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 1–25 of 4332 publications
12 years of specialized pediatric palliative inpatient care: description of patients' characteristics
BackgroundPediatric Palliative Care (PPC) patients represent a highly heterogeneous population. Depending on the specific needs of the child and their family, PPC is provided at different levels, ranging from a basic PPC approach to highly specialized PPC in t…
A call for equity-informed pediatric palliative care in Canada
Infants, children, and youth with serious illness, and their families continue to face inequities in access to pediatric palliative care across Canada. This paper explores what it means to take an equity-informed approach within this field and why such a shift…
Actual and Preferred Location of Death for Children Known to a Palliative Care Service
This study aimed to establish the frequency and congruence between preferred and actual locations of expected pediatric deaths and to identify associated factors. A retrospective review of death review forms and medical records was conducted in two pediatric p…
Addressing Rehabilitation Needs in Pediatric Palliative Care: The Role of Occupational Therapy
Aims
Children with life-limiting illnesses face physical, cognitive, and emotional challenges that restrict their activities of daily living. Although these needs require a holistic approach, rehabilitation services, particularly occupational therapy, are ofte…
A Life Worth Sustaining? Bestowed Worth and Pediatric Care
When parents request life‐sustaining treatments for children who suffer from profound neurocognitive disabilities or are at the end of life, the typical ethics advice for clinicians is to accommodate the request. It can be unclear what interests such children …
A mixed-methods systematic review of interventions for parents during and after neonatal end of life in the neonatal intensive care unit
BACKGROUND: Parents of newborns at the end of life or after death require support to cope with the situation. AIM: This mixed-methods systematic review analyses various interventions designed to support parents in the neonatal intensive care unit. METHOD(S): A…
A Mother's Voice: The Construction of Maternal Identity Following Perinatal Loss
Background: Maternal identity, a mother's internalized view of self as mother, has not been studied in relation to perinatal loss. This study aimed to investigate how women construct a sense of maternal identity after the loss of a baby. Methods: We interviewe…
An exploratory study of the feasibility and acceptability of a digital storytelling intervention in paediatric palliative care in Ireland
Background Children with life-limiting or life-threatening conditions and their families face significant psychosocial challenges. While digital storytelling is an established memory-making intervention in the U.S., its adaptation and implementation within Iri…
A qualitative study exploring the pros and cons of universal pediatric palliative care referral at diagnosis for children with cancer
BACKGROUND: Early integration of pediatric palliative care (PPC) offers significant benefits for children with cancer, yet referrals often occur late in the child's cancer trajectory. OBJECTIVES: As part of a larger project looking at barriers and facilitators…
A qualitative study of Israeli parents’ experiences of child’s end-of-life care in a hospital setting
Background
Past research has revealed some of the emotional challenges parents face during their child’s end-of-life (EOL). However, the lived experiences of parents during this period, in pediatric palliative care, remain insufficiently studied and understood…
Assessing caregiver needs of critically-ill children with non-cancer diagnoses: a qualitative study
The experience of having a child in the PICU can be emotionally and psychologically overwhelming for families leading to many challenges.
Objectives: To identify and explore the psychosocial needs of families of critically-ill pediatric patients with non-canc…
Assessing the feasibility of use and content validity of ICECAP-CPM with bereaved family members of young people who died from serious illness: a UK think-aloud study
Background: The ICECAP-Close Person Measure (CPM) is a self-complete
measure developed for use in economic evaluation to capture capability
outcomes for those close to individuals at the end of life. Its
appropriateness for use with close persons of young peop…
Assessing the palliative care needs of children with cancer and their families in tertiary care centres in India: A multicentre observational study
Background: Children with cancer face a significant physical and psychosocial burden, highlighting the need for paediatric palliative care (PPC). Global estimates indicate that over 21 million children require PPC. However, in low- and middle-income countries …
Assessment of quality of life, grief, and psychosocial need among bereaved caregivers of children with cancer
Cancer is the leading disease-related cause of death for children in the United States; however, limited data exists on caregivers’ needs and evidence-based bereavement interventions are lacking. This is a cross-sectional study of primary caregivers of childre…
Attitudes and Needs of Health Care Providers Toward Artificial Intelligence-Assisted Pediatric Palliative Care: Mixed Methods Study
Background: While artificial intelligence's (AI's) transformative potential in health care is widely acknowledged, its application in highly sensitive, humanistic domains like pediatric palliative care (PPC) remains largely unexplored. Objective(s): This study…
Barriers to Palliative Care for Terminally Ill Children in a Developing Country Cancer Hospital: A Qualitative Study
Introduction
Pediatric palliative care (PPC) aims to improve the quality of life for children with life-limiting illnesses and support their families by addressing physical, psychological, social, and spiritual needs. Globally, significant barriers to PPC deli…
Because we care: Exploring care and well-being with siblings of children with life-limiting conditions through philosophical inquiry
The experiences of siblings of children with life-limiting conditions have received increasing attention in recent years. However, their conceptualisation of well-being and care has received limited attention. This article shares findings from a project with a…
Before birth and beyond: Advance care planning in perinatal and neonatal palliative care - A scoping review
Background: Advance care planning is a core component of Palliative Care, yet how it is organized and used in practice remains variably described.
Aim: To map how advance care planning is put into practice within Perinatal/Neonatal Palliative Care and identif…
Being There: Danish Nurses' Lived Experiences of Companionship With Families in Home-Based Paediatric Palliative Care in Regional Settings
Background
Paediatric palliative care (PPC) is a relatively new field in many countries, including Denmark, where regional home‐based PPC teams were established between 2015 and 2016. While research on PPC is growing, the lived experiences of nurses providing …
Bereaved Parents' Narratives of Their Child Who Died of Cancer: A Qualitative Study
BACKGROUND AND OBJECTIVES: Humans use storytelling to create meaning from suffering, including after the death of a child. The elicitation of and response to stories remains underused in medicine, and in particular, within parental bereavement. Thus, we sought…
Bereaved Parents' Perspectives on Quality Pediatric End‐of‐Life Care: A Scoping Review
Background
Pediatric end-of-life care profoundly impacts families, yet existing reviews on bereaved parents' experiences lack methodological rigor and comprehensive synthesis. Identifying key quality indicators from parents' perspectives is essential for impro…
Bereavement Counsellors' Experiences Supporting the Families of Deceased Children Within a German Bereavement Network– A Qualitative Interview Study
Background: The "Bereavement Network Lower Saxony" (BNLS) provides professional bereavement support to families grieving for a child. The present study aimed at exploring the experiences of BNLS bereavement counsellors in providing bereavement support to affec…
Bereavement Groups for Parents Who Have Lost a Child: A Qualitative Study of Parental Experiences in a Danish Context
Background: Bereavement support for families experiencing the loss of a child is a crucial aspect of Specialized Paediatric Palliative Care (SPPC). As an offering of SPPC, bereavement groups have the potential to provide meaningful support. Limited research, h…
Bereavement in paediatric oncology: programme evaluation
Objectives: The death of a child from cancer is a devastating event with long-term psychological and social consequences for parents. While bereavement support is increasingly recognised as a standard of care in paediatric oncology, structured programmes remai…
Big Thoughts in Little Jars: Memory Days for Families Where a Child has Died
The Life Force community paediatric palliative care team offers support to children and young people with complex health needs and their families. The team supports them during their end-of life period, as well as bereavement support after a child has died. Th…
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