Why surveys are ‘very hard’: exploring challenges and insights for collection of authentic patient experience information with speakers of Australian First Nations languages

• Published in: Rural and Remote Health
• Main Authors: Anne Lowell, Yomei Jones, Robyn Aitken, Dikul Baker, Judith Lovell, Samantha Togni, Dianne Gon̲d̲arra, Beth Sometimes, Margaret Smith, Julie Anderson, Rachael Sharp, Maria Karidakis, Sarita Quinlivan, Mandy Truong, Paul Lawton
• Format: Article in Journal/Newspaper
• Language: English
• Published: James Cook University 2024
• Subjects: Australia; First Nations languages; Indigenous health care; intercultural communication; patient experience; survey methods; Special situations and conditions; RC952-1245; Public aspects of medicine; RA1-1270; First Nations
• Online Access: https://doi.org/10.22605/RRH8380; https://doaj.org/article/a9ec2ba23c894dd58432e979daefcecc

Introduction: Health services collect patient experience data to monitor, evaluate and improve services and subsequently health outcomes. Obtaining authentic patient experience information to inform improvements relies on the quality of data collection processes and the responsiveness of these processes to the cultural and linguistic needs of diverse populations. This study explores the challenges and considerations in collecting authentic patient experience information through survey methods with Australians who primarily speak First Nations languages. Methods: First Nations language experts, interpreters, health staff and researchers with expertise in intercultural communication engaged in an iterative process of critical review of two survey tools using qualitative methods. These included a collaborative process of repeated translation and back translation of survey items and collaborative analysis of video-recorded trial administration of surveys with languages experts (who were also receiving dialysis treatment) and survey administrators. All research activities were audio- or video-recorded, and data from all sources were translated, transcribed and inductively analysed to identify key elements influencing acceptability and relevance of both survey process and items as well as translatability. Results: Serious challenges in achieving equivalence of meaning between English and translated versions of survey items were pervasive. Translatability of original survey items was extensively compromised by the use of metaphors specific to the cultural context within which surveys were developed, English words that are familiar but used with different meaning, English terms with no equivalent in First Nations languages and grammatical discordance between languages. Discordance between survey methods and First Nations cultural protocols and preferences for seeking and sharing information was also important: the lack of opportunity to share the 'full story', discomfort with direct questions and communication protocols ...