CanChild

Parents caring for children with neurodevelopmental disorders (NDD) face unique and ongoing challenges that impact family well-being. Peer support from individuals with shared lived experiences can offer recognition, shared understanding and empowerment. Despite its promise, peer support for parents of children with NDD remains largely informal, under-researched and poorly integrated within standard healthcare.

This study aimed to explore parents’ perceptions of peer support, focusing on uptake, impact and conditions influencing its effectiveness. A survey co-created with parent–carers was completed by 225 parents (89% mothers). Results showed that 77.3% expressed a need for peer support, mainly because friends and family did not fully understand their situation. Of these, 65.6% reported finding peer support, mostly informal. Thematic analysis identified four key categories: support, mutual learning, connection by recognition, and experiencing no judgement.

Parents of children with NDD valued peer support for emotional connection, practical advice and shared understanding. Preferences are highly individual, emphasizing the need for tailored peer support. These findings may guide the design and implementation of peer support initiatives aligned with parents' needs and preferences.

🌟 CanChild Co-Author: Marjolijn Ketelaar

🔗 Read the publication here: https://ow.ly/Op2Z50Z85TF

CanChild is gearing up for an exciting week at the EACD Galway 2026 Congress in Galway, Ireland from June 3–6! 🌍 🇮🇪 Check out our sessions scheduled for Friday, June 5 — it’s a full day of exciting learning, collaboration, and knowledge sharing you won’t want to miss! ✨

Friday’s program features:
🌟 Multiple instructional courses exploring participation, pain, along with an instructional course on the novel F-words Lens Tool, facilitated by Peter Rosenbaum, Rachel Teplicky, Hércules Ribeiro Leite, Ginny Paleg and Paula Chagas!
👉 A special Early Career Researchers’ Forum session on Family Engagement in Research co-presented by Andrea Cross and Hércules Leite!

We’re proud to share work alongside researchers, clinicians, families, and partners from around the world as we continue advancing meaningful, inclusive, and participation-focused care!

✨ Curious to learn more or explore the full program? Click here: https://www.eacd2026.com/

Congratulations to Danijela Grahovac on receiving the Kids Brain Health Network Outstanding Lived Experience Leader Award! 🌟 🎉

As a Technical Support Specialist at CanChild and a parent of a child with a disability, Danijela brings both lived experience and technical expertise to her work developing accessible digital platforms and learning environments for initiatives including the The F-words for Child Development, ENVISAGE, and Family Engagement In Research Course.

Danijela is a passionate advocate for accessibility and inclusion, helping ensure digital content is accessible to individuals of all abilities, including those using assistive technologies. Beyond her role at CanChild, she also supports inclusive recreation opportunities for children and youth through her work with All Abilities Allstars.

We are proud to celebrate Danijela and her ongoing contributions to accessibility, family engagement, and lived experience leadership! 👏

👉 Read more: https://ow.ly/bAeI50Z5hS9@