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 1201–1225 of 4332 publications
Accessibility and challenges of perinatal palliative care in Poland
Background: This article examines the legal status and level of accessibility to perinatal palliative care (PPC) in Poland, with a focus on the number of services provided and the number of parents receiving PPC services. Material(s) and Method(s): The desk re…
A Comparison of Hospice Care Utilization Between Rural and Urban Children in Appalachia: A Geographic Information Systems Analysis
Long driving times from hospice providers to patients lead to poor quality of care, which may exacerbate in rural and highly isolated areas of Appalachia. This study aimed to investigate geographic patterns of pediatric hospice care across Appalachia. Using pe…
Addressing 10 Myths About Pediatric Palliative Care
With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity an…
A global assessment of access to pediatric palliative care for children with cancer in resource-constrained settings
Background: Pediatric palliative care reduces suffering, improves communication, and enhances quality of life for children with complex disease, especially children with cancer. Despite a disproportionate burden of pediatric cancer in resource-constrained sett…
"A Good Death": Role of Shared Decision Making and Palliative Care in Children with Cardiac Disease
We read with interest the article titled “A “Good Death” for Children with Cardiac Disease” by Moynihan et al. [1] The authors found that parents were less likely to perceive a “good death” when there was a lack of advanced care planning, poor pain control, su…
A Grounded Theory Study on the Dynamics of Parental Grief during the Children's End of Life
AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. METHODS: A groun…
Allowing Relationships to Unfold: Consult Reason and Topics Discussed in Initial and Subsequent Palliative Care Visits Among Children Who Died From Relapsed/Refractory Cancer
Background: Children with relapsed/refractory cancer have a myriad of palliative care needs. While pediatric oncology clinicians meet many of these needs, studies suggest that these children often have distressing symptoms and that families feel unprepared for…
Ameliorating Caregiver Burden in the Pediatric Palliative Population Utilizing a Psychophysiological Intervention
Background: Providing long-term care for a family member can be a source of severe stress for the untrained caregiver, and is known to cause depression, poor overall health, and lower quality of life for the caregiver. This burden may lead to poorer outcomes f…
A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and le…
An agenda to develop Pediatric Palliative care programs to serve children with life-threatening and life-limiting conditions in the Gulf Cooperation Council countries
Medical advances have increased the number of children living with life-threatening/life-limiting illnesses worldwide, including in Gulf Cooperation Council (GCC) countries. Pediatric palliative care (PPC) is a relatively young subspecialty that cares for chil…
An Analysis of John Bowlby’s Mourning Stages in Family Art Therapy as a Way to Help the Family Mourning Process
Purpose: Pediatric palliative care is a rapidly developing multidisciplinary approach that supports children with life-limiting conditions and their families. However, there is limited evidence on how to effectively support bereaved parents and siblings. The p…
An Audit Analysing The Standard Of Patient Care And Service Provision In Sppc At A Tertiary Hospital And Hospice
Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve quality of…
An innovative hybrid palliative care fellowship program: empowering pediatricians and enhancing care for children in resource-limited settings
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative care in South…
A One Day Paediatric Palliative Care Study Day Improves Skills
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated. The day wa…
Application of Instrumental Variable Analysis in Pediatric End-of-Life Research: A Case Study
Instrumental variable analysis (IVA) has been widely used in many fields, including health care, to determine the comparative effectiveness of a treatment, intervention, or policy. However, its application in pediatric end-of-life care research has been limite…
Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data
Abstract
This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1…
A psychological experience assessment protocol of parent caregivers in paediatric palliative care
Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence…
A qualitative exploration of parental perspectives on quality of care for children with serious illnesses
Introduction: Being responsive to end-users is essential to good care. Limited in-depth exploration of parental perspectives on care received by children over the course of serious illness has hindered the development of process measures to evaluate quality of…
A qualitative phenomenological study of nurses' experiences in caring for infants and children with life-limiting and life-threatening conditions
Abstract
Purpose: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions.
Design and methods: A qualitative phenomenological study was conducted, collecting data through deep interviews. Sampl…
A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive.
Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a neonatal …
A Seat at the Table: Professional Competencies Define Roles and Value of Psychologists in Pediatric Palliative Care (TH110B)
Outcomes:
1. Describe the development of essential competencies for psychologists in pediatric palliative care (PPC)
2. Discuss psychologists' roles in PPC, research, and education and the value of inclusion as members of the multidisciplinary PPC team
Psychol…
A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers
Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are still few stru…