Browse Items (385 total)

© 2016 Downs et al. Rett syndrome is a pervasive neurodevelopmental disorder associated with a pathogenic mutation on the MECP2 gene. Impaired movement is a fundamental component and the Rett Syndrome Gross Motor Scale was developed to measure gross…

Friedreich's ataxia is the most common autosomal recessive form of neurodegenerative ataxia. We present a longitudinal study on the gait pattern of children and adolescents affected by Friedreich's ataxia using Gait Analysis and the Scale for the…

Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.

Aims Despite the growing number of children within the UK who suffer life-limiting or life-threatening conditions, there remain significant barriers to the timely integration of palliative care services for many patients. We sought to evaluate…

Prenatal screening can lead to the detection and diagnosis of significantly life-limiting conditions affecting the unborn child. Recognizing the difficulties facing parents who decide to continue the pregnancy, some have proposed perinatal hospice as…

Aim: To describe temporal and spatial gait characteristics in individuals with Cri du Chat syndrome (CdCS) and to explore the effects of performing concurrent manual tasks while walking. Methods: The gait parameters of 14 participants with CdCS (mean…

BACKGROUND: Pompe disease (PD) is a disorder of lysosomal glycogen storage. The introduction of enzyme replacement therapy (ERT) has shifted the focus of care from survival to quality of life. The presence of lower urinary tract symptoms (LUTS) and…

Objectives * Compare purposeful and non-purposeful continuing bonds between one and two years post-death. * Compare comforting and discomforting effects of continuing bonds between one and two years post-death. Original Research Background.…

INTRODUCTION: Cancer remains a major cause of death in children, but recent advances in supportive care and progress in the use of chemotherapy have considerably improved the prognosis. The need for intensive care management in pediatric oncology…

Learning Objectives: Care at end of life in adults is known to account for a large proportion of health care resources. Current national estimates of outcomes in hospitalized children with end of life care are unknown. Using a large nationwide…

Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and…

If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this…

Objective: To explore pediatric emergency medicine
healthcare providers’ perspectives regarding their
role in pediatric palliative care.
Methodology: A qualitative study was conducted at the
CHU Sainte-Justine from January to April 2016.…

Understanding research priorities in children's palliative care is important for nurses, following the phasing out of the Liverpool Care Pathway, which has led to a change in palliative and end of life care ( Department of Health (DH) 2014 ).…

Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being…

Background: The majority of children die in pediatric
hospitals after a decision to withhold or withdraw
life sustaining interventions. Tensions and conflicts
at the end of life (EOL) are not rare in pediatric
hospitals.
Objective: To investigate how…

OBJECTIVE:
Parents of seriously ill children require attention to their spiritual needs, especially during end-of-life care. The objective of this study was to characterize parental attitudes regarding physician inquiry into their belief system.…

OBJECTIVE: Parents of seriously ill children require attention to their spiritual needs, especially during end-of-life care. The objective of this study was to characterize parental attitudes regarding physician inquiry into their belief system.…

Palliative care is delivered in almost all settings where healthcare is provided, including neonatal units, paediatric services, acute hospitals, general practices, community settings and aged care services. People who are dying have needs which…

OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness…

OBJECTIVES:
Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative…

In this study we utilized the framework of patient-centered communication to explore the influence of physician gender and physician parental status on (1) physician-parent communication and (2) care of pediatric patients at the end of life (EOL).…

Objective: The objective of this exploratory study is to describe communication between physicians and the actor parent of a standardized 8-year-old patient in respiratory distress who was nearing the end of life. Methods: Thirteen pediatric…

Background Rare causes of inherited movement disorders often present with a debilitating phenotype of dystonia, sometimes combined with parkinsonism and other neurological signs. Since these disorders are often resistant to medications, DBS may be…

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The evidence base underpinning paediatric palliative care (PPC) needs to be expanded and be made robust if advances in practice and reduction in suffering are to be achieved. While current guidance emphasises the need to include children and young…

BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or…

This article describes the implementation and evaluation of a new partnership between a children's hospice service and an NHS children's community nursing team to support children's palliative care in the community. Aims and outcomes of the service…

This article describes the implementation and evaluation of a new partnership between a children's hospice service and an NHS children's community nursing team to support children's palliative care in the community. Aims and outcomes of the service…

BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…

Drooling is a common problem in children with progressive dystonia. The authors noted a 58% incidence of drooling in 22/38 children with MEGDEL, a rare neurodegenerative cause of dystonia and report on the clinical course of four patients. Drooling…

The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this…

Abstract
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations.…

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