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 2751–2775 of 4332 publications
The COVID-19 pandemic: A rapid global response for children with cancer from SIOP, COG, SIOP-E, SIOP-PODC, IPSO, PROS, CCI, and St Jude Global
The COVID-19 pandemic is one of the most serious global challenges to delivering affordable and equitable treatment to children with cancer we have witnessed in the last few decades. This Special Report aims to summarize general principles for continuing multi…
The dynamic of the supply of pediatric palliative care: a multiple case study
The objective was to analyze the dynamic involving the supply of palliative care for eligible children from the perspective of health professionals and families. A qualitative exploratory multiple case study was performed. This was a cross-section of data from…
The Effect of FAmily-CEntered (FACE(®)) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families
Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE(®)) pACP intervention on families' anx…
The Effect of Theraplay on Prolonged Grief and Post-Traumatic Stress Disorder in Bereaved Siblings of Children with Cancer: A Preliminary Study
Background: Death of any of siblings is an overwhelming, severe, and prolonged challenge in children development process and is a major risk factor for psychiatric disorders in childhood and later. Interventions for bereaved families following a child’s death …
The Evolutionary Nature of Parent-Provider Relationships at Child's End of Life With Cancer
Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their be…
The Experiences of Bereaved Parents After the Loss of a Child to Cancer: A Qualitative Metasynthesis
This study aims to synthesize qualitative evidence about the bereavement experience of parents following the death of a child due to cancer. A qualitative metasynthesis was conducted from searching five databases. The search identified 650 articles that were i…
The fragile spirituality of parents whose children died in the pediatric intensive care unit
Spiritual care is recognized as a relevant dimension of health care. In the context of pediatric palliative end-of-life care, spirituality entails more than adhering to a spiritual worldview or religion. Interviews with parents whose critically ill child died …
The grief ritual of extracting and donating human milk after perinatal loss
Perinatal loss is a major life crisis involving multiple losses, including the loss of future hopes and dreams, of being pregnant, and of self-esteem, to name a few. In the present study I focus on mothers who experienced perinatal loss and chose to extract an…
The Impact of the Coronavirus Pandemic on Pediatric Palliative Care Team Structures, Services, and Care Delivery
Objectives: Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Methods: Cross-sectional online su…
The "lactation after infant death (AID) framework": a guide for online health information provision about lactation after stillbirth and infant death
This article collated and critically reviewed international evidence-based lactation and bereavement information to devise a comprehensive framework on the diverse options for lactation management after stillbirth and infant death by outlining the development …
The Marital Implications of Bereavement: Child Death and Intimate Partner Violence in West and Central Africa
In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13 West and Cen…
The need for education as a primary vehicle for improving paediatric palliative care (PPC) in a small island developing state (SIDS): Results of a qualitative exploration
Objective: To explore the perceptions and experiences of paediatric palliative care (PPC) among healthcare providers (HCPs) providing care at the sole tertiary healthcare facility in the SIDS of Barbados. Method(s): Sampling was purposive. Twelve participants …
The Neonatal Comfort Care Program: Origin and Growth Over 10 Years
The objective of perinatal palliative care is to provide holistic and comprehensive health care services to women who are anticipating the birth of a neonate diagnosed prenatally with a life-limiting condition and to continue supportive interventions for the m…
The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: A conversation analytic study
BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to study health…
The Photographs of Meaning Program for Pediatric Palliative Caregivers and Its Impact on Meaning, Well-Being, and Perceived Social Support
Background: Caring for a child or adolescent with palliative care needs can significantly influence the physical, mental, financial, and social well-being of caregivers. Due to this multifaceted impact, there is a demand for evidence-based support that meets t…
The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (…
Therapeutic Alliance Between Bereaved Parents and Physicians in the PICU
OBJECTIVES: Therapeutic alliance is the collaborative bond that develops between patients/families and healthcare providers. Our objective is to determine the extent of therapeutic alliance bereaved parents perceive to have occurred with their child's physicia…
The Role of Palliative Care in Caring for the Families of Patients With COVID-19
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for patients' loved on…
The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review
BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches …
The Use of Concurrent Home Hospice for Pediatric Heart Failure Patients Awaiting Heart Transplant on Milrinone and/or Ventricular Assist Device
Purpose: Pediatric patients (pt) awaiting heart transplantation (HTX) are among the most fragile patients, even more so when on continuous milrinone infusion or ventricular assist device (VAD). These pt are often in the hospital for very long periods of time r…
The use of telemedicine for home-based palliative care for children with serious illness: a scoping review
CONTEXT: There is potential value to home-based palliative care for children with serious illness delivered via telemedicine (TM HBPC). Evidence to guide optimal design and delivery of TM HBPC is urgently needed. OBJECTIVES: To explore the existing literature …
The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.
AIMS AND OBJECTIVES: To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD)., BACKGROUND: There is a growing interest in understanding the experiences of fathers of children with I…
"This is the worst that has happened to me in 86 years": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease
Purpose: Pediatric palliative care focuses mainly on the children suffering from a life-limiting disease, but always includes parents and siblings. However, grandparents are also often highly involved in caring for the child and require additional attention. T…
Toward an Understanding of Advance Care Planning in Children With Medical Complexity
BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need …
Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child
Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their c…