Parent Voice Opportunities | Peeps | HIE Awareness & Support

Parent Voice Opportunities

12
Jul

Parent Voice Opportunities

We just wanted to share with you some of the current ways in which HIE parents/carers, can get involved in research projects, ensuring that all our voices are heard.

If you’re interested or would like to find out more, please pop a message over or email info@peeps-hie.org

As always, if anything is a trigger, or you find upsetting, please get in touch as support is always here for you.

Little Journey

Little Journey has been commissioned by NHS NICU teams in the East of England, to create a support app for parents-to-be and parents with children on the NICU wards. This support app aims to help families throughout their whole journey from arrival through to going home (and beyond if further support is required).
The Little Journey team is currently in the design phase of the project. They have worked with some parents and NICU staff in the East of England NHS hospitals, but want your help and opinions (as HIE families) on the app they have created so far to make sure the solution will really work for parents.
The application features interactive virtual tours of the wards and rooms, explanations of equipment and procedures, all alongside articles, checklists and contact information for support services.
You can find out more about Little Journey here: www.littlejourney.health
Involvement
How – Online workshop
Time commitment – 1.5 hours
When – 22nd July, 10am-11.30am
Named contact : Sophie Copley, Little Journey

The Eaglet Study

This study is looking at two different brain monitors to detect seizures in the newborn.
They are looking for someone with HIE / seizure experience to join the trial steering committee.
Involvement
How – Online
Time commitment – 2 meetings per year
When – Starting in the Autumn
Named Contact – Topun Austin, Consultant Neonatologist

Parental experience of cooling

Researchers at the UCL EGA Institute for Women’s Health are looking for volunteers to participate in a study exploring parental experiences of having a baby admitted for neonatal care following diagnosis of HIE/NE (neonatal encephalopathy) and discharged home. Find out more and participate by emailing emma.teelucksingh.21@ucl.ac.uk. If you have any questions, please contact us. Thank you!
Involvement
How – Interview (online possible)
Time commitment – 1 meeting
When – starting July/August
Named Contact: Emma Teelucksingh, MSc Student

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