Cerebra and the University of Leeds are collaborating on research that seeks to better understand the extent to which parents of disabled children experience trauma as a result of navigating the various social welfare and education systems with which they have to engage.
‘Trauma Informed Practice’ is a phrase increasingly used by public bodies to convey their awareness that many of those with whom they interact have experienced life changing traumas. As a rule, the traumas referred to are ‘other’ – in the sense that they are the result of adverse childhood experiences, domestic violence, mental health difficulties and so on.
A positive aspect underpinning the idea of Trauma Informed Practice is to remind practitioners of the prevalence of trauma in society so that they can recognise the signs and symptoms of trauma in individuals with whom they interact and enable them to respond sympathetically and in a way that avoids re-traumatising them.
‘Systems Generated Traumas’
Concern has, however, been expressed about many such initiatives in that they fail to acknowledge, that many users of public services identify their most traumatising experiences as the way they have been treated by the public bodies that they had approached for support. For parents of disabled children, examples of these negative experiences can include: being prosecuted when their disabled child is ‘school refusing’; being refused support by children’s services when in desperate need, but then having their home inspected and their children interviewed for child protection purposes; being accused of fabricating or inducing their child’s illness (FII) because they have requested a second opinion from a health professional; being unable ‘to access justice’ to gain redress for the damage done by behaviour of this kind – to name a few.
This short survey seeks to assess the extent to which families have had unnecessarily upsetting experiences in their interactions with the organisations responsible for supporting disabled children and their families – and to assess the nature and extent of these adverse experiences.
How included to children and young people with chronic conditions feel in their education, and what can we learn from their lived experiences?
Anecdotally, children and young people with a chronic condition may experience difficulties in:
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 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!
Jen Shute
University of Plymouth
Jo Brown is studying for an MA in Education & Social Justice and is seeking participants for her dissertation research survey. Here is Jo's request:
Hi i am a neurodivergent researcher and a parent of neurodivergent children. I am currently in the process of researching school refusal by neurodivergent children and i am looking for participants. The research will examine the attendance guidelines published by the DfE and how they impact neurodivergent children. The aim of the project is to seek revision of these policies to account for the difficulties faced by neurodivergent children within the education system.
There is a short survey to complete and then the option to participate in a follow up interview if you agree.
If your child is neurodivergent, based in the UK and is/has experienced periods of school refusal please consider taking part by clicking on the link below.
Hello, We are a group of researchers who want to know more about your experiences in school.
We would like to hear from the community of children who are currently not attending mainstream school, this includes those who are home educated, attending an alternative from of schooling or who are out of school with no placement and feel unable to return.
This survey will ask you about your experiences of school and your reasons for not attending mainstream school, we are keen to have your voice heard and to understand more about your feelings towards not being in school.
Your answers will be anonymous, which means we don't know your name and your name can't be shared with anyone. We will use your answers to help understand your experiences at school and not being in school and to help us think about what could be different in the future. This might mean we write reports and host webinars which share your views anonymously, so other people can know what life is like for young people and what things we could do to make changes to the help you receive.
Experiencing difficulties at school can be difficult and have an impact on your emotional wellbeing. If you are finding things difficult please seek support. If there are things that really worry you please talk to your parents, carers or teachers. There are also a range of places you can go for help - such as Childline [0800 1111] or Kids Inspire which supports children and young people aged 5 - 18 years [01245 348707] or email cypcounselling.kidsinspire@nhs.net] and the Shout text service - to start a conversation, text the word 'SHOUT' to 85258
We look forward to hearing from you
We want to hear from YOU!
We are a research team which includes researchers from Northampton University and parents who want to learn more about the barriers and enablers to education for children and young people. Many of us have personal experiences of this which why we are so invested. We have worked with a group of parents/ carers from the Not Fine in School Facebook community to design a survey that captures parent/ carer views and experiences within the education system.
More information is available via the link,
The survey will be open until the end of September 2024.
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