Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 1–25 of 50 publications
Assisted dying in the UK: please don't ignore the impact on children and young people
"The Leadbeater Terminally Ill Adults (End of Life) Bill, the latest UK bill on assisted dying, passed its second reading in the House of Commons in November 2024 after a short period of intense debate and extensive high-profile media coverage. However, these …
Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers
Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing.
Aim:…
Exploring the experiences of children's palliative care for forced migrant families in the United Kingdom: an interpretative phenomenological study
Introduction: This study focused on understanding the experiences of forced migrant families and the health care professionals who care for them within palliative care. Palliative care for children requires an active, holistic approach to care, with a focus up…
Indi Gregory: A Wider Perspective on Children's Best Interests at the End-of-life
Extract
I. INTRODUCTION
The case of Indi Gregory is the last of a series of high-profile judgments regarding the end-of-life for terminally ill children. Such cases have typically generated wide controversy among scholars, practitioners, the general public, an…
'Listen to our voice!' using co-creation and art-based methods to explore the welfare and wellbeing of siblings of children with life-limiting conditions
Sibling of children with a life-limiting condition (LLC) face challenge. Yet there is relatively little research specifically investigating the psychosocial impact on siblings living with a child with an LLC. A qualitative participatory methodology helped expl…
A psychological experience assessment protocol of parent caregivers in paediatric palliative care
Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence…
External second opinions: building trust between health professionals and families
In medicine, external second opinions are frequently sought to inform decisions around a patient's proposed course of treatment. However, they are also sought in more challenging circumstances such as when disagreement arises between the healthcare team and th…
Max's legacy: an evaluation of the impacts of baby loss on staff and families
Background/Aims
There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as experiences o…
Navigating a child's best interest: the essential role of palliative care
In June, 2023, BBC One aired Jack Thorne's highly anticipated series Best Interests, the fictional story of Marnie (played by Niamh Moriarty), a teenager with a rare form of muscular dystrophy, whose rapid health deterioration forces her family to face the com…
Sources of emotional challenge for practitioners delivering family centred care after the death of child: an inductive thematic analysis.
Care after the death of a child and support of their bereaved family is an important element of the services offered by children's hospices in the United Kingdom. The study aims to explore the emotional challenges of those delivering care to families of childr…
George's Lullaby: A Case Study of the Use of Music Therapy to Support Parents and Their Infant on a Palliative Pathway
Having an infant diagnosed with a life-limiting condition is a stressful time for parents and has been shown to have an impact on parental mental health. Music Therapy, when provided by an HCPC registered Music Therapist with enhanced Neonatal training, can em…
The Impact of COVID-19 on Palliative Care for Children Within the UK
Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.
Fifteen-minute consultation: Paediatric organ and tissue donation
This article explores ways in which paediatricians can help increase awareness and embed organ and tissue donation in the end-of-life care process. This can save patient lives on the organ transplant waiting list, many of whom currently die prematurely. The in…
Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children
BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for …
Integration of Routine Parental Request of Organ Donation in End-of-Life Care of Children with Neurologic Disorders in the UK: Unresolved Medical, Legal, Cultural, and Religious Challenges
The UK adopted the opt-out system (deemed or presumed consent) in end-of-life organ donation enforceable in May 2020. Presumed consent applies to adults but not children. Transplant advocates have recommended that all children on end-of-life care should be ref…
Palliative care in the neonatal intensive care unit
With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the UK that pro…
Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory righ…
The Chameleon Project: A children's end of life care quality improvement project
Objective: NHS England's Marginal Rate Emergency Threshold (MRET) and Readmission Fund funded the Chameleon Project 2018 (Twitter account: @chameleonproje1), to improve children's end of life care. This funded a lead disability paediatrician with expertise in …
When a child is sick: the role of social tourism in palliative and end-of-life care
Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered in children…
Ethics and patient and public involvement with children and young people
Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the intr…
Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning
In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound imp…
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