Clinical Research

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. The multidisciplinary writing team, share their experiences, in the context of recent national guidance, on the use of ACPs.

The aim of this survey was to investigate current off-label prescribing of fentanyl for breakthrough pain relief in paediatric palliative care and to ascertain any barriers to use.

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

With the growing number of children and young people with complex care needs or life-limiting conditions, alternative routes for nutrition have been established (such as gastrostomy feeding).

Understanding the child's underlying condition, possible causes of pain and their preferred mode of communication are important to the delivery of holistic care. This article aims to explore this.

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of diagnosis of a life limiting condition and entails planning for the future.

This paper examined the potential of a new classification framework, The Spectrum of Children's Palliative Care Needs, to facilitate identification of children with palliative care needs for the purposes of minimum data set collection and population needs assessment.

This article reports a systematic review of literature undertaken to identify characteristics and experiences of anticipatory mourning in caregivers of teenagers and young adults with life-limiting or life-threatening conditions. This review focused on six studies that met inclusion criteria and reported characteristics of anticipatory mourning in caregivers of teenagers and young adults. Characteristics and experiences were sorted into four main themes: symptoms; a sense of loss; caregiver behaviour; and the unique experience of caring for, or losing, a teenager or young adult. The review suggests that there are characteristics and experiences of anticipatory mourning that are unique to caregivers of this age group.

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. The aim of this research was to report the first large-scale realistic nurse-led implementation, optimization and evaluation of a complex children's continuing-care policy.

Approximately two-thirds of patients who die in the pediatric intensive care unit (PICU) do so following withdrawal of intensive care treatment. Most often when intensive care treatment is withdrawn, the child remains in the PICU for end-of-life care. This study aimed to examine the process of referral over a 6-year period of children from a PICU to children's hospices for end-of-life care.

A research study into the learnings from palliative paediatric care and the transition from child to adult practice.