"No Words Needed": Results of a Survey on How Parents of Children With Neurodevelopmental Disorders Perceive (In)formal Peer Support

Abstract

BACKGROUND: 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, limiting its potential accessibility and impact. Little is known about what parents seek in peer support, how they experience it, and which factors facilitate meaningful engagement. This study therefore aimed to explore parents' perceptions of peer support, focusing on uptake, impact and conditions influencing its effectiveness. METHODS: A survey co-created with parent-carers collected quantitative and qualitative data on perceptions, needs, concerns and barriers related to peer support. The online survey was distributed via parent organisations. Descriptive statistics summarised participant characteristics and peer support uptake, while thematic analysis identified key experiential themes from open-ended responses. RESULTS: Among the 225 participating parents (89% mothers), 77.3% expressed a need for peer support, mostly because friends and family did not fully understand their situation. Of these parents, 65.6% reported finding peer support, mostly informal initiatives. Thematic analysis of participants' comments revealed four key categories describing the experience with and need for peer support: (1) support, (2) mutual learning, (3) connection by recognition and (4) experiencing no judgement. Also included in the results are concerns reported by parents and factors facilitating or hindering successful peer support. CONCLUSION: Parents of children with NDD valued peer support for emotional connection, practical advice and shared understanding. Preferences are highly individual, emphasising the need for tailored peer support. These findings may guide the design and implementation of peer support initiatives aligned with parents' needs and preferences. Future research should focus on how the full potential of peer support for these parents can be unlocked.