BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the…
This was a prospective descriptive study of hospice physician home visits (HVs) conducted by Hospice and Palliative Medicine Fellows. Our objectives were 1) to improve our knowledge of hospice care at home by describing physician HVs 2) to identify…
We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families…
No controlled studies exist regarding the pharmaceutical reduction of ataxia symptoms in ataxia telangiectasia (A-T). In a multicenter, double-blind, randomized, placebo-controlled crossover trial, oral betamethasone (BETA) and placebo were compared…
Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services…
Rubinstein-Taybi syndrome (RTS) is characterized by developmental delay, postnatal growth retardation, typical facial appearance, and broad thumbs and big toes. The behavioral phenotype of children with RTS has been described as friendly and having…
OBJECTIVE:The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used…
Objective: While attention bias modification (ABM) is a promising novel treatment for anxiety disorders, clinical trial data remain restricted to adults. The authors examined whether ABM induces greater reductions in pediatric anxiety symptoms and…
BACKGROUND AND OBJECTIVE: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this…
Purpose: Deep brain stimulation is now widely accepted as an effective treatment for children with primary generalized dystonia. More variable results are reported in secondary dystonias and its efficacy in this heterogeneous group has not been fully…
Mucopolysaccharidoses are lysosomal storage disorders that are caused by a deficiency in the enzymes that degrade glycosaminoglycans. The accumulation of glycosaminoglycans affects multiple systems, resulting in coarse facial features, short stature,…
We employed grounded theory to explain how Canadian pregnant women and care providers manage birth. The sample comprised 9 pregnant women and 56 intrapartum care providers (family doctors, midwives, nurses, obstetricians, and doulas [individuals…
CONTEXT: Few studies have compared multiple perspectives of changes experienced by parents after a child's death. OBJECTIVES: This study used interviews with bereaved parents and siblings to examine changes in parents during the first year after the…
IMPLICATIONS FOR PRACTICE: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to…
Communication about and planning for the end of life has evolved with medical and technological changes. This article presents a focused literature review of Advance Directives (ADs), Advanced Care Planning (ACP), and communication in palliative and…
‘Virtual memorials’ intended to memorialize the lives of children imply significant shifts in the conceptualization of death, particularly for grieving parents. Created by parents in memory of their deceased children, on-line memorials constructed…
Medical researchers looking for evidence pertinent to a specific clinical question must navigate an increasingly voluminous corpus of published literature. This data deluge has motivated the development of machine learning and data mining…
Recent studies have shown that rates of depression and anxiety symptoms are elevated among individuals with autism spectrum disorders (ASDs) of various ages and IQs and that depression/anxiety symptoms are associated with higher IQ and fewer ASD…
Abstract Objectives: Little data are available on palliative home care for children. The objective of this study was to evaluate the effectiveness of a specialized pediatric palliative home care team (PPHCT) as experienced by parents and health care…
The prevalence of sleep problems in individuals with intellectual disability (ID) seems to vary between genetic syndromes associated with ID. Different types of sleep disturbances may indicate underlying causes of sleep problems and these types of…
BACKGROUND: When curative treatments are no longer options for patients dying of cancer, the focus of care often turns from prolonging life to promoting quality of life (QOL). Few data exist on what predicts better QOL at the end of life (EOL) for…
Juvenile neuronal ceroid lipofuscinosis (JNCL; CLN3 disease; Batten disease) is an autosomal recessive neurodegenerative disease of childhood. Symptoms typically present at school age with vision loss followed by progressive cognitive decline, motor…
Functional gastrointestinal disorders (FGIDs) are common. The poor health-related quality of life in FGIDs is a combination of gastrointestinal symptoms and comorbid conditions. We determined by using the Ohio Dysautonomia questionnaire the medical…
OBJECTIVE. The purpose of this study was to investigate the immediate and long-term outcomes after fluoroscopically guided balloon dilation of esophageal strictures in a series of patients with dystrophic epidermolysis bullosa (DEB). MATERIALS AND…
OBJECTIVE: We conducted a nationwide survey to determine the prevalence of common gastrointestinal and nutritional disorders in Rett syndrome (RTT) based on parental reporting and related the occurrence of these problems to age and methyl-CpG-binding…
Emergency department use contributes to high end-of-life costs and is potentially burdensome for patients and family members. We examined emergency department use in the last months of life for patients age sixty-five or older who died while enrolled…
