This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving…
Background: Although there are many studies that explore complicated grief, no studies have examined the impact of bereavement support services on the progression to complicated grief. The aims of our study were to describe the types of bereavement…
Major announcements were made in all four parts of the UK at the end of last year. All have the potential to improve the way seriously ill children are looked after.
Perinatal palliative care allows for an active partnership among a pregnant woman, her family, and her multidisciplinary treatment team and addresses her specialized medical care, emotional, social, and familial needs when a life-limiting fetal…
Background: The question ‘would you be surprised if this patient died in the next 12-months’ is widely used for identifying adult patients in the last year of life. However, this has not yet been studied in children.
Pain is a significant public health problem that affects all populations and has significant financial, physical and psychological impact. Opioid medications, once the mainstay of pain therapy across the spectrum, can be associated with significant…
CONTEXT: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is…
OBJECTIVE: To explore the influence of the Amulet artwork and exhibition on midwifery students' perceptions of caring for parents experiencing perinatal death. DESIGN: A descriptive qualitative design involving face-to-face semi-structured interviews…
The present study aimed to examine whether bereaved parents “meaning-made”–defined as results of attempts to reduce discrepancies between the meaning assigned to the death of the child and self and world-views—was influenced by their own and their…
Understanding parents' experience of care is essential to develop high-quality perinatal bereavement services. This study aimed at developing a questionnaire to identify parents' needs and record their experience of care. The patient experience…
Objective.: Disabling pediatric chronic pain is accompanied by a significant burden to those affected and by high societal costs. Furthermore, it bears the risk of aggravation into adulthood. Studies have shown intensive interdisciplinary pain…
OBJECTIVES: Pediatric subspecialty care, including multidisciplinary palliative care, tends to be located in urban academic centers or children's hospitals. Telehealth provides the opportunity to care for patients who would otherwise not be able to…
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal qualitative study over two years using interpretive descriptive…
Simulation has been shown to improve the preparedness of practitioners in acute care. In this review we evaluate using simulation to prepare practitioners to deliver palliative care in multidisciplinary teams. The Joanna Briggs Institute approach was…
Pediatric residents report they are not sufficiently trained to communicate with families at a child's death. We performed a study to prove feasibility and assess whether simulation improves their communication and experience. Residents were assigned…
BACKGROUND: Hospice care for children with multiple complex chronic conditions (MCCC) is complicated given their unique health at the end of life (EOL). Little is known about the quality of the hospice care MCCC children receive and how that might…
Background Neonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers…
Objective To describe medical, safety, and health care utilization outcomes associated with an early treatment model for neonatal opioid withdrawal. Study Design This is a retrospective review of 117 opioid-exposed infants born in a large regional…
Background: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and…
Background As part of the 2007 health reform in Germany the structure of outpatient palliative care for children and adolescents was adopted for the first time and then implemented in Erlangen-Nuremberg in 2009. Methods The introduction of Pediatric…
Pain and distress in the paediatric palliative care population can be very difficult to manage. Clinical scenarios range from the acute management of cancer-related pain at the end of life to the ongoing long-term support of children with complex…
Sleep problems have been identified as a potential antecedent of chronic pain and pain-related disability in pediatric populations. In adult studies, affect has been implicated in these relationships. This study sought to better understand the…
In spite of growing bereavement literature, the meaning of the lived experience of parental bereavement is not well understood. This article presents selected findings from a Heideggerian hermeneutic phenomenological study which aimed to describe the…
OBJECTIVE: Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses.…
OBJECTIVE: Describe changes in mothers' and fathers' grief from 1 to 13 months after infant/child neonatal/pediatric intensive care unit death and identify factors related to their grief. METHODS: Mothers (n = 130) and fathers (n = 52) of 140…
In the last 20 years, the prevalence of children on domiciliary long-term ventilation (LTV) has increased in many countries, and in Italy it is now 4.3 of the 100 000. The complex management of these patients’ conditions requires highly specialised…
Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing…
OBJECTIVE AND BACKGROUND: Few previous studies have explored how pediatric palliative care (PPC) influences hospital utilization. We evaluated this among PPC recipients in a single center. METHODS: This is a retrospective cohort study of 109 patients…
BACKGROUND: A freestanding quaternary pediatric hospital in New England has been facilitating parents' requests to take their child home or to a hospice facility from an Intensive Care Unit at end of life for the withdrawal of life sustaining…
BACKGROUND: Pediatric fellows receive little palliative care (PC) education and have few opportunities to practice communication skills. OBJECTIVE: In this pilot study, we assessed (1) the relative effectiveness of simulation-based versus didactic…
Background Studies have documented the experiences of families with seriously ill children, but few have focused on the spiritual needs of families confronted with a child's imminent death.
Pediatric social workers working in acute care hospital settings may care for children and their families in end-of-life circumstances. This qualitative study is part of a larger study focusing on the experiences of health care providers working with…
Parents of seriously ill children are charged with making complicated medical decisions, and many of those decisions are made during their children's hospitalizations. As medical staff seek to support parents, it is important for them to understand…
BACKGROUND: The number of children and young people (CYP) living with life-limiting and life-threatening conditions is rising. Paediatric palliative care is a relatively new aspect of healthcare, the delivery of which is variable, with a wide range…
BACKGROUND: Pain may be reported in one-half to three-fourths of children with cancer and other terminal conditions and anxiety in about one-third of them. Pharmacologic methods do not always give satisfactory symptom relief. Complementary therapies…
Ethicists can encourage clinicians to consider language used to communicate with parents and ask about the family’s values to ensure ethical pediatric end-of-life care.
OBJECTIVE: To examine associations among parent perceptions of infant symptoms/suffering, parent distress, and decision making about having additional children after an infant's death in the NICU. DESIGN: Mixed-methods pilot study incorporating…
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)…
Death of an infant is acutely stressful for parents and professionals. Little is known about junior nurses' experiences providing end-of-life care in Neonatal units (NNU). This study aimed to better understand junior nurses' experiences providing…
