The standardised cancer booklet and beyond: Patient perspectives on patient education for breast cancer care

Abstract

Objective:

This qualitative study engaged with breast cancer patients to create a standardised cancer education booklet. This paper identifies lessons from that engagement process, showing how patients experienced their cancer education and how they were able to ensure their concerns and priorities were included in the standardised patient education booklet.

Method:

In semi-structured focus groups and interviews, patients reviewed the print materials they had received and a draft standardised booklet. Discussions were then analysed thematically through comparison and interpretive coding.

Results:

Patient education needs to provide key information on breast cancer and its treatment while also providing the kind of educational support that can strengthen patient capacity to take decisions, feel a sense of control, and move through the journey with optimism and courage.

Conclusion:

Patient education, including standardised materials, can reflect patient autonomy and empowerment if patients are engaged in developing educational materials in a broad, inclusive and sustained way.