Background: For many, breast reconstruction following a mastectomy (BR) forms an integral part of breast cancer survivorship. For those considering BR, provision of information is essential to allow informed decisions to be made. There is a need to understand the current gaps in information in order to develop resources that can assist people in this decision-making. Using free text responses from a survey of members of Breast Cancer Network Australia (BCNA), this study aims to understand the type of information needed.
Method: At the end of an online survey assessing BR experiences, participants were asked the open-ended question: “Thinking about women who may experience BR in the future, is there anything you think needs to change so that they have a better experience?” Free-text responses were analysed to identify common themes.
Results: The survey was completed by 3,384 people with 2,077 (61%) providing a response to the open-ended question. Three overarching themes were identified: (i) content of information, (ii) managing expectations, and (iii) information sources, each associated with multiple subthemes. Women wanted information to cover a broad range of topics including: BR options (including types of procedures); risks, process of recovery and options for ‘going flat’. Information on the psychological impact of BR was also needed, with comments indicating many were not prepared for this impact. Theme (ii) stressed the importance of realistic information about BR outcomes and processes, to reduce dissatisfaction due to discrepancies between expectations and experiences and help normalise experiences. Peer insights and photos were important sources of realistic information seen as contributing to decision-making.
Conclusions: Multiple gaps exist in current information regarding BR. Those considering BR want information that is comprehensive, realistic, and provided at the right time to inform decision-making. Developing new strategies and strengthening existing provision of information might enhance overall experiences of BR.