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Engaging the public

We are working with patient, pupil, parent and public engagement groups to understand different views on the use of linked health, education and social care data for research. This includes getting valuable feedback on our research plans for the ECHILD project.

Who have we been working with?

We would like to express our thanks to all children, young people, parents, carers and others who have given their time to this project by being involved in our engagement events.

So far, we have worked with the:

Young research advisor's thoughts on ECHILD

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What have we learned?

 

National Children’s Bureau Young Research Advisors - 04/08/2020

Most young research advisors were not familiar with Hospital Episode Statistics or National Pupil Database and the fact they contribute to this data. Advisors view collecting and using data this data as desirable if it is used for the wider public good.  Some advisors expressed general concerns about large organisations holding too much personal data.

What we learnt about schools and hospital treatment during Covid-19:

  • Lockdown led to a general sense of anxiety and losing control, but different groups had very different experiences.
  • Mental health is viewed as a crucial issue, lockdown saw none of the regular safeguarding from schools, CYP are committing more self-harm, CYP and mental health problems are unseen by pupils and teachers and become hidden.
  • There were worries about food insecurity (i.e. free school meals), experiences of bereavement, parents losing employment, delays with hospital treatments, awareness of parent's stress, overcrowding at home, feelings of isolation and increasing disparity between affluent and deprived families.
  • The group did not like the term vulnerable children. They preferred to speak about children and young people with additional needs. 
National Children’s Bureau Families Research Advisory Group - 15/09/2020

Advisors believe that data needs to be contextualised in people’s real lives, but overall they are supportive of the use of ECHILD data.  There are lots of concerns about children’s education experiences and children getting lost and forgotten in the pandemic.

What we learnt about the impact of the pandemic on education:

  • There is a worry that familial factors will not be reflected yet in linked data, e.g. if a parent dies, loses employment, alcoholism develops, or a lack of access to technology for learning.
  • Work sent home for children with Special Educational Needs (SEN) is not always appropriate, so they could easily fall even further behind.
  • Children and Young People (CYP) have all had such different experiences of school.  It may be very hard to identify how lockdown has affected individual children and how to provide the required support.

What we learnt about vulnerability:

  • Advisors prefer the term “children with additional needs”, one parent thought it implies they (parents) cannot look after children. Advisors disagree with DfE definition, and this is an opportunity to give it some thought and also recognise the benefit of diagnosis (e.g. children with autism without a diagnosis are not having their needs met at school).

Consideration is also needed about who is missing from the ECHILD database? Who is still vulnerable but has not been identified, or has become vulnerable during COVID-19?

Council for Disabled Children FLARE - 14/11/2020

The Children and Young People were not aware of Hospital Episode Statistics or National Pupil Database, let alone administrative data. They felt strongly about the need for better awareness about administrative data. The group was very positive about linked data being used to improve health and education services and to better support those similar to them. The group needed reassurance that there are procedures in place to safeguard the data. 

These engagement events have been extremely valuable and started many discussions.  One of the participants has a blog article following recent discussions on the label of vulnerability.  This can be found here: "vulnerable to overuse".

Great Ormond Street Hospital for Children NHS Foundation Trust Young People’s Forum - 20/03/2021

School absence was a highly sensitive topic with this group, given all members had health needs which necessitated school absence. The group highlighted a frequent lack of support and understanding with their respective schools.

What we learnt about school absences:

  • There are many reasons for absences: Hospital appointments, feeling unwell, religious holidays, family commitments and mental health.
  • Mental health is often linked to school absences. There is a frustration when having to miss school. 

What we learnt about reducing school absences:

  • There are avoidable absences that something should be done to reduce (e.g., making schools safer/supportive to reduce absences due to mental health/bullying). 
  • There are unavoidable absences that something should be done to support (e.g., virtual classes when ill/recovering from an operation). 
  • There are absences that seems unavoidable on the surface, but may actually be avoidable if healthcare is changed (e.g., absences due to medical appointments could be reduced if appointments were outside of school hours or delivered in schools).   
  • The focus in schools on good attendance and presenteeism can be demoralising for young people with health conditions.
  • Pupils who are ill should be encouraged to stay at home, to recover fully and not expose others to viruses and illness.
  • Pupils can better engage with their learning if fully recovered.

What we learnt about how schools and hospitals could help?

  • There is a conflict between being encouraging to look after your mental health and taking time off, as this can result in falling behind with education, which in turn negatively impacts mental health.
  • There are feelings of being ‘singled out’ due to absence.
  • Technology, in terms of virtual classes, would help improve attendance if being at school in person is not possible.
    NIHR Great Ormond Street Hospital Biomedical Research Centre (BRC) Parent and Carer Advisory Group - 23/03/2021

    What we learnt about school absences:

    • Parents described variable experiences with schools and their child’s health-related school absences.
    • Some schools were supportive and used interventions to help students (e.g. virtual lessons)
    • Some schools left parents feeling “victimised for absence”, even if the absence was unavoidable because of hospital appointments.
    • There can be tension between overloading a student and also making sure a child does not fall behind.

    What we learnt about how schools and hospitals could help?

    • A helpful model may be online lessons, blended with in-person lessons.
    • Government backing, and free WIFI in hospitals could help.
    • Better communication between schools and healthcare could help, perhaps including a coordinator/liaison function. 
      NIHR Great Ormond Street Hospital BRC Young Persons Advisory Group (YPAG) - 27/03/2021

      What we learnt about school absences:

      • There are many reasons for absences: Poor mental health, too much workload, pressure from teachers, bullying, family responsibilities, health issues and appointments, a perception of insufficient support upon return and worries about exposure to Covid-19.
      • Reducing school absences is important, but it is also important to look at different ways to provide schooling if absent.  This should avoid pressures to complete a large amount of work.
      • School absence is something that should be considered on a case-by-case basis.  Every pupil has a different situation and requires individual support.
      • The focus should be on improving the support system at school rather than reducing absences.

      What we learnt about how schools and hospitals could help?

      • Better communication about long-term conditions.
      • Better informed teachers able to understand and provide support.
      • Reduce pressure to attend school if unwell, especially as this can increase contagion. 
      • A liaison member of staff, either based in hospitals or in schools, could help coordinate the schoolwork missed.
      • More trust from teachers when returning to school and reporting reasons for absence.
      • Free WIFI in hospitals to support schoolwork being completed when in hospital.

       

      Who are we listening to next?

      Our most recent events have included:

      • The ECHILD Stakeholder event held in April. This brought together organisations representing children’s interests to ask questions and hear views about the ECHILD Database and priority areas for future research.  A report on the event is being finalised and will be published here soon.
      • The ECHILD team met with the GOSH NCB Families Research Advisory Group (FRAG) in June 2021.  This engagement was to understand the views of parents of children with Special Educational Needs and Disabilities.  What we learned from this session will also be published here page soon.

      Our next confirmed events are:

      • Further engagement with Young Person’s Advisory Groups are currently being arranged for late this summer 2021

      If you represent a patient, pupil, parent or children and young people group and would like to find out more about or be involved in the ECHILD project, please contact us at: ich.echild@ucl.ac.uk.

      School closures during lockdowns

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      How can I contribute?

      We want to use the ECHILD project to answer questions that children, young people, parents and the public think are important and useful. If you would like to share your personal views on the research we’re doing, or suggest other questions we should look at, please use the form below or contact the team at: ich.echild@ucl.ac.uk.

      The ECHILD database cannot be used to identify individuals. However, it can tell us about groups or characteristics of children who might benefit from additional support, information or monitoring. To help with thinking about other ways of using ECHILD, here are some examples questions that we are addressing, or could be addressed in the future: 

      • What is the impact of the pandemic lockdown on children with vulnerabilities or additional needs?
      • Do delays in surgery or other treatments affect children’s learning later on?
      • How do different health problems affect time off school?

      We’d love to hear from you using the forms below (all feedback is anonymous):

      Jot Form Widget Placeholderhttps://form.jotform.com/210262094414345