Researchers develop first principles for integrated complex care of children
Posted on: 16 October 2018
A collaborative EU research team has developed the first ever principles for providing integrated complex care for children across the acute-community interface in Europe, with detailed insights coming from 30 countries and the health systems within them. The research was led by Dr Maria Brenner from Trinity College Dublin’s School of Nursing & Midwifery, and has just been published in two papers in leading international journal The Lancet Child and Adolescent Health (paper one, and paper two).
With improvements in neonatal and paediatric care, more children living with complex care needs are surviving beyond infancy into late childhood and adulthood than in the past. These children have complex care needs, which are defined as multi-dimensional health and social care needs in the presence of a recognised medical condition or where there is no unifying diagnosis. These needs are individual and contextual, continuing and dynamic, and are present across a range of settings, affected by family and healthcare structures.
The nature of complex care needs means that children living with such needs and their families pose great challenges for integrated health-care delivery, for many reasons. For example, they require dynamic and responsive health and social care over a long period and they need organisational and delivery coordination functions. In addition, health issues such as minor illnesses, which are normally presented to primary care providers, must be addressed in the context of the complex health issues. Furthermore, the clinical presentation, which is individual to each child, can be rare and therefore challenge care management.
The first paper presents the findings on the current state of the management and integration of care for children living with complex care needs at the acute-community interface in Europe, and the challenges and opportunities in the care of these children and their families. The study highlights critical issues in care delivery including enhanced pathways to specialist care, empowerment of families to engage in the design and delivery of care, and the need for comprehensive national integrated care programmes.
The second paper presents and discusses the development of the first core principles and standards for effective, personalised care of children living with complex care needs in Europe. These principles and standards emerged from an analysis of data gathered on several areas, including the integration of care for the child at the acute-community interface, the referral–discharge interface, the social care interface, nursing preparedness for practice, and experiences of the child and family. Three main principles for care delivery identified were: access to care, co-creation of care, and effective integrated governance.
According to the research, and considering the variety of needs across a child’s life, no one-size-fits-all approach exists when it comes to facilitating optimum care for the diverse and complex needs of these children. However, application of these core principles can enhance the quality of care delivery for a child living with complex care needs and can support their parents as their primary caregivers. The findings articulate well with the evolution of the life course health developmental model in highlighting the issue of non-linearity in the care and management of children and their families.
Lead author of these papers, Dr Maria Brenner, is Director of Research and Associate Professor in Children’s Nursing in the School of Nursing & Midwifery at Trinity College Dublin.
Dr Brenner said:
The findings from this multinational and multi-health-system perspective across 30 countries, offer, for the first time, a means to benchmark existing services for children living with complex care needs and their families. They serve as a reference point for policy makers and health and social care professionals to support optimal practice in the care of children living with complex care needs. This is essential to support equity of access to care, trust and transparency in care delivery.
The research, within the Models of Child Health Appraised (MOCHA) project, was funded through the EU Commission Horizon 2020 programme. As the MOCHA project reaches its conclusion the findings are part of active discussions for onward use within the Irish health service and with the World Health Organisation (WHO) and EU bodies.