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.

Bakmaranhawuy - the broken connection. Perspectives on asking and answering questions with Yolŋu patients in healthcare contexts.

INTRODUCTION: Questioning is a key method in general information-seeking behaviour and teaching used by the dominant culture in Australia. Within an Australian health context the fundamental diagnostic tool used by medical staff is the biomedical interview or history taking, which is based on a battery of direct questions. Similarly, many health professionals rely on patient questions to prompt the sharing of information, or to make them aware of gaps in communication. This is problematic for many First Nations peoples, including Yolηu (First Nations people of North-East Arnhem Land), who are culturally less inclined to use direct questioning as it is deemed impolite within their cultural context. METHODS: Semi-structured conversational interviews using culturally congruent communication processes were conducted with participants in their preferred language. Interviews were translated, transcribed and analysed inductively using NVivo v12. RESULTS: A total of 30 participants were interviewed (10 health staff and 20 Yolηu with recent experience in engaging with health services). All participating health staff believed that questioning was essential for determining how to best treat patients but many felt that questions created problems for some Yolηu patients. They also felt that Yolηu patients ask fewer questions related to their health issues than patients of other cultures. Yolηu participants conveyed overwhelmingly negative experiences with the health system and at the tertiary hospital in particular. Yolηu participants described feelings of frustration, fear and trauma when talking of their experiences, and these feelings were often direct outcomes of poor communication with staff. Regarding the use of questions in health care specifically, Yolηu participants identified four key and interrelated conditions within which questioning was deemed an acceptable communication mechanism. Dhämanapan (connection) was identified as an essential condition for effective communication between health staff and patients. This connection was established and maintained through a shared understanding of matha (language), dukmaram (Yolηu understandings of healing) and djuηuny (Yolηu norms of polite communication). Strategies for overcoming barriers to effective communication related to the concept of dhuwurr (skill) in health communication, which could increase the acceptability of health staff asking questions of Yolηu and the confidence of Yolηu patients in asking questions of health staff. CONCLUSION: The findings from this study indicate a fundamental disconnect between the current health system and the needs of the Yolηu patients it seeks to serve. In order for this to change, Yolηu patients and health staff need to develop dhuwurr in health communication, which incorporates the four key conditions for effective communication identified in this study. To achieve this, ongoing and mandatory intercultural communication training for health staff is needed, just as mandatory training is required for hygiene and resuscitation training. Intercultural communication training must be comprehensive - reflecting the complexity involved in developing this dhuwurr - and sustained, for example with ongoing support from cultural communication mentors.