Expert Clients Improve HIV/AIDS Care and Address Stigma in Malawi

Transcription

1 Abstract no. TUPE414 Expert Clients Improve HIV/AIDS Care and Address Stigma in Malawi Authors: Onani Bokosi 1, Erin Linsky Graeber 1, Carol Makoane 2 1 PCI Malawi, 2 PCI Washington, DC

2 Background Project Concern International (PCI) launched the USAID-funded IMPACT program in 2010 through a sub-grant from Catholic Relief Services (CRS) in Balaka and Machinga Districts of Malawi to strengthen community-based care and support services for people living with HIV/AIDS (PLHIV). PCI introduced the Expert Client (EC) model to IMPACT in To alleviate the burden on the HIV/AIDS care system and improve health outcomes, ECs (trained HIV-positive volunteers) are stationed in health facilities and assist PLHIV to access treatment and remain in the continuum of care. ECs also share their experiences and knowledge with other PLHIV in their communities to promote HIV testing and combat stigma. Figure 1. An EC meets with a client to discuss his current TB and ARV treatment regimens and provides a referral from a rural health center to Queen Elizabeth Hospital in Blantyre

3 Description Since 2012, PCI has placed 12 trained ECs in six health facilities in Balaka and Machinga District. ECs provide the following key services to PLHIV: Provide HIV/AIDS education on prevention, care, and treatment Escort patients between services, including HTC, PMTCT, ANC, etc. Provide ART adherence counseling Follow-up with pre-art and ART clients who miss appointments Trace ART defaulters and return them to care To date, ECs have administered individual ART adherence counseling sessions to 2,805 people (1,659 females; 1,146 males). In addition, ECs conducted counseling sessions with couples to improve the partner disclosure rate, reduce unknown discordance, and increase the rate of male testing. The EC model is alleged to be more effective in utilizing the tracer card system than the traditional health attendant model, where individual follow up with ART defaulters was not conducted. ECs are able to provide one-on-one, personalized service and follow-up with defaulters directly within their communities and return them to care. Balaka District statistics indicate a 10% reduction in the ART default rate since the program s inception in 2012, potentially due in part to this personalized follow up service. The ECs role in this improvement has been recognized and appreciated by Balaka District Health Office ART staff members.

4 Description (cont.) Figure 2&3: The figures above depict a request for follow up with a defaulter patient form (left) and a client follow-up tracer card, which is used by ECs to check in on individuals who have missed their clinical appointments (right). The tracer card specifies the original appointment date that was missed, in addition to the rescheduled appointment date, and the appointment outcome (either FR (Found and Returned), TO (Transferred Out), D (Died) and FN (Found and not Returned)).

5 Lessons Learned As illustrated below, ECs act as crucial links between PLHIV and services received at community health facilities and external resources, filling a gap that previously existed in traditional health facility staffing structures. At each facility, ECs guide individuals in receiving needed health services, but they also refer PLHIV to PLHIV community support groups where individuals receive psychological and social support. ECs also refer HIV positive pregnant women to Health Surveillance Assistants (HSA) (government community health workers) for Mother Infant Pair (MIP) follow-up, ensuring that these women receive special oversight to decrease chances of HIV transmission to their children during the critical period from birth up to two years of age. Prior to the introduction of ECs in health facilities, PLHIVs were not referred to HSAs and support groups. Expert Client (via Health Facility) Health Surveillance Assistants (HSAs) Support Groups Traditional Leaders/ Community However, the EC model impact extends beyond facility-based HIV/AIDS treatment, care and support services. Previously, PLHIV faced great challenges in revealing their status because of stigma in their communities. ECs directly challenge HIV-related stigma by publicly disclosing their status, addressing common misunderstandings on HIV transmission, and advocating for the organization and support of HIVpositive communities. ECs have successfully enlisted Malawi s influential traditional leaders to promote HIV testing, encourage status disclosure and denounce stigma and discrimination. ECs also serve as positive role models for PLHIV in their communities by providing living testimony that PLHIV can overcome fear, maintain their health, and live full lives.

6 Testimonial: Expert Client Ellen Sinja, a 32-year-old from Lipongo village in Machinga District, was among the first ECs trained. Today, she is proud to serve in this innovative role. Each day at the Machinga Health Clinic, Ellen gives HIV awareness talks to patients. Though many patients come to the clinic for unrelated issues or general checkups, she meets with each person as he or she waits to see the doctor and provides counseling on the importance of HIV awareness and testing. For individuals who test positive, Ellen and ECs like her are there to speak with them about treatment options, explain ART adherence protocols, discuss the consequences of not adhering to treatment and connecting them to a PLHIV support group. Staying abreast of the newest HIV information in a rapidly changing environment is key to remaining effective in their roles. ECs periodically receive refresher trainings from PCI and participate in trainings sponsored by the Malawi Ministry of Health (MoH). Ellen recently attended a training to learn the roles and responsibilities of health center clinicians and became familiar with the new ART regime. She also learned how to gauge an individual s emotional state to determine how and when to offer them counseling. Figure 4: EC Ellen Sinja at the HIV Testing and Counseling center at Machinga Health Clinic Previously, HIV positive individuals faced great challenges in revealing their status because of the stigma they faced in their communities. However, community members like Ellen are now disclosing their status, standing up for the HIV positive community, and addressing common misunderstandings on HIV transmission in order to reduce discrimination and stigma. Since she was first diagnosed in 2010, Ellen has noticed a dramatic change in public perception and acceptance of HIV positive individuals. I receive great joy from watching the HIV positive people I have counseled recover and begin living positively, said Ellen. The woman I was three years ago would have never imagined that I d be working at a health facility serving others and helping to save lives.

7 Testimonial: Traditional Leader When Group Village Headman (GVH) Duncan, the traditional leader of the GVH, fell critically ill, he went for HIV testing and counseling at Mbera Health Center. Mr. Peter Phiri, the Mbera Health Center EC, was on site to provide GVH Duncan with counseling, support, and advice. When I arrived, Mr. Phiri held both group and individual counseling sessions with me, explained GVH Duncan. After our sessions, I was tested and was diagnosed as HIV positive. I was introduced to ARTs and was advised by Mr. Phiri to be open about my status and live an exemplary life by encouraging others to get their blood tested. He also referred me to a community support group where people living with HIV come together for psychosocial support and spiritual guidance. Figure 5: GVH Duncan displays his ARVs and materials from his HIV/AIDS support group Mr. Phiri has been working as an EC for three years now with the Mbera support group. When GVH Duncan came to the clinic, I took him into the counseling room, said Mr. Phiri. I did not want to have him in public due to his position. I am very happy that he accepted the test results with a positive attitude and was open to the idea of joining a support group. He is now an influential figure in advocating for his fellow leaders to promote HIV testing and living positively in their communities. Everyone within the support group has accepted the presence of the GVH and they take pride in the influential role GVH Duncan plays, particularly with his fellow Headmen. Today I am strong and free, says GVH Duncan, thanks to the advice from my EC and my fellow support group members, who have been very influential in helping me make better decisions about the food I consume and how to keep myself and others healthy and safe.

8 Conclusion The EC model has been highly successful in Malawi. To ensure ECs will remain active after the IMPACT program close-out in September 2014, MoH representatives and Balaka and Machinga health clinics are identifying strategies for sustaining EC activity. As part of the sustainability strategy, EC support will be transferred to Dignitas, another HIV/AIDS focused Non Governmental Organization (NGO) that is currently active in Malawi. Dignitas will continue providing EC technical and financial support. In the long run, EC supervision will be transferred to the MoH after EC financial and technical support has been approved and included in the MoH budget. Further, PCI is coordinating with Dignitas and MoH on the scale up of ECs to other districts, and expansion beyond health facilities to community care. This will provide an opportunity to improve treatment, care, support, and advocacy for PLHIV in additional communities throughout Malawi. The success of the EC model also questions the role of PLHIV as strictly beneficiaries in development programming. In Balaka and Machinga, ECs have served as development resources and PLHIV advocates. ECs are the embodiment of positive living, demonstrating the leadership and mentorship capacity of PLHIV in advocacy roles within their communities.

9 Acknowledgments We would like to thank USAID for their funding of the IMPACT project which made this success possible. We thank the following individuals for their input to this poster presentation: Peter Chimphero, ART Coordinator for Balaka District; Amiza Saiti, PMTCT Coordinator for Balaka District; Peter Phiri and Ellen Sinja, Expert Clients; and Edward Katukana, Medical Attendant at Mbera Health Centre