Fifteen-minute consultation: Developing an advance care plan in partnership with the child and family.

An advance care plan (ACP) is the record of a discussion between an individual (where possible), their professional care givers and those close to them about their future care. When performed well, the process provides all those involved with the opportunity to talk honestly about the future allowing children and their families to retain autonomy and to influence how they are looked after. While this may represent a difficult area of practice for healthcare professionals, both staff and families appear to benefit when the process is fully informed and the child and family are actively involved. This article is enriched by the insight of two bereaved parents, who have engaged actively with the process of advance care planning. As a multidisciplinary writing team, we aim to share our experiences, in the context of recent national guidance, on the use of ACPs.

Fifteen minute consultation: Practical pain management in paediatric palliative care.

Pain and distress in the paediatric palliative care population can be very difficult to manage. Clinical scenarios range from the acute management of cancer-related pain at the end of life to the ongoing long-term support of children with complex multimodal pain related to progressive neurological conditions. Understanding the child's underlying condition, possible causes of pain and their preferred mode of communication are important to the delivery of holistic care. Modification of environmental factors, basic care consideration and non-pharmacological measures have a large role to play, alongside conventional analgesics. Medication may also need to be delivered by novel routes such as transdermal patches, continuous subcutaneous infusion of multiple drugs or transmucosal breakthrough analgesic doses. Two cases are used to illustrate approaches to these clinical problems.

Palliative medicines for children - a new frontier in paediatric research.

OBJECTIVES: This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide symptom management for children with life-limiting illnesses and to raise awareness of this group of 'therapeutic orphans'. Currently, clinicians have limited, often unsuitable medication choices for their paediatric palliative care patients, with little hope of moving away from the status quo. KEY FINDINGS: Most medicines used in children receiving palliative care are old and off-patent drugs, developed for and tested in an adult population. Many are not available in suitable formulations (dosage form and strength) for administration to children, and there are often no age-related profiles of adverse drug reactions or for safe dosing. SUMMARY: Existing regional paediatric palliative care networks and support organisations should lobby funding bodies and the academic community to support appropriate research for this group of therapeutic orphans. Support must also be provided to pharmaceutical companies in the development of suitable products with appropriate formulations.

Realistic nurse-led policy implementation, optimization and evaluation: novel methodological exemplar.

AIM: To report the first large-scale realistic nurse-led implementation, optimization and evaluation of a complex children's continuing-care policy. BACKGROUND: Health policies are increasingly complex, involve multiple Government departments and frequently fail to translate into better patient outcomes. Realist methods have not yet been adapted for policy implementation. DESIGN: Research methodology - Evaluation using theory-based realist methods for policy implementation. METHODS: An expert group developed the policy and supporting tools. Implementation and evaluation design integrated diffusion of innovation theory with multiple case study and adapted realist principles. Practitioners in 12 English sites worked with Consultant Nurse implementers to manipulate the programme theory and logic of new decision-support tools and care pathway to optimize local implementation. Methods included key-stakeholder interviews, developing practical diffusion of innovation processes using key-opinion leaders and active facilitation strategies and a mini-community of practice. New and existing processes and outcomes were compared for 137 children during 2007-2008. RESULTS: Realist principles were successfully adapted to a shorter policy implementation and evaluation time frame. Important new implementation success factors included facilitated implementation that enabled 'real-time' manipulation of programme logic and local context to best-fit evolving theories of what worked; using local experiential opinion to change supporting tools to more realistically align with local context and what worked; and having sufficient existing local infrastructure to support implementation. Ten mechanisms explained implementation success and differences in outcomes between new and existing processes. CONCLUSIONS: Realistic policy implementation methods have advantages over top-down approaches, especially where clinical expertise is low and unlikely to diffuse innovations 'naturally' without facilitated implementation and local optimization.

Better at home? Benefits of case management for children with complex needs.

Care at home for children with complex health needs is recommended in health policy and advocated by professionals and voluntary organisations. Measuring benefits for the child and family is difficult and burden is known to be high for the family, especially when support for home care is inadequate. Case examples are used in this article to demonstrate the clinical and cost effectiveness of home care for children following acquired brain injury in the context of case management of an intensive package of support for each child. A first step to more widespread adoption of case-managed home care packages is to share examples of best practice that can demonstrate good outcomes and cost effectiveness.