Exploring Information-Seeking and Utilization Behaviors Among Cancer Patients and Caregivers in Western Washington

Adequate information provision to cancer patients and their caregivers is pivotal in managing health, improving quality of life, and enhancing patient activation. This study assesses the health information-seeking behavior of cancer patients and their non-medical caregivers in Snohomish, King, and Pierce Counties, Western Washington.

This study was conducted from November 2020 to April 2021. Initially planned as in-person focus groups, the study adapted to virtual settings due to the COVID-19 pandemic, utilizing Zoom to conduct detailed interviews with 31 participants. Individuals with at least one cancer diagnosis and family members involved in caregiving were recruited, while those with healthcare backgrounds were excluded. Data collection focused on information-seeking behaviors, utilization of information received, and the credibility of various information sources.

Findings indicated that while medical teams are primary information sources, substantial gaps exist. About 55% of participants deemed the information from their doctors upon diagnosis as adequate, yet 45% found it insufficient. Consequently, 100% sought additional information from the internet, family, and other non-medical sources. This behavior reflects a broader trend where individuals are overwhelmed by the volume of initial information yet find it necessary to seek further details independently, especially concerning treatment options, side effects, and prognosis. Participants utilized this information to make treatment decisions, develop questions for healthcare providers, and advocate for themselves or their dependents. Despite these efforts, 39% noted their medical team was too busy to address their information needs, highlighting a crucial gap in patient-provider communication.

This study underscores the significant reliance on and need for diverse information sources among cancer patients and caregivers. There is a pressing need for healthcare providers to bridge the information gap by enhancing the accessibility and comprehensiveness of the information provided, ensuring it meets the individualized needs of patients in managing their health post-diagnosis. Additionally, improvements in the delivery of information could include self-paced methods and more accessible formats like videos and consolidated resource guides.