Development of a communication and health literacy curriculum: Optimizing the informal cancer caregiver role.

Abstract

The aim of this study was to develop learning objectives and identify content for a core communication and health literacy curriculum designed to optimize the role of informal cancer caregivers (family or friends). A three-step process was conducted: (a) two-round online Delphi method process with experts (n = 9) in cancer caregiving to gain consensus on curriculum learning objectives; (b) online survey of oncology providers (n = 32) to generate potential content and rate importance of domains; and (c) focus group of cancer caregivers (n = 6) to explore caregiving experiences and curriculum content topics. Overall, 17 learning objectives and 53 topics were identified for a cancer caregiver communication and health literacy curriculum. Feedback from cancer caregivers did not produce any new topics yet confirmed topics generated by experts and providers. The curriculum identified as essential has been organized under the following headings: finding cancer information; assessing and integrating information; working with health care providers; getting help; talking with the care recipient; recognizing the care recipient's needs; and planning for caregiver self-care. This theoretically grounded study systematically identified seven curriculum topic areas and content unique to caregivers and included input from key stakeholders. The next step is to develop the program for dissemination and to test its impact on caregiver and patient outcomes.