Primary content

Authors

D Nguyen (Lead)

M Robotin

M Porwal

M Hopwood

C Treloar

J George

Aims

To address the unmet need of people diagnosed with primary liver cancer and their carers.

Method

We researched the information needs and preferred sources of health information of people affected by HCC using in-depth interviews (IDI) and focus group discussions (FGD) conducted in English, Vietnamese, Cantonese and Mandarin. The findings informed the development of customized multi-media information and support resources for people affected by HCC (patients and carers).

Results

Four FGDs involved 29 participants (2 FGDs were conducted in English and one each in Cantonese and Mandarin); another 18 people took part in IDI (in all 4 languages). FGD and IDI transcripts were transcribed, translated and subjected to thematic content analysis. Key themes were analysed; they related to doctor-patient communication, HCC-related investigations, diagnosis and staging, treatment options, availability of practical support and preferred sources of health information. They formed the basis for developing scripts for the multimedia resources, which were filmed in 4 languages, featuring liver specialists, hepatology nurses, patients and consumer representatives.

Implications

The resources will be distributed through liver clinics, private specialists, and made available to community organisations serving migrant communities and through the B Positive program to ensure they reach the intended recipients in a timely fashion. This model of action research and resource development can meet the information needs of a wide range of people affected by hepatitis, chronic illness or cancer in CALD and Indigenous communities.