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

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 that preclude negative or critical responses constrained the authenticity of the information obtained through survey methods. These limitations have serious implications for the quality of information collected and result in frustration and distress for those engaging with the survey. CONCLUSION: Profound implications for the acceptability of a survey tool as well as data quality arise from differences between First Nations cultural and communication contexts and the cultural context within which survey methods have evolved. When data collection processes are not linguistically and culturally congruent there is a risk that patient experience data are inaccurate, miss what is important to First Nations patients and have limited utility for informing relevant healthcare improvement. Engagement of First Nations cultural and language experts is essential in all stages of development, implementation and evaluation of culturally safe and effective approaches to support speakers of First Nations languages to share their experiences of health care and influence change.

Implementing Interventions to Improve Health Communication Equity for First Nations People: Guidance from a Rapid Realist Review.

Effective communication is critical for engagement between clients and health professionals, transfer of health information and health decision-making. Internationally, there is recognition that if health communication interventions were successfully implemented, then health communication equity would improve. This rapid realist review was undertaken with the aim of providing guidance on the circumstances in which communication interventions were likely to work in regional health service settings accessed by First Nations people from remote and very remote geographic areas of Australia. The realist review involved a process of searching literature on key terms and the identification of relevant studies and policies by a content expert group, including non-Indigenous and First Nations health researchers. Evidence was extracted to inform and synthesize into guiding principles, using a realist perspective. This review identified studies that provided evidence from 37 Australian and international settings where the dominant language and culture of the health sector differs from that of the majority of service users. A number of guiding principles were synthesized: 1) to build trust and respect by inclusion of an individual patient's cultural perspective; 2) to enhance concordant understanding of health information through two-way health literacies and learning; 3) to recognize the entanglement of health communication equity with regional socio-cultural and health determinants. This review generated realist informed guiding principles to suggest how and under what conditions health communication interventions can enable healthcare decision-making at an individual and service level.