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 1726–1750 of 4332 publications
Inclusion of children with disabilities in qualitative health research: A scoping review
Background Children with disabilities have the right to participate in health research so their priorities, needs, and experiences are included. Health research based primarily on adult report risks misrepresenting children with disabilities and their needs, a…
Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis
Background: The Infant Maternal Perinatal Advanced Care Team program was launched in 2018 to enhance perinatal palliative care services in Toronto, Canada. Methods: Pilot patients were (1) carrying a fetus with a life-limiting diagnosis and (2) receiving care …
Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment
BACKGROUND AND OBJECTIVES: Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with uncertain implicat…
Informing Simulation Design: A Qualitative Phenomenological Study of the Experiences of Bereaved Parents and Actors
INTRODUCTION: Simulations, which represent reality, are effective in pediatric healthcare communication skills education and training. Parents are increasingly engaged in simulation development, particularly for authentic character development, to help achieve…
'I no longer feel alone': meeting the needs of bereaved grandparents through a children's hospice support group
BACKGROUND: Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. AIM: To explore how a hospice-based bereavement support group supported grandparents in…
Insight into the content of and experiences with follow-up conversations with bereaved parents in paediatrics: A systematic review
AIM: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content of follow-…
Interdisciplinary Perspectives on an Embedded Palliative Oncology Model in Pediatric Cancer Care
Outcomes: 1. Compare and contrast perspectives of multidisciplinary providers in regard to an embedded model of pediatric palliative care (PC) in routine cancer care 2. Propose an embedded PC model of care in the learner's own practice setting Original Researc…
International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS
CONTEXT: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC. OBJECTIVES: An international group of exper…
interRAI Pediatric Home Care (PEDS-HC) Assessment Tool: Evaluating Ontario Healthcare Workers’ Experience
High quality pediatric homecare requires comprehensive assessment of the needs, supports, and health care challenges of children with special healthcare needs and their families. There is no standardized homecare assessment system to evaluate children’s clinic…
Is this as good as it gets? Implications of an asymptotic mortality decline and approaching the nadir in pediatric intensive care
Despite advances in medicine, some children will always die; a decline in pediatric intensive care unit (PICU) mortality to zero will never be achieved. The mortality decline is correspondingly asymptotic, yet we remain preoccupied with mortality outcomes. Are…
"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT (Paediatr…
'IT'S BRILLIANT! IT'S WORKING! IT'S NEEDED!' A HOSPICE SHORT BREAK INNOVATION FOR YOUNG ADULTS
Background More young adults with life-limiting conditions are surviving into adulthood needing adult palliative care (Gibson- Smith, Jarvis, Norman et al., 2021). The evidence on appropriate service models is sparse (Clark & Fasciano, 2015. Am J Hosp Palliat …
'It Was a Shared Duty': Bereaved Fathers' Perspectives, Experiences and Practices in Relation to their Partner's Lactation after Infant Death
This exploratory study targets a significant gap in the lactation and bereavement literature by exploring bereaved fathers' experiences, perspectives and practices in relation to their partner's lactation after stillbirth, neonatal or infant death. Semi-struct…
'It was like an airbag, it cushioned the blow': A multi-site qualitative study of bereaved parents' experiences of using cooling facilities
BACKGROUND: Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children's hospices offer parents the opportunity to extend this period by using cooling facilities (i.e. co…
LEARNING DISABILITY NURSES IN PALLIATIVE CARE - A NARRATIVE ON DIVERSIFYING THE WORKFORCE AND THE CASELOAD
There have been multiple recent reports regarding the inequalities in palliative and end of life care for people with learning disabilities; but little if any attention paid to the role of learning disability nurses working in palliative care. Children's hospi…
'Learning to Hold a Paradox': A Narrative Review of How Ambiguous Loss and Disenfranchised Grief Affects Children in Care
Separation and loss characterise a child's experience in care, yet losses in the care-experienced population have rarely been studied as a possible source of trauma or as events that may justify a grief response. A literature search of five databases yielded 5…
Libyan cancer patients at King Hussein Cancer Center for more than a decade, the current situation, and a future vision
BACKGROUND: Since 2011, the Libyan civil war crisis had affected all dimensions of livelihood including cancer care. This has resulted in a steady incline in the number of Libyan patients with cancer seeking oncologic care and management in Tunisia, Egypt and …
Limitation of Futile Therapy in the Opinion of Nursing Staff Employed in Polish Hospitals-Results of a Cross-Sectional Study
The debate on limiting futile therapy in the aspect of End of Life (EoL) care has been going on in Poland over the last decade. The growing demand for EoL care resulting from the aging of societies corresponds to the expectation of a satisfactory quality of li…
Listening to Parents of Children With Cancer-Between Life and its end
This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured interviews i…
Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal Death
Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and families have a…
LOCAL PAEDIATRIC DEATH DATA FOR BARNET 2015- 2021: WHICH CHILDREN ARE POTENTIALLY ELIGIBLE FOR HOSPICE CARE?
Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at their time…
Location of death and hospice use in children with cancer varies by type of health insurance
BACKGROUND: Disparities in end-of-life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization. METHODS: We used MarketScan - a nationally repre…
Location of end-of-life care of children with cancer: A systematic review of parent experiences
Objective: To synthesize existing qualitative research exploring the experiences of parents caring for children with cancer during the end-of-life phase, and the factors that influence parental decision-making when choosing the location of end-of-life care and…
Locus-of-care disparities in end-of-life care intensity among adolescents and young adults with cancer: A population-based study using the IMPACT cohort
BACKGROUND: Adolescents and young adults (AYAs) with cancer may experience elevated rates of high-intensity end-of-life (HI-EOL) care. Locus-of-care (LOC) disparities (pediatric vs adult) in AYA end-of-life (EOL) care are unstudied.
METHODS: A decedent populat…