CCY’14: Development of a Talking Book to facilitate communication between radiation therapists & cancer patients with low health literacy.

Development of a Talking Book to facilitate communication between radiation therapists & cancer patients with low health literacy. 

Project Lead: Dr Sian Smith,  Psychosocial Research Group, Prince of Wales Clinical School, UNSW Australia.

Co-investigators:

  • A/Prof Bettina Meiser, Psychosocial Research Group, Prince of Wales Clinical School, UNSW
  • A/Prof Michael Jackson, Radiation Oncology, Prince of Wales Hospital (POWH)
  • Dr Joseph Bucci,  Radiation Oncology, St. George Hospital (StGH)
  • Dr Haryana Dhillon, Centre for Medical Psychology and Evidence-Based Decision-Making, University of Sydney (USyd)
  • A/Prof Christopher Milross, Radiation Oncology, Chris O’Brien Lifehouse
  • Dr Georgia Halkett, Curtin University, WA
  • A/Prof Winston Liauw, Cancer Care Centre, StGH
  • Mr George Saades, Radiation Oncology, POWH
  • Dr Joanne Shaw, Centre for Medical Psychology and Evidence-Based Decision-Making, USyd
  • Dr Diana Naehrig, Radiation Oncology, Chris O’Brien Lifehouse
  • Dr Heather Shepherd, Surgical Outcomes Research Centre, USyd

Project Aim:

To develop and pilot-test a novel educational tool, a ‘Talking Book’ (print-based booklet with accompanying audio-recording), to facilitate communication between patients with low health literacy and radiation therapists. The aim of providing a talking book is to increase patient knowledge, reduce anxiety and promote patient-centred care.

Background:

Radiotherapy is a commonly used cancer treatment, offering potential cure or palliation of symptoms. It is recommended that around 50% of all cancer patients should receive radiation therapy as part of their treatment to improve local control and life expectancy. Understanding radiation therapy treatment can be challenging, and misconceptions about the purpose of treatment and technical improvements, are common leading some patients to decline radiotherapy treatment. 

Poor patient understanding of radiotherapy exists alongside evidence that most people with cancer prefer to be fully informed and involved in decisions about their treatment and care.  Consistent and timely information is critical to alleviating patients' psychological distress and misconceptions about radiotherapy.

There is growing awareness that many patients do not have adequate health literacy skills to gain access to, understand and use information in ways which promote good health.In Australia, up to 60% of the general population lack basic health literacy skills, with the elderly, ethnic minorities, and socially disadvantaged populations most affected. As well as being linked with a wide range of adverse health outcomes, patients with lower health literacy receive less information, ask fewer questions, and are less satisfied with health care provider communication. Previous research conducted by the Psychosocial Research Group at UNSW Australia shows that individuals with low health literacy want to be involved in health decisions but often lack the knowledge, skills, and confidence to communicate with health professionals and navigate the health system.

Project Design:

The Talking Book will be developed using low literacy design principles by an expert review panel consisting of health communication researchers, radiation oncology health professionals and consumers representatives from cancer organisations. It will address a range of topics, including information on radiotherapy as a cancer treatment, preparing for treatment, treatment planning, daily treatment information, treatment related side-effects, impact on daily activities, post-treatment advice, and psychosocial health and well-being.  A pre-post questionnaire study will be conducted with 40 radiotherapy patients, identified as having low health literacy, attending St. George and Prince Wales Hospitals in Sydney. This study will determine the feasibility of using the tool in clinical practice, and whether it can increase patient knowledge of radiotherapy and reduce anxiety before treatment commences. Qualitative interviews will be undertaken with patients and radiation therapists, and a series of consultations will be recorded to explore how the tool is used in practice. 

Project Updates:

- October 2014: CCY Talking Book Project Eases Radiotherapy Fears for Cancer Patients

- July 2014: Announcing the TCRN Cancer Challenge of the Year 2014

The Cancer Challenge of the Year is an annual TCRN-funded research initiative. It provides up to $100,000 to support up to two translational research projects that seek to meet an unmet need in cancer patient care or treatment.

For further information regarding the CCY14 ‘Talking Book’ project, contact the TCRN