Clinical Research

Research project from Together for Short Lives (TfSL) and the Association of Paediatric Palliative Medicine (APPM) for identifying ways to support and develop those undertaking or considering doctoral studies concerning children and young people with life-limiting and life-threatening conditions and those who provide care and support to them.

The aim of this research was to describe the nature and causes of reported patient safety incidents relating to care in the community for children dependent on long-term ventilation with the further aim of improving safety.

When a child is diagnosed with a life-threatening condition, one of the most challenging tasks facing health-care professionals is how to communicate this to the child, and to their parents or caregivers. This paper reviews the effect of communication on children's emotional, behavioural, and social functioning, as well as treatment adherence, disease progression, and wider family relationships.

This review will inform understanding of symptom management in ICYP at end-of-life.

The use of long-term ventilation (LTV) in children is growing in the UK and worldwide. This reflects the improvement in technology to provide LTV, the growing number of indications in which it can be successfully delivered and the acceptability of LTV to families and children. This article discusses the various considerations to be made when deciding to initiate or continue LTV, describes the process that should be followed, as decided by a consensus of experienced physicians, and outlines the options available for resolution of conflict around LTV decision making.

Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. This paper defines and describes one model for providing perinatal palliative care, drawing on the personal and professional experience of the authors.

Together for Short Lives-Asssociation for Paediatric Palliative Medicine [TfSL-APPM] research group was formed in recognition of the challenges in research with life limited children and their families and in the hope that by coming together – researchers and clinicians for a number of disciplines- we could contribute to the solutions.

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).