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 2326–2350 of 4332 publications
The use of medical cannabis in pediatric palliative care: a case series
BACKGROUND: Medical cannabis may be a useful tool for managing treatment-resistant epilepsy and chronic pain, which affect many patients in pediatric palliative care (PPC); however, little evidence is available in this setting. CASE PRESENTATION: We aimed to d…
"They just get it" an exploration of father's experiences and perceptions of a support group for men caring for children with disabilities and/or developmental delay
BACKGROUND: Support groups available to parents/carers of children with a disability or developmental delay (DDD) are predominately attended by women. Limited data exists reporting experiences of the few male-only support groups. This paper examines experience…
Timing of Co-occurring Chronic Conditions in Children With Neurologic Impairment
BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with NI. METHODS…
To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure
Owing to differences in opinion about patient autonomy and perceived maturity, discussing diagnosis and prognosis with children can be challenging. Shifting away from “never tell” and “always tell” approaches, recent articles have championed more nuanced case-…
Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children
Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty t…
Top Ten Tips Palliative Care Clinicians Should Know About Their Work's Intersection with Clinical Ethics
Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices util…
Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review
Background: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This r…
Trauma-informed care in the context of intellectual and developmental disability services: Perceptions of service providers
Traumatic life events have pervasive impacts on health and well-being. A growing body of literature shows that people with intellectual and developmental disabilities are disproportionately impacted by trauma. Trauma-informed care (TIC) is a philosophy of serv…
Trauma-informed qualitative research: Some methodological and practical considerations
Mental health nurses who engage in research are likely to undertake research on sensitive topics, related to experiences of illness, care delivery and treatment. With recognition of the high prevalence of trauma in the lives of people who interact with mental …
Trends in length of stay for Neonatal Intensive Care Unit patients who die before hospital discharge
OBJECTIVES: The objectives of this study were to establish days between birth and death for neonates over a 14-year period, determine if days between birth and death have changed over time across gestational age cohorts, and identify diagnoses which may put i…
Triggers for Palliative Care Referral in Pediatric Oncology
Palliative care (PC) integration into the care of pediatric oncology patients is growing in acceptance and has been shown to improve the quality of life of children with cancer. Yet timing for referrals and referral practices remain inconsistent, and PC remain…
True Resilience: A Look Inside COVID's Effect on Children with Medical Complexity and Their Families
PURPOSE OF REVIEW: Vulnerable children with medical complexity are silent victims of the COVID-19 pandemic, impacted by lack of resources and sick caregivers. In this article, we examine ways in which the pandemic has increased the significant difficulties alr…
Understanding the Bereavement Process: Voices of Bereaved Parents
Analysis of in-depth qualitative interviews with 20 bereaved parents and 11 service providers revealed a more holistic conceptualization of the bereavement process for parents who have lost a child. Holistic ?states? included: ?helplessness prior to the death,…
Understanding the Causes of Work-Related Stress among Registered Nurses Working with Children at Home: An Integrative Literature Review
Work-related stress in nursing is widely acknowledged. This integrative review was undertaken to systematically identify and appraise the causes of work-related stress experienced by registered nurses working with children at home. Ten studies were included, e…
Use of paclitaxel to successfully treat children, adolescents, and young adults with Kaposi sarcoma in southwestern Tanzania
Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low-and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of pediatric patients…
Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures as Clinical Trial Endpoints: Experience from a Multicenter Pragmatic Trial in Children with Crohn’s Disease
Objectives
To evaluate whether Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric patient-reported outcome (PRO) measures can serve as valid endpoints in a clinical trial of a chronic pediatric illness.
Study design
We evaluated the re…
Using a trauma informed practice framework to enhance understanding of and identify support strategies for behavioural difficulties in young people with Prader-Willi syndrome
Background
Behavioural support for young people with Prader-Willi syndrome (PWS) is necessary in home and school environments. The Trauma Informed Practice (TIP) framework has been used to support young people with complex behavioural needs in school settings.…
Using normalization process theory to evaluate providing pediatric palliative care at end-of-life as web-based training intervention for nurses: Study protocol for a randomized controlled trial
Background: Palliative care is a rather concept that new in Iraq, there is no training intended for both health care specialists and the overall public. The lack of education and training programs is the most important barrier. Intermediate training is needed …
Using Photo-Elicitation Interviews With Families of Children and Adolescents With Chronic Illness
BACKGROUND: Despite the increasing number of studies using photo-elicitation for data collection in qualitative research, there is a need to further explore its use among families of children and adolescents living with chronic illness. OBJECTIVE(S): The aim o…
Using Quality Improvement Science to Create a Navigator in the Electronic Health Record for the Consolidation of Patient Information Surrounding Pediatric End-of-Life Care
BACKGROUND: It is important to document the domains surrounding end-of-life (EOL) care in the electronic health record (EHR). No pediatric navigator exists for these purposes. MEASURES: Medical charts were reviewed for documentation surrounding code status and…
Using Virtual Learning to Build Pediatric Palliative Care Capacity in South Asia: Experiences of Implementing a Teleteaching and Mentorship Program (Project ECHO)
Palliative care is an important component of pediatric cancer treatment that provides holistic support for children and their families. In low- and middle-income countries, where 98% of the children needing palliative care reside, access to palliative care ser…
Utilization of Parallel Resources and Sociodemographic Factors in Treating Children with Complex Chronic Diseases: A Cross-Sectional Study
Children with complex chronic conditions have a high need for health and social care resources. Many parents explore parallel resources such as alternative therapies, associations, psychological support, private medical consultations, and other out-of-pocket e…
Utilizing high-fidelity simulation to improve newly licensed pediatric intensive care unit nurses' experiences with end-of-life care
PURPOSE: New pediatric intensive care unit (PICU) nurses face distinct challenges in transitioning from the protected world of academia to postlicensure clinical practice; one of their greatest challenges is how to support children and their caregivers at the …
Validation of Administrative Codes for Palliative Care Consultation Among Critically Ill Children
OBJECTIVES: To determine the validity of palliative care (PC) administrative codes (V66.7 and Z51.5) among critically ill pediatric patients. METHOD(S): In this single-center retrospective cohort study, we included all hospitalizations with a PICU admission be…