FormalPara Key Points

  • Radiation therapy talking books are potentially useful education resources for people with lower health literacy; however, these resources need to be culturally adapted to appropriately meet the needs of Aboriginal and Torres Strait Islander cancer patients and their families.

  • Consultation with Aboriginal and Torres Strait Islander people to ensure cultural acceptability of educational health resources is essential.

  • Effective health communication between clinicians and Aboriginal and Torres Strait Islander cancer patients and their families is critical to improving health outcomes.

Health literacy is strongly linked with reduced engagement with and uptake of health services and poorer health outcomes. In Australia, little is known about health literacy levels among Aboriginal and Torres Strait Islander cancer patients. Accessible and culturally responsive health information is an important aspect of optimal and equitable cancer care. Health information and resources are most likely to be successful with Indigenous Australians if they are developed, planned, and evaluated with community members, and if they adopt culturally appropriate communication methods (such as artwork and storytelling) [1, 2].

This case study describes the development of an Indigenous radiation therapy talking book for Aboriginal and Torres Strait Islander cancer patients, their carers, and health professionals.

Radiation therapy is recommended for approximately 50% of Australian cancer patients [3]. However, few resources exist that provide radiation therapy information to individuals with lower health literacy or that are specifically for Aboriginal and Torres Strait Islander peoples. Researchers in Australia have previously developed and piloted a radiation therapy talking book (RTB) to provide information for cancer patients with lower levels of health literacy [4], building on research that demonstrated the effectiveness of talking books in reducing anxiety and improving information recall in dementia and diabetes settings [5]. When trialed, the RTB significantly improved cancer patients’ knowledge and decreased their anxiety and concerns [6]. Nearly half of participants reported using the book during appointments, with many reporting it helped them to communicate with health professionals.

Developing an Indigenous Radiation Therapy Book (IRTB)

The original RTB was adapted by our team into a culturally appropriate printed booklet and an e-book for Aboriginal and Torres Strait Islander cancer patients and their carers.

Consultations were conducted with Indigenous people affected by cancer, including those who had previously received radiation therapy and Indigenous health professionals from three cancer centers. The consultations utilized Indigenous research methods such as Yarning Circles to gather stories, feedback, and ideas on an Indigenous RTB. The outcome of these consultations resulted in the original RTB booklet being adapted to (Fig. 22.1):

  • Add color, artwork, and more images of Indigenous Australians.

  • Reduce the amount of text and include more diagrams and illustrations.

  • Reorder the pages to support a storytelling approach.

  • Rearrange the information so it is more patient-centered.

  • Move information about patient and family support nearer to the start.

  • Add information about traditional medicines, healing, and natural therapies.

Fig. 22.1
An illustration compares the original book design and the revised I R T B design. The revised version prioritizes patient-centered content, includes more diagrams, illustrations, and incorporates Indigenous perspectives.

Snapshot of the original RTB and revised IRTB content and design

Full size image

Once our consultation groups approved the revised printed booklet, we converted it into an e-book IRTB.

The importance of hearing an Indigenous voice in the IRTB was highlighted through the Yarning Circles. As a result, local Indigenous voice actors were engaged to provide the voiceover. With support from an Australian online education specialist/designer, the audio and graphics for the IRTB were combined into an e-book with the graphics and audio matched page by page. The e-book was tested and revised to enable animations and text to appear with timing matched to the audio, and as each page was turned. This supported a storytelling approach, preferred by participants in our Yarning Circles.

Our IRTB e-book is best described as a tablet-based adaptation of traditional print-plus-audio talking books. It is an electronic flip book, with accompanying audio, allowing participants to read while they listen [7]. We developed a simple English-language version and a version in Yolngu Matha, a language used in north-east Arnhem Land in the Northern Territory (NT) of Australia and relevant for one of our study trial sites.

Training for Health Professionals

Our IRTB is designed specifically for Aboriginal and Torres Strait Islander cancer patients and their families/carers. The IRTB can also be used by radiation oncologists and therapists in discussions with patients about treatment options and during patient education sessions.

Radiation therapy requires conveying complex technical details to patients who might not be familiar with the terminology. Radiation therapists are pivotal in offering information and emotional support to patients. When information is communicated clearly, avoids excessive technical terms, and is presented in a way that is tailored to the patient’s level of understanding, patients are less likely to feel anxious or emotionally distressed [8].

To support health professionals’ use of the IRTB, we developed three short, Indigenous-specific, online communication skills training modules, including one about how to use the IRTB in clinics. Health professionals seeking to use the IRTB must complete all the training modules [9].

Implementation of the IRTB

Our Australian-specific e-book IRTB has been finalized and is currently being trialed and evaluated in three large cancer services: two regional cities in Queensland and one regional site in the Northern Territory. Indigenous cancer patients who are newly diagnosed and referred to radiation therapy will receive both a printed booklet, in which they can make notes, and the e-book IRTB. The project is due to be completed and evaluated in 2024.

The research is being conducted by the First Nations and Cancer Wellbeing Research Program at The University of Queensland, in partnership with the Royal Australian and New Zealand College of Radiologists, the Alan Walker Cancer Care Centre in Darwin, Townsville Cancer Centre, and the Radiation Oncology Centre in Cairns, and is funded by an NHMRC Partnership Grant (#1152653). We thank all of those involved in developing the radiation therapy talking book, particularly Dr. Lorraine Bell.