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Virtual Family Support Event – 31st January 2021

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After a burn or scald injury the problems and concerns for parents and siblings are considerable. They must try to understand both what has happened and the impact on their lives and family relationships.  Our interactive Family Support events brings together NHS professionals and a number of family groups in order to share common questions and to understand the psycho-social issues for not only the child with burns but for parents, siblings and other family members.

Since 2005 we have provided a residential programme that involves the whole family of a burn injured child. This programme invites the whole family to a residential weekend where they meet other families in the same situation.

COVID 19 and the subsequent lockdowns have meant that we had to change the way we deliver this support, and in January 2021 we held our first Virtual Family Support Event.  Whilst we were unable to spend a whole weekend together, the programme was adapted to a virtual setting, in order to still provide a supportive and interactive environment for both burn survivors, their parent/carers and siblings.  

In the week leading up to the event, parents were sent links to 4 short webinars prepared by psychologists for them to watch at their leisure and to submit any questions for the psychologists to answer on the day.  Then, on 31stJanuary we opened our zoom event to the 12 families taking part from 8 hospitals spread throughout England. They were supported by 18 burn care professionals from burns services across the country as well as 3 burns survivors and the mother of one of them.

After each family and all the staff had introduced themselves, we had a scar management presentation, followed by questions and answers.  The families jumped straight in with their questions to the physiotherapists and occupational therapists and were more than happy to share their experiences, especially around the importance of pressure garments, with each other.

After a short comfort break it was time for the children to join in the fun and our play specialists showed us how to turn the paints, wooden items, ribbons and bells into musical instruments, ready to use during the wonderful Sunbeams Music Session.  Feedback from the live poll at the end of the afternoon showed this to be one of the most popular parts of the day.

We then moved on to our Lived Experience session, when 3 amazing young people, and the mum of one of them, sharing their experiences of growing up with a burn injury.  In addition to telling us their stories they were also able to answer the questions that the families asked.  

The afternoon was rounded off with a live poll when we all got to answer the following 3 questions:

  1. How has this lived experience session made you feel?
  2. One thing you will remember from today?
  3. What has been helpful about today?

A full evaluation of the event is being carried out by the Centre for Appearance Research – initial feedback received from the parents and burn care professionals include the following comments:

“I have been singing your praises to our team here in Nottingham and did a write up about it for our Children’s Hospital Newsletter.  I spoke about how well it went and how much of a positive impact it had on our patients and everyone that took part.”

“We just wanted to thank you again for allowing us to join in with you yesterday.  It was very informative and fun and we thought it was great for the parents to get advice from staff and other parents. I have spoken to –’s mum and she found the scar management and lived experiences very valuable.  She has been struggling with pressure garments too so it was good to hear advice on that.  The Lived experience made her feel that there was ‘light at the end of the tunnel’ when she saw other people who had bad scars but had got positive outcomes.”

“What a great event!”

“Well done for all your organising and planning.

“It was fantastic being part of yesterday so a big thank you from me.”

“I had lovely feedback from –‘s family this morning as they really found it helpful and the whole family enjoyed it.”

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