator can share information about that condition. Navigators should use their knowledge of local resources to link service beneficiaries to the appropriate services for their health needs. 18 | PEER NAVIGATION FOCUSED HIV EDUCATION AND COUNSELING: Provide education about HIV, such as how the virus is transmitted, medication management, and dealing with the psychosocial implications of living with HIV. COACHING ON COMMUNICATION WITH MEDICAL OR SERVICE PROVIDERS: Provide information on how and where to seek an appointment. Assist individuals to become self-reliant, empowered, and proactive in seeking care and meeting their needs and to communicate clearly and assertively with their service providers. SUPPORT FOR SERVICE BENEFICIARIES TO ADHERE TO THEIR TREATMENT REGIMENS: Support the beneficiary to obtain treatment adherence self-efficacy using the Life Steps (see Section 3.3.2) approach. The navigator can employ a combination of counseling, goal setting, tips, suggestions, and strategies, including review and revision of the treatment adherence plan and/or delivery of medication. He or she may assist the beneficiary to link to a peer support group. Navigators can provide practical advice about medication-taking cues, reminders, and organizational tools that they or others have found effective. APPOINTMENT REMINDER: Contact service beneficiaries to remind them of an upcoming scheduled meeting or an upcoming appointment for other services. Use the beneficiary’s preferred method of contact. ACCOMPANYING BENEFICIARIES TO APPOINTMENTS: Beneficiaries may want navigators to accompany them to, for example, appointments for HIV care, substance abuse treatment, mental health care, medical check-ups, diagnostics, or social support services addressing GBV, legal, or other issues. SUPPORT FOR POSITIVE HEALTH, DIGNITY, AND PREVENTION: Help increase the self-esteem, confidence, and ability of beneficiaries to care for themselves and to avoid passing HIV to others. (Refer to Section 3.3.4, Positive health, dignity and prevention, in this guide for more information.) COMMODITY PROVISION: Provide condoms and lubricants, and sterile injecting equipment, as needed. Where possible, navigators should link with donor-supported interventions to forecast condom, lubricant, needle, and syringe needs and ensure a regular supply is available through free distribution, social marketing, or other means in common outlets, service provision sites, and venues. ASSISTANCE WITH SOCIAL GRANTS: Assist beneficiaries in understanding and applying for applicable social grants, welfare opportunities, and other potential support. ASSISTANCE WITH LEGAL SERVICES: Assist beneficiaries in identifying and contacting appropriate legal service agencies and individuals as needed. CRISIS RESPONSE: Help beneficiaries obtain immediate services (medical, housing, or mental health). Note: navigators are not intended or trained to be crisis managers or “hotlines” and should discourage service beneficiaries from seeing them in this way. (Boundaries should be clarified early on). However, there may be situations in which a beneficiary contacts a navigator for emergency assistance and the navigator can assist in connecting him or her to appropriate help. Sites and navigators should establish procedures for dealing with these situations in advance, and navigators should practice setting clear boundaries and following standard procedures when responding to beneficiaries in crisis. 3.3.2 | Adherence counseling and the Life Steps for ART Adherence tool For service beneficiaries who have begun or are about to begin treatment, it is critical to develop plans for ensuring they can manage their treatment effectively and remain adherent to their drug regimens. This guide includes an Adherence Counseling Checklist (Appendix C) for the first adherence counseling meeting and a different checklist for subsequent meetings. The checklists provide a simple guide for navigators to use with their beneficiaries to ensure they have addressed all possible adherence-related needs. The Life Steps Approach Life Steps can be done as one long counseling session (taking about an hour), or it can be broken up 19 | PEER NAVIGATION and done over the course of a few counseling sessions. Service beneficiaries are supported to identify adherence goals for each step, possible barriers that could prevent them from achieving their goal(s), and a plan and a backup plan for overcoming potential barriers. LIFE STEPS: 13 STEPS 1 Educate about adherence. 2 Plan for transportation to the clinic. 3 Plan for keeping appointment dates and obtaining medication. 4 Formulate a daily medication schedule. 5 Plan for storing medications. 6 Plan for obtaining medications when away from home. 7 Identify social supports. 8 Identify motivation for adherence and create association with reminders. 9 Plan for coping with medication side-effects. 10 Plan for communicating with treatment team. 11 Prepare for taking medication when using substances (e.g., drugs, alcohol). 12 Prepare to cope with slips in adherence. 13 Review all plans. As a supplement to the checklists, this guide also includes the Life Steps for ART Adherence tool. This tool provides a systematic way to support service beneficiaries to identify barriers to adherence and problem-solve ways to address those barriers should they arise. The idea is to help service beneficiaries develop a plan and consider a backup plan should the first plan fail. The steps are integrated in the Adherence Counseling Checklist, but are expanded upon in the tool. Please refer to the Life Steps manual included as part of the Peer Navigation Training Toolkit for full instructions on the development and maintenance of plans for each beneficiary. Navigators should be familiar with the steps and should ensure that they address each step with their service beneficiaries. The approach has the following features: 13 steps Each step focuses on addressing common barriers to adherence One long counseling session (~ 1 hour) or a few shorter counseling sessions Each Life Step follows a typical format, referred to as A-B-C: A. Identify the adherence goal. B. Identify the barriers to reaching the goal. C. Make a plan and a backup plan for overcoming the barrier. Ideally, the beneficiary (or navigator) writes down the agreed-upon plans for each step during the session. At the 20 | PEER NAVIGATION end of the session, the beneficiary can take a copy of the plans home for review and follow-up. In some cases, due to concerns about unwanted disclosure or potential violence, some service beneficiaries may prefer not to carry anything home with them. Navigators should be sensitive to this choice and should discuss alternative ways of reminding beneficiaries of their plans and backup plans. Based on the discussions that arise from the use of the Life Steps tool, beneficiaries may wish to alter their action plans. Combined, the action plan, Adherence Counseling Checklist, and Life Steps adherence plan ensure that all needs across clinical, psychosocial, and other areas have been discussed, solutions have been developed, and timelines to achieve goals have been established. 3.3.3 | Differentiated models of service delivery As previously noted, each beneficiary will have different needs that may change over time. If a program provided the same services the same way on every encounter, it would be difficult to meet individual needs effectively and efficiently. Differentiated service delivery is a client-centered approach that simplifies and adapts services to reflect the preferences and expectations of each beneficiary, while reducing unnecessary burdens on the health system. By providing differentiated services, programs can focus resources on beneficiaries most in need and provide all beneficiaries with individualized care. The World Health Organization’s (WHO’s) guidance is that everyone who is diagnosed with HIV should immediately start treatment. However, even some countries with such test-and-start policies have been slower to operationalize them. Peer navigators may find that some of their HIV-positive beneficiaries are not on ART. Regardless of their treatment status, beneficiaries will also vary in terms of the level of support they require to remain within the continuum of services. Some will require minimal support, if any, and can be classified as low- need at a given time. Others may require more intense and/or frequent support and could be classified as high- need. Determination of low-versus high-need classification may be made during the intake assessment, based on the development of individual action plans. Note that need levels may increase or decrease over time, depending on emerging issues or changes in circumstances. Pre-ART beneficiaries Beneficiaries who are not yet on ART may have several issues that need to be addressed to help them manage their HIV diagnosis, health, and related circumstances. For example, a pre-ART beneficiary may be classified as high-need if he or she is dependent on a substance, homeless, experiencing GBV, highly malnourished, not earning income, or struggling to make appointments. High-need beneficiaries may need to meet with navigators more often and may require multiple referrals and accompaniment and/or more frequent checking in. Beneficiaries on ART Similarly, beneficiaries on ART may have diverse needs depending on their circumstances. The WHO has developed a classification system for individuals on treatment that determines whether their treatment is stable (low-need) or unstable (high-need). The WHO defines individuals on ART as stable if they have ALL the following characteristics:8 On ART for at least one year, AND No adverse drug reactions requiring regular monitoring, AND No current illnesses or pregnancy, AND Good understanding of lifelong adherence, AND Evidence of treatment success: Two consecutive undetectable viral load measures (OR, in the absence 21 | PEER NAVIGATION of viral load monitoring, rising CD4 counts or CD4 counts above 200 cells/mm3 and objective measures of adherence) WHO defines individuals starting on ART as unstable if they have the following characteristics:9 CD4 count < 200 CD4 cells/mm3 OR WHO Stage 3 & 4 defining illness (see box below) OR comorbidities that require more, or more frequent, clinical care Given that some programs will implement return-to-care initiatives, whereby navigators contact beneficiaries either lost to follow-up or designated eligible for treatment, navigators may have a mix of new beneficiaries and those already engaged in the service network. Among these individuals, some will not be on treatment for various reasons, and some will have initiated treatment. The tables below provide recommended guidance on the frequency and kinds of support new and existing beneficiaries may require, based on high- versus low-need and stable versus unstable treatment outcomes. Programs should refer to national guidelines while adapting these SOPs to the local context. WHO clinical staging of HIV and case definition The clinical staging and the case definition of HIV for resource-constrained settings were developed by the WHO in 1990 and revised in 2007. Staging is based on clinical findings that guide the diagnosis, evaluation, and management of HIV, and it does not require a CD4 cell count or viral load. Clinical stages are categorized as 1 through 4, progressing from primary HIV infection to advanced AIDS. These stages are defined by specific clinical conditions or symptoms. For a complete list of Stage 3 and 4 conditions and symptoms, refer to the following website: https://aidsetc.org/guide/hiv-classification-cdc-and-who- staging-systems. Table 1: Differentiated care approach for service beneficiaries Differentiated care approach for those living with HIV-positive but not yet on ART Low-need High-need Until initiation of ART: Follow up by Until initiation of ART: Follow up phone or in person at least 1x per as often as necessary to ensure month after initial meetings and that basic needs are met and the client classification as low-need beneficiary is not lost to follow-up New and existing service (i.e., weekly) beneficiaries Call beneficiary 1 day before Call beneficiary 1 day before each appointment; call within 24 each appointment (accompany if hours of a missed appointment to necessary); call within 24 hours of a reschedule/provide support missed appointment to reschedule/ provide support 22 | PEER NAVIGATION Table 2: Differentiated care approach for new and existing service beneficiaries on ART Differentiated care approach for those living with HIV-positive but not yet on ART Stable ART/Low-need Unstable ART/High-need Months 1-3: Follow up by phone or Months 1-3: Follow up by phone or in person 1x per month after initial in person every 1-2 weeks; provide meetings accompaniment to appointments as needed After Month 3: Follow up by phone Refer service beneficiaries with or in person 1x every 3 months side effects to clinical provider; reassess health status shortly after referral After month 3: Follow up by phone New service beneficiaries or in person 1x every 2-3 months Call the beneficiary the day before each appointment date; call within 24 hours of a missed appointment Call the beneficiary the day before each appointment date; call within 24 hours of a missed appointment Follow up on viral load/CD4 Follow up on viral load/CD4 diagnostics diagnostics Goal: 2 consecutive undetectable Goal: 2 consecutive undetectable viral measures viral measures Stable ART/Low-need Unstable ART/High-need Every 6 months: Follow up by Months 1-2 (or 3 if needed): Follow phone or in person up by phone or in person every 1–2 weeks Call the beneficiary the day before After month 2 or 3: Follow up by each appointment date phone or in person 1x every 2-3 Existing service beneficiaries months until beneficiary has 2 consecutive undetectable viral load measures Follow up on viral load/CD4 Refer service beneficiaries with diagnostics side effects to clinical provider; reassess health status shortly 23 | PEER NAVIGATION after referral 3.3.4 | Positive health, dignity, and prevention People living with HIV have the right to choose whether they want to have sex, their preferred methods for enjoying sexual pleasure, and how they wish to ensure safety for themselves and their sexual partners. People living with HIV also can choose to use alcohol or other drugs. In some cases, PLHIVs’ perceptions of risk may change when their health situation improves. The term for meeting the health and prevention needs of people living with HIV is “Positive heath, dignity, and prevention.” This approach aims to increase the self-esteem, confidence, and ability of HIV-positive people to care for themselves and to avoid passing HIV to others. Reinforcement of prevention messages will be critical throughout navigation support. Service beneficiaries should be provided information on: Risk of transmission through sexual intercourse or sharing of nonsterile injecting equipment Appropriate methods of sexual protection, as well as safe injecting practices Available services Serodiscordant couples need to know about their risk-reduction options, and navigators can serve an important role in helping couples avoid onward infection. Navigators should be aware that some individuals may be reluctant to attend counseling with a partner, and it may take time and additional support to engage partners. They should also be aware that many couples face challenges in maintaining consistent condom use during periods when viral load is still detectable in the person living with HIV. For more information on HIV prevention for serodiscordant couples, see HIV prevention within serodiscordant couples: a new paradigm.10 For partnerships with people who inject drugs, it is important to develop a plan for safe injection (including injection equipment for diabetics and for transgender women who are injecting hormones). People who inject drugs also need to develop risk-reduction plans for sexual transmission with their partners. For more information on HIV prevention for drug users and their partners, see the Toolkit for implementing a comprehensive HIV prevention program for people who use drugs.11 The importance of an undetectable viral load It is important for navigators to promote the individual and community-level benefits of achieving and maintaining an undetectable viral load. Navigators might want to consider the following messages of encouragement and caution: You can live a healthier and longer life. Using ART to reach an undetectable viral load means that there is less HIV in your body. Less HIV means less damage to your immune system, allowing you to stay healthier and live longer. You can reduce HIV transmission risk. Studies have shown that people living with HIV who use ART can reduce the likelihood of transmitting the virus to their HIV-negative partners by as much as 92 percent to 96 percent. More people on effective treatment and with their virus in check means more HIV infections are prevented. “Undetectable” does not mean “cured.” An undetectable viral load means that so few copies of the virus are present in the blood that today’s monitoring tests are unable to detect them. Even with an undetectable 24 | PEER NAVIGATION viral load, however, an HIV-positive person still has the virus. It is still possible to transmit HIV. Your viral load can fluctuate between monitoring tests. This can happen for no known reason, when you have a sexually transmitted infection (STI) such as chlamydia or gonorrhea, or when ART doses are missed. During these viral load “blips,” the chance of transmitting the virus may be higher. Also, viral load tests monitor only the amount of HIV in the blood, not the amount in semen or vaginal fluid. It is not yet known how much virus needs to be present in body fluids for transmission to be possible. Additional services In addition to clinical care, ART, and psychosocial support, navigators should help service beneficiaries access other relevant services in the community, including prevention and support for domestic and gender-based violence, treatment for drug and alcohol dependence, STI diagnosis and treatment, legal aid, and support for orphans and vulnerable children. PrEP and PEP Navigators should be familiar with both PrEP (pre-exposure prophylaxis) and PEP (post-exposure prophylaxis). Both are methods of preventing HIV that involve taking antiretroviral medications before one is diagnosed with HIV. These treatments may not be available in all areas. PrEP is increasingly recommended for anyone who is at high risk of HIV acquisition. It involves a daily pill containing two antiretroviral drugs that will prevent the person taking it from contracting HIV. PEP is used for people who have experienced a high-risk exposure. It involves taking a combination of three drugs as soon as possible after exposure (preferably within two hours and before 72 hours). Regimens and guidance may vary by country, state or province, or facility. It is important that navigators understand what the guidance is for the area/facility where they are working. 3.3.5 | Identifying and responding to gender-based violence and abuse KP service beneficiaries may be at elevated risk for violence and abuse, which are often categorized into five types: physical, sex

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