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Implementation of a Managed Clinical Network for Children’s Palliative Care – a Qualitative Evaluation

This evaluation involved interviews and focus groups with key stakeholders of the Network, and interviews with staff who work for organisations that are members of the Network.  The Martin House Research Centre explored the implementation of the Network and identified the key barriers and enablers of its delivery. This evaluation used interviews and focus groups with key stakeholders of the Network management team and interviews with staff who work for organisations that are members of the network.

The study was completed in early 2020 and a publication is in the process of being submitted to an appropriate journal. The key findings were:-

• The Network has made progress in formalising governance processes, providing training and networking events, endorsing new guidelines, and improving collaboration between organisations;
• Key factors contributing towards the network’s success include the Network’s co-ordinator, the involvement of committed individuals who lead the Network, and a governance structure that fosters collaboration and provides a mechanism for communication;
• The Network’s development is impeded by numerous barriers, some of which are cross-cutting and difficult to address, including: limited funding for the Network and for children’s palliative care more generally; having no shared technology; the lack of standards and limited evidence-base for children’s palliative care; and the shortage of community nursing and specialist palliative care staff;
• These barriers have impacted on the Network’s ability to agree plans, implement changes and evaluate the Network, and the level of member engagement that was reported to be partial and inconsistent. These impacts are also now barriers to future success;
• The factors that can be addressed by the Network include: the lack of clarity about the model of care adopted by the Network; the varied knowledge among Network members; the barriers to accessing training; the lack of family involvement; and some of the challenges to evaluation that have led to missed opportunities to demonstrate early impacts.

Link below to the study information leaflet:-

Working Together to Deliver Children's Palliative Care Across a Region (PDF , 92kb)