Open I am looking for people in the UK who could share their insights and experiences of education

“I feel like a ghost.” How included to children and young people with chronic conditions feel in their education, and what can we learn from their lived experiences?

As a parent of a young person with ME/CFS, as well as a special education teacher, I bring these two aspects of my identity together for my PhD project, ethically approved by the University of Plymouth in the UK.

Anecdotally, children and young people with a chronic condition may experience difficulties in:

· Missing school, having no energy/time to catch up

· Falling behind peers, while still being academically able

· Losing friendships, connections with peers

· Being administratively excluded, e.g. not receiving letters

· Feeling a lack of belonging, “like a ghost”


This research is guided by a Lived Experience Advisory Panel, made of up of young people who have chronic conditions themselves. What works well for the inclusion of this group of young people in education? What are the challenges, for schools/educators, for the young people themselves, and for their parents/carers?

I am looking for people in the UK who could share their insights and experiences. You may be a child or young person with a chronic condition; you may be a parent/carer of one (or perhaps more than one). Or you may be someone who works in a school or college and who supports or teaches a young person who misses days because of their chronic condition. Your collaboration in this research is valuable!

https://app.onlinesurveys.jisc.ac.uk/s/plymouth/i-feel-like-a-ghost

Please feel free to share with others who may be interested in collaborating too.

 

I have no idea what the present school system is like, but I think it might be helpful to include home schooling and internet-based learning options.