The models provide new clarity on the critical success factors for achieving successful partnerships with children and families in clinical encounters with healthcare professionals, and barriers and

facilitators that need to be addressed for optimal implementation and use of children’s health information resources in decision-making. Figure 3 medical Explanatory model of ‘Partnership Inhibitors,research,lifescience,medical and Participation’ between children, families and healthcare professionals in NHS contexts [4]. Figure 4 Explanatory model of the critical success factors for translation, implementation and use of children’s health information in clinical practice by healthcare Inhibitors,research,lifescience,medical professionals [4]. Methods The following methods and processes

were used to develop, implement and evaluate the My Choices booklets. Clarifying the focus and purpose of the ‘My Choices’ booklets When we consulted with parents of children with life-limiting conditions in developing our project proposal, they gave us a clear steer that the care planning resources should focus on ‘living’ and not ‘end-of-life’. Parents said that in their experience children had many ‘near misses’ and could ‘bounce back’ to health again in unpredictable ways even if on a downwards spiral towards Inhibitors,research,lifescience,medical eventual death. Their children had also frequently outlived original medical projections of their life expectancy by many years, so there was a sense that parents wanted more control over how they planned ahead when things Inhibitors,research,lifescience,medical were uncertain and medical knowledge was lacking. It was also apparent that

parents would prefer a care planning resource primarily for their own use and, if appropriate, their children’s use and not one that looked like a medical Inhibitors,research,lifescience,medical or nursing care planning framework used by healthcare professionals to facilitate discussion with parents. Early discussions with parents suggested that a parent or child-held resource that ‘belonged’ to them could potentially act as a catalyst or object through which they could feel more comfortable thinking about and talking through sensitive issues, and could potentially be a source of empowerment. There are other exemplars – such as parent-held universal child health books that are liked and used by parents to those record important information and trigger or facilitate timely discussion with healthcare professionals [24]. In parallel to our group developing the ‘My Choices’ resources for children and parents, Fraser et al. [25] were working to develop the ‘Wishes Document’ for healthcare professionals. This advance care planning documentation incorporates the Lifetime Framework and is designed to be used as a professional guide in response to family needs and requests.