February 2019 List

Title

February 2019 List

Collection Items

Background: Our objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a…

Background: In 2013, 23,446 infants died in the U.S.. For infants hospitalized in the neonatal intensive care unit (NICU), advances in medicine have prolonged the lives of many infants who would not have previously survived, resulting in complex…

Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and…

Genetic disorders are a leading cause of morbidity and mortality in infants. Rapid whole-genome sequencing (rWGS) can diagnose genetic disorders in time to change acute medical or surgical management (clinical utility) and improve outcomes in acutely…

CONTEXT: Pediatric palliative care (PPC) is intended to promote children's quality of life by using a family-centered approach. However, the measurement of this multidimensional outcome remains challenging. OBJECTIVE: To review the instruments used…

BACKGROUND: Each year approximately 42,000 children die and 400,000 children cope with chronic or life threatening illnesses in the U.S. Improved access to evidence based pediatric palliative care is essential to ease suffering, manage distressing…

Objectives: Research has shown that advance care planning concepts for adults need to be revised and adapted to be applicable to pediatric situations. A consistent approach to pediatric advance care planning (pACP) is still missing. The study aimed…

BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about…

This study proposes a method for calculating the annual incidence rate of sibling bereavement among US youth using national epidemiological data. The proposed model combines data on family household size with national death statistics to calculate…

Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice…

Individuals with chronic illnesses must manage long-term uncertainty as they cope with the ways the illness influences their lives. In the context of pediatric illnesses, parents must manage uncertainty during the diagnosis and treatment of their…

Background: A ground breaking paediatric palliative care study in Scotland in 2015 identified that 15,400 babies, children and young people (BCYP) with life-limiting conditions required input from palliative care services, significantly higher than…

AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades…

BACKGROUND: The death of a newborn baby is devastating. While clinical issues may be a primary concern, interpersonal aspects can impact significantly. Mothers in this situation are not easy to access for research and little quantitative evidence is…

Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over…

Purpose: The Quality of Care Collaborative Australia (QuoCCA) provided pediatric palliative care education across Australia with the aim of improving the quality of services. The education was delivered through a collaboration of six tertiary…

BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental…

BACKGROUND: The impact of pediatric palliative care (PPC) is well established for children with chronic complex diseases. However, PPC likely also benefits previously healthy children with acute life-threatening conditions. OBJECTIVE: To determine…

Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with…

AIM: To increase understanding of grandparental grief following the death of a grandchild from a life-limiting condition. DESIGN: META-ETHNOGRAPHY: DATA SOURCES: Academic Search Complete (2015, updated 2018), CINHAL, Embase, psycINFO, PubMed and Web…

Background: The loss of a child in the first hours or days of life is a profoundly distressing event for parents. Provision of appropriate psycho-social care for bereaved parents is critical. Current perinatal and neonatal palliative care guidelines…

AIM: Children and adolescents with end stage renal disease face a high morbidity and mortality. Palliative care provides a multidisciplinary approach to reduce disease burden and improve quality of life. This study evaluated concepts and current…

BACKGROUND: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they…

Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides residential hospice services to children living with serious medical conditions. The use of music therapy to ameliorate anxiety and pain is well documented in…

Background The ways parents are supported at the end of their child�s life and after death can profoundly affect the grieving process. Within children�s hospices cold bedrooms, cooling blankets and cuddle cots are provided to enable families to be…

Aim To describe the process of obtaining consensus of outcome priorities between families of children with medical complexity (CMC) and their healthcare providers (HCPs) for the purpose of evaluating changes to service delivery. Method The consensus…

BACKGROUND: Given the dearth of literature and no clinical practice guidelines written for speech-language pathologists (SLPs) working in paediatric palliative care (PPC), a need has been identified to explore the scope of clinical practice and…
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