Research Study: Families’ experiences of participation in the Education, Health and Care Plan process
Date: 6th March 2020
Location: Leeds Mencap, The Vinery Centre, 20 Vinery Terrace, Leeds LS9 9LU
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What is this study about?
You are invited to take part in a research study to look at how families of children with Special Educational
Needs and Disabilities (SEND) participate in the process of gaining an Education, Health and Care Plan (EHCP).
We are interested in understanding families’ experiences of taking part in the EHCP process and how children
with communication difficulties are included in the plans. Your views will help us to develop better services
and systems for the future.
This information sheet tells you more about the project and what it would involve for you. Please read the
information carefully and ask any questions about it. Take time to decide whether you would like to take
What will it involve if I take part?
The study is supported by Leeds Beckett University and the Special Educational Needs Statutory Assessment
and Provision (SENSAP) team from Leeds Education Services.
- The aim of the study is to gain parent’s views about their involvement in the system of gaining an EHCP.
- Taking part would mean attending a 30-60 minute individual interview, or a small group discussion, for about 60 minutes, with other parents.
- Individual interviews can be at a time and venue of your choosing.
- For the small group discussions, a local familiar venue will be agreed with participants.
- Parking and travel expenses can be re-imbursed.
- The interviews or discussions will be audio recorded.
- The recordings will be transcribed word for word.
- Your contribution will be anonymised.
- Some of your comments will be used to discuss the EHCP system with a group of professionals (teachers, psychologists, therapists, SENSAP team).
Do I have to take part?
- The study is entirely voluntary and it is up to you to decide whether you would like to take part.If you choose to take part, you will be asked to sign a consent form to show that you agree to take part.
- You are free to withdraw from the study up to 2 weeks after the interview or discussion group, without giving a reason and your information will not be included.
- Taking part or choosing not to, will not affect your child’s EHCP or any other health, education or care appointments in any way.
What are the benefits and risks of taking part in this study?
Taking part in this study will
- give you an opportunity to improve services in the future for children with communication difficulties and their families
- involve attending an interview or discussion group for about an hour
There are no anticipated risks of taking part in this study.
What will happen to the recordings of the interviews / discussion groups? And will my information be kept
- If you want to see a typed up transcript of your interview, this can be provided for you.
- Any details that could possibly lead to you being identified will be removed or changed. Your name and personal details will not be included in any of the study reports.
- All information will be treated in the strictest confidence.
- All the information collected during the study will be stored on a solution secure, password protected server, managed by Leeds Beckett University.
- Personal data will be stored for 12 months after the completion of write-up of the study, to enable you to receive a summary of the findings.
- All other data will be stored for 5 years, after the end of the study write-up.
- Others who know about your involvement in the EHCP process, might possibly be able to identify you
from the study, but they will not have access to the transcript of the interview / focus group.
- Your involvement in the study and the information you provide will be kept confidential unless something is discussed that indicates someone is at risk of significant harm. The researcher would discuss this with you before telling anyone else, and then would need to follow the Local Authority safeguarding procedures.
You can contact Jo if you want further information about the study, or how your information will be used and kept safe.
What will happen to the results of the study?
When the study is complete, it will be written up as a thesis for the university. You will not be identifiable
in this thesis or any reports of the study.A summary report of the findings and recommendations will be sent to you. This information might be shared with other services and might be published in academic journals or discussed at conferences.
A little bit about the research team:
Jo Sandiford is the main researcher; she is a Speech and Language Therapist with 25 years of experience
working in the NHS with children with communication difficulties. In this role as a researcher, she is unable
to give you additional advice about your child’s speech and language skills. If you would like to know more
about the study and are interested in taking part, please contact:
- Jo Sandiford, Speech and Language Therapist / PhD Researcher, HCPC registered, RCSLT registered,
Leeds Beckett University.
Telephone: 0113 8128620 Email: J.Sandiford7262@student.leedsbeckett.ac.uk
This design and plan for this study has been supported and agreed by a parent of a child with special
- Linsay Medica - Parent and founder of Little Hiccups – parent led support group for children and
families with special needs and disabilities
If you are unhappy with any of this information, or any elements of the study, please contact Jo or the
supervisory team below:
- Lead Supervisor: Dr Sarah James, Head of Speech and Language Therapy, Leeds Beckett University,
Telephone: 0113 8125823
- Education Leeds: Victoria Coyle, Head of Special Educational Needs Statutory Assessment & Provision
(SENSAP), Complex Needs Service, Leeds City Council, Telephone: 0113 3785256.
Independent contact information:
- Sheila Casey, Quality Assurance and Governance Officer, Leeds Beckett University, Tel: 0113 812
All research in the NHS is looked at by an independent group of people, called a Research Ethics
Committee, to protect your interests. This study has been reviewed and given favourable opinion by The
North West Research Ethics Committee, Greater Manchester.
Thank you for reading this information – your views really count