OBJECTIVE: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD: Cross-sectional survey using a web-based questionnaire. SETTING: UK specialist paediatric…
Ana Todorovic's baby, Nadia, died just before birth. Ana says she received excellent care and was told when 37 weeks pregnant that Nadia was not going to survive for long.
OBJECTIVES: To evaluate for any association between time of admission to the PICU and mortality. DESIGN: Retrospective cohort study of admissions to PICUs in the Virtual Pediatric Systems (VPS, LLC, Los Angeles, CA) database from 2009 to 2014.…
INTRODUCTION: In 2013, 55,000 infants and children, aged 0 to 14, died in the United States. Nearly 7,000 of those deaths were attributed to traumatic causes. A child's death significantly affects emergency service personnel (ESP) caring for children…
It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a…
OBJECTIVES: to understand the family's experience of the child and/or teenager in palliative care and building a representative theoretical model of the process experienced by the family. METHODOLOGY: for this purpose the Symbolic Interactionism and…
AIM: To explore bereaved parents' interactions with healthcare providers when a child dies in a paediatric intensive care unit. BACKGROUND: Though most children admitted to a paediatric intensive care unit will survive, 2-5% will die during their…
Aims Patients with Trisomy 18 have a poor prognosis-only 5%-10% of children survive beyond the first year; however various clinical features of Trisomy 18 such as gastrointestinal, cardiac and central nervous system anomalies may benefit from…
Adolescence, the transition between childhood and adulthood, represents a time of rapid biological, neurocognitive, and psychosocial changes. These changes have important implications for the development and evolution of adolescent spirituality,…
Aims Children's hospices provide a range of services for children with life limiting (LLC) and life threatening conditions (LTC). Referral previously relied on obtaining supporting views from the child's paediatrician and there was often delay…
OBJECTIVES: Controlling seizures in children approaching death can be difficult, and there is a limited evidence base to guide best practice. We compared current practice against the guidance for seizure management produced by the Association of…
AIM: This study examines parental satisfaction with care received in the context of a life-limiting fetal diagnosis and subsequent birth. METHODS: Survey methods were utilized to embed the Quality Indicators (QI) and Parental Satisfaction of…
BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by…
Aim Symptom assessment is a core component of paediatric palliative care. This audit aimed to determine whether the symptoms of children attending for routine short breaks in a children's hospice were assessed. The development of a formal symptom…
OBJECTIVE: Staff in pediatric intensive care units (PICU) are inherently exposed to potentially traumatic events. Posttraumatic growth (PTG) is the occurrence of positive changes after experiencing a traumatic event. This study aims (a) to evaluate…
OBJECTIVE: Although the death of a child is a devastating event, recent evidence shows that personal growth is a relevant outcome of parents' grief. This study aimed to examine the factors associated with posttraumatic growth (PTG) and to propose a…
Background: Pain is one of the most common symptoms in children and young people (CYP) with life-limiting conditions (LLCs) which include a wide range of diagnoses including cancer. The current literature indicates that pain is not well managed,…
OBJECTIVE: To evaluate the performance of the Pediatric Risk of Mortality 3 (PRISM-3) score in critically ill children with heart disease. METHODS: Patients
CONTEXT: Palliative sedation is a means of relieving intractable symptoms at the end of life, however, guidelines about its use lack consistency. In addition, ethical concerns persist around the practice. There are reports of palliative sedation in…
OBJECTIVES: To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life. METHODS: California Medicaid data were used to estimate the relationship between pediatric primary care…
While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care…
OBJECTIVE: While improvements in healthcare have resulted in children with complex and life-threatening conditions living longer, a proportion of them still die. The death of a child puts parents at increased risk for anxiety, depression, and…
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)…
Palliative care in the NICU gets a bad rap to the point where it is not even clearly described to families. There is a strong need for education and dispelling the myths that surround this very important type of support.
The aim of this study was to investigate maternal grief after losing a child in relation to forgiveness and posttraumatic growth. A sample of 60 grieving mothers from Slovakia completed the following battery: The Texas Revised Inventory of Grief, a…
Understanding research priorities in children's palliative care is important for nurses, following the phasing out of the Liverpool Care Pathway, which has led to a change in palliative and end of life care ( Department of Health (DH) 2014 ).…
Background Supporting siblings following loss of an infant is increasingly recognised as an important aspect of neonatal bereavement support. The grief process in children is often complicated by feelings of loss, guilt as well insecurity about their…
OBJECTIVE: We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice.…
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for…
Aim To determine the experience of training in paediatric palliative medicine (PPM) among trainees, to identify how well trainees were able to meet RCPCH competences in PPM, and to explore educational opportunities desired by trainees to enhance…
Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes…
OBJECTIVE: To explore parental attitudes and values in the end-of-life decision-making process of extremely preterm infants (gestational age < 28 weeks). DESIGN: Hermeneutically oriented qualitative research design with in-depth interviews. SETTING:…
OBJECTIVE: Delivering prognostic information to families requires clinicians to forecast an infant's illness course and future. We lack robust empirical data about how prognosis is shared and how that affects clinician-family concordance regarding…
OBJECTIVE: To determine how many children are admitted to paediatric intensive care unit (PICU) with life-limiting conditions (LLCs) and their outcomes. DESIGN: National cohort, data-linkage study. SETTING: PICUs in England. PATIENTS: Children…
Aims An audit of children and young person's advanced care plans (ACPs) in two district general hospitals (centres A and B) against NICE guidance [1]. Methods Centre A: consultants were emailed to identify the population with ACPs. Centre B: two…
Background In order to improve outcomes for acutely unwell children and young people it is essential to learn from those cases in which children deteriorate and die. In our trust there was no universal record of child deaths or deteriorations and no…
Drawing on fieldwork in a neonatal intensive care unit (NICU) in Chiang Mai during 2010 and 2012, I examine neonatal care as a contingent entanglement of technological and ethical relationships with vulnerable others. Along the continuum of universal…
