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 1576–1600 of 4332 publications
A Qualitative Study of Clinicians and Parents of Children with Severe Neurological Impairment on Tools to Support Family-Centered Care
Background: Children with severe neurological impairment (SNI) have complex conditions and require family-centered care, yet, this is challenging in the hospital.
Objective(s): To describe themes related to building parent-clinician rapport and to examine ways…
A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity
OBJECTIVE: To determine parental preferred language, terminology and approach after prenatal counseling for an anticipated extremely preterm delivery.
STUDY DESIGN: Pregnant persons (and their partners) admitted at 22 0/7-25 6/7 weeks' estimated gestation part…
A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?
Background: Children's palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family's preferred place, which may include home, hospital or hospice. Limited evidence on models of best practice for the …
A scale for the identification of the complex chronic pediatric patient (PedCom Scale): A pilot study
INTRODUCTION AND OBJECTIVES: The complex chronic condition (CCC) is an increasingly prevalent reality in pediatrics. However, having a CCC does not necessarily mean being a complex chronic patient (CCP). From this perspective, we developed an instrument (PedCo…
Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit
IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families…
Assessment of Long-term Psychological Outcomes after Pediatric Intensive Care Unit Admission: A Systematic Review and Meta-analysis
Importance: The pediatric intensive care unit (PICU) exposes children to stressful experiences with potential long-term psychological repercussions. However, current understanding of post-PICU psychological outcomes is incomplete. Objective(s): To systematical…
Attending to child agency in paediatric palliative care consultations: Adults' use of tag questions directed to the child
Children's agency in their own lives is increasingly recognised as important, including within paediatric health care. The issue of acknowledging child agency is complex in the context of paediatric palliative care, where children have serious and complex cond…
At the End of Life: Pediatric Palliative Care Can Make a Difference in Caring for the Child and Family
Background and Aims: WHO defines pediatric palliative care as the active total care of the child's body, mind and spirit, which also involves giving support to the family, the aim of this study is to describe the endof-life care of children with cancer during …
Attitudes Toward Neonatal Palliative Care Among Turkish Nurses and Physicians: A Comparative Cross-sectional Study
Few studies have examined and compared neonatal physicians' and nurses' attitudes toward palliative care. This comparative study sought to evaluate attitudes toward neonatal palliative care in neonatal nurses and physicians and identify associated facilitators…
A Venn diagram of vulnerability: The convergence of pediatric palliative care and child maltreatment a narrative review, and a focus on communication
Child maltreatment and end-of-life care independently represent two of the most emotion-laden and uncomfortable aspects of pediatric patient care. Their overlap can be uniquely distressing. This review explores ethical and legal principles in such cases and pr…
Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives
Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents the experi…
Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative study
BACKGROUND: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents dur…
Barriers to and Facilitators of Neonatal Palliative Care Among Neonatal Professionals in China
Objectives: This study investigated institutional and personal barriers to and facilitators of neonatal palliative care facing neonatal professionals in China. Methods: A cross-sectional questionnaire surveyed 231 neonatal clinicians employed in 5 neonatal int…
Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We performed a s…
Bereaved Parent Perspectives and Recommendations on Best Practices for Legacy Interventions
Context
Many pediatric hospitals offer legacy interventions for families to promote coping and support grief prior to and following the death of a child. Despite this practice, parent perceptions of the value of legacy activities are not well described, and be…
Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology
BACKGROUND: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education of oncolo…
Bereaved parents involvement in maternity hospital perinatal death review processes: ‘Nobody even thought to ask us anything’
Abstract Introduction The death of a baby is devastating for parents, families and staff involved. Involving bereaved parents in their baby's care and in the maternity hospital perinatal death review can help parents manage their bereavement and plan for the f…
Bereaved Parents' Perspective on Communication of Transition to Palliative Care in Pediatric Oncology - Hungarian Experience
Background and Aims: Transition to palliative care (PC) is a critical aspect of pediatric oncology requiring a high level of communication skills from doctors, which could be best judged by parents of children died in cancer. Our aim was to explore parents' pe…
Bereaved parents' perspectives on their child's end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study
Background: Paediatric Palliative Care (PPC) focuses on ensuring the best possible quality of life for the child and his/her family by extending beyond the physical domain into psychosocial and spiritual wellbeing. A deep understanding of what is important to …
Bereavement Support for Siblings after Neonatal Loss: an Online Survey of U.S. Training Centers
OBJECTIVE: The aim of this study was to examine bereavement support for siblings of patients who die in the neonatal intensive care unit (NICU) given the adverse effects of unprocessed grief and the paucity of information on children whose newborn siblings die…
"Between Wings of Hope and Fear": Muslim Parents' Experiences with the American Health Care System
Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performed a …
Cardiopulmonary resuscitation in pediatric patients under palliative home care - A multicenter retrospective study
Introduction: Patients under palliative home care have special needs for their end-of-life support, which in general does not automatically include cardiopulmonary resuscitation. However, emergency medical services (EMS) respond to emergencies in children unde…
Care after death in children's hospices: recommendations for moving and handling, and for managing physiological deterioration
BACKGROUND: Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but important …
Caregivers' perception of teenagers' dignity in end of life stages: A phenomenological study
Introduction: Maintaining patient dignity in a caregiving environment is one of the most important moral responsibilities for caregivers. Nonetheless, there are vulnerable groups, specifically teenagers, who in their final stages of life are prone to their dig…
Caregivers' perspectives on the social and physical environmental factors associated with the play of their children with palliative care needs: A Q methodology study
Children living with palliative care needs are less engaged in play, despite its importance in their lives. The environment may have a crucial role in supporting these children's play. Understanding the importance and impact of environmental factors on childre…