In summary, although there had been considerable investment in children’s palliative care guidance and service delivery, there remained a notable absence of child and parent-held resources to support future care planning and decision-making. We set out to rectify this situation using evidence-based principles. Aim The aim of this aspect of a larger

study [6] was to develop and evaluate Inhibitors,research,lifescience,medical the ‘My Choices booklets’ for use by parents and children to facilitate thinking and engagement with future care planning. Conceptual frameworks Conceptual framework for the evaluation of integrated palliative care networks Children’s palliative care is currently integrated and delivered by regional clinical networks. We used Bainbridge et al’s framework [21] to conceptualise the service delivery and organisation Inhibitors,research,lifescience,medical of children’s palliative care, within which child, family and client-centred care is a principal construct, information transfer and communication is a process of care domain, and key patient outcome domains include availability and access to care and the free flow and accessibility of information, and perceptions client-centredness of care such as shared knowledge and patient preferences

(see Figure1). Figure 1 Conceptual Framework for the Inhibitors,research,lifescience,medical Evaluation of Integrated Palliative Care Networks. Copyright Bainbridge et al. BMC Palliative Care 2011. Reproduced with permission of Daryl Bainbridge and BMC Palliative Care. The lifetime framework The Lifetime Service is an award winning children’s community nursing and psychology service, which has pioneered home-based care and support for children with non-malignant life-limiting INK1197 research buy illnesses Inhibitors,research,lifescience,medical and their families [22]. The Lifetime Framework is a ‘best-practice’ conceptual framework developed for use by healthcare professionals to structure their discussions with parents and, if appropriate, children. Its development is described

in detail by Finlay et al. [22]. The original 3 × 3 framework includes the views of the child, family and ‘others’ involved Inhibitors,research,lifescience,medical before death, during an acute life-threatening event, at death, Calpain and after death (Figure2). Figure 2 The Lifetime Framework for conceptualising care planning. Explanatory models of ‘partnership and participation’ in care and ‘translation of children’s health information resources into routine practice’ We also used two explanatory models that were developed from the Children’s Health Information Matters Project [4]. One shows what high and low levels of ‘partnership and participation’ in care and decision-making between children, families and healthcare professionals looks like (Figure3), and the second explains the critical factors associated with high and low levels of translation, implementation and use of children’s health information resources in routine practice (see Figure4).