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 3851–3875 of 4332 publications
Withdrawal of Life-Sustaining Therapy at Home: Broadening the View of End-of-Life Care in the PICU...Even in Children's Homes
For many patients, the preferred place of death is shifting from the hospital to home. Furthermore, home extubation is becoming more common place fore pediatric patients but still remains rare in the context of all withdraws of life-sustaining therapies (WLST)…
"You can only give warmth to your baby when it's too late": Parental bonding with their extremely preterm and dying child
Introduction: Various factors hamper the bonding process between parents and their extremely premature baby. Parental bonding is especially difficult and complicated when babies do not survive and die either in the delivery room or in the neonatal intensive ca…
"You Can Only Give Warmth to Your Baby When It's Too Late": Parents' Bonding With Their Extremely Preterm and Dying Child
This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical …
A call for increased paediatric palliative care research: Identifying barriers
The evidence base underpinning paediatric palliative care (PPC) needs to be expanded and be made robust if advances in practice and reduction in suffering are to be achieved. While current guidance emphasises the need to include children and young people (CYP)…
Acknowledged Dependence and the Virtues of Perinatal Hospice
Prenatal screening can lead to the detection and diagnosis of significantly life-limiting conditions affecting the unborn child. Recognizing the difficulties facing parents who decide to continue the pregnancy, some have proposed perinatal hospice as a new mod…
A Comparison of Circumstances at the End of Life in a Hospital Setting for Children With Palliative Care Involvement Versus Those Without
Context: Specialized pediatric palliative care (PPC) services have become more common in urban pediatric hospital settings, although little is known about palliative care specialist involvement.Objectives: The objective of this study was to compare circumstanc…
A comparison of continuing bonds over time in bereaved parents and siblings after the death of a child
Objectives * Compare purposeful and non-purposeful continuing bonds between one and two years post-death. * Compare comforting and discomforting effects of continuing bonds between one and two years post-death. Original Research Background. Continuing bonds re…
A Core Outcome Set for Children With Feeding Tubes and Neurologic Impairment: A Systematic Review
CONTEXT: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting. OBJECTIVE: To synthesize an evidence base of qualitative data on …
Addressing the continuum of maternal and newborn care in Ghana: implications for policy and practice
Although the past decade has brought global reductions in maternal, infant and child mortality, many low-resource settings have failed to make significant gains relative to their high-income counterparts. In Ghana, nearly 50% of under-five mortality in 2014 co…
Adequacy of palliative care in a single tertiary neonatal unit
AIM:
End-of-life care remains part of the scope of practice in all neonatal units. This study aimed to characterise the end-of-life care provided in an Australian tertiary neonatal centre, where paediatric palliative care was accessible via a consultative serv…
A descriptive report of end-of-life care practices occurring in two neonatal intensive care units
BACKGROUND: In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments. AIM: To explore neonatal death events and end-of-lif…
Adolescents and young adults (AYA) at the end of life: Using voicing my choices to enhance communication and guide planning
PURPOSE: Over 11,000 adolescents and young adults (AYA), ages 15-34, die yearly from cancer and other life-threatening conditions. In order provide comprehensive end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time…
Advance care planning in adolescents with cystic fibrosis: A quality improvement project
INTRODUCTION: Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider attitudes an…
Advance care plans in paediatric oncology
Background/Objectives: Advance Care Plans (ACP) are finding widespread application within paediatric and adult palliative care, but with variable success in their uptake within paediatric hospitals and hospices. Demonstrable benefits included maintaining commu…
Advanced planning in perinatal palliative care-are we making clear end of life plans?
Aim With continuing advancements in both antenatal and neonatal care, perinatal palliative continues to pose significant challenge. A number of professional bodies have published best practice guidance on the delivery of palliative care in the postnatal period…
Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps
This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clini…
A gap between the intention of the Swedish law and interactions between nurses and children of patients in the field of palliative oncology - The perspective of nurses
PURPOSE: Children who have a parent with incurable cancer are in a vulnerable situation and the Swedish law tries to protect them. This article aims to explore the interactions between nurses and children of patients with incurable cancer from the nurses' pers…
An evaluation of an interprofessional master's level programme in children's palliative care: The students' evaluation
In 2010/12 an innovative children's palliative care interprofessional educational project funded by the Irish Hospice Foundation was undertaken in a University faculty (Trinity College Dublin). This initiative responded to international educational recommendat…
An evaluation of non-medical prescribing in a children's hospice service
Background Extensive changes to legislation in the last 15 years have led to a rapid expansion of the role of non-medical prescribers (NMPs). There appears to be a paucity of information evaluating the role that NMPs can play in paediatric palliative care sett…
Animal-Assisted Therapy in Pediatric Palliative Care
Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promis…
An Order Protocol for Respiratory Distress/Acute Pain Crisis in Pediatric Palliative Care Patients: Medical and Nursing Staff Perceptions
BACKGROUND: An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family, the OPD i…
A Qualitative Examination of Physician Gender and Parental Status in Pediatric End-of-Life Communication
In this study we utilized the framework of patient-centered communication to explore the influence of physician gender and physician parental status on (1) physician-parent communication and (2) care of pediatric patients at the end of life (EOL). The findings…
Are we looking after our neonatal nursing colleagues? Experiences from an end of life care support study
Aims Neonatal death is not uncommon in tertiary neonatal intensive care. Though nurses are focussed on supporting parents through their loss, it is unclear how they are coping with this stress. We therefore aimed to explore the experiences of our nurses during…