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 301–325 of 560 publications
Initiating technology dependence to sustain a child's life: a systematic review of reasons
BACKGROUND: Decision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as…
Integrative Review of Emotional Care Following Perinatal Loss
Emotional care is an important part of the holistic labor and should be considered when providing care to people affected by perinatal losses. To synthesize the findings from recently published scientific evidence on the emotional care needed following perinat…
Long-Term Follow-Up of Legacy Services Offered by Children's Hospitals in the United States
Background: Our 2012 survey of providers described legacy services offered at children's hospitals nationwide. Since then, the science related to legacy interventions has advanced, resulting in increased recognition of the importance of legacy services. Yet, l…
Medications to manage infant pain, distress and end-of-life symptoms in the immediate postpartum period
INTRODUCTION: Perinatal palliative care (PnPC) is a growing field where healthcare providers from multiple disciplines are supporting families and providing holistic care for their babies with life-limiting illnesses. It is important to have an approach that i…
Neonatal and perinatal palliative care pathway: A tertiary neonatal unit approach
A lack of well-structured guideline or care pathway results in inadequate, inconsistent and fragmented palliative care (PC) for babies and their families. The impact on the families could be emotionally and psychologically distressing. Not all neonatal units h…
Neonatal donation: are newborns too young to be recognized?
Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a lack of aw…
Neonatal Nurses' Perceptions of Palliative Care in the Neonatal Intensive Care Unit
Purpose: Neonatal palliative care is widely endorsed as an essential aspect of neonatal intensive care unit (NICU) practice, yet inconsistencies in its use continue to exist. We examined neonatal nurses' perceptions of barriers and facilitators to palliative c…
Neuropalliative Care for Neonates
Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and is …
Nursing interventions for perinatal bereavement care in neonatal intensive care units: A scoping review
BACKGROUND: Despite technological advances and specialist training of neonatal teams, perinatal deaths still occur. Such events are traumatic experiences for the parents and increase the risk of pathological grieving. Nursing is one of the main sources of supp…
Outcomes following perinatal palliative care consultation: a retrospective review
Objective: To inform clinical practice by describing a model of perinatal palliative care delivery within a fully staffed fetal health center (FHC) inside a freestanding children's hospital. Study design: The team conducted a retrospective chart review of the …
Oxford Textbook of Palliative Care for Children
The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at the end of …
Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries
OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on self-repo…
Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU
CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved …
Parents' experiences of care offered after stillbirth: An international online survey of high and middle-income countries
BACKGROUND: Stillbirth, the death of a baby before birth, is associated with significant psychological and social consequences that can be mitigated by respectful and supportive bereavement care. The absence of high-level evidence to support the broad scope of…
Perinatal palliative care: a dedicated care pathway
OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and E…
Perinatal Palliative Care: Cultural, Spiritual, and Religious Considerations for Parents-What Clinicians Need to Know
For perinatal palliative care (PPC) to be truly holistic, it is imperative that clinicians are conversant in the cultural, spiritual and religious needs of parents. That cultural, spiritual and religious needs for parents should be sensitively attended to are …
Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions
Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service pr…
Postponed Withholding: Balanced Decision-Making at the Margins of Viability
Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support into an ethical dilemma. Shared decision-making with parents has g…
Potential Heart, Liver, and Kidney Donation after Circulatory Determination of Death in a Neonatal Intensive Care Unit
BACKGROUND: Pediatric organ donation after circulatory determination of death (DCD) has increased in recent years; however, there are few data reporting the number of neonatal potential DCD organ donors and no Canadian-specific reports. OBJECTIVE: The main obj…
Provider concordance regarding elements of goals-of-care discussions in neonatal intensive care
Clinicians may struggle to discuss goals of care with parents in the Neonatal Intensive Care Unit (NICU) and may view key elements of such conversations differently. We previously described the relationship between components of goals-of-care discussions and c…
Providing Palliative Care to Neonates With Anencephaly in the Home Setting
Parents who choose to carry a pregnancy complicated by a life-limiting congenital anomaly such as anencephaly may give birth to a live neonate and be discharged home. Very little guidance is available to health care professionals providing palliative care in t…
Something must happen before first breath
BACKGROUND: Definition and concept of the 'beginning of human life' are weakened by co-existing contrasting hypotheses based on humanistic or religious beliefs rather than scientific foundations. This plethora of conceptually distant views have important commo…
Swiss neonatal caregivers express diverging views on parental involvement in shared decision-making for extremely premature infants
AIM: Due to scarce available national data, this study assessed current attitudes of neonatal caregivers regarding decisions on life-sustaining interventions, and their views on parents' aptitude to express their infant's best interest in shared decision-makin…
The butterfly pathway: Supporting families following the antenatal diagnosis of a life-limiting condition in a neonatal intensive care unit setting
Background: Perinatal palliative care pathways are highlighted as tools to improve care and achieve consistency for families facing a life-limiting diagnosis. There are inherent diagnostic and prognostic uncertainties associated with such conditions.This multi…
The Mother Baby Comfort Care Pathway: The Development of a Rooming-In-Based Perinatal Palliative Care Program
BACKGROUND: Traditionally, the provision of comfort care and support during the dying process for infants born with life-limiting diagnoses has occurred in the neonatal intensive care unit (NICU). A major goal for the families of these infants is often the opp…