Epilepsy Ireland News

12-06-2015 | Study on online support needs for parents of children with rare conditions

12 June 2015
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A new study to investigate what parents of a child with a rare condition would like an online parent-to-parent support platform to contain is underway. Parents of children with a rare condition, including rare epilepsies, are invited to take part in focus groups this month to feed into the study.The focus groups will take place in:

  • Dublin (15th June)
  • Tullamore (17th June)
  • Galway (23rd June)
  • Cork (25th June)

This study is being conducted by researchers in the School of Nursing and Midwifery, Trinity College Dublin in collaboration with the Saoirse Foundation and is led by Dr Honor Nicholl. The study is kindly funded by the Irish Research Council. It is a follow-up to the Web Information for Families of Children with Rare Diseases which found a significant need for the development of an online parent to parent support structure.

Note: A payment of up to €40 will be given to assist focus group volunteers in travel expenses and light refreshments will be available at the venue.

If you would like further information or if you would be interested in taking part in the focus groups please contact Dr Catherine Tracey by email: traceyca@tcd.ie or Dr Aileen Lynch by telephone: 01 896 8571 and they would be delighted to speak to you further.

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