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.

How do women talk about self-funded breast cancer genetic testing?: Small stories and stance-taking strategies.

Genetic testing for breast cancer genes is an experience which is inextricably linked with health communication practices and the broader social context in which it occurs. Linguistic approaches can provide perspective on how women seeking self-funded BRCA1/2 gene testing represent their experiences, knowledge, roles, choices and emotions through the way they talk. A discursive constructionist epistemology and narrative theoretical framework informed the applied linguistics methodology. Analysis of 'small stories' and stance-taking was performed on eight transcripts of audio-recorded telephone interviews with women at low to moderate risk of carrying BRCA1/2 pathogenic variants who self-funded genetic testing. We found a high prevalence of 'small stories' including accounts of events, hypotheticals, habitual narratives, and stories which combined multiple genres. Stance-taking was a means by which participants constructed personal identities in the conversational context, such as that of a responsible person. Via stance-taking strategies, participants also actively negotiated the conversational agenda, for example expressing different degrees of alignment with the interviewer's orientation towards emotions. This study provides a basis for recognizing linguistic markers in genetic counseling interactions about genetic testing for breast cancer genes. Enhanced awareness of client language choice, and the ways in which small stories and stance can signify the client's evaluation of experience and choices, alignment with the genetic counselor's questions/statements, and investment in the conversation, has potential to improve the therapeutic interaction.

Cross-Cultural Interpreting With Aboriginal and Torres Strait Islander Patients.

The aim of this study is to investigate ways in which interpreting practice in health care settings can be further developed to better facilitate communication with Aboriginal and Torres Strait Islander patients. Data used include 15 hours of transcribed audio recording from semi-structured interviews with interpreters and Aboriginal Liaison Officers who discuss their perceived experiences of interpreting in medical settings. They offer insights into how language is used to resolve communication differences that may confound the interpreting process and in doing so identify roles interpreters assume and discourse patterns that emerge in interpreting practice. As evidenced through the findings, provisions need to be made for cultural differences. Interpreters report they have to "unpack" medical terminology and explain such terminology and related concepts in tangible terms to ensure patient understanding. Other strategies include talking about taboo topics using culturally appropriate terms, avoiding certain question-answer routines, and being aware of nonverbal aspects of communication.