With a cerebral palsy (CP) prevalence rate of 3.4 per 1000 live births in high-income settings and more in low-income settings, a child- and parent-centered approach is required for better diagnosis and early management.¹ Children with CP require additional care so that their needs are met and development is nurtured.² Families and children require continuous care and follow-up by primary health care, referral to referral centers for complications, linkage to early education, and rehabilitative care. Thus the multiple service delivery system needs to work seamlessly.³

The work by Williams et al.⁴ explored the current needs of Māori and non-Māori families with CP in New Zealand to develop strategies for diagnosis and early management. Researchers used a participatory approach to understand the needs of these children with CP and then co-design interventions for improving care. First, researchers used local facilitators among the indigenous population to point out the current gaps in care and referral pathways. Researchers then conducted a deep dive exercise with health care providers on the current system of diagnosis and management. The researchers found that there was a lack of a tool kit to communicate with the families on their children's condition (especially in the indigenous community); while the referral management and social support system was not adapted to cater to the need of these families. The researchers developed a prototype of the required intervention to improve the service provision for better diagnosis and effective management.

There are two methodological considerations for the generalizability of the study in New Zealand and similar study settings. First, no Māori researcher or Māori health care provider was engaged in the study to inquire into the internal validity of the results in terms of service re-design. One major aspect of diversity and inclusion in research and care is to have researchers and care providers from within the population where improvement is sought. Second, this study co-designs interventions with indigenous population for improving care for CP; however, the feasibility of the interventions is yet to be tested.

The study shows that care of children with CP requires a continuum of care approach as inequity in care widens among families from indigenous populations, so that these vulnerable populations do not fall through the system's cracks. The under-representation of indigenous populations in service delivery as health care providers indicates that the ecological approach is required. Using this approach, the system needs to be re-designed at three levels: micro, meso, and macro. At the micro level, families must be adequately resourced and skilled to care for their children with special needs. At the meso level, community and social networks need to be empowered and equipped to support families with children with CP. The highly resourced social networks of indigenous populations can build a bridge between the family and the service system.⁵ For example, in the Māori community, the social networks practice well-being to improve spiritual, mental, social, and physical well-being. At the macro level, health care institutions, schools, and rehabilitation centers need to be re-designed to navigate care at different time points. All service providers need to be trained and educated on how to care for children with CP. Finally, a continuous system of feedback from families for better care is required.

With the high global prevalence of children with CP, the inequity in access to care will further deteriorate a child's universal right to care in all income settings. The global momentum for improving the care of children with CP requires a participatory approach to develop and implement interventions based on the cultural and social context of each individual child.