To build programming for youth living with HIV in Zimbabwe, Pact uses human-centered design

June 27, 2023
Young women in Zimbabwe who took part in human-centered design to co-create a service package for older youth living with HIV. Credit: FACT

Wellness days with games and mobile clinics to reduce stigma and boost awareness of HIV services. Youth clubs that offer a safe and fun space for youth living with HIV. Mental health peer mentors to help HIV-positive young adults cope with depression, substance abuse and relationships.

None of these ideas were on the radar for the SPACE for OVC project in Zimbabwe when it began in late 2022. Yet today they are set to be piloted among the very community that designed them.

SPACE (Sustaining Prevention and Increasing Access to Care and Empowerment) for Orphans and Vulnerable Children is a USAID-funded project led by the Zimbabwean organization FACT. Its goal is to improve health, safety, education and stability outcomes for orphans and other vulnerable children, adolescents and youth affected and infected by HIV. One of the project’s key deliverables is developing a new package of services for young adults between 18 and 24 living with HIV.

But there was little evidence on the needs of this group. So FACT and Pact, a technical support partner in SPACE, turned to human-centered design. By deeply engaging HIV-positive youth in the project's design, we uncovered new ideas that hold immense promise.

“We assumed the needs of older youth would be quite different than what they needed as children, but we had no existing evidenced models from which we could base our new package,” explains Pact’s Savannah Miller, a senior innovation manager who took part in the process. “This was ideal for human-centered design because it enabled youth to develop new ideas and prioritize what is most important to them.”

A facilitator guides an HCD exercise during SPACE co-creation. Credit: FACT

Human-centered design, or HCD, is an innovative design methodology that originated in the private sector to better address end-users' needs. Soon, it gained momentum in the social impact sector as an effective tool to elevate participants' voices in creating more effective programs, products and services. HCD focuses on user experience, addressing root-cause problems to create customized solutions that precisely meet identified needs. The foundation of HCD is empathy. This emotional, connective process immerses the program designer into the life of the end-user to uniquely understand what drives them to make decisions and to co-create and test solutions by the community, with the community

“HCD fits perfectly with Pact’s engaged communities approach,” Miller says, “because it is all about empowering communities to lead the way in their own development. Pact’s HCD methodology means that youth not only share their experiences so we can design something ideal for their age group. It means they design the package of care that will be piloted.” 

To begin, Pact and FACT held pre-workshop interviews with key stakeholders, including health facility nurses, government officials and other health and HIV service providers, as well as hard-to-reach youth who may not be comfortable in group settings. Next, Pact and FACT co-facilitated three HCD workshops in Chipinge, Chiredzi and Gutu districts. These locations allowed the project to engage both rural and urban youth. Participants were recruited through local partners. They included youth who had engaged with other FACT services and those who hadn’t, married and single youth, youth with and without children, and youth from various backgrounds. 

Over two days in February, participants moved through the four stages of HCD: 1) Listen to uncover community needs, challenges and assets; 2) Define with participants the design challenge; 3) Create many potential interventions; and 4) Test quickly and cheaply these potential interventions to find out what works and what doesn’t.

Youth mapped out and reflected on their current experiences with services and dreamed of what their ideal experience would look like. They created new ideas and were provided all of FACT’s implementation constraints, giving them the power to prioritize and identify which ideas had the greatest impact potential but were still achievable.

The goal was to develop training materials, standard operating procedures and tools for local partners and service providers. The result was an after-action report summarizing key findings, including ideas to be piloted and learnings specific to the HCD process and the participating community.

The project went beyond incorporating communities' insights and desires and brought them directly into design and decision-making.

Young women take part in the HCD process. Credit: FACT

“Throughout the workshops, mental health came up as an acute crisis point for youth living with HIV, more so than anticipated,” Miller says. “Our process of reflecting on youth’s current experiences was painful for many participants, and we quickly brought in mental health counselors to provide support. We’d recommend this being made standard for future engagements with vulnerable youth.”

In addition to mental health, other emerging topics included HIV status disclosure, peer support, treatment adherence, stigma and shortfalls in HIV treatment literacy. The ideation process generated 113 unique ideas in areas of impact including mental health, physical health, adherence, disclosure, peer support and economic and livelihood issues. The design team developed a database of all ideas, grouped by impact area and listed with a “youth priority score” and location.

Following discussions with FACT and refinement by technical teams, consortium partners agreed  on the three central interventions to be tested – the wellness day, youth clubs and mental health peer mentors – none of which could have been designed without HIV-positive youth themselves. The project team has since been preparing for the rollout of the pilots in two of the nine districts where SPACE for OVC is being implemented. 

“FACT is very excited about the progress made in designing this package of services for youth living with HIV,” says Tinashe Chimbidzikai, the SPACE project’s chief of party. “We look forward to the pilot phase results and how these will help shape the rollout of services in other districts. USAID is keen on how this will particularly address HIV treatment adherence and mental health and psychosocial challenges faced by older youth living with HIV.”

Miller says HCD in the project was an ideal use case for deeply engaging a community. “We went beyond incorporating their insights and desires for services,” she says, “and instead brought them directly into design and decision-making.”