/ RESEARCH NEWS
Issue Date
By PhD STUDENT EMMA JORDAN

What was this research about?

This study explored the experiences of a group of parents of children with Ehlers-Danlos syndrome attending mainstream primary and secondary schools in England. It examined the adaptations schools had provided and explored which were effective.

What did I do?

I advertised via EDS UKfor parents of children with EDS who attended mainstream primary or secondary schools in England to take part in my small-scale research study. Ten parents responded to the advert and each took part in a 30-minute interview about their child or children’s experiences.

What did I find?

Provision for children with EDS is very mixed. Within this small sample I found examples of effective practice but I also heard about situations which fell short of this standard and were having a negative effect on the health and wellbeing of both the child with EDS and their family.

Understanding EDS

Parents felt that in order for the school to meet their child’s needs effectively they needed to understand EDS. They recognized that because EDS is rare, schools may not have heard of it and that it was difficult for teachers because symptoms are varied and often invisible. They had tried a variety of strategies to help school staff understand including meetings with teachers, SENCOs and health professionals; taking in materials from charities and giving presentations on EDS and their child.

Policy and practice

Parents felt that the EHCP process was overly complex and favored some types of need. Healthcare plans often failed to meet all of the child’s complex needs and were frequently not shared with all staff working with the child. This sometimes meant that children were blamed and punished for trying to mitigate their EDS symptoms. Some parents felt that they were hounded by the school over absence issues yet were unable to access work to help their child keep up whilst at home.

Peer acceptance

The majority of parents reported that their children were happy and had good friends who supported and included them. It wasn’t clear whether children’s empathy was something they were born with or because of experiences at home or school, but it was lovely to hear that most children had not experienced problems because of EDS.

FAST FACTS – POSSIBLE SOLUTIONS
  • A medical card to get out of lessons if feeling unwell
  • Toilet breaks whenever needed without having to ask
  • A lift pass or ground floor rooms for all lessons
  • Access to drinking water at all times
  • Being allowed to wear non-uniform items such as gloves or supportive boots
  • Being allowed to get up and move during lesson time
  • Being allowed to leave lessons to take medication as required
  • Having planned rest breaks across the school day
  • Having a coat peg, locker and or personal tray at the right height and not in a corner to avoid bumps and bending
  • Having an adjustable supportive padded chair or beanbag to sit on
  • Physiotherapy or occupational therapy sessions delivered by a nominated member of staff during the school day
  • Having a pass to be first in the lunch or assembly line
  • Pencil grips and chunky grip pens and or a laptops, tablet or scribe
  • Being allowed to carry a mobile phone for silent medication alerts

Helpful adaptations

On the whole, effective adaptations had cost little or no money and had been promised and delivered quickly. They arose from the school listening, taking on board what it is like to live with EDS, ensuring all staff knew what had been agreed, and being flexible and creative in finding solutions. The fast facts box outlines the adaptations that the families in the study found helpful.

Communication

Effective communication between parents and staff and amongst staff within the school was vital. This began with the first contact between the parents and the school and the flagging of the child’s EDS diagnosis. Some parents felt that the school didn’t listen or that they didn’t understand the implications of what they had been told. Some also felt that they were not valued as equals and that they needed to involve other professionals in order for the situation to change. Ultimately in order for children with EDS to be properly included and supported schools must ensure that channels of communication between children and staff, parents and staff and within the staff team, are effective.

IN SUMMARY
This study showed that in order for children with EDS to be effectively included, schools must ensure that the opinions of parents, children, teachers and medical professionals are both heard and valued, and that where action is agreed it must be implemented.
acknowledgments
This research was undertaken as part of the PhD in Education and Social Justice in the Department of Educational Research at Lancaster University.
My thanks go to the parents involved for giving their time and bravely sharing their experiences.
I am also grateful to Ehlers-Danlos Support UK for their help in facilitating this work and acknowledge the contribution of my tutors and peers at Lancaster University in supporting the development of this study and its report as an assignment paper.
CONTACT INFORMATION
EMMA JORDAN

Title:

The Zebra in the Room:Examining the response of parents to schools’ adaptations for their children with Ehlers-Danlos Syndrome in England, UK.

Researcher:

Emma Jordan, PhD Research Student, Lancaster University

Summary:

This study used interviews with parents of children with Ehlers-Danlos Syndrome to explore the ways in which mainstream primary and secondary schools in England had adapted to include their children and identify what had and had not been effective in meeting their needs.