On 30 November 2023 we ran our final co-creation workshop of the year in which we continued to build a roadmap for parents who are considering enrolling their child in a clinical trial, or whose child is already enrolled. In this session we welcomed participants representing three groups:
- Parent/carer of a preterm baby or young child who might be eligible for a future stem cell treatment and/or adult who was born preterm
- Clinician or other health professional
- Researcher
Once again we started the session with a quick warm up activity. The participants were asked to find an object which could represent a magical hat and using this prop, to reveal to the rest of the group the kinds of skills they could bring to the session. They mentioned open-mindedness, imagination and lived experience to name a few.
For the rest of the session we continued to build on the ideas and road map started by the participants in the previous workshop. The new participants offered new perspectives and raised questions for returning members of the group, such as how to incorporate peer to peer support in the road map.
Other important points which were raised were how to explain to parents what would happen if they chose not to enrol their child in the clinical trial, making sure that they understand that investigators may also not know if their child is receiving the treatment, and key terminology that we should avoid using in our communications to parents.
In the next workshop we plan to finish the roadmap for parents and tackle the other four issues/problems which came out of the interviews with this group. In the final workshop we plan to address and co-design solutions for issues/problems which arose from the clinician interviews.
PREMSTEM’s co-creation activities will conclude in early 2024 with two final workshops:
- Workshop 9: Wednesday 24 January 2024 – 8-11am Central European Time | 6-9pm Australian Eastern Time
- Workshop 10: Thursday 15 February 2024 – 8-11am Central European Time | 6-9pm Australian Eastern Time
Any new participants who would like to take part can let us know via our website contact form.
We’d like to thank everyone who has participated and contributed to co-creation activities in 2023, including all 16 interviewees as well as attendees of the last three workshops.
