ADHD & YOU: an educational website for those with and in contact with those with ADHD

A summary of a project from one of our own HWSC academics, Gemma Ryan

ADHD & You project summary

An evaluation of an educational website on ADHD for parents, carers and education staff.  (2012-2014)

This website was improved by its owners Shire, and is now available at http://www.adhdandyou.co.uk/

 

What was the purpose of this study?

‘ADHD & You’ is a website developed by Shire AG Ltd. and is aimed at providing information and advice to parents, carers, teachers of children and young people with ADHD, people with a diagnosis of ADHD and healthcare professionals.

We evaluated this website to see if it was useful to parents, carers and education staff who have care of, or who come into contact with a child or young person with a diagnosis of [or suspected] ADHD.

 

What did we want to know?

We wanted to know whether the website was informative and how usable it was.  We also wanted to know if it helped to improve knowledge of ADHD.

 

What did we do?

We recruited participants through community paediatric outpatient clinics and other services.

They were asked to:

  • Read a participant information sheet
  • Ask any questions about the study
  • Sign an informed consent form
  • Give us some information about themselves e.g. ethnicity, age, age of child/young person, diagnostic status of child/young person
  • Complete a true-false quiz/questionnaire
  • Access the website freely for one month as they wished
  • Complete the same true-false quiz/questionnaire after one month
  • Provided feedback on the frequency of use (if used) and opinions of the website e.g. what was good/needed improvement

 

What did we find?

Who participated?

172 participants were involved in the parents/carers part of the project.

We could not contact 14 people for the follow up quiz.

91 of the 172 participants accessed the website and provided feedback.

Most people accessed the website once or twice (33%) and those who did not access the website stated that they ‘lacked the time’ to do so.

 

The average age of participants was 41 years.  These people were parents or carers of children whose average age was 10 years.

 

76% of our participants were mothers of children with ADHD, 15% were fathers and the rest were ‘other’ e.g. grandparent, sister, aunt.

 

94% of our participants declared themselves as White-British.

 

Of the 172 participants, 40 (24%) had suspected ADHD, 21 (13%) were diagnosed less than 6 months ago and 107 (64%) had been diagnosed for 6 months or more.

 

How did people use the website?

41% of participants did not access the website at all.  59% accessed the website at least once.

 

Those people whose child had a confirmed diagnosis of ADHD were more likely to have accessed the website, as were parents of younger children.

 

Who used the website?

Most people (74%) used the website to browse for information.

 

How useful was the website?

86% of people found the website relevant and 91% said that they would use the website again.

 

When we tested participants knowledge of ADHD with the true-false quiz this showed that the website did help to increase knowledge of ADHD.

 

Most people were positive about the website and liked the downloadable files e.g. reward charts and also the real life story video.

 

Advised improvements included:

  • Age specific resources and information
  • Addition of a discussion forum or group
  • More detail of the science behind ADHD
  • Search function to search for specific themes or questions

 

Participants felt that they were happy to be directed to reliable educational websites by their healthcare professional.

 

How have we shared these findings?

  • Through a report to our funders and organisations involved in the project
  • Through an article in a journal (in process)
  • Through this summary

 

If you want to know more:

Contact the co-investigator Gemma Ryan on g.s.ryan@open.ac.uk

 

Acknowledgements

We would like to thank all of our participants.

Thank you for Shire AG International for providing the grant funding for this project.   Leicestershire Partnership NHS Trust acted as sponsor for this study and provided NHS approvals and research governance processes.

The Families, Young People and Children’s Services Research Team were essential to the success of this project; Gail Melvin, Lynne Hartwell, Tom Pringle, Ruth Beardsley, Julie Rybicki. The Principal Investigators acknowledge the support of the National Institute of Health Research Clinical Research Network (NIHR CRN).

Thank you to Sussex Community NHS Trust and Coventry & Warwickshire Partnership NHS Trust for their contribution and recruitment to this project.

 

Trial registration

Registered on National Institute for Health Research portfolio, United Kingdom Clinical Research Network ID 13980 http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=13980

 

This project was completed in partnership with Leicestershire Partnership NHS Trust (sponsor & lead site) & University of Derby (Gemma Ryan)