The Development and Implementation of a Culturally Safe Survey for Measuring Knowledge, Attitudes and Values around FASD and Alcohol Use During Pregnancy in a Remote Australian Aboriginal Community Setting

Fetal Alcohol Spectrum Disorder (FASD) describes a lifelong neurodevelopmental disability caused by prenatal alcohol exposure that has a devastating impact on individuals, families and communities. The prevalence of FASD is high in some Indigenous communities around the World and the only active case ascertainment prevalence study conducted in Australia found a rate of 19.44 per 100 children in the remote Fitzroy Valley region of Western Australia. Following this study community led FASD prevention activities were implemented under the Marulu (“Worth Nurturing”) Strategy in the Fitzroy Valley. A Knowledge, Attitudes and Practices survey was designed to assess the impact of the prevention campaign and gather more information about knowledge of the dangers of alcohol use in pregnancy and FASD, local attitudes, and health behaviours both around alcohol and more generally including where residents received their health information. Best practices recommend including local Aboriginal people in the development of surveys and aiming to achieve cultural security. Actions taken included consulting with local health workers during survey development, translation of key sections of the survey into the local Kimberley Kriol, and performing the surveys with the assistance of Aboriginal Community Researchers. The full survey is made available in this paper. The surveys were conducted with 200 community members during August 2015 and 203 in October 2015. Surveys were updated between the first and second waves based on learnings during implementation. Key implementation details around weather and timing, gender/kinship issues, group participation, declining participation, problematic questions and responses to the survey are described. Cultural safety was achieved but further steps could be taken to ensure future cultural security by embedding cultural safety protocols in the survey and further community consultation