How to know what to know: Information challenges for women in the diagnostic phase of breast cancer
Ilja Ormel, Mona Magalhaes, Debbie Josephson, Linda Tracey, Susan Law
Abstract
OBJECTIVE: To explore how women describe efforts to seek, appraise and interpret information during the diagnostic phase of her breast cancer care. METHODS: Qualitative interviews with 35 women with breast cancer across Canada, using audio/video recording. Thematic analysis was used to identify topics important to participants (original results published: www.healthexperiences.ca). Secondary analysis of transcripts to identify how women described information flow, content, and management strategies. RESULTS: Women adopt different strategies to optimize access to information, while acknowledging the negative effects of information overload and lack of relevant information. They propose small steps towards gathering and managing information, and to focus initially on understanding their illness. CONCLUSION: Different strategies can help to ensure that women have the right information, in the right format, at the right time. Some of these strategies include developing guidance on how to 'handle' information, helping healthcare professionals identify patient's information preferences, improving the availability, quality and access to experiential information, and facilitating acces to electronic information that can tailor information. Further research to understand how women handle information can inform strategies to help newly-diagnosed patients navigate available information. PRACTICE IMPLICATIONS: Healthcare professionals can work in partnership with patients to tailor reliable information to support informed decision-making.