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 101–125 of 4332 publications
Factors involved in posttraumatic growth in mothers experiencing fetal and infant death
Factors associated with posttraumatic growth (PTG) are investigated in mothers who have suffered fetal or infant death. Mothers (N = 66) completed the Posttraumatic Growth Inventory (PTGI; Tedeschi & Calhoun, 1996), the Core Beliefs Inventory (CBI; Cann et al.…
Family experiences of paediatric palliative care during hospital-at-home: a systematic review
Purpose This systematic review explores the family experiences of hospital-at-home (HaH) care for children in paediatric palliative care (PPC). While the HaH model is increasingly promoted as a safe and cost-effective alternative to hospital-based care, partic…
Father’s experience of fetal death: A secondary analysis
Following a fetal death, fathers have reported feeling a lack of support and minimizing their outward expression of grief. Further, in the period after pregnancy loss, there is evidence that non-birthing parents experience trauma, stress, anxiety, depression, …
Fathers' grief in action
A child's death is a traumatic life-altering event, which significantly affects parents' mental health and well-being. Literature provides insights on parents' grief; however, less is known about how fathers cope with grief due to underrepresentation in resear…
Feasibility, Acceptability, and Impact of Using Virtual Reality Social Support for Adolescents Living with Serious Illness
Background:Adolescents living with serious illness have unique developmental and psychosocial needs that require special consideration and care. This population faces an increased risk of isolation, depression, and anxiety. Virtual reality (VR) may provide an …
Feasibility and Acceptability of a Digital Storytelling Intervention in Paediatric Palliative Care: A Small-Scale Pilot Study in Ireland
Background Children with life-limiting or life-threatening conditions and their families face significant psychosocial challenges. While digital storytelling is an established memory-making intervention in the U.S., its cultural adaptation and implementation w…
Feasibility and acceptability of prenatal parental palliative care in congenital heart disease: a pilot study
Background
Ductal dependent congenital heart disease (ddCHD) is associated with significant parental anxiety, yet palliative care (PC) support is rarely offered in the prenatal period. While prior studies have evaluated PC postnatally, little is known about fe…
Feasibility and Acceptability of Remote Music Therapy for Cognitively Impaired Children Receiving Palliative/Complex Care and Their Families
BACKGROUND: Music therapy is one palliative care approach to improve physical and psychological outcomes for cognitively impaired children with medical complexity (CMC), their parents, and families. However, CMC are often excluded because some specialist servi…
Feasibility of Implementing an Electronic Patient-Reported Outcome-Based Digital Health Platform in Pediatric Oncology and Palliative Care: Insights From the MyPal4Kids Multicenter Observational Study
Background - Digital health solutions that incorporate electronic patient-reported outcomes (ePROs) hold promise for enhancing communication and patient engagement in pediatric oncology and palliative care. While ePROs are increasingly used in adult population…
Finding comfort in complexity: The role of palliative care in children with leukodystrophy
Introduction: Children with leukodystrophy experience progressive physical and cognitive decline, which can lead to suffering. Palliative care consultation can help with multimodal symptom management, building trust with medical teams, and managing advanced ca…
Formal and informal support strategies among bereaved parents and children: Met and unmet needs of families following the death of a child
Experiencing the death of a child is devastating to parents and surviving siblings, who must navigate complicated grief processes, both individually and as a family unit, and need robust support systems to cope. The current study involved in-depth interviews w…
Fostering cultural humility in perinatal palliative care. An interpretative qualitative study from the United Kingdom
Research shows marked disparities in perinatal deaths across population groups in the UK. The aim of this study was to understand how perinatal palliative care is experienced by parents from culturally-diverse backgrounds and to understand the challenges facin…
Foundations of Social Work Practice in Paediatric Palliative Care From the Perspective of the Patient, the Family and the Multidisciplinary Team: A Systematic Review
Paediatric palliative care is a complex and painful reality for children, young people and their families, and the professional team caring for them. Social workers are essential in these teams, providing emotional and care support to patients and their famili…
From the C-Suite to the Living Room Couch: Making the Case for Home-Based Pediatric Palliative Care
There is growing evidence of the positive impact that specialized pediatric palliative care can have on children with serious medical illnesses, including (but not limited to) increased quality of life, improved symptom burden, increased completion of advance …
From Triage to Outcome: How ED Parameters and Comorbidities Shape Pediatric Critical Illness Prognosis
Objective: To describe the characteristics of children presenting with red-code triage to a tertiary Pediatric Emergency Department (PED) and to evaluate the association between variables at PED presentation and hospitalization outcomes. Methods: This retrospe…
Geographic Distance Between Perinatal and Pediatric Palliative Care Services and Implications for Practice Standards
Background: Practice standards recommend early integration of perinatal and pediatric palliative care (PC) with seamless transitions across settings. Little is known about the proximity between these services nationally. Methods: This study utilized data from …
"Golden" moments and more in grief talk: Healthcare professionals' approaches to discussing loss and grief with parents of children with severe neurological impairment
Background: Experiential studies on healthcare professionals' approaches to loss and grief discussions with parents of children with severe neurological impairment are needed to understand grief experiences of this emerging population Aim: This study aimed to …
Healthcare professionals' confidence in providing perinatal bereavement care for women and their families in low- and middle-income countries
Background/Aims: Perinatal death has a high burden in low- and middle-income countries. Inadequate care and support from healthcare professionals is a major factor in negative experiences and impacts parents' adjustment after stillbirth and neonatal death. Und…
Healthcare provider’s perceptions of family values when making end-of-life care decisions for their children: developing and implementing a survey tool
Background: Healthcare providers help families navigate end-of-life care decisions in the neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU); however, limited studies exist regarding what values providers perceive families utilize whe…
Healthcare Providers’ Practices and Perspectives on Discussing Life Expectancy with Patients with Duchenne Muscular Dystrophy and their Caregivers
Background There is very little published research on how life expectancy discussions are conducted when related to patients with DMD (Duchenne Muscular Dystrophy). As altered life expectancy plays a large role in overall life planning in DMD patients and care…
Health Professionals' Perceptions of End-of-Life Care in the PICU: Single-Center Survey in Spain
Objectives: - To explore healthcare professionals' perceptions of end-of-life care in the PICU and identify unmet needs and modifiable barriers. Design(s): - Post hoc analysis of quality of care staff surveys. Setting(s): - Tertiary university hospital PICU in…
Help Is a Phone Call Away: A 24-Hour Nurse-Led Pediatric Hospice Clinical Care Line
Background:
Children with life-limiting conditions often have complex care needs, and their caregivers require expert clinical support after-hours and over weekends to support care at home.
Objectives:
This quality improvement initiative examined usage pattern…
Hope and Uncertainty in Prognostic Discussions
OBJECTIVE: Prognostic communication is vital to high-quality care for children with serious illness. Yet clinicians often struggle to balance honesty with preservation of hope—especially when prognosis is poor or uncertain. Patients and parents cite hope and u…
Hope in Pediatric Palliative Care: A Systematic Review
Context: Previous studies and reviews in adult patients have shown that hope is an important coping mechanism in patients with serious health problems. Although there are individual studies in pediatric patients, there is a lack of a systematic review of how h…
Hospital organisation and healthcare providers' barriers in the management of fetuses and newborns affected by life-limiting or life-threatening conditions in Italy: a national survey
The prevalence of children affected by life-limiting or life-threatening conditions has consistently increased over the last decade. Communicating to parents that their baby is affected by such conditions is always difficult. The aim of this study was to inves…