ACCORD stands for ‘Adults with Craniosynostosis: Creating Online Resources to reduce Distress’. The ACCORD project produced a series of short films and a booklet to support adults with craniosynostosis and other rare craniofacial conditions.
The films highlight some of the common experiences in adulthood and the importance of access to ongoing support at all ages. The films are accompanied by a booklet which provides further information, stories from other adults and practical advice.
There are five films available:
- Being ‘Different’: Will’s story
- Social Experiences: Nammie & Charlotte
- Navigating Treatment: Laura & Louise
- The Challenges of Employment: Zoe’s story
- Growing Older: Sally’s story
You can access all five films here: https://vimeo.com/804350602/b0f7a06ba2.
The booklet, “Living with Craniosynostosis in Adulthood” is available to download here.
“(I feel) a great sense of community, and like I’m not alone in my experiences. It’s a really powerful resource.”
Adult with craniosynostosis
“Compelling stories that are really authentic and inspiring.”
Parent
“Outstanding work, long overdue. It’s clear the participant’s voice has been the driver for creating the content. It really feels like it belongs to them.”
Healthcare professional.
Podcast
You can hear more about this resource in this episode of the Appearance Matters podcast.
The Research
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The ACCORD resources were co-produced in close collaboration with a panel of adults, Headlines Craniofacial Support, award-winning film production company Fine Rolling Media and specialist NHS psychologists.
The content was informed by an online UK survey of 36 adults living with craniosynostosis and a series of intensive interviews and focus groups. The resources were evaluated by adults, family members and healthcare professionals before being approved for UK-wide distribution.
Publications
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Stock, N.M., Costa, B., Bannister, W., Ashby, C., Matthews, N., Hebden, L., Melles, L., Hilton-Webb, Z., Smith, S., Kane, K., Carter, L., Kearney, A., Piggott, K., Russell, C., & Wilkinson-Bell, K. (2024). “When I was younger, my story belonged to everyone else”: Co-production of resources for adults living with craniosynostosis. The Cleft Palate Craniofacial Journal, 18:10556656241236580. https://doi.org/10.1177/10556656241236580.
The Team
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Acknowledgments
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This work was funded by the VTCT Foundation Main Grant scheme. We are grateful to our panel of adults, Headlines Craniofacial Support, Fine Rolling Media, the NHS specialist craniofacial teams, case study contributors and the adults and families who helped us to evaluate the booklets. The project involved Headlines Craniofacial Support and Alder Hey Children’s NHS Foundation Trust.
