ETSN Evaluation Research Study report: Wise practices in advancing health literacy and peer support amongst Racialized PHAs (May 2019). Download full report PDF
The ETSN (Ethno-racial Treatment Support Network) is a peer-based HIV health literacy and peer support training program developed in response to the complex challenges faced by racialized and newcomer people living with HIV/AIDS (PHA) in accessing treatment and support. Since its inception in 2003, the ETSN program has trained over 200 PHAs, their caregivers and service providers.
While the ETSN program is highly regarded in the community as an innovative model in advancing the Greater and Meaningful Involvement of People Living with HIV/AIDS (GIPA/MIPA) and many of the ETSN graduates have taken up service provision and leadership roles in the communities, there has not been a comprehensive review to capture the ‘what’ and the ‘how’ ETSN has contributed to improving the lives and health of its graduates and their affected communities. The current evaluation study was developed with the objectives to identify the long-term impact of ETSN in supporting empowerment and capacity building at individual, organizational and community levels; program structure and wise practices that contribute to its positive impact; facilitators and barriers to knowledge utilization; and strategies and solutions to enhance peer treatment support in affected communities.
Underpinned by the principles of empowerment and capacity building and applying an evaluation framework developed through community engaged processes, we used a mixed methods approach in our study. We engaged 92 ETSN graduates in a quantitative survey made up of validated scales to evaluate the impact of the ETSN program in six key domains: health literacy, self-health management efficacy, treatment adherence, sense of empowerment, social connection and support, and community engagement. In addition, we engaged 62 ETSN graduates and community stakeholders in focus groups to identify processes and mechanisms that contribute to the effectiveness and positive impact of ETSN, as well as strategies for further improvement.
The survey results showed that an overwhelming majority of the ETSN graduates attributed positive changes across all six domains to their ETSN training experiences. Participants reported increase in their health literacy and self-health management efficacy (93%); improvement in their self-care practice (76%); increased connection to health service providers (75%), AIDS Service organizations (86%) and other PHA peers (96%). In the domain of community engagement, the majority reported increased involvement outside the HIV sector (74%), and increased engagement level in ASOs (92%). Further, many reporting progressive changes in the roles they play in ASOs (76%). Further in the domain of sense of empowerment and well-being, over 90% of participants reported an increase in both their preparedness and actual action to challenge stigma and to advocate for their own needs.
The focus group participants identified the key strengths in the ETSN program structure, design and content that contribute to its successes. These include: (a) having a safe and inclusive learning space for racialized and newcomer PHAs that honored their lived experiences, acknowledged their struggles and affirmed their resilience; (b) intentional practice to promote PHA leadership; (c) a responsive training curriculum that is grounded in PHA’s lived experiences; (d) experiential and collaborative learning processes that contribute to building a community of practice; (e) meaningful engagement of PHA graduates in the planning, delivery and evaluation of the program; and (f) structured mentorship support to facilitate progressive engagement and community succession.
Participants also identified program specific and systemic challenges that limited ETSN’s effectiveness and knowledge translation impact. Program specific challenges include recruitment dependency on partner agencies, limited frequency of training and deployment opportunities for graduates, intensive training time commitment that poses challenges to participants with competing priorities and complex needs. Systemic challenges include sector-wide inequitable and insufficient resources to support peer engagement initiatives, professionalization within the HIV sector and wider societal stigma and discrimination that led to the devaluing of lived experience within and beyond the HIV sector.
To further strengthen the ETSN program structure and contents, key recommendations from study participants include: (a) expand outreach and promotion through more diverse venues to reach more PHA in isolation; (b) increase reconnections and follow-up training for graduates; (c) explore more flexible ways to engage different language communities and using web-based technology; (d) enhance training on mental health, addiction and HIV activism/advocacy; and (e) enhance structured mentorship succession.
To address systemic barriers that limit ETSN’s positive impact, key strategies identified by study participants include: (a) develop/advocate for sector wide “supporting the supporters” infrastructure to support PHA taking on service provision roles; (b) enhance coordination with other PHA training programs to build synergy, reduce overlap, and promote sector wide recognition; (c) collaborate with partner agencies to develop structure and inventory of practice opportunity to enhance deployment of graduates; (d) explore formal accreditation status; and (e) expand and promote program provincially, nationally and internationally.