September 2019 List

Title

September 2019 List

Collection Items

BACKGROUND: Parent empowerment is often an expressed goal in clinical pediatrics and in pediatric research, but the antecedents and consequences of parent empowerment are not well established. OBJECTIVE: The objective of this systematic review was to…

IMPORTANCE: Children, adolescents, and young adults with life-limiting conditions experience various challenges that may make them more vulnerable to mental health problems, such as anxiety and depression. However, the prevalence and incidence of…

Nearly 20 years ago the EURONIC study reported that French neonatologists sometimes deemed it legitimate to terminate the lives of newborn infants when the prognosis appeared extremely poor. Parents were not always informed of these decisions. Major…

BACKGROUND: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the…

AIMS: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. METHODS: We searched…

OBJECTIVE: We aimed to assess Child Death Overview Panel (CDOP) data validity, and cause of death classification, by comparison with information from a local birth cohort study (Born in Bradford, BiB), and another cause of death coding system (causes…

Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning…

BACKGROUND: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare…

BACKGROUND: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific…

Background: Increasing numbers of young adults with life-limiting conditions are living into adulthood and consequently making the transition from children's to adult services. A poorly planned transition is associated with adverse outcomes such as…

CONTEXT: Losing a child is the most burdensome event parents can experience involving risks of developing anxiety and depression. OBJECTIVES: To investigate anxiety and depression in bereaved parents during their child's life-limiting illness and…

OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative,…

Palliative care services are beneficial for pediatric neurology patients with chronic, life-limiting illnesses. However, timely referral to palliative care may be impeded due to an inability to identify appropriate patients. The aim of this pilot…

BACKGROUND: Volunteers are expected to play a key role in children's hospice. However, there is a lack of information about how to cultivate effective volunteer training programs. OBJECTIVE: To verify the effect of a training program on volunteers'…

AIM: To analyze the use of health services for children with severe chronic diseases, seeking to identify patterns of use according to sociodemographic and clinical conditions, and to identify unmet needs of care coordination that could benefit from…

Background Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and…

Parental advice giving serves as an important form of informational support for parents of children living with complex chronic conditions (CCCs). These messages can provide backchannel insights into social challenges, best practices, and may offer…

Background: Palliative care program service delivery is variable, and programs often lack data to support and guide program development and growth. Objective: To review the development and key features of the National Palliative Care Registry ("the…

Background: The impact of specialty pediatric palliative care (PPC) on intensive care unit (ICU) length of stay for children is unclear. Objective: To estimate the impact of PPC consultation by analyzing ICU stay as a dynamic outcome over the course…

Context: All inpatient children receiving pediatric palliative care consults at a free-standing children's hospital.Objectives: To explore the impact of massage therapy on pediatric palliative care patients' symptom burden and medication use pattern,…
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