How will the decision aid be developed?
The decision aid will be developed following the International Patient Decision Aids Standards (See Decision Aid page). These standard provide a systematic development process meeting set criteria to ensure the development process is robust and transparent.
To support the decision aid development, a steering group consisting of parents and healthcare professionals will have input into the design, content and, format. This collaborative working is important to support the integration of the decision aid in clinical practice. A web development company which has experience of developing health related decision aids will work with the steering group to develop the decision aid.
Once developed, parents and healthcare professionals will be asked to user test the decision aid.
How will parents and healthcare professionals participate in user testing?
Parents and healthcare professional can self-refer to participate in user testing the decision aid. User testing will be carried out through an interview with Helen Pearson. This involves reviewing the decision aid to assess its usability (how easy is the decision aid to use, navigate and understand) and acceptability (is the language, content and design appropriate).
Self-referral to participate can be through completing the contact form below or by direct message on @redmapp_study twitter page. Recruitment adverts will also be publicised on charity social media platforms. By making contact, this means Helen can send either the parent/healthcare professional participant information pack for phase 2 (which is different to phase 1). Helen will send the information pack to the email address provided and arrange a follow-up phone call to discuss the study a minimum of 24 hours later. The parent or healthcare professional can then decide to participate or decline being involved in user testing the decision aid. Speaking with Helen does not mean they have to participate.
What happens if a parent or healthcare professional agrees to participate?
If a parent or healthcare professional agrees to be involved in user testing the decision aid, an interviews will be arranged. The interview will be at a time and location which is convenient for the parent/healthcare professional. This will need to be face-to-face with access to a computer/internet. The interview date/time/location will be organised at the time a person agrees to participate in the study (this would be when the parent/healthcare professional and Helen speak to discuss the study). Consent will be taken at the time of the interview. A copy of the consent form is in the participant information pack which can be read in advance to understand what is being consented too.
The contact form below will be enabled when recruitment for phase 2 is open. This is anticipated to be late 2022 or early 2023. Updates will be provided via the REDMAPP website and twitter page.
What happens once the decision aid is ready?
We need to support parents and healthcare professionals in how to access and use the decision aid. This will be achieved in a variety of ways:
- Information sheets and infographics of how to use the decision aid will be created for parents and healthcare professionals
- Sharing the findings throughout the paediatric oncology community through presentations at parent and healthcare professional national and international meetings and conferences to maximise impact and awareness
Whenever change is implemented it is important to evaluate its effectiveness in clinical practice. Therefore the decision aid will require ongoing evaluation and adjustments to ensure it is fit for purpose and meets the needs of parents who are making repeated treatment decisions.