Feeling like you can't do anything because you don't know where to start’—Parents' Perspectives of Barriers and Facilitators to Accessing Early Detection for Children at Risk of Cerebral Palsy

Abstract

Background: Early detection of cerebral palsy (CP) risk is possible from 12 weeks corrected gestational age (CGA) using standardised assessments; however, up to half of children at risk are not referred early, missing out on early intervention. We investigated the barriers and facilitators to accessing early intervention from the perspective of parents of children who did not receive services by 6 months CGA.

Methods: Parents of children with CP were invited to participate in qualitative semistructured interviews. Reflexive thematic analysis was used to analyse the data and develop themes.

Results: Eight mothers of children who did not receive standardised screening participated in interviews, from which three themes, 'responding to delays', 'systemic barriers' and 'complexities of diagnosis', were developed from the data.

Conclusions: Parents require more support to access and engage in early detection services; health system processes are difficult to navigate, and health professionals require education and training to recognise risk factors for CP in all health settings and refer promptly. Improving system processes, education and training and partnering early with parents to improve their experience when interacting with the health system may increase early engagement and optimise long-term outcomes for children at risk of CP and their families.

Keywords: cerebral palsy; diagnosis; mothers; paediatrics; qualitative.

Child: care, health and development (Open Access)
https://pubmed.ncbi.nlm.nih.gov/40435382/

Another Pre Season 6 episode - we catch up with the team from Oceania 2026! Oceania Academy Biennial Conference will be held in Hobart, Tasmania, 4-7 March 2026.

Keynote Speakers:

John Coughlan: Secretary General of the International Cerebral Palsy Society and Cerebral Palsy Europe, and the parent of a young adult with cerebral palsy.

Melissa McCradden is the Artificial Intelligence Director and Deputy Research Director with the Women's and Children's Health Network, and a Deputy Director and The Hospital Research Foundation Group Fellow at the Australian Institute for Machine Learning at the University of Adelaide.

Dr Lynne McKinlay is a medical leader at Sunshine Coast Health with responsibility for patient safety and clinical governance.

Riley Saban is an Australian disability advocate, entrepreneur, and international keynote speaker whose work centres on inclusive design, assistive technology, and systemic reform.

Dr Jennifer Ryan is Director of Cerebral Palsy Lifespan Health and Well-being (CP-Life) Research Centre and an Associate Professor in the School of Physiotherapy at the Royal College of Surgeons in Ireland

Scientia Professor Julian Trollor AM FAHMS, NHMRC Leadership Fellow, Director of the National Centre of Excellence in Intellectual Disability Health at UNSW Sydney.

Dr Ilisapeci Tuibeqa and Professor Susan Woolfenden: Presidential Address

Adj Prof Sarah McIntyre: Dinah Reddihough Oration

The ResearchWorks team including Dayna, Ash and Ed will be on site to provide live interviews with Keynote speakers and other incredible researchers.

If you haven't registered yet - there is still time to register, book your accommodation for Hobart (a wonderful location in Australia) and join in-person and there is also a hybrid option for those unable to travel.

https://www.oceaniaacademy.org/conference-2

If you are attending, be sure to pop by the ResearchWorks booth and say hello! We'd love to meet you and we can't wait to bring you exclusive interviews with some of the finest researchers on the planet!

Be sure to check out the ResearchWorks Academy at www.researchworks.academy (its FREE to register).

From AI and Machine Learning based tools, to Gait analysis tools, to report templates, decision trees, custom calculators for GMFMER/ENE and Goal Attainment Scale, Gesture and Switch based video games and other multimedia, it's a one-stop-shop for tools to implement research into clinical practice!

The ResearchWorks Academy is a completely FREE online hub - with resources for clinicians and researchers. Visit www.researchworks.academy

for a video guide to this week's special episode, be sure to visit our YouTube channel:

https://www.youtube.com/watch?v=9XCdovk0ZZU

From using AI with curated articles, to classification tools, outcome measures, machine learning based 2D gait analysis, augmented reality video games, GMFMER and ENE calculator as well as a goal attainment scale calculator, AI driven report templates and other multimedia - it's been designed as a one stop shop for evidence based practice.

Updates are provided every month and it's all accessible via the web (desktop or mobile) for FREE!

In addition, we will have a range of micro-credentialing courses (paid and free) by world renowned researchers, lecturers and speakers!

If you have any queries or suggestions, be sure to get in contact with the ResearchWorks Academy team - and we'll see how we can assist you to implement the latest in evidence and research into your clinical practice!

www.researchworks.academy