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 126–150 of 167 publications
Identifying and Quantifying Adolescent and Young Adult Patient Preferences in Cancer Care: Development of a Conjoint Analysis-Based Decision-Making Tool
Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these patients in decis…
It's All About Communication: A Mixed-Methods Approach to Collaboration Between Volunteers and Staff in Pediatric Palliative Care
BACKGROUND: Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and staff. AIM: Th…
Parental distress and desire for information regarding long-term implications of pediatric cancer treatment
BACKGROUND: Parents of children with cancer have unmet information needs regarding future limitations resulting from cancer or its treatment. Prior research has demonstrated that, in early care discussions, clinicians focus on the acute effects of therapy rath…
Sources of parental hope in pediatric oncology
BACKGROUND: Hope is a multidimensional concept that is important for all parents of children with cancer. However, most work has focused on advanced cancer and poor prognoses. We examined hopes of all parents of children with cancer longitudinally during the f…
The practice of mutual protection in the care of children with palliative care needs: A multiple qualitative case study approach from Jordan
PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. DESIGN AND METHODS: This study employed a qualitative case stu…
When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care?
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there r…
Affording opportunities to discuss deterioration in paediatric palliative care consultations: a conversation analytic study
OBJECTIVE: Discussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricte…
'Just gripping my heart and squeezing': Naming and explaining the emotional experience of receiving bad news in the paediatric oncology setting
OBJECTIVE: To explore recipients' perspectives on the range and origins of their emotional experiences during their 'bad news' consultations., METHODS: Participants were four bereaved families of children who had changed from active treatment to palliative car…
Parents' Perception of Their Relationship Following the Loss of a Child
It is known that if one partner wants to talk after the loss of a child, while the other does not, the less satisfied they are with the relationship. The aim of this study was to increase our understanding of parental relationships following the loss of a chil…
Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT
Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like careg…
Preparing Pediatric Healthcare Professionals for End-of-Life Care Discussions: An Exploratory Study
BACKGROUND: Preparedness to initiate end-of-life (EoL) discussions is a confronting and daunting task for all healthcare professionals. We conducted a group interview to explore healthcare professionals' experiences of preparing for EoL discussions with the pa…
Training Pediatric Fellows in Palliative Care: A Pilot Comparison of Simulation Training and Didactic Education
BACKGROUND: Pediatric fellows receive little palliative care (PC) education and have few opportunities to practice communication skills.
OBJECTIVE: In this pilot study, we assessed (1) the relative effectiveness of simulation-based versus didactic education, (…
Best Practice in Provider/Parent Interaction
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. An…
Communication During Palliative Care and End of Life: Perceptions of Experienced Pediatric Oncology Nurses
BACKGROUND: Communication between patients, families, and healthcare providers is a central component of end-of-life care. Nurse communication during palliative care (PC) and end of life (EOL) is a phenomenon with limited research. It is unclear how the level …
Early Integration of Palliative Care for Children with High-Risk Cancer and Their Families
Despite increasing data to support pediatric palliative care (PPC) as an integral component of high-quality care for children with life-threatening conditions and their families, timely integration of PPC is offered inconsistently to children with high-risk ca…
Exhaust All Measures: Ethical Issues in Pediatric End-of-Life Care
The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care de…
Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys
BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients …
'I have to live with the decisions I make': laying a foundation for decision making for children with life-limiting conditions and life-threatening illnesses
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we …
Measuring and communicating meaningful outcomes in neonatology: A family perspective
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3) clinical trials (whether a…
Perceptions of the Pediatric Hospice Experience among English- and Spanish-Speaking Families
OBJECTIVE: Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the hospice ex…