July 2020 List

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July 2020 List

Collection Items

OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses. DESIGN: Prospective multicenter observational study. SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI…

Introduction: Adolescent palliative care is especially challenging because of complex developmental, social, clinical, and legal concerns. In adolescents with life-limiting illnesses, developmental tasks of normal adolescence such as developing an…

The purpose of this research was to ascertain the availability and depth of services of bereavement care for mothers who live rurally. The specific focus is on those who experienced early losses including pregnancy, stillbirth, neonatal, and young…

OBJECTIVE: When an infant's prognosis is uncertain, communication between neonatologists and parents surrounding goals of care and decision-making can be challenging. This qualitative study explored communication between neonatologists and parents to…

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…

PURPOSE OF REVIEW: To familiarize pediatric anesthesiologists with primary palliative care procedural communication skills and recommendations for discussions involving complex medical decision-making or advance care planning, such as discussions…

Perinatal hospice care is a special form of paediatric palliative care, with a focus on prenatally diagnosed malformation, providing physical, psychological and mental support with a holistic approach for the families. Our aim was to analyse how…

Many ethical issues arise concerning the care of critically ill and dying patients during the coronavirus disease 2019 (COVID-19) pandemic. In this issue's Ethics Rounds, we present 2 cases that highlight 2 different sorts of ethical issues. One is…

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…

BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The…

OBJECTIVES: Children with dependence on respiratory or feeding technologies are frequently admitted to the PICU, but little is known about their characteristics or outcomes. We hypothesized that they are at increased risk of critical illness-related…

Objective: The care provided in the time surrounding the death of a child shapes long-term memories and has potential to impact on the grieving process. There are no specific guidelines for PICU staff in relation to what good care looks like at this…

Background: Previous studies of pediatric residents have identified educational gaps in caring for children with medical complexity. Training opportunities in complex care vary across residency programs. Defining core curricular topics in complex…

During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care,"…

BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s. PURPOSE: The purpose of this article is to…

The article presents a discussion between bereaved parents on the Quality of Life Steering Council at a large academic pediatric cancer center and interdisciplinary pediatric palliative care clinicians about the coexistence of hope and realism.…

The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility…

BACKGROUND: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when…

Background: A significant number of newborns are affected by life-limiting or life-threatening conditions. Despite this prevalence, there are inconsistencies in attitudes toward, and delivery of, neonatal palliative care. Implementing neonatal…

Babies born at the limit of viability have a high risk of morbidity and mortality. Despite great advances in science, the approach to these newborns remains challenging. Thus, this study reviewed the literature regarding the treatment of newborns at…

Introduction: When faced with serious illness and the possibility of a child's death, a family experiences many uncertainties and traumatic experiences. The expected normal order of life is significantly disrupted, and a diagnosis of a…

The UK adopted the opt-out system (deemed or presumed consent) in end-of-life organ donation enforceable in May 2020. Presumed consent applies to adults but not children. Transplant advocates have recommended that all children on end-of-life care…

PURPOSE OF REVIEW: Children with medical or surgical critical illness or injury require skillful attention to physical, emotional, psychological, and spiritual needs, whereas their families need support and guidance in facing life-threatening or…

Background and Objective(s): Children with medical complexity (CMC) have multiple chronic health problems resulting in functional limitations and high resource utilization. Providing primary care for CMC can be time consuming and costly. This study…

The field of pediatric cardiology has witnessed major changes over the past few decades that have considerably altered patient outcomes, including decreasing mortality rates for many previously untreatable conditions. Despite this, some pediatric…

Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the…

Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers. Objective(s): Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two…

Objective: NHS England's Marginal Rate Emergency Threshold (MRET) and Readmission Fund funded the Chameleon Project 2018 (Twitter account: @chameleonproje1), to improve children's end of life care. This funded a lead disability paediatrician with…

BACKGROUND: Advances in prenatal testing and diagnosis have resulted in more parents learning during pregnancy that their child may die before or shortly after birth. These advances in testing and diagnosis have also resulted in more parents…
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