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

Abstract

Background: To achieve benefits of person-centred outcome measures within routine children's palliative care, implementation plans and the intended pathways to impact must be established.

Aim: To develop a Theory of Change and Implementation Plan for sustained implementation of a novel person-centred outcome measure into routine hospital care for children with life-limiting conditions and to identify potential causal mechanisms.

Design: Participatory workshops and a directed content analysis developed a Theory of Change. Framework analysis of workshop qualitative workshop data, supported by Normalisation Process Theory Informed an implementation plan.

Setting/participants: Health and social care professionals and parent/carers were recruited to six online workshops through social media and networks.

Results: 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.