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 2526–2550 of 4332 publications
Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review
BACKGROUND: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often avoid or d…
Factors associated with place of death for children in South Yorkshire: a retrospective cohort study
OBJECTIVES: Place of death (POD) is considered a key quality indicator for adult end of-life care, but paediatric evidence is limited. Data from Child Death Overview Panel (CDOP) databases provides an opportunity to describe trends in POD as regional paediatri…
Factors Associated With the Location of Expected Pediatric Deaths in the Palliative Care Context
Early planning and knowing which factors to consider when planning the location of death (LOD) of a palliative child, may help minimize the burden of hasty decision-making in the future, and may provide families with a sense of control. The current paper revie…
Factors During a Child's Illness Are Associated With Levels of Prolonged Grief Symptoms in Bereaved Mothers and Fathers
PURPOSE: Previous research shows that bereaved parents are at an increased risk for intense and prolonged grief responses. To offer effective support to parents during a child's cancer treatment and after their child's death, more knowledge is needed about fac…
Factors influencing nurse retention within children's palliative care
Retention of staff presents major challenges within children's palliative care; this has substantial implications for children, families and the nursing workforce. To address this, a programme was undertaken that provided pathways of professional development f…
Family attitudes toward genomic sequencing in children with cardiac disease
Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to determine how …
Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination
OBJECTIVE: To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). METHODS: From July 2018 to July 2019, family caregivers of CMC c…
Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences
Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and …
Family Conferences in Prenatal Palliative Care
Background: Fetal malformations are diagnosed prenatally in nearly 3% of pregnancies, and ~1.2% are major malformations. After prenatal diagnosis, it is imperative to consider families' values and to support their decision-making process. Prenatal palliative c…
Family experiences with palliative care for children at home: a systematic literature review
BACKGROUND: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in …
Family meetings in paediatric palliative care: an integrative review
OBJECTIVE: Our aim was to synthesise the available evidence surrounding the structure, processes and outcomes of family meetings in the paediatric palliative care literature. METHOD(S): We undertook an integrative literature review informed by the Preferred Re…
Feasibility and Acceptability of Recruiting Very Young Hospitalized Children Receiving Palliative Care to an Integrative Therapy Study (S743)
Objectives: * Discuss whether the Reiki intervention was feasible to implement with this population of very young hospitalized children receiving palliative care. * Discuss why parents thought the Reiki intervention was helpful to their child. Original Researc…
Feasibility and Acceptability of Reiki Therapy for Children Receiving Palliative Care in the Home
Reiki is often used but not well studied in children. Yet, this gentle, light-touch therapy promotes relaxation and is appropriate for those receiving palliative care. This quasi-experimental pre-post mixed-methods 1-group pilot study examined the feasibility …
Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the …
First pediatric organ donation after circulatory determination of death in Singapore: Facing challenges in the absence of a local practice guideline
Pediatric organ donation represents only a low proportion of overall organ donation in many parts of world, unable to match the needs for pediatric organ transplantation. Pediatric organ donation after circulatory determination of death (DCD) is increasingly e…
Fostering Vicarious Resilience for Perinatal Palliative Care Professionals
Background: The demands on healthcare professionals caring for families grappling with a life-limiting condition in an unborn or newly born child can be overwhelming. Clinicians working in emergency/trauma, hospice, and pediatric settings are already at high r…
Gastrostomy tube insertion in children with developmental or acquired disorders: a register-based study
Aim: To describe trends in gastrostomy tube insertion in children with developmental or acquired disorders in Sweden and assess their demographic characteristics. Method(s): Children aged 0 to 18 years with gastrostomy tube insertions recorded between 1998 and…
Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity
IMPORTANCE: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management, and reprodu…
Getting a Seat at the Table: An Iterative Development Process to Improve Available Benchmark Data for Pediatric Palliative Care Programs (S778)
Objectives: * Describe a longitudinal, iterative, and cross-organizational design process. * Describe pediatric palliative care program structure and process measurement. * Create additional opportunities to expand the benchmark data available for Pediatric Ho…
“Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine
Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Par…
"Good-Parent Beliefs": Research, Concept, and Clinical Practice
Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the good-parent belie…
GPs' role in caring for children and young people with life-limiting conditions: a retrospective cohort study
Background GPs are rarely actively involved in healthcare provision for children and young people (CYP) with life-limiting conditions (LLCs). This raises problems when these children develop minor illness or require management of other chronic diseases. Aim To…
Grief among Neonatal Intensive Care Nurses
BACKGROUND: Nurses working in the high-stress environment of the neonatal intensive care unit (NICU) are at high risk of experiencing grief after death of a baby. DESIGN: Using a quantitative cross-sectional design, a convenience sample of nurses working in a …
Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)
Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS) is importa…
Healing the Hearts of Bereaved Parents: Impact of Legacy Artwork on Grief in Pediatric Oncology
CONTEXT: Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children …