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 1926–1950 of 4332 publications
Using EmPalPed-An Educational Toolkit on Essential Messages in Palliative Care and Pain Management in Children-As a Strategy to Promote Pediatric Palliative Care
BACKGROUND: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational curricula of heal…
Using mobile phones, WhatsApp and phone interviews to explore how children's hospice nurses manage long-term relationships with parents: a feasibility pilot
BACKGROUND: Mobile phones are familiar to most nurses, but the applications available for voice recording and transfer of audio files in research may not be. AIM: To provide an overview of a pilot study which trialled the use of mobile phones, WhatsApp and pho…
Vicarious learning and communication self-efficacy: A pediatric end-of-life simulation for pre-licensure nursing students
BACKGROUND: End-of-life clinical experiences, particularly in pediatrics, are quite limited for pre-licensure nursing students. Though effective, end-of-life simulations can be costly, require facilitators trained in palliative and end-of-life care, and are re…
Views and experiences of young people, their parents/carers and healthcare professionals of the advance care planning process: A summary of the findings from a qualitative study
BACKGROUND: Advance care planning for young people is relatively new in the UK. There is a lack of understanding about the engagement of young people in their own planning process, optimal timing of discussions and the facilitators and barriers to the engageme…
Volunteer-Based Social Support Structures and Program Exposure Outcomes in an Adolescent Young Adult Palliative Care Peer Support Program
Objective: To conduct a social network analysis (SNA) of patient-volunteer networks and assess the impact of patient characteristics on network measures. Background(s): Volunteers play a critical role in providing peer support to adolescent and young adult (AY…
Volunteer Experiences of Pediatric Palliative Care among University Students: A Phenomenological Approach
PURPOSE: This phenomenological analysis was conducted to explore the experiences of college student volunteers in the field of pediatric palliative care. METHODS: In-depth interviews were conducted with nine study participants who had experience volunteering w…
Vulnerability of Inexperience: A Qualitative Exploration of Physician Grief and Coping after Impactful Pediatric Patient Deaths
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and experienced ped…
"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making
BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German…
What does the best interests principle of the convention on the rights of the child mean for paediatric healthcare?. [Review]
The present review analyses the implications of the best interests of the child principle, which is one of the most widely discussed principles of medical ethics and human rights, for paediatric healthcare. As a starting point, it presents the interpretation o…
What hinders and helps in the end-of-life decision-making process for children: Parents' and physicians' views
AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71 physicians. The end-…
What is the impact of high-profile end-of-life disputes on Paediatric Intensive Care (PIC) trainees? Original research
Introduction This study explores UK Paediatric Intensive Care (PIC) trainees’ thoughts and feelings about high-profile end-of-life cases recently featured in the press and social media and the impact on their career intentions.Methods Semi-structured interview…
When and how do healthcare professionals introduce specialist palliative care to the families of children with life-threatening conditions in Taiwan? A qualitative study
BACKGROUND: Specialist palliative care (SPC) is often needed to manage complex or refractory problems in children with life-threatening conditions during end-of-life. This study explores the perceptions of healthcare professionals (HPs) to determine the trigge…
Which children and young people are at higher risk of severe disease and death after hospitalisation with SARS-CoV-2 infection in children and young people: A systematic review and individual patient meta-analysis
BACKGROUND: We aimed to describe pre-existing factors associated with severe disease, primarily admission to critical care, and death secondary to SARS-CoV-2 infection in hospitalised children and young people (CYP), within a systematic review and individual p…
Why is corneal donation so rare in children's hospices? A survey of multidisciplinary team members attitudes, knowledge, practice, and experience
BACKGROUND: Corneal donation is a rare event among pediatric patients dying in children's hospices in Italy. Previous research suggests that lack of knowledge and negative attitude of Health Care Professionals (HCPs) are the most relevant factors for low donat…
Why the Individual Provider Approach to Pediatric Palliative Care Consultation Exacerbates Healthcare Disparities: A Moral Argument for Standard Referral Criteria
Pediatric palliative care is specialized medical care for children who live with serious and life-limiting illnesses, with the central goal to improve quality of life for both children and their families. Presently, a majority of pediatric palliative care refe…
Years of Life Lost: A Call to Achieve Equitable End-Of-Life Care among Children
Significant disparities continue to exist in access to inpatient pediatric hospice care among children at the end-of-life. Increasingly more children at this stage are dying in the hospital or at home on hospice which is not always an acceptable option to the …
"You are not alone": Connecting through a bereaved parent mentor program for parents whose child died of cancer
BACKGROUND: Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well-being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster this peer …
YOUNG PEOPLE AND TRANSITION AT A HOSPICE FOR ADULTS
Background The hospice recognised a gap in services for patients, relatives and carers aged 18-30 and that services should be more age appropriate (Smith, Mooney, Cable, & Taylor (eds.). Teenage Cancer Trust, 2016). In addition, young people are living longer …
A caregiver, an expert, a patient: How complementary therapies support the roles of parents of children with life threatening conditions in hospital settings
Objective: The purpose of this study was to understand emerging roles of parents of hospitalized children with life threatening conditions and to explore how complementary therapies integrated into conventional pediatric care may shift and/or support these rol…
A Communication Guide for Pediatric Extracorporeal Membrane Oxygenation
Decision-making surrounding extracorporeal membrane oxygenation initiation and decannulation has become a key challenge in critical care. Nuanced communication skills and transparent discussions about prognosis are imperative during this lifesaving, yet high-r…
A Cross-Sectional Study of the Clinical Metrics of Functional Status Tools in Pediatric Critical Illness
OBJECTIVES: To determine the clinical metrics of functional assessments in pediatric critical illness survivors. DESIGN: Cross-sectional observational study. SETTING: PICU follow-up clinic. PATIENTS: Forty-four PICU survivors 6-12 months post PICU stay, and 52…
Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an onli…
Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD
Despite continued advances in medical treatment, pediatric CKD remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death. These burdens underscore the need for integration of pediatric palliative care (PPC) into …
A description of children dependent on long term ventilation via tracheostomy and their hospital resource use
PURPOSE: To describe the proportion of children with an index hospitalization in 2014 who had established long-term invasive ventilator dependence (LTVD), and determine regional variation in hospital length of stay, charges, and readmissions. DESIGN AND METHOD…
Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The "New" Lost Tribe
Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a "lost tribe" without a medical "home"; neither pediatric nor adult oncology services were able to prov…