Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026
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.
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Ugas Mohamed, Giannopoulos Eleni, Tan Jessica, Cil Tulin D, Croke Jennifer, Forbes Robin, Giuliani Meredith E, Koch Anne, Papadakos Tina, Quartey Naa Kwarley, Snow Michelle, Westergard Shelley, Papadakos Janet
Аннотация
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.
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.