Listening to the consumer voice: developing multilingual cancer information resources for people affected by liver cancer

Abstract

BackgroundIn Australia, liver cancer incidence is rising, particularly among people born in hepatitis B‐endemic countries. We sought to build an understanding of the information needs of people affected by liver cancer, to inform the design of in‐language consumer information resources.MethodsWe searched the World Wide Web for available in‐language consumer information and conducted a literature search on consumers’ information needs and their preferred means of accessing it. Qualitative data collection involved bilingual researchers conducting focus group discussions (26 participants) and in‐depth interviews (22 participants) with people affected by liver cancer in English, Vietnamese, Cantonese and Mandarin. Sessions were audio‐recorded, transcribed, translated and thematically analysed. The key themes and salient findings informed the development of in‐language multimedia information resources.ResultsMany consumer resources did not cater for people with low literacy levels. The participants wanted more information on cancer diagnostic and treatment options, nutrition and Chinese Medicine and experienced communication challenges speaking to health professionals. While Vietnamese speakers relied entirely on information provided by their doctors, other participants actively searched for additional treatment information and commonly used the Internet to source it. We developed multilingual, multimedia consumer information resources addressing identified consumer information needs through an iterative process, in collaboration with our multilingual consumer panel. These resources are available in four languages, as separate modules accessible online and in DVD format.ConclusionThis process enabled the development of user‐friendly patient resources, which complement health‐care provider information and supports informed patient decision making.

Patient Perspectives to Inform a Health Literacy Educational Program: A Systematic Review and Thematic Synthesis of Qualitative Studies

“…Patients with LHL from minority cultural backgrounds, for example, expressed feeling more comfortable and confident when HCPs acknowledged and accommodated relevant cultural health beliefs and norms, family values and decision-making, and language. This was found across a variety of studies and sample sizes, with various populations including, for example, individuals of a Latin American background in the United States, various minority groups in Western European countries, and Aboriginals in Australia [22,24,28,29,32,33,39,46,58,85,88,90,92,94,104,107,119].…”

“…According to patients with LHL, HCPs tend to use medical jargon leading to misunderstanding and non-understanding of medical information, whereas patients preferred easy language and less use of medical jargon [29,30,73,101]. Patients perceived the use of medical jargon as lack of communication, which had a negative impact on their health, self-management behaviours, emotions, and mental well-being [57,92,106].…”

Using narrative inquiry to listen to the voices of adolescent mothers in relation to their use of social networking sites (SNS)

“…Using narrative inquiry allowed the author to present the stories of participants’ experiences holistically in all their complexity and richness. Listening to the voices of those in certain situations or with specific conditions is a recognized and valued strategy when designing individualized health care or education services (Ehrlich & Dannapfel, ; Laukka, Rantakokko, & Suhonen, ; Robotin et al., ). Having identified the deeper meanings behind and attributed to, adolescent mothers’ use of SNS the author was led to consider future ways in which healthcare professionals could possibly embrace SNS as a tool to further enhance social capital for adolescent mothers.…”

Using a chronic hepatitis B Registry to support population-level liver cancer prevention in Sydney, Australia

“… 24 Having trained GPs delivering language-concordant hepatitis care to their patients enhances continuity of care and avoids unnecessary specialist referrals, which are fraught with patient–doctor communication challenges, even when interpreters are available. 30 …”