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 3101–3125 of 4332 publications
Where children die: A retrospective analysis of child death overview panel (CDOP) data
Aims There is a statutory requirement to review all child deaths in England. The aim of this study is to collate and evaluate child death data from all Child Death Overview Panels (CDOPs) within a single UK region to inform strategic planning. Methods A retros…
Who should discuss goals of care during acute deteriorations in patients with life threatening illnesses? A survey of clinicians from diverse pediatric specialties
Introduction: Discomfort exists discussing goals of care with families of children with advanced life-threatening illnesses. There also exists important variability in the management of these patients. This study seeks to explore the perceptions of pediatric s…
Withholding and withdrawal of life-sustaining treatments for neonate in Japan: Are hospital practices associated with physicians' beliefs, practices, or perceived barriers?
OBJECTIVE: To describe the current status of withholding or withdrawal of life-sustaining interventions (LSI) for neonates in Japan and to identify physician- and institutional-related factors that may affect advance care planning (ACP) practices with parents.…
Worth living or worth dying? The views of the general public about allowing disabled children to die
BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public …
"You Are Not Alone": Advice Giving for Parents of Children Living with Complex Chronic Conditions
Parental advice giving serves as an important form of informational support for parents of children living with complex chronic conditions (CCCs). These messages can provide backchannel insights into social challenges, best practices, and may offer different f…
A Comparison of Symptom Management for Children with Cancer in Iran and in the Selected Countries: A Comparative Study
Aim: The aim of this study is to describe the experiences of other countries regarding the status of pediatric palliative care in the field of symptom management and to compare it with the current status in Iran to achieve an appropriate level of symptom manag…
A cross-sectional pilot study of compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care providers in the United States
OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Com…
A Cross-Sectional Pilot Study of Compassion Fatigue (CF), Burnout (BO), and Compassion Satisfaction (CS) in Pediatric Palliative Care (PPC) Providers
OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Com…
Advance care planning and outcome in pediatric palliative home care
Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric palliative home ca…
All‐cause mortality rates and home deaths decreased in children with life‐limiting diagnoses in Denmark between 1994 and 2014
Aim Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994–2014.
Methods We ob…
Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System
A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition …
Always a burden? Healthcare providers' perspectives on moral distress
BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral distress in …
A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses
PURPOSE: To conduct a metasynthesis of qualitative research exploring parents' psychosocial experiences during complex and traumatic life transitions related to caring for a child with a life-limiting (LLI) or life-threatening illness (LTI). BACKGROUND: Parent…
A music therapy model for pre-bereavement resiliency development in informal hospice caregivers: A grounded theory study
This study was an exploratory inquiry into the role of music therapy for pre-bereaved informal hospice caregivers. Pre-bereavement has been an area of increased scholarly and clinical focus across multiple healthcare fields over the past decade, and a nascent …
An economic examination of private insurance claims among adolescents and young adults who were enrolled in hospice during the last year of life
Purpose: The purpose of this study was to generate baseline data on the health characteristics, health care utilization, and health care spending among privately insured adolescents and young adults (AYA), who were enrolled in hospice care during their last ye…
A new kind of language barrier: Examining disparities in medical teams' referrals of palliative care patients to Pediatric psychology
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study aims to ide…
An interdisciplinary care model to establishing palliative care for children and adolescents with cancer
Background/Objectives: Palliative care for Pediatric cancer patients and their families includes the relief of symptom and improvement of quality of life at any and all stages of disease. There care are most effectively provided by an interdisciplinary team. T…
Anticipating death in children and adults with childhood onset severe central nervous system impairment: A case series review
Objectives * Discuss problems due to severe central nervous system impairment that can remain intractable to treatment options. * Define tipping points that can prompt anticipatory discussions, including suggested recommendations that best meet goals. * Utiliz…
A possibility for strengthening family life and health: Family members' lived experience when a sick child recieves home care in sweden
Background/Objectives: Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to elucidate…
A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol
BACKGROUND: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period…
A qualitative study of health care professionals’ views and experiences of paediatric advance care planning
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care profess…
A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle populatio…
Are pediatric patients just short adults? most commonly prescribed drugs for pediatric hospice patients
Purpose According to the most recently published data from National Hospice and Palliative Care Organization, approximately 78% of hospice providers in the United States serve pediatric patients, and the majority of these serve 1-10 patients per year. As with …
A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app qualit…
A Review of the Integrated Model of Care: An Opportunity to Respond to Extensive Palliative Care Needs in Pediatric Intensive Care Units in Under-Resourced Settings
It is estimated that 6.3 million children who die annually need pediatric palliative care (PPC) and that only about 10% of them receive the attention they need because about 98% of them live in under-resourced settings where PPC is not accessible. The consulta…