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 26–50 of 560 publications
Identifying Key Areas to Improve Care for Families Around the Time of Stillbirth or Neonatal Death: A Survey of Maternity Services in Australia
This article focuses on assessing the alignment of Australian hospital-based maternity services’ practices following perinatal death—including stillbirth and neonatal death—with evidence-based recommendations and aspirational targets outlined in the Clinical P…
Impact of palliative care consultation on neonatal end-of-life care utilization
Background: Research evaluating the impact of pediatric palliative care (PPC) consultation on care utilization in the NICU is limited. Objectives: Describe the impact of PPC on care utilization during admission and end-of-life (EOL). Methods: Retrospective rev…
"It's the fear of the unknown" clinicians' perceptions on paediatric compassionate transport to preferred place of death: A qualitative descriptive study
Background
Compassionate transport is used to transfer dying neonates and children from hospital wards to their preferred place for death, such as home. For families, choice of where their child will die is important and meaningful. Yet the child’s physiologic…
Key practical aspects of perinatal palliative care: a scoping review mapping and grading their coverage in the literature
BACKGROUND: Despite growing recognition of the importance of perinatal palliative care (PnPC) as a comprehensive approach to supporting seriously ill fetuses or neonates and their families, its implementation in clinical practice remains nascent and heterogene…
Lactation During Perinatal Bereavement From the Perspective of Families and Support Providers: A Scoping Review
Background: Perinatal loss is a time of intense grief for affected parents. Due to lactation physiology, bereaved mothers still experience the onset of lactation and are left with milk but no child to feed. Aim: To explore what is known about the lactation exp…
Lived experiences of healthcare personnel in supporting parents around neonatal death: encounters, challenges and meaning
Objective: To explore healthcare personnel's (HCP) lived experiences of caring for dying newborns and supporting bereaved parents in neonatal intensive care unit (NICU), drawing on relational, ethical and organisational factors.
Design: Qualitative study usin…
Loss at a distance, fatherhood rewritten: Perinatal bereavement and subsequent cross-border surrogacy arrangements in gay couples and single fathers
Surrogacy is an increasingly used—yet unevenly accessible—pathway to parenthood for gay couples and single men. This qualitative study examined how fathers experience and navigate perinatal loss in cross-border surrogacy, and how they reenter surrogacy arrange…
Memory making during bereavement care following the death of a child: A survey exploring parental experiences
Background: Grief experienced by parents following the death of their child is profound and places them at a higher risk of adverse health outcomes. Memory making practices intend to provide families the tools to meaningfully adjust and make sense of a child's…
Midwifery practice in perinatal palliative care: A scoping review and conceptual framework
Background Perinatal palliative care (PPC) is a multidisciplinary, family-centred approach aimed at improving the quality of life and comfort of newborns with life-limiting conditions, and their families. Midwives can play a crucial role in supporting these pa…
Mind Yourself So You Can Mind Me; The Role of Parental Behaviour in Perinatal Death on the Surviving Sibling's Grief
Children's grief, in perinatal loss, can be misunderstood and overlooked. Parental behaviour while mourning infant loss and parental ability to respond to their own grief has a crucial role in the child's grief. This study aimed to explore parental behaviour a…
Model of interprofessional care for the newborn and family during neonatal death and dying: a multistage evaluation mixed methods study
An interprofessional care model is crucial to advancing the quality of integrated, patient-centered care, particularly in critical situations. The purpose of this study was to develop an interprofessional care model for newborns and their families experiencing…
Multimodal Pediatric Advance Care Planning Training for Neonatal Intensive Care Unit and Palliative Care Practitioners: Training, Self-Efficacy, and Practice
Introduction:
Pediatric advance care planning is an iterative process that supports families in sharing their values, hopes, and preferences for their child's future medical care. Advance care planning rarely occurs in the neonatal intensive care unit (NICU), …
Navigating birth plans: illuminating neonatal provider perspectives in prenatally diagnosed complex fetal anomalies
Background/objectives: Birth plans include preferences for neonatal care in prenatally diagnosed complex medical conditions. This study aimed to determine how neonatal providers interpret birth plans for those with prenatally diagnosed life-limiting conditions…
Neonatal Intensive Care Unit Nurses' End-of-Life Care Experience: Becoming a More Empathetic Professional Caregiver
Background:
Few studies have examined how empathy develops in neonatal intensive care units (NICUs) as nurses experience negative outcomes in end-of-life care delivery (eg, burnout, moral conflict, and psychological distress). Various characteristics of neonat…
Neonatal nurses' perceptions of providing palliative care in neonatal intensive care units in Saudi Arabia
There is limited literature on the perceptions and practices of nurses in Saudi Arabia related to neonatal palliative care (NPC). This study aimed to assess NPC perceptions and practices among female nurses in Saudi Arabia. This cross-sectional survey study wa…
Outcomes of patients with trisomy 13 and 18 in a center with a dedicated perinatal palliative care program
Introduction: The objective of this study is to assess outcomes of pregnancies complicated by trisomy 13(T13) or trisomy 18(T18) and infants with T13 and T18, who were managed in a center with a perinatal palliative care program. Methods: This is a single cent…
Palliative care in the neonatal intensive care unit: qualitative study of parent experiences
OBJECTIVES: To explore parents' experiences of palliative care in the neonatal intensive care unit (NICU) to inform and improve the delivery of family-centred palliative care. METHOD(S): This exploratory prospective qualitative study employed a pragmatic appro…
Parental experience of end-of-life care for their infant or child in the United Kingdom
Background
Evidence confirms that provision of end-of-life care for infants, children and young people varies across the United Kingdom, however it is not clear how this variation impacts children and their families.
Methods
This study aimed to assess parenta…
Parental experiences of perinatal loss, with a focus on hospice provision: A thematic analysis
OBJECTIVE: Perinatal palliative care (PPC) offers holistic support to families of babies with life-limiting conditions, addressing emotional, psychological, and practical needs alongside ensuring dignity for the baby. While there is growing evidence to support…
Parental hope in paediatric palliative care: a systematic review of the ethical issues in evidence-based literature
BACKGROUND: This systematic review aims to raise awareness of the concept of parental hope, which is distinct from the idea of agency - acting on behalf of someone else. Parental hope is an important factor in end-of-life care, particularly in light of recent …
Parents Value Shared Decision-Making and Sensitive Communication During End-of-Life Care in Neonatal Intensive Care: An Exploratory Study
Aim: To explore parents' needs during end-of-life decision-making and to understand their experiences in a neonatal intensive care unit (NICU) following the death of their child. Method(s): This observational, retrospective study was conducted in the NICU of a…
Perinatal and Neonatal Palliative Care: Challenges and Contextual Solutions in Low- and Middle-Income Countries
ABSTRACT - Purpose: - The purpose of this review was to explore the primary obstacles to providing comprehensive, family-centered palliative care during the perinatal and neonatal period, using insights from existing literature and clinical practice. Backgroun…
Pilot Study of a Bereavement Referral Program for Parents Following Perinatal Death
Context: Following a perinatal death, parents experience physical, psychological, social, and spiritual hardships, and may benefit from community-based support.
Objectives: Study a new Bereavement Referral Program (BRP) that connects parents to community-base…
Silences, voices and losses: maternal experience in communicating bad news in a neonatal Intensive Care Unit
This article aims to analyze the mothers' experience related to communication in the Neonatal Intensive Care Unit (NICU), within the context of palliative care, with an emphasis on the communication of bad news. This is a qualitative study using a narrative ap…
Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of Life
Rationale:
Ensuring high-quality end-of-life (EOL) care for neonatal and pediatric patients and their families in the ICU requires a comprehensive, evidence-based, multidisciplinary approach.
Objectives:
To develop and provide evidence-based recommendations f…