‘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

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.