Coordination of health and social care for children with complex health needs across the EU/EEA: a case scenario approach exploring care coordination for an adolescent with an Acquired Brain Injury

Abstract

Introduction : A knowledge gap exists when it comes to the provision of integrated health and social care for children with complex care needs CCN across Europe. This growing population of children will typically have varying and extensive needs. As there is evidence that they are more vulnerable to harm, these needs will include safeguarding. A coordinated response from multiple care providers therefore is essential. Aim : This study aims to explore approaches to care coordination/case management to facilitate the transfer from hospital care to social care in the community for an adolescent with an Acquired Brain Injury ABI. Method : As part of an EU Horizon 2020 study on children’s primary health care, Models of Child Health Appraised MOCHA, access was provided to a network of child health and social care experts Country Agents across 30 European countries. The Country Agents were required to answer a standard set of questions based on a case scenario of a child with an ABI. The questions explored each country’s approach to supporting the transfer of a child back into the community following secondary care. Results were analysed using descriptive statistics. Results : Eighty percent of countries n=24 responded. Fifty percent n=12 of respondents stated that there was a care coordinator/case manager to coordinate social care support in the community for an adolescent with an ABI and their family on discharge from hospital, this support being provided by either one professional, or a number of professionals; in 13% of these countries n=3, the coordinator may vary depending on the adolescent’s need. Seventeen percent of respondents n=4, stated that care is coordinated by a mix of family and professionals. While, 33% of respondents n=8 stated that parents must coordinate supports themselves. Discussion : The results demonstrate that where there are care coordination practices, these differ in the type and number of professionals involved among the different countries in the study. The variation in practices may be due to differing legal and organisational structures for health and social care. A third of countries appear to place responsibilities on parents to organise and coordinate care for their child. As all participating countries have ratified the UN Convention on the Rights of the Child, it seems essential that all countries should have a specific policy to guide the integration of health and social care needs of children with CCN. Conclusion : It is essential that coordination of social care supports in the community for children with CCN and their families is prioritised, particularly given the increased vulnerability of children with CCN. This should be supported by national policy for this specific group of children. Lessons learned : Careful thought is required in formulating questions to ensure uniformly interpretable answers on a multifaceted concept. Limitations : While use of a case scenario is a valuable way to explore social care provision, it provides specific information that is not necessarily generalisable. Suggestions for future work : Research on the availability and coordination of social care supports for children with other complex needs.