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 1176–1200 of 4332 publications
Understanding PICU Mortality and Family Bereavement: A Singlr- Canter Qualitative Study
INTRODUCTION: Pediatric mortality is an often underestimated and overlooked figure but has significant impact on providers and families. University Hospitals Rainbow Babies and Children has launched a program to identify factors surrounding pediatric mortality…
“Understanding why she had to leave me”: The roles of religion and spirituality in narratives of parents grieving the loss of a child to cancer
Religion and spirituality often influence how people experience illness, death, and grief. The roles of religion and spirituality for parents who have lost a child to cancer remain underexplored. This study aimed to describe how cancer-bereaved parents talk ab…
Use of Cancer-Directed therapy at the end of life among adolescents and young adults
Background: Adolescents and young adults frequently receive chemotherapy near death. We know less about the use of targeted agents and immunotherapy or trends over time.
Methods: We conducted a retrospective cohort study of 1836 adolescents and young adults wi…
Utility of do-not-resuscitate orders for critically ill infants in the NICU
Objective: To better understand the value of DNR orders for critically ill infants in the NICU.
Methods: A prospective mixed-methods approach was utilized including chart review of infants who died in a regional NICU over a twenty-six-month period and surveys…
Utilization of a prenatal palliative care consultation pathway for congenital heart disease
Background: A large Midwestern hospital has no consistent process for prenatal integration of palliative care for parents carrying a fetus diagnosed with complex congenital heart disease. The palliative care team is typically consulted postnatally when infants…
Utilization of Palliative Radiation in Pediatric Oncology Patients During the End-of-Life (EOL)
Background: Suffering at the end-of-life (EOL) can impact the perception of a "good death" and ultimately affect bereavement for families of children with cancer. Palliative radiation (pXRT) is a tool that can address pain, mitigate suffering and improve quali…
Utilization of the Keeping Hope Possible Toolkit with parents of children with life limiting and life threatening illnesses during the COVID-19 pandemic: Exploring pediatric nurses and allied healthcare provider opinions
BACKGROUND: For families with children diagnosed with complex illnesses, the COVID-19 pandemic added many challenges. In order to mitigate inevitable disruptions in pediatric care settings, caregivers may need added supports and resources. The Keeping Hope Pos…
Utilizing the Metaverse to Provide Innovative Psychosocial Support for Pediatric, Adolescent, and Young Adult Patients with Rare Cancer
This study investigated the potential of the metaverse in providing psychological support for pediatric and AYA cancer patients, with a focus on those with rare cancers. The research involved ten cancer patients and survivors from four distinct regions in Japa…
Virtual Bereavement Support Program in a Children's Hospice Care Center During COVID-19 Pandemic and Beyond
In light of the COVID-19 pandemic, a pediatric hospice in Ottawa, Ontario, implemented a Virtual Bereavement Group Program, necessitating a reorganization of care delivery during the global crisis. This paper outlines the program and assesses the feedback of f…
Virtual Support for Bereaved Parents: Acceptability, Feasibility, and Preliminary Efficacy of HOPE Group
Abstract
Introduction: Hospital-based supports for families following the death of a child are rare. Virtual interventions may address key barriers to providing bereavement care, but little is known about their acceptability, feasibility, and efficacy. Methods…
Voices of experience: insights from Dutch parents on periviability guidelines and personalisation
OBJECTIVE: To investigate the perspectives of experienced parents regarding guidelines and personalisation for managing imminent extremely premature births (22-26 weeks gestational age (GA)) . The study examined four scenarios: no guideline, a guideline based …
"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities
Purpose: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pe…
“We Have Learned to Speak with Our Eyes”: Reflections of the Pediatric Palliative Care Process on Family Life
Objective: This study was conducted to examine in detail the experiences regarding the care process of family members providing pediatric palliative care. Method: A qualitative research method was adopted for the study. The reason for choosing this method was …
"We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care"-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens
Abstract
Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018, th…
"We were made to mourn": A meta-ethnographic synthesis of living through the loss of a child to cancer for Latinx families in the United States
Latinx children with cancer in the United States (US) are more than 50% more likely to die of their cancer compared to non-Latinx White children. Despite this disproportionate likelihood, little is known about the grief experiences of Latinx populations in the…
"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition
BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves…
What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders
Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. …
What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis
Abstract
Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual d…
What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change
There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care fo…
When a Child Dies: Racialized Father's Experiences of Objectification During Hospital Care
Understanding the meaning of loss for racialized immigrant fathers and addressing their experiences in a culturally competent manner is important in an increasingly ethnoculturally diverse country like Canada. Culture, customs and rituals influence fathers' gr…
"Who Has the Relationship?": Caring for a Shared Population of Children with Medical Complexity
Background: Many academic pediatric centers care for children with medical complexity (CMC) through established complex care and palliative care programs. There are little prior data investigating best practices for collaboration between these two subspecialti…
Who, What, Where, and How? The State of Family Science in Pediatric Palliative Care
Context: Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused interventions that en…
"Why Are we Giving up on my Brother?"-The Unmet Needs of the Adolescent Facing End-of-Life Care in a Sibling
Adolescence is a challenging time at baseline, and a sibling receiving end-of-life care can alter an adolescent's life irrevocably. It is imperative for the medical team to understand the unique needs and perspectives of such an adolescent sibling. This in tur…
WORKLOAD AND PATIENT EXPERIENCE DATA ON THE COMPLEX HEALTHCARE TRANSITION SUPPORT PATHWAY: A TERTIARY CHILDREN'S HOSPITAL EXPERIENCE
ObjectivesPalliative care is an essential component of national health systems and should be available to all people irrespective of age.1Despite this, a large proportion of children and young people (children) worldwide who require palliative care do not rece…
Work-related quality of life in professionals involved in pediatric palliative care: a repeated cross-sectional comparative effectiveness study
Background: Working in pediatric palliative care (PPC) impacts healthcare and allied professionals' work-related quality of life (QoL). Professionals who lack specific PPC training but who regularly provide services to the affected children have articulated th…