Exploring integrated care for children with cerebral palsy: a stakeholder analysis

Area of Science:

• Pediatric healthcare services
• Rehabilitation medicine
• Family-centered care

Background:

• Children with cerebral palsy (CP) require coordinated services, with integrated care models being the standard.
• Challenges in coordination and collaboration lead to fragmented services, failing to meet the needs of children with CP and their families.
• This study addresses the need to understand stakeholder roles in CP care to improve integrated service delivery.

Purpose of the Study:

• To identify all stakeholders involved in the care and follow-up of children with CP and their families.
• To explore the roles, responsibilities, and relationships of these stakeholders.
• To provide insights for enhancing integrated care models for children with CP.

Main Methods:

• A comprehensive stakeholder analysis was performed.
• Data collection involved interviews with children, parents, and service providers, observations of multidisciplinary meetings, and document review.
• Six families with children aged 8-12 years with CP participated, alongside identified service providers.

Main Results:

• 42 stakeholders across 14 groups were identified, providing healthcare, education, social, and family support.
• Stakeholder involvement varied in timing and duration, with overlapping and unclear responsibilities contributing to patient follow-up gaps.
• Relationships ranged from full integration to no contact, influenced by different regulations and institutional contexts.

Conclusions:

• Integrated care for children with CP is complex due to numerous, multi-sectoral stakeholders operating within diverse regulatory frameworks.
• While diverse stakeholder roles can foster a holistic approach, a lack of clear guidance hinders collective understanding and risks unmet needs.
• Further research is needed on collaborative experiences among children, families, and providers to improve integrated services for CP.