Developing a Theory of Change and Implementation Plan to implement a novel child- and family-centred outcome measure in paediatric palliative care

Eight health and social care professionals and eight parents participated. The Theory of Change identified overall impact of improved care and quality of life, through improved identification of symptoms and concerns and improved communication between healthcare teams. However, for this to happen, education and training on the outcome measure, anticipated benefits, how to implement and use it are required. Logistical, resource and staffing barriers must be addressed, alongside the development of a detailed implementation plan. Analysis of workshop transcripts identified seven themes relating to the domains of Normalisation Process Theory: education and information needs, the importance of a tailored approach, stakeholder engagement and the role of champions, healthcare records and IT system support requirements, improved health outcomes, improved experience of care and evidence for service provision, development, evaluation and expansionConclusion:Future work should pilot test the Theory of Change and Implementation Plan.