Poster & Mini-oral COSA 2015 ASM

Development and acceptability of a radiation therapy talking book for people with low health literacy (#158)

Sian K Smith 1 , Maria Cabrera Aguas 1 , Joanne Shaw 2 , Heather Shepherd 2 , Georgia Halkett 3 , Haryana M Dhillon 4
  1. Psychosocial Research Group, Prince of Wales Clinical School, University of New South Wales, Randwick, NSW, Australia
  2. Psycho-Oncology Cooperative Research Group, University of Sydney, NSW, Australia
  3. School of Nursing and Midwifery, Faculty of Health Sciences, Curtin University, Perth, WA, Australia
  4. University of Sydney, Sydney, NSW, Australia

Background 

Radiation therapy is a commonly used cancer treatment, offering cure or symptom palliation. It is poorly understood by patients, causing anxiety due to unclear expectations and concerns about side effects. Clear information is critical to alleviating distress and misconceptions. Few resources for low health literacy populations exist.

Aim:  to explore acceptability and comprehension of a low literacy Talking Book (print-based booklet, with audio-recording) about radiotherapy.

Methods

Talking Book content was informed by patients’ radiotherapy information needs and input from a multidisciplinary steering committee. It comprises sensory and procedural information informing patients about experiences (feel, hear and see) during treatment, key sections: goals of radiotherapy, planning and preparing, what daily treatment involves, side effects and management, psychosocial health and well-being, and glossary. Visual illustrations and simple diagrams were incorporated to support the text. We conducted semi-structured interviews with patients identified as having low health literacy, carers, and one focus group with cancer consumers to explore understanding of the Talking Book . Thematic analysis using Framework approach was used.

Results

We identified four themes: (1) concept of a Talking Book, (2) appraisal of content, language and structure, (3) perceived benefits and challenges of using the Talking Book, and (4) creating realistic expectations of treatment. Participants provided largely positive feedback about the Talking Book with regard to the simplified language, use of illustrations and having different media (written and voice) to deliver information. Some participants seemed confused by the Talking Book's purpose perceiving its to increase uptake of radiotherapy. The resource was perceived as empowering patients to ask questions.

Conclusion

The concept of a Talking Book offers an innovative way to present information and prepare patients for treatment. Our next steps are to pilot test the Talking Book with patients examining effects on knowledge, anxiety, radiotherapy concerns, and communication with treatment teams.