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 3951–3975 of 4332 publications
Ethics, Emotions, and the Skills of Talking About Progressing Disease With Terminally Ill Adolescents: A Review
Importance: For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help to facilit…
Evaluating Hospice and Palliative Medicine Education in Pediatric Training Programs
BACKGROUND: Hospice and Palliative Medicine (HPM) competencies are of growing importance in training general pediatricians and pediatric sub-specialists. The Accreditation Council for Graduate Medical Education (ACGME) emphasized pediatric trainees should unde…
Evaluating the reliability and validity of a new pediatric palliative care needs assessment tool
Objectives * Describe categories of need faced by parents and patients in pediatric palliative care. * Describe unmet needs faced by parents and patients in pediatric palliative care. * Describe potential uses for a needs assessment tool in the delivery of ped…
Evaluation of the need for a paediatric palliative care service in the west of Scotland
Aims To assess how many children access palliative care services across NHS Greater Glasgow, their specific needs, if these are addressed by current services, and whether a dedicated palliative care service is required. Methods A semi-structured survey, contai…
Evidence for Implementation Strategies to Provide Palliative Care in the Neonatal Intensive Care Unit
BACKGROUND: Palliative care is a holistic framework that is designed to improve quality of life by identifying and treating distressing symptoms of life-threatening or complex conditions. Neonatal palliative care (NPC) has potential benefits for parents, staff…
Examining the Experiences of Fathers of Children with a Life-Limiting Illness
Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been …
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…
Experiences in palliative home care of infants with life-limiting conditions
UNLABELLED: The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based p…
Experiences of Pediatric Oncology Patients and Their Parents at End of Life: A Systematic Review
Improvement in pediatric palliative and end-of-life care has been identified as an ongoing research priority. The child and parent experience provides valuable information to guide how health care professionals can improve the transition to end of life and the…
Exploring NICU Nurses, Affective Responses to End-of-Life Care
BACKGROUND: The survival rate for infants born with life-threatening problems has improved greatly over the last few decades. Nevertheless, infants still die in neonatal intensive care units (NICUs) every day. Despite existing standards of care, some aspects o…
Exploring spiritual needs of children facing life-threatening illness
Objectives * Summarize the current state of our understanding of spiritual needs of children facing lifethreatening illness. * Learn basic skills for being a spiritual generalist and how to begin exploring spiritual needs of children facing life-threatening il…
Exploring the spiritual needs of families with seriously ill children
Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for nurses in paedi…
Extremely premature birth and the choice of neonatal intensive care versus palliative comfort care: an 18-year single-center experience
OBJECTIVE: Review all live births 22 0/7 through 26 6/7 weeks gestation born 1996 through 2013 at our institution to describe the decision process and immediate outcomes of palliative comfort care (PCC) versus neonatal intensive care (NICU) and whether any sig…
Facebook advertising for pediatric oncology research recruitment
Objectives * Describe Facebook advertising recruitment methods. * Describe results from our Facebook advertising campaign. Original Research Background. Social media is one strategy that may improve diversity and sample sizes in pediatric palliative care resea…
Factors influencing the uptake of neonatal bereavement support services - Findings from two tertiary neonatal centres in the UK
BACKGROUND: Research on perinatal bereavement services is limited. The aim of the study was to compare the uptake of bereavement support services between two tertiary neonatal units (NNU), and to investigate influencing factors. METHOD: The medical and bereave…
Families' priorities in life-limiting illness: improving quality with online empowerment
OBJECTIVE: Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging. INTERVENTION: MyQuality is an online tool that enables families to choose and monit…
Family and healthcare professionals' perceptions of a pilot hospice at home programme for children: a qualitative study
BACKGROUND: Parents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the experiences of fa…
Family Conferences in the Neonatal ICU: Observation of Communication Dynamics and Contributions
OBJECTIVES: Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train clinicians in key co…
Family-oriented palliative care: Parents' perspective and experience
Palliative care is needed for children with neurodegenerative and progressive neuromuscular diseases, inborn genetic (e.g., chromosomal disorders, deletion syndromes) or metabolic disorders, as well as for children with early brain lesions which can decrease l…
Feasibility and acceptability of a reiki therapy intervention for children receiving palliative care
Background: Children are receptive to complementary therapies such as music, massage, and distraction for symptom management. Reiki therapy is ideal for children; particularly those receiving palliative care because it is a gentle, light touch therapy that pro…
Feasibility of Early Palliative Care Consultation for Children With High-Risk Malignancies
BACKGROUND: Children with cancer suffer significant morbidity throughout therapy and often face an uncertain prognosis. Because palliative care teams can provide an additional layer of support with symptom management and communication, we conducted a prospecti…
Feasibility of Group Intervention for Bereaved Siblings after Pediatric Cancer Death
This study evaluated the feasibility (acceptability, recruitment, retention rates, treatment fidelity and outcomes measures) of implementing a manualized group intervention for bereaved siblings after pediatric cancer death. A convenience sample of 10 siblings…
Fifteen-minute consultation: Perinatal palliative care
Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic multidisciplina…