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 1301–1325 of 4332 publications
Ethical Considerations in Critically Ill Neonatal and Pediatric Patients
Summary The care of critically ill neonates and pediatric patients can be particularly emotionally and ethically challenging. Emerging evidence suggests that we can improve the patient, family, and care team experience in the critical care setting through a be…
Ethics at the end of life in the newborn intensive care unit: Conversations and decisions
The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue life susta…
Ethics Roundtable: How Much is Too Much?
How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation with a di…
Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients
OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research invest…
Evaluating a Pediatric Palliative Care Elective Rotation Through Prompted Reflective Writing and Aligning with Competencies
Background: Hospice and palliative medicine is important in the education of pediatric residents. Little is known about if and how residents' learnings during a pediatric palliative care elective fulfill core competencies and Pediatrics subcompetencies as set …
Evaluating quality of life in pediatric palliative care: a cross-sectional analysis of children's and parents' perspectives
The patient's perspective is an essential component of understanding the individual experience of suffering in children with palliative needs, but it is a perspective that is often overlooked. The aim of this study was to compare the perception of quality of l…
Evaluation of learning transfer after a perinatal/neonatal palliative care virtual training course
BACKGROUND: The success of a training can be determined by the degree of learning transfer. To address a gap in educational offerings during the pandemic, an interdisciplinary team developed and offered a 3-day virtual course, called Next Level Perinatal Palli…
Evaluation of service user-led workshops in children's palliative care education
Children's nurses report feeling unprepared when caring for children with life-limiting conditions and their families, while the value of including service users in the provision of nursing education is increasingly recognised. This small-scale service evaluat…
Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the …
"Everybody Needs to Talk About Their Child": A Descriptive Phenomenological Study of Bereaved Parents' Experiences in Digital Storytelling
Digital Storytelling (DS) is a narrative intervention that supports participants' ability to find meaning in their life experiences - in this case, bereavement after child death. Thirteen (N = 13) bereaved parents engaged in a DS workshop in which they created…
Existential experiences and perceptions of death among children with terminal cancer: An interpretative qualitative study
BACKGROUND: Exploring the experience and understanding of death in children with terminal cancer is important to provide them with appropriate care. However, most studies have focused on the perspectives of parents and healthcare professionals, and few have fo…
Experiences of healthcare personnel with death in the neonatal intensive care unit: a systematic review of qualitative studies
OBJECTIVE: To synthesise evidence from qualitative studies on the experiences of healthcare personnel (HCP) in the neonatal intensive care unit (NICU) caring for dying neonates. METHODS: We conducted a systematic search, in accordance with Preferred Reporting …
Experiences of medical traumatic stress in parents of children with medical complexity
Background and Objectives Parents of children with medical complexity (CMC) experience high levels of stress and adverse mental health outcomes. Pediatric medical traumatic stress (PMTS) could be an important contributor that has not yet been explored. PMTS de…
Experiences of Mothers Who Relinquished Their Child for Adoption in Pakistan: A Qualitative Study
The literature suggests long-term consequences and lack of support for birthmothers following relinquishment of their child for adoption (Memarnia in Listening to the experience of birth mothers whose children have been taken into care or adopted, 2014). But t…
Experiences with the end-of-life decision-making process in children with cancer, their parents, and healthcare professionals: A systematic review and meta-ethnography
BACKGROUND: Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their social inter…
Exploration of the Strategies of Iranian Nurses in Providing Palliative Care to Children with Cancer: A Qualitative Study
AIM: This study aimed to explain the strategies of Iranian nurses in providing palliative care to children with cancer. METHOD: This study is a qualitative research with an approach to the conventional content analysis. The main participants were nine nurses w…
Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study
Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants…
Exploring the impact of healthcare workers communication with women who have experienced stillbirth in Malawi, Tanzania and Zambia. A grounded theory study
Communication and interaction with healthcare workers at the time of stillbirth remain in parents' long-term memories and impact on emotional and psychological well-being. Cultural attitudes and norms influence how stillbirth is acknowledged and discussed in s…
Exploring the Palliative Care Needs of Children in Refugee Settlements in Uganda
Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided by all hea…
Exploring the Use of Arts-Based Interventions and Research Methods in Families of Seriously Ill Children: A Scoping Review
Family care is essential to pediatric nursing practice, as the entire family is affected by childhood illness. However, little is known about art making for therapeutic purposes and how art is used to better understand families' experiences. Our purpose was to…
External second opinions: building trust between health professionals and families
In medicine, external second opinions are frequently sought to inform decisions around a patient's proposed course of treatment. However, they are also sought in more challenging circumstances such as when disagreement arises between the healthcare team and th…
Facilitators and barriers perceptions to early referral to pediatric palliative care perceived
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of chi…
Factors Associated With Mode of Separation for People With Palliative Diagnoses With Preference for Home Death Receiving Care From a Nurse-Led End of Life (Palliative Extended and Care at Home) Program
Palliative Extended and Care at Home (PEACH) is a rapid response nurse-led package of care mobilized for palliative care patients who have an expressed preference to die at home. This study aimed to identify the demographic and clinical predictors of home deat…
Factors influencing parents' choice of palliative treatment goals for children with relapsed or refractory neuroblastoma: A multi-site longitudinal survey study
BACKGROUND: Many parents of children with advanced cancer report curative goals and continue intensive therapies that can compound symptoms and suffering. Factors that influence parents to choose palliation as the primary treatment goal are not well understood…