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 1551–1575 of 4332 publications
'You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end': A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition
BACKGROUND: Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. AIM: To increa…
"You're on a Rollercoaster, Just Hold On": The Lived Experience of the Dyad Following a Fetal Death
Purpose: Pregnancy and birth is often a joyous period for a dyad. In the instance of fetal death, however, dyads are met with a devastating loss of their child, the hope for the future, and the new reality of becoming a bereaved parent. The purpose of this qua…
Acceptability and feasibility of a pilot randomized controlled trial of Narrative e-Writing Intervention (NeW-I) for parent-caregivers of children with chronic life-threatening illnesses in Singapore.
BACKGROUND: Narrative e-Writing Intervention (NeW-I) is a novel psycho-socio-spiritual intervention which aims to bridge gaps in paediatric palliative care by providing anticipatory grief support to parent-caregivers who are looking after their child with a ch…
Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, othe…
Achieving Global Pediatric Palliative Care Equity—What We Have Yet to Learn
Injustice arises when equity is not a central consideration in health care interventions—a reality made more apparent during the COVID-19 pandemic. Pediatric palliative care is a proven intervention that enhances care and is associated with decreased suffering…
“A Child's Death Is Different”: Responding to the Needs, Preferences, and Challenges Shared by Hospice Nurses Caring for Dying Children in the Community (FR214)
Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes of mixed-m…
A Comparison of Young Adults With and Without Cancer in Concurrent Hospice Care: Implications for Transitioning to Adult Health Care
Purpose: Concurrent hospice care provides important end-of-life care for youth under 21 years. Those nearing 21 years must decide whether to shift to adult hospice or leave hospice for life-prolonging care. This decision may be challenging for young adults wit…
Acute and Posttraumatic Stress in Family Members of Children With a Prolonged Stay in a PICU: Secondary Analysis of a Randomized Trial
OBJECTIVES: To identify the prevalence of screening criteria for acute and posttraumatic stress disorders (PTSDs) and stress symptoms among family members of children in the PICU for more than 8 days and examine risk factors for stress symptoms. DESIGN: Second…
Addressing bias and disparities in periviable counseling and care
Addressing bias and disparities in counseling and care requires that we contend with dehumanizing attitudes, stereotypes, and beliefs that our society and profession holds towards people of color, broadly, and Black birthing people in particular. It also neces…
Admission factors associated with nutritional status deterioration and prolonged pediatric intensive care unit stay in critically ill children: PICU-ScREEN multicenter study
BACKGROUND: Early identification of patients in the pediatric intensive care unit (PICU) at risk of nutritional status (NS) deterioration and poor outcomes is desirable. We aimed to identify factors associated with NS deterioration and prolonged PICU stay.
MET…
Adolescent Health Series: Engagement with young people as partners in health research: Four case studies from Sub-Saharan Africa
Abstract Objectives Existing health services for young people (YP)(10?24 years), which are predominantly designed for but not with young people, often do not meet YP?s needs. The 2018 Global Consensus Statement on meaningful adolescent and youth engagement aff…
Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions
Background: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead to increas…
Advance care plan discussion among parents of children with cerebral palsy
Aim: To evaluate parental perception of advance care plan (ACP) discussions in families of Malaysian children with bilateral cerebral palsy (CP) classified in Gross Motor Function Classification System levels IV or V for (1) acceptance of the ACP discussion, (…
Advance care planning and the parental geographical background in pediatric palliative home care: a retrospective chart review.
The relevance to acknowledge the parental migration history in pediatric palliative care is widely recognized. However, its influence on integral parts of advance care planning (ACP) is unknown. In this non-interventional cohort study, we aimed at identifying …
Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review
Pediatric advance care planning (pACP) is an important strategy to support patient-centered care. It is known to be difficult, yet paramount, to involve the child in pACP while adjusting treatment to age and the corresponding stage of development. This systema…
A investigation into hope, self-efficacy, distress and uncertainty in parents who have a child with a life-threatening or life-limiting illness
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations with respec…
A Mother's Tears: Contemplating Black Grief
As we have traversed the last 2 years of the COVID-19 pandemic juxtaposed against an increased awakening to the realities of racial inequities in society and health care, the grief of Black individuals and communities has largely been underrecognized. This ref…
A multisite randomized controlled trial of an early palliative care intervention in children with advanced cancer: The PediQUEST Response Study Protocol
Background The Pediatric Quality of Life and Evaluation of Symptoms Technology Response to Pediatric Oncology Symptom Experience (PQ-Response) intervention aims to integrate specialized pediatric palliative care into the routine care of children, adolescents, …
A Narrative Review of Pediatric Respite Care Initiatives in the United States
Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objecti…
An Automatic Pediatric Palliative Care Consultation for Children Supported on Extracorporeal Membrane Oxygenation: A Survey of Perceived Benefits and Barriers
Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective(s): Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECM…
An international study of caregiver-reported burden and quality of life in metachromatic leukodystrophy
BACKGROUND: Metachromatic leukodystrophy (MLD) is an autosomal recessive lysosomal disorder caused by mutations in the arylsulfatase A gene. Until now, there has been little information on the burden of MLD on patients and their caregivers. This multinational …
An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial
BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to inc…
A Qualitative Study Into Parents' Experiences With Loss During Their Child's End-Of-Life: Enduring and Intrusions of Grief
Background/aims: Parents of children receiving palliative care experience incremental losses and feelings of grief. During the end-of-life (EOL), the dynamics of being confronted with the growing threat of losing their child while fulfilling parenthood gets mo…