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 476–500 of 560 publications
Palliative care in neonatal period and ethical issues
Perinatal palliative care is the active total care of the fetus who has been diagnosed with a life-limiting condition with his/her entirety and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether…
Palliative care in neonatology: French neonatologists' practice
Background. - Though ethical dilemma is common in neonatal practice, it is only recently subject to scientific research. Objectives. - We aimed to describe neonatologists' practices in end of life decision-making processes and in palliative care, and their pra…
[Parental mourning after a perinatal loss]
The loss of a close friend or relative is always an ordeal. When this loved one is a baby, born or even unborn, a number of specific aspects have been reported by parents and researchers. The specificities of perinatal mourning have been progressively recogniz…
Parent Distress and the Decision to Have Another Child After an Infant's Death in the NICU
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 mailed surveys …
Parent experience of neonatal encephalopathy: The need for family-centered outcomes
We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study of therap…
Primary palliative care in neonatal intensive care
This article explores the 2014 Institute of Medicines recommendation concerning primary palliative care as integral to all neonates and their families in the intensive care setting. We review trends in neonatology and barriers to implementing palliative care i…
Reticence in disclosure of HIV infection and reasons for bereavement: impact on perinatally infected adolescents' mental health and understanding of HIV treatment and prevention in Johannesburg, South Africa
Survival rates of perinatally infected HIV-positive adolescents (PIA) are increasing in sub-Saharan Africa. There is a gap in understanding how disclosure and bereavement have an impact on PIA beliefs and understanding of their HIV infection and its management…
Revealing the impact of loss: Exploring mental health through the use of drawing/writing with HIV positive adolescents in Johannesburg
The article presents a study with aim, Revealing the Impact of Loss: Exploring Mental Health Through the Use of Drawing/Writing With HIV Positive Adolescents in Johannesburg. This study examined the use of drawings completed by perinatally infected adolescents…
The experiences and needs of healthcare professionals facing perinatal death: A scoping review
BACKGROUND: Globally, perinatal death is on a decline. However, its impact on the healthcare profession is huge. The existing literature focuses on examining perinatal death from parents' perspectives and patient death from the perspectives of nurses and a few…
The intersection of fetal palliative care and fetal surgery: Addressing mortality and quality of life
Over the last few decades, the fields of fetal surgery and maternal-fetal medicine have developed interventions aimed at modifying severe diseases in utero. Innovations in fetal approaches to congenital diaphragmatic hernia and myelomeningocele have shown cons…
The role of palliative care in critical congenital heart disease
Patients with critical congenital heart disease are exposed to significant lifetime morbidity and mortality. Prenatal diagnosis can provide opportunities for anticipatory co-management of patients between palliative subspecialists and the cardiac care team. Th…
Who tells a mother her baby has died? Communication and staff presence during stillbirth delivery and early infant death
OBJECTIVE: Perinatal loss (stillbirth or early infant death) is often a sudden, unexpected event for families. We evaluated who communicates the loss to the parents and who is there for support at the delivery or death. STUDY DESIGN: We conducted a mail survey…
"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…
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…
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…
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…
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…
Cause of Death of Infants and Children in the Intensive Care Unit: Parents' Recall vs Chart Review
BACKGROUND: More than 55 000 children die annually in the United States, most in neonatal and pediatric intensive care units. Because of the stress and emotional turmoil of the deaths, the children's parents have difficulty comprehending information.
OBJECTIVE…
Compassion fatigue, burnout and compassion satisfaction in neonatologists in the US
OBJECTIVE: Compassion fatigue (CF) is distress experienced by caregivers from ongoing contact with patients who are suffering. Burnout (BO) is occupational stress directly related to dissonance between job demands and available resources. Compassion satisfacti…
Death talk: Basic linguistic rules and communication in perinatal and paediatric end-of-life discussions
Objective: This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory. Methods: Grice's Cooperative Principle and associated maxims, which enable effective communi…
Delivery room deaths of extremely preterm babies: an observational study
OBJECTIVE: Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual manag…