Improving young people’s experience with radiation therapy
The Cancer Care team in production of the CCS Radiotherapy overview for adolescent and young adult (AYA) patients.
Radiation therapy services improving patient education in partnership with young people requiring cancer care at the Royal Brisbane and Women’s Hospital.
This initiative was identified as a priority when members of the Radiation Therapy Adolescent and Young Adult Special Interest Group collated narratives around young patients experiencing being overwhelmed or having anxiety in preparation for Radiation Therapy. Many young people expressed that they felt relief once they had received some treatment, reporting significant fears at the thought of being given radiation. Some young people also reported not feeling comfortable asking simple questions about radiation treatment, often waiting to ask until their treatment was nearly completed.
Through this initiative two multimedia resources were created to ease feelings of overwhelm and fear through providing visual, audio and written information about radiation therapy, what treatment will be like and what treatment was like for other young cancer patients. The resources were produced using a co-design methodology to meet the consumers’ education needs and learning preferences. Adopting this methodology was critical as young people are often disadvantaged in healthcare systems due to models of care being orientated to adult patients that do not recognise the unique needs of young people.
To ensure the resource production was optimal and successful, the team focused and engaged in co-design in all phases of the resources’ development. Consumer co-design methods included:
- Consumer-led design mapping – enabled the design stages of the resources to be founded upon former patients’ expertise from the beginning. This allowed for an educated virtual front door for young people about to embark on their radiation therapy treatment journey.
- Monthly meetings with the leadership team
- Consumer consultation – Queensland Youth Cancer Services Youth Advisory Group through surveys and reviews
- Professional consultation via surveys and reviews from clinicians and Non-Government Organisation service providers.
From partnering with our young patients two resources were developed:
Resource 1: CCS Radiotherapy overview for adolescent and young adult (AYA) patients on Vimeo – this is a targeted education resource for young patients which provides an overview of radiation therapy.
Resource 2: Leukaemia – Metro North Health – delivers treatment-specific education to young patients receiving Total Body Irradiation prior to a bone marrow transplant.
The co-design process resulted in valuable resources that were highly acceptable to stakeholders who evaluated and supported its clinical adoption. The resources are being continuously evaluated by current patients accessing radiation therapy services. Feedback from young oncology patients, families and health professionals is continuing to be collated to support the use of the resources. Formal evaluation continues to be gathered through structured surveys.