Exploring the information needs of breast cancer patients and families in a large, urban, academic hospital: perceived barriers and facilitators to finding relevant and credible information.

PURPOSE: This qualitative phenomenological study explored the lived experiences of breast cancer patients and caregivers in navigating cancer-related information.

METHODS

Semi-structured interviews were conducted with 16 participants (13 patients, 3 caregivers), most of whom were female (n = 13), highly educated, and reported strong digital and health literacy. Participants' ages ranged from 36 to 71 (M = 52). The majority were navigating invasive breast cancer, with a smaller number diagnosed with ductal carcinoma in situ. Interviews focused on participants' experiences with information access, evaluation, and use across the cancer journey. Data were analyzed thematically.

RESULTS

Despite high education levels, participants described feeling unprepared and overwhelmed by the amount and complexity of cancer information at diagnosis. Three themes emerged: (1) Tension Between Physician Guidance and Patient Autonomy, highlighting mixed feelings about clinicians' discouragement of independent research; (2) Information Overload and the Need for Timely, Personalized Communication, with a preference for specific guidance over large volumes of information; and (3) Unmet Needs for Tailored, Inclusive, and Accessible Support, as participants, especially male and racialized individuals, struggled to find information and peer support reflecting their identities and experiences.

CONCLUSION

Findings reveal persistent information gaps underscoring the emotional and cognitive burdens of breast cancer information seeking.