This case study examines an integrated clinical and social support programme that used quality improvement, decentralisation, task shifting, and community engagement to identify and address challenges to sustaining HIV treatment programmes in India. Exploring and evaluating Aamhich Aamache Drop-In Center (DIC), this case study shares stories of the stigma and discrimination received at the hands of family and community in Sangli, Maharashtra, a southern state in India - and communication strategies to address this and other challenges.
As detailed here, until recently, the relationship between clinical programmes and community-based efforts in Maharashtra was weak and strained, characterised by "underperforming linkage and referral systems, duplicative efforts, and ineffective communication." In response to this situation, the United States (US) President's Emergency Plan for AIDS Relief (PEPFAR) through the U.S. Agency for International Development (USAID), worked with the National AIDS Control Organization (NACO), the Maharashtra State AIDS Control Society (MSACS), and the Avert Society, a local non-governmental organisation (NGO), to develop and implement a comprehensive, integrated HIV care programme - the ICP - in 6 high-prevalence districts of Maharashtra. The ICP, launched in 2010, brought together a broad range of government stakeholders, community-based service providers, and NGOs to design, implement, monitor, and evaluate medical and social support services for families and individuals living with and affected by HIV that would improve enrolment and decrease loss to follow-up (LTFU) and serve as a model for consideration by other districts in the state and, more broadly, in India.
"Coordination and communication are fundamental to the ICP approach - ensuring that clients are linked to the necessary services, that efforts are not duplicated, and that all stakeholders in the care network carry out and are recognized for their roles in the network. Working with government programme managers, clinical service providers, PLHIV organizations, and community-based organizations, the Avert Society helped each district revitalize existing monthly meetings. Stakeholders were already meeting routinely to discuss activities; the Avert Society used these meetings to refocus efforts on a specific issue. The Avert Society worked with partners to implement a traditional quality improvement approach in which participants shared data, identified challenges, devised easy and cost-sensitive solutions, and measured progress each month."
Services provided by drop-in centres, described in detail in the document, include:
- Psychosocial support and counselling: individual counselling, self-help groups, stigma and discrimination, disclosure, prevention with positives, condom distribution, nutrition, adherence support, child support, and couples counselling. Key to this process are outreach workers, typically employees of people living with HIV (PLHIV) networks, who are trained in three curricula (HIV Basics in 12 modules, Counselor Training, and Program Management) from the Avert Society; they also receive on-the-job support from network and Avert Society staff.
- Peer support: stigma and discrimination, disclosure, and adherence support.
- Referrals: government schemes, child and widow services, medical care and support, and missed visit follow-up.
- Advocacy: legal services, property, and improved health and social services/pressure groups.
- Economic opportunities: income generation activities, skills training, and employment opportunities.
- Marriage mela, a social gathering of single/widowed HIV-positive men and women that serves as a venue for meeting potential partners.
- Emergency and financial support services.
As outlined in the study, the ICP "very quickly achieved significant impacts, in terms of both service coverage and quality and life improvements among PLHIV. A large part of the initiative's success is its implementation through existing programs and structures, which also strengthens what were largely vertical programs." To cite one example, key informant interviews revealed that, for those clients for whom information was sufficient, the interval between LTFU and clients' return to care is typically less than one month, and in Kolhapur, DIC and antiretroviral treatment (ART) Center staff reported that 70% of clients return to care within one week of outreach from DIC staff. Also, over 100 men and women who participated in focus groups reported decreased stigma and discrimination and increased autonomy as a result of their participation in ICP activities.
What worked well, according to organisers:
- Fostering leadership: The success of the ICP required the identification of champions that led integration efforts within and between each of the stakeholder groups.
- Supporting coordination: Monthly coordination meetings had a significant impact during the design, implementation, and monitoring of the ICP.
- Strengthening outreach workers: Under the ICP, the role of outreach workers was focused and integrated into the broader health system.
- Empowering PLHIV: "Clients went from relying on the outreach workers to advocating on their behalf and taking on their own issues and those of their peers. This increased empowerment facilitated the formation of pressure groups that sought solutions for problems affecting individual PLHIVs (family issues) and groups (e.g., discrimination faced at the local clinic)."
- Meeting the needs of children living with HIV: In Kolhapur, the DIC created a corner in the office where children can gather and play. This provides parents with a respite during visits and allows children to interact with other children who face similar challenges.
- Improving data for patient management and programme monitoring: "Now, the ART Center and the NGO can communicate daily, using a password-protected electronic system, about patients who did not attend the clinic. Outreach workers can then be sent out immediately to track them down..."
Challenges outlined in the case study include: limited geographic coverage of the ICP/DIC programme, unmet needs of growing children, evolving counselling needs, meeting the needs of high-risk groups, continuing stigma and discrimination, and continuing need for economic opportunities.
The report closes with ideas for future programming, including recommendations such as this one: "The PLHIV networks have made great strides in decentralizing services, resulting in even greater patient autonomy and self-reliance. These efforts should continue and PLHIV self-help groups and pressure groups should become increasingly autonomous. Programs should also consider strategies that engage PLHIV in LTFU efforts."
Email from Anna Lisi to The Communication Initiative on August 13 2012.