Exploration of health information needs of persons affected by complex cancers and evaluation of co-designed video-assisted health education.

Abstract

Purpose Persons with cancer and their families are given a range of complex information (written and verbal) to assist them in managing treatment and side effects at home. This study explored the health information needs of patients and family members and investigated whether video-assisted health education improved understanding of information for persons with complex cancers. Method A co-design framework with health consumers and clinicians was used to identify concepts and create videos. Qualitative interviews and thematic analysis of participant demographics explored the health information needs and acceptability of the videos. Persons affected by brain, head and neck and gastrointestinal cancer were included. Results Eleven interviews were conducted with patients and family members, aged between 39 to 82 years. The health literacy levels reported by participants highlighted the need for help with medical information and forms. Four themes were developed: sorting through information, acceptability of videos, balance of caring, and information presentation. Conclusion Information provided in different formats and tailored to meet the individuals’ health literacy levels can reinforce key points from the health professionals and improve health outcomes. Video-assisted health education improves the patients’ and families’ understanding of information and ability to make informed decisions regarding their cancer treatment and self-care at home. Digital resources may provide a way to improve the understanding of health information, although digital literacy levels influence access, but this requires further investigation.