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 26–50 of 55 publications
Development of a Global Palliative Care Program
Background and Aims: Disparities in access to pediatric palliative care (PPC) and pain management remain an under-addressed global health issue, especially in low- and middle-income countries (LMICs). Although integration of palliative care (PC) is currently c…
interRAI Pediatric Home Care (PEDS-HC) Assessment Tool: Evaluating Ontario Healthcare Workers’ Experience
High quality pediatric homecare requires comprehensive assessment of the needs, supports, and health care challenges of children with special healthcare needs and their families. There is no standardized homecare assessment system to evaluate children’s clinic…
Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra -- Children's Palliative Care Project in India
Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID. Mat…
Children with medical complexity and paediatric palliative care: a retrospective cross-sectional survey of prevalence and needs
Children with medical complexity (CMC) have been defined (Cohen et al., Pediatrics 127: 529–538, 2011.) as an emerging population potentially eligible for PPC. The current study investigated the prevalence of children with medical complexities eligible for a l…
Developing a nursing dependency scoring tool for children's palliative care: the impact on hospice care
BACKGROUND: Occupancy is commonly used to measure bed management in hospices. However, the increasing complexity of children and young people and growing dependence on technology mean that this is no longer effective. AIM: To develop a dependency tool that ena…
Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting
Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family Carer Needs …
Differing needs of mothers and fathers during their child's end-of-life care: secondary analysis of the "Paediatric end-of-life care needs" (PELICAN) study
BACKGROUND: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during their chi…
Transition to a Primary Palliative Care Model in the NICU (FR441B)
Objectives: * Compare the benefits of a primary palliative care model to those of a specialty palliative care service. * Propose a stepwise process to initiate the transition from a specialty palliative care service to a primary palliative care service. * Iden…
Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS)
BACKGROUND: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is…
Challenges experienced by paediatricians providing palliative care to children; A thematic analysis
Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with life-limiting…
Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU
BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and ma…
Hospital inpatient use in mainland Portugal by children with complex chronic conditions (2011 - 2015). [Portuguese]
Introduction: Due to epidemiological change, interest in complex chronic conditions has been increasing within the pediatric health system. As such, we aim to evaluate hospital inpatient care in the National Health Service (mainland Portugal) by pediatric pati…
Improving pediatric palliative care in a community-based setting through an ongoing education series
Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April 2017. Hosp…
Introduction to a Novel Palliative Care Intervention for Family Caregivers of Children and Adolescents Living with Rare Diseases (TH308)
Objectives: *Establish the need for a family caregiver intervention for parents of children with rare diseases.*Introduce the intervention and its components.*Disseminate findings from the piloting of this intervention. In the U.S. a rare disease is defined as…
Situational analysis and needs assessment regarding the availability and extent of pediatric palliative care services in the philippines
Background: Around 200,000 pediatric clients are diagnosed with cancer each year globally. Majority (84%) of cancer cases are found in developing countries with 20% average survival rate (Ferlay et al, 2012). Two-thirds of pediatric oncology clients in the Phi…
The Long-Term Care Experiences and Care Needs of Parents Caring for Children With Adrenoleukodystrophy
Background: Children suffering from adrenoleukodystrophy (ALD) requires life-long care. Little is known about the care needs of parents of ALD children at different stages of their disease. Purpose: The purpose of this study was to understand the long-term car…
Frequency and Clinical Characteristics Associated With Pediatric Deaths In a Tertiary Hospital in a Developing Country - Opportunities for Pediatric Palliative Care
Background: Colombia does not have knowledge about the clinical characteristics of pediatric deaths caused by life-threatening conditions and/or serious illness within the hospital setting.
Introduction of triggers for palliative care consultation improve utilization and and satisfaction within a level 4 NICU
The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those with medica…
Clinical spectrum of children receiving palliative care in Malaysian Hospitals
Introduction: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim t…
Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care
CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and t…
Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity
OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to identify k…
Palliative communication skills training for pediatric nurse practitioners: A novel program with booster sessions
Communication between pediatric providers, patients, and their families is a key component of for children with serious illness, with broad implications for patient and family outcomes. Recommendations for effective and compassionate palliative communication i…
Chronic critical illness in infants and children: A speculative synthesis on adapting ICU care to meet the needs of long-stay patients
Objectives: In this review, we examine features of ICU systems and ICU clinician training that can undermine continuity of communication and longitudinal guidance for decision making for chronically critically ill infants and children. Drawing upon a conceptua…
Depressive symptoms in mothers after perinatal and early infant loss in rural Bangladesh: a population-based study
PURPOSE: We examined stillbirth and neonatal death as predictors of depressive symptoms in women experiencing these events during the first 6 months postpartum. METHODS: We performed secondary analyses using data from 41,348 married women aged 13-44 years, ori…