Integrating Community Strategy with HIV Programs-A Research Paper Appropriate for Turkana County Setting

A RESEARCH PAPER ON HOW TO APPROPRIATELY ENGAGE THE COMMUNITY IN HIV PROGRAMS: INTEGRATING COMMUNITY STRATEGY WITH HIV PROGRAMS IN TURKANA COUNTY SETTING-A REVIEW OF EVIDENCE AND IMPLEMENTATIONS STRATEGIES: By Stephen Olubulyera-Public Health Officer-Turkana County

~Web of Brilliant Minds~

ABSTRACT

Interventions defined as “community based” will include interventions by health care workers performed as outreach e.g. community based HTC campaigns, as well as interventions performed directly by community members either at the facility or in the community. To achieve strategic community engagement to ensure acceptability of enhanced provider initiated testing alongside community based testing interventions should be combined. Maximizing testing coverage whilst ensuring maximum testing yield should be achieved through targeted outreach for key populations, families of index clients and in geographic and population based high prevalence areas. To enhance retention and adherence, strategies that address psychosocial support and patient education, provide individual patient case management (appointment and defaulter tracing systems) and services that place the patient firmly at the center of ART delivery.

The critical work of peer educators and community health workers will underpin the intervention. These cadres support an activity at the facility but because they are community members, will provide the essential link to the community to support tracing and home based interventions. Specific interventions for PMTCT such as providing a mother mentor and the organization of health clubs for adolescent care will demonstrate or have significant impact on retention. Nevertheless, the mapping of these interventions has demonstrated that there are a range of interventions already being implemented across the county but are being led by different implementing partners and with differing terminologies for cadres performing similar functions. What is clear is that to achieve the target population, HIV programs will need to employ innovative strategies in service delivery and identify system efficiencies. An enabling environment is also needed, including mechanisms to strengthen the technical capacity of CBOs, engage community and faith based leaders in addressing stigma as well as ensuring robust and adaptable “differentiated” models of service delivery within the health system itself.  

However to achieve these goals, the community and health system must act together as one with the patient placed firmly at the centre of any strategy. The global community has set an ambitious vision for itself: Getting there will require a massive, coordinated, and urgent mobilization of all available resources – human, financial, and technical. We need to speed up the uptake of new, rapid diagnostic tests. We must redouble our efforts to find effective interventions of involving the community. And we must strengthen our health systems to be able to deliver these ARTs efficiently to the people who need them most. In this context, there is an urgent need to engage actively with the community based organizations that are already so important in strengthening and supporting our formal health systems.

HIV Prevention, Care and Treatment Cascade

The HIV prevention, care and treatment cascade is described below.

Step 1: HIV testing

The HIV care continuum begins with the diagnosis of HIV infection. Individuals who do not know they are infected can unknowingly pass the virus to others and those who are negative may gain additional motivation to remain negative through post-test counseling

 

Step 2: Referral and linkage to medical care

When HIV testing is positive the person must be linked with medical services to undergo clinical and immunological assessment to determine their eligibility for ART. If not yet eligible (although universal eligibility for treatment will soon be introduced) the client must be retained in Pre-ART care with ongoing eligibility assessments.

 

Step 3: Initiation and retention on antiretroviral therapy

The recent directive from Ministry of Health: every patient is eligible for ART and should be placed under it immediately he/she is confirmed positive. The client must be initiated and subsequently retained on ART. Globally 15 million people are estimated to be on ART.

 

Step 4: Achieving virological suppression

By taking ART as prescribed, a person living with HIV can achieve virological suppression. The provision of HIV service delivery must place the person living with HIV at the centre of the strategy in order to maximise both efficiencies for the client and the health system. Four main “levers” of care can or may alter how, where and by whom care is delivered. The levers can be defined as:

1. Decentralizing care to primary care or beyond (e.g. to health posts or to community pharmacies). Task shifting to lower cadres.
2. Frequency of the service (linked to duration of refill) and
3. Service intensity (separating the need to see a clinician for clinical assessment and/or laboratory investigations versus the need for a stable patient to receive ART).

Having these elements in place lay the foundation for any future community intervention.

 

THE ROLE OF THE COMMUNITY

Strengthening community based strategies across the HIV prevention care and treatment cascade is vital to maintaining what has already been achieved and will prove more essential to reach the targets. An important lesson highlighted from the already established interventions of treatment scale up is that community and civil society organizations are able to ensure accountability, catalyze demand creation, deliver services (within the facility and directly in the community) and handle resources efficiently.

To date 95% of HIV service delivery in Turkana County is facility based. If programmes are to maximize efficiencies both for the health system and for patients, it is estimated that community based service delivery; if scaled up will cover at least 30% of all services. There will be a prime opportunity for broader community engagement in the provision of HIV care after initiating community interventions. However, challenges might arise on how to adapt delivery of services to the ever growing numbers of patients on ART, whilst maximizing the benefits of community interventions that enhance the quality of care.

Interventions defined as “community based” will include interventions by health care workers performed as outreach (e.g. community based HTC campaigns), as well as interventions performed directly by community members either at the facility or in the community. Such community based interventions involve PLHIV, lay counselors, expert patients, mentor mothers, volunteers, community health volunteers (CHVs), traditional and faith based leaders and specific community based organizations (CBOs).

Activities include demand creation for HIV testing services and early ART initiation, service promotion, ensuring treatment adherence (including support in the identification and interventions for those failing treatment), provision of psychosocial support, revitalization of the village health committees to strengthen the link between facility and community, improved networking and coordinating mechanisms and support for the follow up of defaulting clients. Review of the role and coordination of these cadres is timely with the international renewed interest in the role of community health volunteers

The importance of such community engagement within ART delivery has recently been highlighted by WHO, introducing a chapter on community based delivery of ART in the March 2014 supplement to the consolidated guidelines on the use of antiretroviral drugs for treating and prevention of HIV infection

As such, community based activities should now focus themselves towards achieving the 90% of the targets with evidence based, high impact interventions being implemented at scale. Ensuring coordinated strategies from the Ministry of Health towards the scale up of community interventions, recognition of lay workers, coordination of CBOs and engagement of faith based leaders will be an essential part of the future strategy.

 

Creating an Enabling Environment for the Provision of Community Based Service Delivery Strategies

 Strengthen Community Based Organizations

The community will be encouraged to form community based organizations, if there are none-available especially the CBOs that tackle the aspect of HIV; community based treatment intervention and support. To relieve the burden on healthcare providers, a number of the non-clinical tasks relating to patient follow-up and adherence support have been shifted to community based, lay health workers and volunteers and will rely on activities coordinated by CBOs.

CBOs however require both funding and technical assistance to strengthen their activities. A number of organizations provide such support with activities including:

• Provision of technical assistance and tools to strengthen community based HIV organizations and groups in HIV technical areas such as HTC, PMTCT and ART.
• Organizational systems strengthening.
• Provision of grants.

• Supporting coordination of partnerships, networking and collective advocacy on priority issues such as stock outs of ARVs and availability of condoms.
• Conducting action research and promoting knowledge management that includes dissemination of lessons learned and evidence-based programming.
• Improving monitoring and impact measurement.

 Challenges identified in the support of these organizations include:

• Rapid turnover of staff who often graduate to larger organizations after capacity building.
• Large number of CBOs but no easily available accreditation information regarding quality of intervention.
• Adequate accountability of donor funds by CBOs.
• Adequate monitoring and evaluation to measure impact.

 Engaging Community and Faith Based Leaders

Faith and community leaders in Turkana County play a key role in how their communities make decisions around health service utilization and influence stigma related to HIV and gender based issues. They are given respect as opinion leaders in their communities and have a public platform from which to challenge stigma. While community by-laws and penalization of unwanted health choices are easily created and enforced, in order to play their rightful role, faith and community leaders need to be provided with a rights-based and gender transformative capacity building approach. They should be provided with appropriate tools and be involved in monitoring and reporting of HIV programmes and activities within their jurisdiction.

 Creating a county policy framework for community based strategies

There are a wide range of community based interventions being implemented in Turkana County. A clear framework is needed to identify and prioritize those interventions that target the HIV Program goals and that should be systematically implemented in all sites regardless of which partner is supporting. Placement of a new cadre by different NGOs may also cause conflict within staff in a facility due to differences in salary or allowances, “preferential treatment” and lack of clarity in management lines. Harmonization of job descriptions, roles, training and salaries would help to support the accountability of service providers.

The development of the job description and roles may serve as an example of how county coordinating mechanism can guide implementing partners on a particular intervention with the long term goal of the ministry absorbing the new cadre into the health staffing establishment list.

 

Community Strategies To Enhance Uptake of HIV Testing and Linkage to Care

Globally in 2014 an estimated 19.9 million (54%) of people living with HIV knew their status. This testing gap is more marked for children, with only 32% of children living with HIV being aware of their diagnosis. This dramatic gap at the entry door of the cascade poses one of the greatest operational challenges. Current testing practices have limitations both in terms of their reach but also due to human resource and commodity constraints. To address this first step in the cascade, a strategic mix of testing approaches will be needed, based on an analysis of prevalence data in specific populations or geographical locations.

To further guide national HIV programmes on testing strategies, WHO released new guidelines for HIV testing services in July 2015. Two strong recommendations included:

• In generalized epidemics a strategic combination of community based HIV testing and counseling is recommended in addition to PITC.
• In all epidemic settings community based HIV testing and counseling is recommended for key populations in addition to PITC.

Other key points highlighted in the guidelines are that lay workers should be allowed to provide HIV testing services, PITC should be scaled up beyond ANC and TB settings, and that a new strategy for community based testing may be considered called test for triage (a single HIV test is offered in the community with linkage to a facility for confirmatory testing and linkage to clinical care if needed). Self-testing is also outlined as an option that may be considered.

To address this gap community engagement in the proposed testing strategies will be key.

 

Provider initiated testing and counseling (PITC): the role of the community

Routinely offering an HIV test during clinical encounters at hospitals or primary care settings has to date been focused in ANC and TB settings. A systematic review examining the operational implementation of PITC in sub-Saharan Africa noted that the translation of policy into practice was very mixed, with wide variations in the uptake of testing and that linkage to care and treatment was often poor. WHO recommends that in generalized epidemics PITC should be offered for all clients in all services (STI, viral hepatitis, TB, children under 5, immunization, malnutrition, antenatal care and all services for key populations) as an efficient way of identifying people with HIV. In the County, PITC to date has not yet been systematically implemented except within ANC, TB and STI services. This represents significant missed opportunities. Emphasizes that PITC in the highest priority settings should be the testing model to be immediately strengthened. This includes routine testing within adult and pediatric inpatient wards, nutrition units, ANC, TB, STI and family planning clinics. In addition, specific populations at highest risk of HIV infection including sex workers, men who have sex with men, young women 15-24, fishermen, estate workers and prisoners should be specifically targeted for testing along with children, where coverage of testing remains low. However in order for PITC to be accepted as a component of every visit to a health care setting, community mobilization will be needed. Awareness raising may be performed through community health workers, support groups and community leaders.

 

Community based HIV testing and counseling

Community based testing models have high rates of acceptability, are important for increasing early diagnosis, reaching first-time testers and for people who otherwise seldom attend clinical services such as men, adolescents and key populations. However these approaches generally yield a lower positivity rate than facility based approaches. Community HTC includes a number of approaches including door to door home based testing (either targeted to families of index HIV positive clients or offered to all in a geographical area) and mobile outreach campaigns with testing in workplaces, bars, places of worship and educational establishments. To date 93 of 124 countries in 2014 included national policies to support community based HTC.

A study in Uganda performed between 2003 and 2005 comparing stand alone, hospital based PITC, household index client home based testing and door to door HTC demonstrated that household member and door to door strategies reached the largest proportion of untested clients whilst hospital based PITC yielded the highest positivity rates.

 

Door to Door HTC in the County

The door to door HTC model targets areas with high HIV prevalence, low up-take of HTC services, and areas that-are hard to reach. HTC counselors recruited from within and reside in the community. Each HTC counselor assigned a population area and is responsible for community mobilization, health education including nutrition, condom distribution, HTC and linkage to care.

This approach considers the family as the entry point for the service, aiming to reduce stigma and discrimination in the family and the community as a whole. The volunteer, in liaison with the community, organizes sensitization meetings for traditional and other community leaders. Associated activities alongside the door to door HTC include:

• Organizing and facilitating periodic HTC Counselors’ meetings which address pertinent issues affecting areas of operation and training of HTC counselors in door to door approaches.
• Household HIV/AIDS pre-and post-test health education.
• Support and follow-up counseling, facilitating the formation of support and post-test groups and provision of training to support and post-test groups.

 

Targeted and integrated community outreach HTC in the County

Community outreach HTC targets all social, age and gender groups. In addition, utilizing community mobilization and possible outreach testing during expanded programme on immunization (EPI) visits may also serve to promote increased infant diagnosis. Outreach testing is implemented by public sector and civil society organizations using health facility outreach teams, CBOs, NGOs and organizations of PLHIV. A team from the health facility or CSO, community based counselors, volunteers and HSAs offer HTC services at a community venue such as a club, church, school or workplace. HIV testing may be offered as a stand-alone service or as part of a general health promotion approach. At such events, partners distribute IEC materials and arrange various activities such as theatre groups, motivational speeches on HTC, treatment literacy and STIs. Counselors refer HIV positive individuals to the health facility for confirmatory testing and enrolment into pre-ART, ART or other health services. Test kits for community outreach HTC are sourced from the SubCounty Level.

 

Early infant diagnosis and pediatric HIV testing

Access to effective testing is one of the greatest barriers contributing to this low coverage. Barriers to pediatric testing have been classified as client related (caregivers not seeing the need to test a healthy child or wanting to protect the child from the stigma of HIV), provider related (distance to facility, long waiting times, long turn around for EID results, lack of commodities) and policy related (for example the age of consent to test without a guardian). Missed opportunities for testing have been reported in many settings

 

Service Integration and enhanced referrals

Integration of ANC and PMTCT has been shown to improve retention but is performed less systematically postpartum. Implementation of mother baby pair clinics where mothers and exposed babies are seen simultaneously has served to increase uptake of EID.

 

Role of the community in PITC beyond PMTCT services

Greater efforts to identify the infants of those mothers who have dropped out of PMTCT or who may have seroconverted during pregnancy and breastfeeding should be made. Strategies proposed to identify these high risk infants include scale up of opt-out PITC in a range of non-PMTCT settings (OPD, EPI, IPD and nutrition services). The highest positivity rates have been shown within inpatient and malnutrition settings. Currently systematic screening of all children attending non-PMTCT services is not implemented. If this is to be considered, in addition to investment in training for pediatric disclosure counseling, investment in community mobilization to increase acceptance of this strategy is needed.

 

Community based testing for children

Evidence on community based strategies specifically aimed at identifying HIV positive children is lacking. Door to door testing does encourage couple and family testing but in particular targeted community based testing of children and family members of identified HIV positive cases (index client testing) may be more cost effective.

 

HIV Self-Testing (HIVST)

HIV self-testing may be an additional strategy to reach those not reached by other HTC services. Confirmation of a HIV positive result will still need conducting at facility level. A number of models have been proposed as to where and how to best offer self-tests, ranging from within the facility where the test is fully supervised or where a test is accessible in the community, distributed by community health workers or freely available at community pharmacies. Studies are ongoing to determine efficiencies and cost effectiveness of a variety of self-testing models both in Malawi and elsewhere.

 

Linkage to care

It is no longer sufficient that clients just test for HIV. It is important that those that test HIV positive are linked to care and treatment services, whilst those testing negative are linked to preventive services such as VMMC, SRH and family planning. Data on linkages to care are limited, however one systematic review following patients from diagnosis to ART initiation demonstrated only 25% initiating ART. Loss to follow up prior to initiation was higher among men, in patients with low CD4 counts and low socioeconomic status.

In a study performed in Swaziland where home based HTC and mobile HTC were implemented, of those testing positive only 34% enrolled in HIV care and of those eligible only 52% initiated treatment within 6 months. In rural South Africa, 62% of a cohort of clients testing positive through home based testing linked to care (defined as having a CD4 at a facility). Factors predictive of decreased linkage were younger age (15-24), not believing the test result, not having time to seek health care, belief that ARVs make you sick and drinking alcohol .

A number of strategies to enhance linkage between community based testing and clinical assessment in a facility have been documented. Examples include referral forms being given to patients, strengthened post-test counseling, community health workers or other peer workers accompanying positive patients to the facility, use of immediate CD4 testing in the community or implementation of reminders using M-health. However, strong evidence for impact is currently lacking.

 

Community strategies to enhance HIV prevention

Community Strategies to support interventions such as condom distribution and voluntary medical male circumcision (VMMC) were not analyzed within the scope of this report. It is recognized however that the community plays an essential role in mobilizing members to utilize these services.

 

Community Based Strategies for Retention and Adherence

• Community based peer support mechanisms, facilitated through support groups or the link with a designated community worker or buddy enhances retention and adherence to ART.
• The impact of support groups on retention and adherence would be facilitated by ensuring a clear link for every group with a facility manager or HIV service delivery focal person.
• Support groups should be self-sustaining and have clear governance and management capacity. They should be strengthened to evolve into formal community structures potentially addressing topics beyond HIV such as leadership, income generating activities, nutrition, education, gender, water and sanitation.
• Relying on volunteerism has been raised as a challenge within the home based care model. For sustainable and quality community based services formalization of roles and responsibilities and harmonization of payment of lay workers should be considered.
• The community ART group model has demonstrated benefits both for the facility (decongestion) and for the clients (reduced transport costs, peer support).
• Having a dedicated lay worker, expert client or community health worker to drive the formation of CAGs greatly facilitates the scale up of this model.
• Additional strategies for community ART delivery have been implemented successfully elsewhere including community adherence clubs and community ART distribution points.

 

Facility Based Strategies to Support Retention and Adherence

• Decision making on what strategies to implement should be harmonized by the Ministry of Health and then adapted at local level with engagement of both local health care workers and community representatives. Implementing partners should still be able to innovate regarding service delivery in collaboration with their respective Ministry of Health partners.
• Facility and District ART/PMTCT Coordinators should take ownership of these interventions in collaboration with partners.
• Supporting patient case management through a dedicated cadre responsible for adherence counseling and patient tracing will become increasingly important to achieve quality care and virological suppression as further scale up of ART is made.
• All facilities regardless of implementing partner support should implement an appointment system with a systematic and timely defaulter tracing strategy. Where feasible the use of m-health to support appointment reminders and tracking should be leveraged.

Facility based fast track strategies are an ART delivery model that can decongest clinics for health care workers and reduce the burden of clinic visits for patients. This option should be available in all sites as the default facility based option. The maximum duration of refill available through MoH supply should be provided.

• Having a specific lay cadre responsible for individual case management in PMTCT (antenatal and postnatal care) has a significant impact on outcomes of the PMTCT cascade. This intervention should be considered across all sites.
• Integration of PMTCT with ANC and PNC services, for example through the mother baby care clinics, should be systematically implemented across all sites.
• All sites should be able to ensure there is a skilled and routinely available member of staff available to perform disclosure counseling for children.
• Children and adolescents should be booked on specific days in order to form immediate peer support through the “teen club” approach.
• Adherence clubs are a promising model with documented impact on retention and virological suppression and have been shown to be cost effective in a South African setting.

 

Essential components for the success include:

• Clear policy guidance to create and promote an enabling environment through
  1. implementing the elements of differentiated care
  2. ensuring local ownership of the interventions by health care workers and their communities
  3. adequately supporting CBOs and engaging community and faith based leaders.
• Strengthening of programme linkages between community structures and health facilities across the cascade of care to avoid duplication of activities and maximize the impact of interventions.
• Recognition of lay counselors, expert patients and the work of volunteers is urgently needed. Harmonization of roles, responsibilities training requirements and salaries should be led by the MOH.
• Ensuring the technical capacity of community groups and individuals through coordinated training, mentorship and supervision.
• Providing adequate oversight and stewardship of community based interventions by MoH and National AIDS Council.

 

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