Proceedings of the 8th World Conference on Qualitative Research

Introduction: Approximately 1 in 8 women will develop breast cancer over their lifetimes. Persons diagnosed with breast cancer face significant stress navigating medical institutions, making treatment decisions, and negotiating social and financial support. Persons on this journey often have psychosocial needs (e.g., mental, emotional, social, and spiritual) that are frequently unmet. Research suggests the time between initial diagnosis and first treatment, or the diagnostic period (DP), is particularly emotionally turbulent. Given the heightened need for support during the DP, this pilot study aimed to identify events women diagnosed with breast cancer described as significant and to characterize social, emotional, and informational needs unmet during the DP.
Goals and Methods: We conducted narrative interviews and used timeline mapping to identify gaps between desired and received support for five women treated for breast cancer at an academic hospital in the U.S. Interviews were audiorecorded, transcribed, and analyzed thematically using a deductive-inductive approach. We created timelines indicating significant events (e.g., diagnostic events, medical procedures) and mapped participants’ perspectives of met and unmet needs onto these timelines. We verified the validity of timelines with all participants.
Results: Participants highlighted four significant periods throughout the DP: pre-diagnosis, undergoing diagnostic tests, making treatment decisions, and receiving the initial treatment. Throughout the DP, participants desired health care providers to acknowledge the uncertainty and fear patients experienced. Participants also communicated the importance of streamlining and coordinating appointments, ensuring that patients heard and understood the information they were given, and connecting patients to cancer survivor networks, and other non-hospital resources (e.g., for wig and prosthesis purchasing) early. These unmet care expectations generated feelings of vulnerability.
Conclusions: Our research highlights gaps in support during the breast cancer DP that should be addressed to decrease patients’ stress and vulnerability.