Abstract
BACKGROUND: Children with cerebral palsy (CP) and their families need coordinated services. Accordingly, integrated care models have been introduced as the standard for service provision. However, situations with coordination and collaboration challenges occur leading to fragmented services that do not meet the care needs of children and families. This study aimed to identify stakeholders involved in the care and follow-up of children and their families and explore their roles, responsibilities, and relationships to inform the improvement of integrated care for children with CP. METHODS: A stakeholder analysis was conducted based on interviews with children, parents, and service providers; observations in multidisciplinary coordination meetings; and a review of documents. Six families with a child aged between 8 and 12 years with a primary diagnosis of CP participated. Relevant service providers were identified through family interviews and were invited to individual or focus group interviews. RESULTS: The results identified 42 stakeholders categorized into 14 groups offering healthcare, educational, social, and family support services. Stakeholders become involved in the families' long-term care at different times and provide services within various time spans according to specific emerging challenges. Stakeholders' responsibilities include diagnosing and referring patients, providing short-term treatment, and providing long-term care. Additionally, responsibilities can be overlapping and unclear, and the involved stakeholders operate under different regulations and institutional contexts, leading to gaps in patient follow-up. Relationships between the stakeholders vary from full integration to no contact. CONCLUSION: Long-term care for children with CP and their families is complex, involving numerous stakeholders across various sectors, governed by regulations within different institutional contexts, challenging integrated care. Stakeholders' affiliation with different sectors and their varying roles has the potential to contribute to a holistic approach. However, without clear guidance this seems hard to achieve, which may lead to a lack of collective understanding and unmet needs for children and families. There is still a need for further research on collaborative experiences among children, families, and service providers, and their impact on integrated services.