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 26–50 of 56 publications
End-of-Life Healthcare Service Needs Among Children With Neurological Conditions: A Latent Class Analysis
BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature on concur…
Moving and Handling Children After Death: An Inductive Thematic Analysis of the Factors That Influence Decision Making by Children's Hospice Staff
Hospices for children and adolescents in the United Kingdom provide care to the bodies of deceased children in specially designed chilled bedrooms called "cool rooms." In an effort to develop resources to support hospice practitioners to provide this specialis…
Nursing interventions for perinatal bereavement care in neonatal intensive care units: A scoping review
BACKGROUND: Despite technological advances and specialist training of neonatal teams, perinatal deaths still occur. Such events are traumatic experiences for the parents and increase the risk of pathological grieving. Nursing is one of the main sources of supp…
Parent-led strategies supporting personal well-being when caring for a child with a life-limiting condition: A scoping review
The objectives of this review were to identify strategies initiated by parents of children with life-limiting conditions to support their own well-being at home and to describe the impact of these strategies on parental well-being. A systematic scoping review …
Pediatric palliative care from nursing and PharmD perspectives
Background: This research aimed to survey a sample of nursing students and Doctor of Pharmacy (PharmD) students in Jordan about their knowledge of pediatric palliative care (PPC) in the context of treating terminally ill children. Method(s): A descriptive, cro…
Synthesis of health promotion concepts in children's palliative care
BACKGROUND: Palliative care improves the health of children with a life-limiting condition and appears to draw implicitly on concepts shared with a model of health promotion. However, to date there has been no scrutiny about how this relationship may shape und…
Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal
PURPOSE: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. DESIGN AND METHODS: A purposive sample of 10 parents of inp…
A Concept Analysis of Neonatal Palliative Care in Nursing: Introducing a Dimensional Analysis
Despite the increasing need for neonatal palliative care, it is not adequately implemented in practice. This analysis aimed to clarify the dimension of the neonatal palliative care concept to increase understanding of the concept to give more insight into clin…
A systematic review exploring palliative care for families who are forced migrants
AIMS: To explore the palliative care experiences of forced migrant children, families, and healthcare professionals (HCPs) highlighting successes, challenges, and associated practice implications. DESIGN: Systematic literature review. DATA SOURCES: The followi…
Death of an Infant: Accessing the Voices of Bereaved Mothers to Create Healing
AIMS AND OBJECTIVES: To describe the health challenge for mothers whose infants have died and approaches and resources they used to manage the loss. BACKGROUND: The death of an infant is a devastating experience for families. Bereaved mothers have higher rates…
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…
Preparing Nurses for Palliative Care in the NICU
Background: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of care.Purpose: …
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 …
Good death term in the aspect of paediatric palliative care nursing
Introduction: When faced with serious illness and the possibility of a child's death, a family experiences many uncertainties and traumatic experiences. The expected normal order of life is significantly disrupted, and a diagnosis of a life-threatening or life…
Hospice nurses request paediatric-specific educational resources and training programs to improve care for children and families in the community: Qualitative data analysis from a population-level survey
BACKGROUND: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are …
The effect of web-based pediatric palliative care education on the palliative care knowledge level and practices of nursing students
PURPOSE: This study is aimed to investigate the effect of web-based pediatric palliative care education on nursing students' knowledge level and practices related to palliative care.
Development of symptom assessment service at a children's hospice
Background and aims High symptom burden has been recognised in children with life-limiting conditions (LLC) and symptom assessment and management is a core component of children's palliative care (CPC). A previous audit highlighted a high prevalence of problem…
Palliative Care: Opportunities for Nursing
Ayda G. Nambayan, PhD, RN is the Training Consultant for The Ruth Foundation for Palliative and Hospice Care. Prior to this, she held various positions as a Consultant for Advanced Education and Training at Makati Medical Center, Philippines; a curriculum and …
The unique grief of grandparents
The article discusses a study which showed that grandparents have to be
Barriers of palliative care in neonatal intensive care units: Attitude of neonatal nurses in southeast Iran
Objective: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses’ attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study thus conduct…
Independent non-medical prescribing in children's hospices in the UK: a practice snapshot
Background: Non-medical prescribing is well established within the British health service, with increasing numbers of nurses practicing within children's hospices. Aim: To identify the context of non-medical prescribing in children's hospices in the UK, focusi…
Maternal mourning: pain and coping with the loss of a baby
Objective: to understand how mothers experienced the experience of their babies' mourning. Methods: this is a qualitative study, conducted with nine mothers who experienced the loss of a child under one year. Semi-structured interviews were conducted, and the …
Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child
Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and with their f…
Effectiveness of Pediatric Palliative Care Education on Pediatric Clinicians
A lack of knowledge and skills in pediatric palliative care may create hesitation in caring for children with serious life-threatening conditions and their families. Our research examined the effectiveness of pediatric palliative care training for pediatric cl…
Exploring the spiritual needs of families with seriously ill children
Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for nurses in paedi…