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 2501–2525 of 4332 publications
End-of-life medical decision-making for children in custody: A collaborative, multi-stakeholder practical approach
BACKGROUND: Parents have a constitutionally-protected, fundamental right to make decisions concerning the health and well-being of their children, afforded by the Due Process Clause of the Fourteenth Amendment. However, parental rights are not absolute, and ma…
Engaging Fathers in Pediatric Palliative Care Research
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary m…
Enhancing Connections-Palliative Care: A Quasi-Experimental Pilot Feasibility Study of a Cancer Parenting Program
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connection…
Enhancing the care of children with chronic diseases through the narratives of patient, physician, nurse and carer
We tested the hypothesis that a narrative approach may enhance a bio-psycho-social model (BPS) in caring for chronically ill children. Forty-eight narratives were collected from 12 children with six different medical conditions, their mothers, physicians, and …
Estimating the prevalence of life-limiting conditions in Queensland for children and young people aged 0-21 years using health administration data
Objective The prevalence of life-limiting conditions in children in Australia is unknown; such data are needed to inform health service planning for paediatric palliative care. The aim of this study was to estimate the prevalence of life-limiting conditions fo…
Ethical Dilemmas at the Beginning and End of Life: A Needs-Based, Experience-Informed, Small-Group, Case-Based Curriculum for Pediatric Residents
Introduction: Pediatric residents are faced with ethical dilemmas in beginning- and end-of-life situations throughout their training. These situations are innately challenging, yet despite recommendations that residents receive training in ethics and end-of-li…
Ethical issues in treatment of babies born at 22 weeks of gestation
Many centres now report that more than half of babies born at 22 weeks survive and most survivors are neurocognitively intact. Still, many centres do not offer life-sustaining treatment to babies born this prematurely. Arguments for not offering active treatme…
Evaluating the Benefit of Bereavement Mailings at a Large Pediatric Center
The Boston Children's Hospital Hematology/Oncology Bereavement Program has supported bereaved parents for three decades following the death of their child from cancer or blood disorder. An analysis of the current bereavement program as well as a review of up-t…
Evaluating the Cost-Effectiveness of Home-Based Palliative Care for Children with Special Health Care Needs: A Review Study
Introduction: Due to the increased survival of children with chronic and complex diseases, transferring a part of care provision to home and harnessing the family’s potential with the aim of shortening the length of stay and returning the child to the safe and…
Evaluating the validity, reliability and clinical utility of the Music therapy Sensory Instrument for Cognition, Consciousness and Awareness (MuSICCA): protocol of a validation study
INTRODUCTION: A growing number of children and young people are surviving severe acquired brain injuries due to advances in healthcare. However, many fail to emerge from coma and continue to live with disorders of consciousness (DOC). Diagnostic, clinical and …
Evaluation of a Manualized Group Program for Siblings of Children with Diseases or Disabilities
Evaluation of a Manualized Group Program for Siblings of Children with Diseases or Disabilities This study evaluates a manualized group program for siblings of children with life-threatening/life-limiting diseases or disabilities. The program aims to activate …
Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit
AIM: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). METHODS: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paedi…
Examining key sociodemographic characteristics of adolescents and young adults with cancer: A post hoc analysis of the Promoting Resilience in Stress Management randomized clinical trial
Background: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
Expectations and knowledge of cannabidiol therapy for childhood epilepsy — A German caregiver survey
Background Cannabidiol (CBD) has gained popularity among parents of children with epilepsy, even before evidence of efficacy and safety was available. The aim of our survey was to gain information about parental attitude to CBD, as well as expectations and kno…
Experience of hope: An exploratory research with bereaved mothers following perinatal death
Problem The negative implications of perinatal death on mothers’ mental health are documented, however little is known about their experience of hope. Background Within the broader literature, hope has contributed to better mental health and bereavement adjust…
Experiences and needs of parents of palliative paediatric oncology patients: A meta-synthesis
INTRODUCTION: Despite palliative care being offered to paediatric cancer patients, it has limited utilisation and often excludes parental support. Therefore, this review aims to consolidate evidence regarding experiences and needs of parents of end-of-life pal…
Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families rece…
Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: A longitudinal qualitative investigation
Objectives: To understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care. Design(s): Longitudinal qualitative interview study with childr…
Experiences of new nurses dealing with death in a paediatric setting: A descriptive qualitative study
AIMS: To explore and describe the experiences, challenges and coping strategies of new nurses dealing with paediatric death in a clinical setting. DESIGN: A descriptive qualitative study design was used. METHODS: Semi-structured interviews were conducted to ex…
Experiencing place identity and place belongingness at a children's hospice: Parents' perspectives
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliativ…
Exploring Compassion from the Perspective of Health Care Professionals Working in Palliative Care
Background: Despite the body of literature regarding the varying definition of compassion, there appears a lack of literature pertaining to the meaning of compassion from the perspective of health care professionals working in palliative care settings. Objecti…
Exploring learners' perspectives of a pediatric palliative care tele-mentoring and education program (project Echo) in a resource-limited setting
INTRODUCTION/BACKGROUND: More than 98% of children who need palliative care live in low- or middle-income countries where access to palliative care is extremely limited. A lack of palliative care education for health care providers has been identified as a sig…
Exploring the Impact of the Coronavirus Pandemic on Pediatric Palliative Care Clinician Personal and Professional Well-Being: a qualitative analysis of U.S. Survey Data
CONTEXT: The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians. OBJECTIVE: We aimed to describe the pandemic's impact on pediatric pa…
Extending the Concept of Advance Care Planning to the Perinatal Period
Easier access to prenatal diagnostic procedures led to its widespread use as a screening measure. Hence, today it is more common for life-limiting illnesses to be diagnosed during fetal life. The concept of Advance Care Planning (ACP) provides a framework for …
Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study
Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background(s): Instruments in French used to measure outcomes in pediatric palliative care are lacking. Met…