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…
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,…
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…
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…
OBJECTIVE: To evaluate the performance of the Pediatric Risk of Mortality 3 (PRISM-3) score in critically ill children with heart disease. METHODS: Patients
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…
OBJECTIVES: The benefits of non-invasive ventilation (NIV) have been clearly demonstrated in pediatrics. In palliative care, NIV can improve the level of comfort and quality of life and can decrease dyspnea. The objective was to survey pediatricians'…
A positive youth development perspective focuses on recognizing psychosocial strengths and providing social environments that contribute to the development of these in children and adolescents. Bereavement camps can provide such an environment as…
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…
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.…
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…
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…
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.…
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…
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…
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…
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)…
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…
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and…
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: 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…
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:…
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…
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: 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…
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…
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.
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…
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.
Objective: Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains…
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…
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile,…
The charity Together for Short Lives has launched a campaign to encourage nurses to consider a role in children's palliative care in the voluntary sector, to prevent any further reduction in services for this already vulnerable group.
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…
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…
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…
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…
