The experiences and decision making of patients with incurable cancer and health literacy difficulties

Objective Shared decision making is important when decisions are preference sensitive, as in incurable cancer. A prerequisite for shared decision making is health literacy, which is essential to facilitate good understanding of an individual's current situation, the decision to be made, and the options available to them. This study sought to learn about the challenges for shared decision making faced by patients with incurable cancer and health literacy difficulties. Methods Semi-structured telephone and video interviews were used to collect data on participants' experiences, decision making, and challenges faced. Study procedures followed health literacy principles, with information offered in various formats to suit individuals' preferences, the use of a verbal consent process, and flexibility in whether interviews were conducted over telephone or video call. Data were analysed using Framework Analysis (Ritchie et al. 2003), with initial verbatim transcription of interviews, iterative development of the analysis framework, indexing using Nvivo 12 software and summarising of the data before systematic categorisation and development of final themes. Results Twenty participants (aged 31-80, of whom 13 male) with a variety of cancers (including breast, central nervous system, gastrointestinal, gynaecological, lung, head and neck, and urological) and experience of a range of treatments were interviewed. Seven themes were identified, including: supportive staff in an imperfect system, additional pressure from COVID-19, in the expert's hands, treatment not so bad, emotional hurdles, accessing information to further understanding and wanting to be a good patient. Conclusion In order to support patients with incurable cancer and health literacy difficulties to become involved in decisions about their care, we must address the emotional, social and informational challenges they face. Recommendations for achieving this include addressing peoples' emotional needs, facilitating control over information, developing a partnership, involving others, and organisational changes.