When a patient is being tested for or has received a blood cancer diagnosis it is not only overwhelming and life changing, but the treatments can be lengthy and complex and often require patients to be urgently admitted to hospital and they often don't get to return home for months. To assist with this, face to face education sessions are given to patients and families and patient consent gained, prior to any treatment commencing. These sessions are usually accompanied by giving patients handouts and booklets for further review and consolidation of information. Through treatments, patient empowerment and engagement in self-care practices is essential and encouraged to assist the treating team manage and reduce the side effects of treatment.
We noted a significant deficit in the suitability of current patient booklets and resources for people with low English literacy or resources which acknowledged and addressed Aboriginal and Torres Straits Islander patients. Resources were heavily text based, with few graphics and did not assist the clinician to easily bridge the communication divide for the various patient cohorts with low English literacy. There was a distinct need for information booklets which were pictorial-story based, to transcend language and literacy barriers.
Applying clinical knowledge and interest in art and in lengthy consultation regarding cultural safety and clinical content with Haematology teams, Indigenous health workers and patients, I developed five evidence - based, pictorial booklets, primarily pitched for Australian Indigenous patients diagnosed with a hematological malignancy.
The booklets use the visual medium of illustrations and simple wording, commonly used by Indigenous Australians such as 'mob' for people to transfer information. It is vital for patients to feel informed and understand what is being explained to them when consenting to treatment. Patients also need to understand and feel empowered to engage in self-care. Having simple, clear information displayed predominantly through graphics with a reduce volume of text, and using text that is conversational with little medical jargon, can assist the clinician to impart information by appealing to their visual as well as audible learnings styles (Very well mind,2024).
The booklets cover the likely one to two years of intensive treatments, including the complexities of auto and allogeneic stem cell transplants. The graphics are specific and colourful and even explain basic anatomy such as, what cells are, as many Indigenous languages do not have a word for 'cell', which makes discussions of 'sick' cancer cells challenging.
The booklets met favorable reviews from all parties engaged in their evaluation and agreement was reached that there were deficits in the resources available for First Nations Australians and those with low English literacy.
In September 2023, the Leukaemia Foundation of Australia, endorsed the booklets and became the repository for patients and clinicians to freely order or download these resources to support their comprehension needs.
