On the 22nd of March 2022, a first ChromaDose Parent and Carer Online Workshop took place with project lead Prof Stefan Guldin, PPI lead Lisa Pfaffenrath and Neil Ranasinghe, lead of the parent group PORT (Paediatric Oncology Reference Team).
Parents/carers from PORT and GOSH (Great Ormond Street Hospital) participated in the workshop. It aimed to follow up on our findings from the initial online consultation with the parents/carers at the project start, which took place between April and June 2021.
Parents/carers responded to three focus themes namely (i) blood sampling, (ii) confidence in technology and (iii) modes of interaction.
The topics were covered in joint sessions via the interactive whiteboard (Google Jamboard) and Google Forms for individual follow-up questions.
The first activity was centered around ‘How could we convince you to participate in a clinical study for therapeutic drug monitoring’, where motivating factors included:
· Higher chance of cure for cancer treatments
· Helping children in the future
While parents also raised concerns around:
· Risk of infections through additional blood tests, even when accessing the central line
· Additional visits to the hospitals
The second activity was centered around the parents’ endorsement of a point-of-care blood testing tool, where advantages were identified, such as
· We can avoid human errors
· Quicker results
· Can be more accurate than previous way of taking blood
While some concerns were raised around:
· Risk of mixing up blood samples in the machine
· Faults fixes or maintenance of the machine
· Noise
· Difficulties for nurses and doctors to operate the instrument
The outcomes of the session are currently further analysed and will be reported back to the engineering team for incorporation in the ChromaDose design cycle.
In the future, we will continue our work with the parents and carers with upcoming focus themes on patient information material and device design.