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 2551–2575 of 4332 publications
Healthcare interventions improving and reducing quality of life in children at the end of life: a systematic review
Background: Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at the end of…
Health Care Professionals' Awareness of a Child's Impending Death
Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured inter…
Health care professionals' experiences with pre-loss care in pediatrics; goals, strategies, obstacles and facilitators
CONTEXT: Although parents experience grief when confronted with their child's deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into the health care professionals' (HCPs) intentions and strategie…
Healthcare professionals' perceptions and experiences of using a cold cot following the loss of a baby: a qualitative study in maternity and neonatal units in the UK
BACKGROUND: Best practice in perinatal bereavement care suggests offering parents the opportunity to spend time with their baby. Cold cots facilitate this purpose by reducing the deterioration of the body and evidence indicates their wide availability in mater…
Healthcare utilization among children and young people with life-limiting conditions: Exploring palliative care needs using National Health Insurance claims data
Paediatric palliative care (PPC) is regarded as standard care for children and young people (CYP) with life-limiting conditions (LLCs). There is a lack of knowledge about the rate of CYP with LLCs, hampering the development of PPC. This retrospective study aim…
Healthcare utilization and costs of pediatric home mechanical ventilation in Canada
BACKGROUND: Children using home mechanical ventilation (HMV) live at home with better quality of life, despite financial burden for their family. Previous studies of healthcare utilization and costs have not considered public and private expenditures, includin…
Health of mothers of children with a life-limiting condition: A protocol for comparative cohort study using the Clinical Practice Research Datalink
Introduction There are now nearly 50 000 children with a life-limiting or life-threatening condition in the UK. These include conditions where there is no reasonable hope of cure and from which they will die, as well as conditions for which curative treatment …
Health professionals' experiences of grief associated with the death of pediatric patients: a systematic review
OBJECTIVE: The objective of this review was to synthesize the experiences of health professionals who have experienced grief as a result of a pediatric patient dying. INTRODUCTION: There has been some research into health professionals' grief experiences, but …
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based…
Home-based end of life care for children and their families - a systematic scoping review and narrative synthesis
PROBLEM: There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current internatio…
Home-Based Pediatric Palliative Care and Electronic Health: Systematic Mixed Methods Review
Background Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions.
Objective This study aimed to ide…
Home or hospital as the place of end-of-life care and death: A grounded theory study of parents' decision-making
BACKGROUND: While several studies have examined 'what' families want with regard to the place of a child's end-of-life care and death, few have explored 'how' parents reach a decision. AIMS: (1) to develop a model explaining how parents of a child with a life-…
Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey
BACKGROUND: Parents of children with complex medical needs describe an internal, personal definition of "trying to be a good parent" for their loved child. Gaps exist in the current "good parent concept" literature: (1) When the idea of "trying to be a good pa…
Hospital Practices for Parents Following Perinatal Loss
The aim of this study is to provide comprehensive and current information on hospital practices following perinatal death. The provinces with the highest number of hospitals in Turkey were selected for the study. To collect data, the questionnaire form of Cana…
How Do Children Die in PICUs Nowadays? A Multicenter Study From Spain
OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses. DESIGN: Prospective multicenter observational study. SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI Pediatrica-…
Human Touch via Touchscreen: Rural nurses' experiential perspectives on telehealth use in pediatric hospice care
CONTEXT: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts. OBJECTIVES: The objective of th…
‘I actually felt like I was a researcher myself.’ On involving children in the analysis of qualitative paediatric research in the Netherlands
Objectives To evaluate the feasibility of a new approach to paediatric research whereby we involved children in analysing qualitative data, and to reflect on the involvement process.Setting This was a single-centre, qualitative study in the Netherlands. It con…
Identification of adolescents and young adults' preferences and priorities for future cancer treatment using a novel decision-making tool
Background: Adolescents and young adults (AYAs) with cancer receive high-intensity care and experience significant symptoms at the end of life. As novel cancer-directed therapies increase, AYAs with advanced cancer may face multiple treatment options, each wit…
Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study
BACKGROUND: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. AIM: The study aimed…
Identifying the know-do gap in evidence-based neonatal care practices among informal health care providers-a cross-sectional study from Ujjain, India
BACKGROUND: More than a quarter of global neonatal deaths are reported from India, and a large proportion of these deaths are preventable. However, in the absence of robust public health care systems in several states in India, informal health care providers (…
If only I could turn back time-Regret in bereaved parents
INTRODUCTION: Regret about loss is one of the most intense types of regret experienced in life. Little is known about the bereavement regret of parents whose child has died of cancer. Although knowledge about parents' experiences after their child's death is v…
"If We Build It, Will They Come?" A Cohort Study of Family Utilization of a Pediatric-Specific Inpatient Hospice Facility (GP709)
Objectives: * Interpret results of this study relative to previous research. * Evaluate the benefits of a pediatric inpatient hospice facility. Importance: Pediatric-specific hospice facilities (PHFs) are gaining interest as an alternative for end-of-life care…
Impact of Caring for Terminally Ill Children on Physicians: A Systematic Scoping Review
INTRODUCTION: Caring for terminally ill children influences nurses' and allied health provider's quality of life, ability to provide personalized, dignified and empathetic care and even their concepts of personhood. In the absence of data this review utilizes …
Implementation of a Perinatal Hospice Program
BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also r…
Important situations that capture moral distress in paediatric oncology
BACKGROUND: The paediatric Moral Distress Scale-Revised (MDS-R) was previously translated and adapted to Swedish paediatric oncology. Cognitive interviews revealed five not captured situations among the 21 items, resulting in five added items: 22) Lack of time…