gms | German Medical Science

Background: Care fragmentation, characterized by limited care coordination and information flows, is associated with burden for families and care providers and impairs the provision of high-quality healthcare services in Germany and internationally. Children with medical complexity depending on cross-sectoral care networks and families with limited navigational health literacy are particularly affected. Community care networks (CCNs) with family guides (e.g., nurses, community health workers) have the potential to reduce care fragmentation by providing, inter alia, case-independent network coordination and case-dependent care coordination services. Despite their potential, implementation of CCNs remains challenging given limited prior work on barriers and enabling factors of network implementation and parent-reported care needs to be addressed by family guides. By providing opportunities for mutual learning and integration of diverse knowledge domains, Communities of Practice (CoPs), defined as structured long-term collaboration between researchers and service providers, could facilitate the implementation of CCNs, but have rarely been leveraged.

Research objectives: The objective of the FamilyGuide Study is to establish a CoP and to develop, implement and iteratively refine a CCN for children aged 3-18 years with special healthcare needs. At the conference, we will present the study protocol.

Method: Guided by a cross-sectoral CoP including stakeholders from health, social and educational services, the CCN will be developed, implemented and iteratively refined based on three concurrent tiers: (1) In a mixed-methods study comprising semi-structured interviews and surveys among parents of children with special healthcare needs, parent-reported care needs and potential effects of the CCN will be investigated. (2) Concurrently, family guides will acquire practical expertise in providing network and care coordination services in a socially deprived urban neighborhood. (3) By integrating scientific results and practical expertise from tiers 1 and 2, regular CoP meetings will inform the implementation of an increasingly refined evidence-informed CCN tailored to care needs of the target population.

Discussion: Contributing to the limited evidence on CCNs for children with special healthcare needs, the study will provide a hands-on framework for a CCN including strategies for network implementation and maintenance tailored to socially deprived neighborhoods. Moreover, using the CCN as a use case, the study is anticipated to provide insights on how scientists and practitioners can leverage CoPs to tailor service provision to local contexts in an inclusive way, thus supporting the successful uptake of evidence-based care interventions.

Implication for care: The CCN is anticipated to promote the capacity of families for self-management by providing accessible information on health, social and educational services and to improve service accessibility by delivering needs-based care coordination services for families. Given its focus on families with limited navigational health literacy and socially deprived neighborhoods, the CCN has the potential to attenuate existing health inequalities.