Assessing the impact of the Lily Family Weekend on families affected by mitochondrial disease
We decided to seize the opportunity to showcase the impact of our Lily Family Support Weekend, and we pulled our findings together into a poster presentation, supported by a speech given on the final day of the conference by our Science & Patient Engagement Officer, Katie Waller. Katie and her colleague Alison Maguire, Head of Research & Finance, worked hard to pull together the poster's content in an engaging and easy-to-digest format, as you can see below.
Our Family Support Weekend is one of the most popular, and most anticipated, dates in the annual Lily calendar. A unique opportunity for families affected by mitochondrial disease to get together and relax in a safe and caring environment, it’s a two-day residential experience full of informative talks, workshops and support for adults, with plenty of fun activities to keep children of all ages entertained too. But how successful is it really? And how can we measure that success?
Every family who attends is emailed a link to a free online survey to complete after the weekend. Participants are asked to rate the various elements of the weekend, and invited to pass on any further comments they might have. As you can see from the below table, the results were pretty conclusive!
An incredible 100% of those surveyed strongly agreed that they would recommend the weekend to other families, with a massive 96% planning to attend again the following year. Here’s just some of the amazing feedback we’ve received:
“We adore our Lily family, the one place where we can just be us! We are understood and listened to here”
“The Lily Weekend is a lifeline to us, a chance to feel normal amongst friends. Not just friends, these people have become family”
“To be able to meet families in the same situation who are now supportive friends"
We know that having a child with a mitochondrial disease diagnosis can be an incredibly isolating experience, so it’s clear our annual weekend is offering a safe and supportive environment for families to come together, meet others living with the condition and foster long-lasting friendships.
The event is also giving the little ones a chance to have fun and get involved in a range of inclusive activities including creating flowers, building forts, t-shirt decorating and slime making! Meanwhile the grown-ups are given access to a tailored programme of informative sessions delivered by some of the UK’s leading experts in mitochondrial disease. All capped off by the gala dinner which is a real treat for everyone.
72% of those at the weekend attended at least one medical lecture. Of those, 94% found them enjoyable, and liked their informal nature which helped put attendees at ease. 88% said the information they got from professionals addressed their needs, and 94% said they felt comfortable enough to ask questions and share their own experiences.
When it came to the hot topics covered by the medical panel, 91% of those surveyed said the information given addressed their needs, whilst a resounding 92% said they felt comfortable to ask questions themselves. 75% felt they had learned new information of value to themselves and their family, and 91% took something from hearing the experiences of other families. And overall, 100% of attendees found the medical information sessions beneficial.
To conclude, qualitative and quantitative feedback from the most recent event demonstrates that the Lily Family Weekend successfully meets its objectives and is highly valued amongst families. The success of the event has led the team to organise a similar event for young adults, and we will continue to collect feedback to help ensure that the weekend remains of value to our families. To find out more about the Lily weekend, please email [email protected].