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 2801–2825 of 4332 publications
Variation in Pediatric Palliative Care Allocation Among Critically Ill Children in the United States
OBJECTIVES: The objectives are as follows: 1) estimate palliative care consult rates and trends among critically ill children and 2) characterize which children receive palliative care consults, including those meeting previously proposed ICU-specific palliati…
Variation In State Medicaid Implementation Of The ACA: The Case Of Concurrent Care For Children
More than 55,000 children die each year in the United States, and hospice is used for very few of them at the end of their lives. Nearly one-third of pediatric deaths are a result of chronic, complex conditions, and the majority of these children are enrolled …
Vulnerability and agency across treatment-seeking journeys for acutely ill children: how family members navigate complex healthcare before, during and after hospitalisation in a rural Kenyan setting
BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability …
"We Feel Like We Are in the Dark": A Population Level Qualitative Study of the Training and Support Needs of Hospice Nurses Caring for Children and Families in the Community (RP417)
Objectives: * Describe the evidence from a growing body of literature demonstrating the dearth of pediatric-focused training and resources for community hospice nurses, as well as the lack of comfort of community hospice nurses with providing pediatric care. *…
Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions
CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation experienc…
What do parents value regarding pediatric palliative and hospice care in the home setting?
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) famil…
When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories
BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed.…
When a child is sick: the role of social tourism in palliative and end-of-life care
Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered in children…
When Facing Hopeful and Hopeless Experiences: Using Snyder's Hope Theory to Understand Parents' Caregiving Experiences for Their Medically Complex Child
INTRODUCTION: An emerging subpopulation within pediatric chronic illness is children living with complex chronic conditions. Managing a child's complex chronic conditions can be emotionally taxing for parents. Many parents regard hope as a "life-sustaining and…
Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS)
BACKGROUND: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is…
Withholding or withdrawing life-sustaining treatment in extremely low gestational age neonates
OBJECTIVE: To identify sociodemographic and clinical factors associated with withholding or withdrawing life-sustaining treatment (WWLST) for extremely low gestational age neonates. DESIGN: Observational study of prospectively collected registry data from 19 N…
You are at rock bottom: A qualitative systematic review of the needs of bereaved parents as they journey through the death of their child to cancer
Problem Identification: This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses emotional, practical, informational, and m…
“You have made all the loving choices”: A qualitative study of physician “good parent” statements during Pediatric Intensive Care Unit care conferences
Title “You have made all the loving choices”: A qualitative study of physician “good parent” statements during Pediatric Intensive Care Unit care conferences Background Parents’ ideas about what it means to be a “good parent” to their seriously ill children in…
Accessibility, utilisation and acceptability of a county-based home care service for sick children in Sweden
BACKGROUND: Home care service (HCS) for sick children is a complex healthcare service, which can be organised in various models. Despite the possibility to support family everyday life, the accessibility and utilisation may still be limited. The aim of this st…
Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium
BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these condition…
Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)
Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for practice related …
Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review
Background:Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and li…
A conceptual model of barriers and facilitators to primary clinical teams requesting pediatric palliative care consultation based upon a narrative review
BACKGROUND: Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model…
A cross-sectional survey of services for young adults with life-limiting conditions making the transition from children's to adult services in Ireland
Background: Increasing numbers of young adults with life-limiting conditions are living into adulthood and consequently making the transition from children's to adult services. A poorly planned transition is associated with adverse outcomes such as non-adheren…
Addressing multidrug resistant pathogens in pediatric palliative care patients-the nurses point of view: A qualitative study
BACKGROUND: Multidrug resistant pathogens are a large-scale healthcare issue. In particular, children with life-limiting conditions have a significantly increased risk of multidrug resistant pathogen colonization. Official hygiene requirements recommend childr…
Advance Care Planning and Parent-Reported End-of-Life Outcomes in Children, Adolescents, and Young Adults With Complex Chronic Conditions
Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and adolescents with …
Advanced care planning five years on: an observational study of multi-centred service development for children with life-limiting conditions
BACKGROUND: Advanced planning for end of life care (EOLC) is an essential component of care for children with life-limiting and life threatening (LLLT) conditions. We report the findings of a follow-up study (R2) completed five years after the initial review (…
Advancing the science of outcome measurement in paediatric palliative care
BACKGROUND:: There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care in the scientific literature, and as a result there is not a tool to drive and evaluate care of children and young people. METHODS:: In…
African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study
Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear. This comparative mixed methods …