Listening to voices long unheard: Health literacy for Dinka-speaking refugee communities

For many, it was the first time they’d been invited to share their experiences navigating Australia’s healthcare system. And for Dr Abela Mahimbo, a researcher in the UTS School of Public Health, it was a moment of deep listening and deep learning. 

"Some of us have stayed here for more than 20 years," said one participant. "The government should start considering us as its own people."

This project, supported by a UTS Social Impact Grant, set out to explore the health literacy needs of Dinka-speaking refugee communities in New South Wales. It aimed to understand how people access, understand, and act on health information – and what gets in the way.

A community-led approach 

The research was grounded in participatory action principles. A respected Dinka community leader, Ms Susan Aduk Dau, served as co-researcher – sharing equal responsibility for study design, recruitment, data collection, and analysis. 

"You are doing a great job," she said. "I must support it."

Together they conducted 2 focus groups with 19 participants, mostly older adults and healthcare consumers. The discussions, held in Dinka, revealed a complex web of barriers: limited literacy, language challenges, cultural differences, and experiences of racism and discrimination.

"If I was a white person, I would have opened a case," said one participant, describing mistreatment in hospital. "A patient carried by ambulance is someone very sick. They cannot be left to roam on their own."

Health literacy at the point of care 

Participants described difficulty understanding prescriptions, booking appointments, navigating referrals, and managing chronic conditions. Many relied on family members for support, and trusted doctors as their main source of health information but felt unheard and disrespected during consultations. 

"We need to be taught more English," said one elder. "Even if you are elderly, learning more English would help you when seeing a doctor."

The research also highlighted tensions between Western medicine and traditional healing practices, and the stigma surrounding mental health. 

What change looks like 

Participants proposed a range of strategies to improve health literacy and healthcare experiences:

• Culturally safe services that acknowledge and eliminate racism.
• Training for healthcare providers in cultural competence and humility.
• More interpreters and bilingual staff.
• Community-led health education sessions.
• Support for ethnic healthcare providers.
• Improved access to screening and chronic disease management 

"Treating people equally promotes peace of mind," said one participant. 

A model for empowerment

For Dr Mahimbo, the most powerful outcome was citizen empowerment. Participants – especially elders – felt heard, respected, and valued.