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 3876–3900 of 4332 publications
Aspects of palliative care in child neurology
Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or terminal conditi…
Assessment of the Spiritual Needs of Primary Caregivers of Children with Life-Limiting Illnesses Is Valuable Yet Inconsistently Performed in the Hospital
BACKGROUND: Religion and spirituality influence how many patients and families experience illness, but knowledge of the level of spiritual care provided to caregivers of pediatric patients within the hospital is limited. OBJECTIVE: We evaluated patient caregiv…
A study to investigate parental satisfaction with the allocation of respite care for their child by a children's hospice
Prior to this study the children's hospice had no evidence base to demonstrate parental satisfaction regarding the allocation of respite care for their child. The study explored the opinion of parents whose children received respite care at a children's hospic…
A survey of key opinion leaders on ethical resuscitation practices in 31 European Countries
BACKGROUND: Europe is a patchwork of 47 countries with legal, cultural, religious, and economic differences. A prior study suggested variation in ethical resuscitation/end-of-life practices across Europe. This study aimed to determine whether this variation ha…
A survey of pediatric critical care fellows on palliative care principles applied in the ICU setting
Learning Objectives: Pediatric intensivists are often required to practice what has been described as "primary palliative care". This includes providing optimal symptom management, communication and family support for critically ill children with chronic or li…
A Survey of Perinatal Palliative Care Programs in the United States: Structure, Processes, and Outcomes
Background: Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development. Objective: To explicate structure, processes, and outcomes of PPC …
A systematic review of instruments assessing dimensions of distress among caregivers of adult and pediatric cancer patients
OBJECTIVE: Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in …
A systematic review of reasons for gatekeeping in palliative care research
BACKGROUND: When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be responsible f…
Bereaved parents experience of a hospital memorial service
Objectives * Understand reasons a bereaved parent chooses to return to the hospital for a memorial service. * Identify elements of a hospital memorial service that parents identify as most beneficial. Original Research Background. 77% of children's hospitals p…
Bereaved Siblings' Advice to Health Care Professionals Working With Children With Cancer and Their Families
INTRODUCTION: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (H…
Bereavement and end of life care issues of children with cancer and their families
Background/Objectives: The Indus Children Cancer Hospital sees children from underprivileged homes, from the ages of 0-16 years, with 500 new cases every year from all over Pakistan and Afghanistan. Half of these cases will get treated successfully but there i…
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…
Beyond last words: Communicating with dying children who have trouble speaking
PURPOSE: The majority of children whose brain tumors are resistant to treatment, lose their ability to speak and write due to progressive impairment and/or fatigue. Compromised communication can be emotionally devastating for the whole family, as children stru…
Bridging the gap between treatment and end of life for paediatric patients with cancer
Background/Objectives: Nationwide Children's Hospital is the largest children's hospital in the United States. Our Psychosocial Oncology Team developed a model of care to significantly enhance care for dying children. The model embodies a collaborative approac…
Can Parents Refuse a Potentially Lifesaving Transplant for Severe Combined Immunodeficiency?
If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this disease. Althoug…
Cause of Death of Infants and Children in the Intensive Care Unit: Parents' Recall vs Chart Review
BACKGROUND: More than 55 000 children die annually in the United States, most in neonatal and pediatric intensive care units. Because of the stress and emotional turmoil of the deaths, the children's parents have difficulty comprehending information.
OBJECTIVE…
Characterizing mortality in pediatric tracheostomy patients
OBJECTIVES/HYPOTHESIS: To assess the longitudinal risk of death following tracheostomy in the pediatric age group. STUDY DESIGN: Retrospective cohort study. METHODS: Hospital records of 513 children (</=18 years) at a tertiary care children's hospital who unde…
Children's Experiences of Epilepsy: A Systematic Review of Qualitative Studies
CONTEXT: Epilepsy is a common and severe neurologic disease associated with increased mortality, seizure-related injury, and adverse psychological and quality-of-life outcomes. OBJECTIVE: To describe the perspectives of children and adolescents with epilepsy. …
Children's palliative care in low- and middle-income countries
One-third of the global population is aged under 20 years. For children with life-limiting conditions, palliative care services are required. However, despite 80% of global need occurring in low- and middle-income countries (LMICs), the majority of children's …
Children's palliative care now! Highlights from the second ICPCN conference on children's palliative care, 18-21 May 2016, Buenos Aires, Argentina
The International Children's Palliative Care Network held its second international conference on children's palliative care in Buenos Aires, Argentina, from the 18th-21st May 2016. The theme of the conference was 'Children's Palliative Care. Now!' emphasising …
Children with Complex Medical Conditions: an Under-Recognized Driver of the Pediatric Cost Crisis
Children with medical complexity (CMC) represent less than 1 % of all US children, but account for more than 30 % of total pediatric healthcare costs. They are a rapidly growing population of children with the highest levels of medical fragility and intensive …