Background: For those considering Breast Reconstruction after mastectomy, information is essential to ensure informed decisions are made. Using free text responses from a survey of members of Breast Cancer Network Australia (BCNA), this study aims to understand the type of information women want in relation to BR and identify gaps in information provided.
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 thematically utilising an experiential perspective with codes and themes capturing respondents’ viewpoints. Codes sharing similar meaning were amalgamated into subthemes, which were grouped to form overarching themes.
Results: Of those completing the survey, 2,077 (61%) provided a response to the open-ended question. Three overarching themes were identified. Theme 1 ‘content of information’, reflected the need for information to cover a broad range of topics including BR options (types of procedures); risks and recovery. Information on the psychological impact of BR was also needed, with comments indicating many were not prepared for this. Theme 2 ‘managing expectations’, stressed the importance of realistic information about BR outcomes and processes, with this information seen as essential to reducing dissatisfaction arising from discrepancies between actual and expected outcomes. Theme 3 ‘information sources’ focused on sources of information that could provide realistic information. Access to those with previous BR experience and photos were mentioned as important sources of realistic information.
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 resources where needed and ensuring adequate distribution of existing information might enhance overall experiences of BR.